chapter 4. studies on seizures and epilepsy
Transcription
chapter 4. studies on seizures and epilepsy
THE OFFICIAL PATIENT’S SOURCEBOOK on J AMES N. P ARKER , M.D. AND P HILIP M. P ARKER , P H .D., E DITORS ii ICON Health Publications ICON Group International, Inc. 4370 La Jolla Village Drive, 4th Floor San Diego, CA 92122 USA Copyright Ó2003 by ICON Group International, Inc. Copyright Ó2003 by ICON Group International, Inc. All rights reserved. This book is protected by copyright. No part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publisher. Printed in the United States of America. Last digit indicates print number: 10 9 8 7 6 4 5 3 2 1 Publisher, Health Care: Tiffany LaRochelle Editor(s): James Parker, M.D., Philip Parker, Ph.D. Publisher’s note: The ideas, procedures, and suggestions contained in this book are not intended as a substitute for consultation with your physician. All matters regarding your health require medical supervision. As new medical or scientific information becomes available from academic and clinical research, recommended treatments and drug therapies may undergo changes. The authors, editors, and publisher have attempted to make the information in this book up to date and accurate in accord with accepted standards at the time of publication. The authors, editors, and publisher are not responsible for errors or omissions or for consequences from application of the book, and make no warranty, expressed or implied, in regard to the contents of this book. Any practice described in this book should be applied by the reader in accordance with professional standards of care used in regard to the unique circumstances that may apply in each situation, in close consultation with a qualified physician. The reader is advised to always check product information (package inserts) for changes and new information regarding dose and contraindications before taking any drug or pharmacological product. Caution is especially urged when using new or infrequently ordered drugs, herbal remedies, vitamins and supplements, alternative therapies, complementary therapies and medicines, and integrative medical treatments. Cataloging-in-Publication Data Parker, James N., 1961Parker, Philip M., 1960The Official Patient’s Sourcebook on Seizures and Epilepsy: A Revised and Updated Directory for the Internet Age/James N. Parker and Philip M. Parker, editors p. cm. Includes bibliographical references, glossary and index. ISBN: 0-597-83535-7 1. Seizures and Epilepsy-Popular works. I. Title. iii Disclaimer This publication is not intended to be used for the diagnosis or treatment of a health problem or as a substitute for consultation with licensed medical professionals. It is sold with the understanding that the publisher, editors, and authors are not engaging in the rendering of medical, psychological, financial, legal, or other professional services. References to any entity, product, service, or source of information that may be contained in this publication should not be considered an endorsement, either direct or implied, by the publisher, editors or authors. ICON Group International, Inc., the editors, or the authors are not responsible for the content of any Web pages nor publications referenced in this publication. Copyright Notice If a physician wishes to copy limited passages from this sourcebook for patient use, this right is automatically granted without written permission from ICON Group International, Inc. (ICON Group). However, all of ICON Group publications are copyrighted. With exception to the above, copying our publications in whole or in part, for whatever reason, is a violation of copyright laws and can lead to penalties and fines. Should you want to copy tables, graphs or other materials, please contact us to request permission (e-mail: iconedit@san.rr.com). ICON Group often grants permission for very limited reproduction of our publications for internal use, press releases, and academic research. Such reproduction requires confirmed permission from ICON Group International Inc. The disclaimer above must accompany all reproductions, in whole or in part, of this sourcebook. iv Dedication To the healthcare professionals dedicating their time and efforts to the study of seizures and epilepsy. Acknowledgements The collective knowledge generated from academic and applied research summarized in various references has been critical in the creation of this sourcebook which is best viewed as a comprehensive compilation and collection of information prepared by various official agencies which directly or indirectly are dedicated to seizures and epilepsy. All of the Official Patient’s Sourcebooks draw from various agencies and institutions associated with the United States Department of Health and Human Services, and in particular, the Office of the Secretary of Health and Human Services (OS), the Administration for Children and Families (ACF), the Administration on Aging (AOA), the Agency for Healthcare Research and Quality (AHRQ), the Agency for Toxic Substances and Disease Registry (ATSDR), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Healthcare Financing Administration (HCFA), the Health Resources and Services Administration (HRSA), the Indian Health Service (IHS), the institutions of the National Institutes of Health (NIH), the Program Support Center (PSC), and the Substance Abuse and Mental Health Services Administration (SAMHSA). In addition to these sources, information gathered from the National Library of Medicine, the United States Patent Office, the European Union, and their related organizations has been invaluable in the creation of this sourcebook. Some of the work represented was financially supported by the Research and Development Committee at INSEAD. This support is gratefully acknowledged. Finally, special thanks are owed to Tiffany LaRochelle for her excellent editorial support. v About the Editors James N. Parker, M.D. Dr. James N. Parker received his Bachelor of Science degree in Psychobiology from the University of California, Riverside and his M.D. from the University of California, San Diego. In addition to authoring numerous research publications, he has lectured at various academic institutions. Dr. Parker is the medical editor for the Official Patient’s Sourcebook series published by ICON Health Publications. Philip M. Parker, Ph.D. Philip M. Parker is the Eli Lilly Chair Professor of Innovation, Business and Society at INSEAD (Fontainebleau, France and Singapore). Dr. Parker has also been Professor at the University of California, San Diego and has taught courses at Harvard University, the Hong Kong University of Science and Technology, the Massachusetts Institute of Technology, Stanford University, and UCLA. Dr. Parker is the associate editor for the Official Patient’s Sourcebook series published by ICON Health Publications. vi About ICON Health Publications In addition to seizures and epilepsy, Official Patient’s Sourcebooks are available for the following related topics: · The Official Patient's Sourcebook on Acute Disseminated Encephalomyelitis · The Official Patient's Sourcebook on Agenesis of the Corpus Callosum · The Official Patient's Sourcebook on Agnosia · The Official Patient's Sourcebook on Arachnoid Cysts · The Official Patient's Sourcebook on Arachnoiditis · The Official Patient's Sourcebook on Binswanger's Disease · The Official Patient's Sourcebook on Brain and Spinal Cord Tumors · The Official Patient's Sourcebook on Central Pain Syndrome · The Official Patient's Sourcebook on Cerebral Atrophy · The Official Patient's Sourcebook on Coma · The Official Patient's Sourcebook on Corticobasal Degeneration · The Official Patient's Sourcebook on Empty Sella Syndrome · The Official Patient's Sourcebook on Headaches · The Official Patient's Sourcebook on Locked in Syndrome · The Official Patient's Sourcebook on Occipital Neuralgia · The Official Patient's Sourcebook on Olivopontocerebellar Atrophy · The Official Patient's Sourcebook on Progressive Multifocal Leukoencephalopathy · The Official Patient's Sourcebook on Pseudotumor Cerebri · The Official Patient's Sourcebook on Stroke · The Official Patient's Sourcebook on Syncope · The Official Patient's Sourcebook on Todd's Paralysis · The Official Patient's Sourcebook on Traumatic Brain Injury · The Official Patient's Sourcebook on Wallenberg's Syndrome To discover more about ICON Health Publications, simply check with your preferred online booksellers, including Barnes & Noble.com and Amazon.com which currently carry all of our titles. Or, feel free to contact us directly for bulk purchases or institutional discounts: ICON Group International, Inc. 4370 La Jolla Village Drive, Fourth Floor San Diego, CA 92122 USA Fax: 858-546-4341 Web site: www.icongrouponline.com/health Contents vii Table of Contents INTRODUCTION...................................................................................... 1 Overview............................................................................................................... 1 Organization......................................................................................................... 3 Scope ..................................................................................................................... 3 Moving Forward................................................................................................... 5 PART I: THE ESSENTIALS ................................................. 7 CHAPTER 1. THE ESSENTIALS ON SEIZURES AND EPILEPSY: GUIDELINES ........................................................................................... 9 Overview............................................................................................................... 9 What Is Epilepsy?............................................................................................... 10 What Causes Epilepsy? ...................................................................................... 12 What Are the Different Kinds of Seizures? ........................................................ 15 What Are the Different Kinds of Epilepsy?........................................................ 17 When Are Seizures Not Epilepsy? ..................................................................... 20 How Is Epilepsy Diagnosed?.............................................................................. 22 Can Epilepsy Be Prevented?............................................................................... 24 How Can Epilepsy Be Treated? .......................................................................... 24 How Does Epilepsy Affect Daily Life? ............................................................... 32 Are There Special Risks Associated with Epilepsy? ........................................... 36 What Research Is Being Done on Epilepsy?....................................................... 38 How Can I Help Research on Epilepsy?............................................................. 39 What to Do If You See Someone Having a Seizure............................................ 41 Information Resources ........................................................................................ 43 More Guideline Sources ..................................................................................... 46 Vocabulary Builder............................................................................................. 58 CHAPTER 2. SEEKING GUIDANCE ....................................................... 67 Overview............................................................................................................. 67 Associations and Seizures and Epilepsy............................................................. 67 Finding More Associations................................................................................. 74 Finding Doctors.................................................................................................. 75 Finding a Neurologist......................................................................................... 76 Selecting Your Doctor ........................................................................................ 77 Working with Your Doctor ................................................................................ 77 Broader Health-Related Resources ..................................................................... 79 Vocabulary Builder............................................................................................. 79 CHAPTER 3. CLINICAL TRIALS AND SEIZURES AND EPILEPSY ........... 81 Overview............................................................................................................. 81 Recent Trials on Seizures and Epilepsy.............................................................. 84 Benefits and Risks............................................................................................. 105 Keeping Current on Clinical Trials.................................................................. 108 viii Contents General References............................................................................................ 109 Vocabulary Builder........................................................................................... 110 PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL................................................ 113 CHAPTER 4. STUDIES ON SEIZURES AND EPILEPSY ........................... 115 Overview........................................................................................................... 115 The Combined Health Information Database ................................................... 115 Federally Funded Research on Seizures and Epilepsy...................................... 123 E-Journals: PubMed Central ............................................................................ 139 The National Library of Medicine: PubMed .................................................... 140 Vocabulary Builder........................................................................................... 155 CHAPTER 5. PATENTS ON SEIZURES AND EPILEPSY.......................... 163 Overview........................................................................................................... 163 Patents on Seizures and Epilepsy..................................................................... 164 Patent Applications on Seizures and Epilepsy................................................. 166 Keeping Current ............................................................................................... 168 CHAPTER 6. BOOKS ON SEIZURES AND EPILEPSY ............................. 171 Overview........................................................................................................... 171 Book Summaries: Federal Agencies .................................................................. 171 Book Summaries: Online Booksellers ............................................................... 180 The National Library of Medicine Book Index ................................................. 181 Chapters on Seizures and Epilepsy................................................................... 185 General Home References ................................................................................. 194 Vocabulary Builder........................................................................................... 194 CHAPTER 7. MULTIMEDIA ON SEIZURES AND EPILEPSY................... 197 Overview........................................................................................................... 197 Video Recordings .............................................................................................. 197 Bibliography: Multimedia on Seizures and Epilepsy ....................................... 209 Vocabulary Builder........................................................................................... 212 CHAPTER 8. PERIODICALS AND NEWS ON SEIZURES AND EPILEPSY 213 Overview........................................................................................................... 213 News Services & Press Releases ....................................................................... 213 Newsletter Articles ........................................................................................... 218 Academic Periodicals covering Seizures and Epilepsy..................................... 219 Vocabulary Builder........................................................................................... 220 CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES ................... 223 Overview........................................................................................................... 223 NIH Guidelines................................................................................................. 223 NIH Databases.................................................................................................. 224 Other Commercial Databases ........................................................................... 231 The Genome Project and Seizures and Epilepsy............................................... 231 Specialized References....................................................................................... 236 Contents ix Vocabulary Builder........................................................................................... 237 CHAPTER 10. DISSERTATIONS ON SEIZURES AND EPILEPSY ............. 239 Overview........................................................................................................... 239 Dissertations on Seizures and Epilepsy............................................................ 239 Keeping Current ............................................................................................... 240 PART III. APPENDICES .................................................. 241 APPENDIX A. RESEARCHING YOUR MEDICATIONS.......................... 243 Overview........................................................................................................... 243 Your Medications: The Basics .......................................................................... 243 Learning More about Your Medications .......................................................... 245 Commercial Databases...................................................................................... 249 Contraindications and Interactions (Hidden Dangers) ................................... 250 A Final Warning .............................................................................................. 251 General References............................................................................................ 252 Vocabulary Builder........................................................................................... 253 APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE ................... 255 Overview........................................................................................................... 255 What Is CAM? ................................................................................................. 255 What Are the Domains of Alternative Medicine?............................................ 256 Can Alternatives Affect My Treatment? ......................................................... 259 Finding CAM References on Seizures and Epilepsy........................................ 260 Additional Web Resources................................................................................ 263 General References............................................................................................ 288 Vocabulary Builder........................................................................................... 289 APPENDIX C. RESEARCHING NUTRITION ......................................... 293 Overview........................................................................................................... 293 Food and Nutrition: General Principles........................................................... 293 Finding Studies on Seizures and Epilepsy ....................................................... 298 Federal Resources on Nutrition........................................................................ 299 Additional Web Resources................................................................................ 300 Vocabulary Builder........................................................................................... 304 APPENDIX D. FINDING MEDICAL LIBRARIES.................................... 307 Overview........................................................................................................... 307 Preparation ....................................................................................................... 307 Finding a Local Medical Library ...................................................................... 308 Medical Libraries Open to the Public............................................................... 308 APPENDIX E. YOUR RIGHTS AND INSURANCE ................................. 315 Overview........................................................................................................... 315 Your Rights as a Patient................................................................................... 315 Patient Responsibilities .................................................................................... 319 Choosing an Insurance Plan............................................................................. 320 Medicare and Medicaid .................................................................................... 322 x Contents NORD’s Medication Assistance Programs ..................................................... 325 Additional Resources ........................................................................................ 326 APPENDIX F. NIH CONSENSUS STATEMENT ON SURGERY FOR EPILEPSY ............................................................................................ 327 Overview........................................................................................................... 327 Abstract ............................................................................................................ 328 What Is Epilepsy?............................................................................................. 328 How Should Patients Be Selected? ................................................................... 330 What Evaluation Is Necessary to Localize Epileptic Foci? .............................. 332 What Procedures Are Appropriate for Specific Epilepsies? ............................. 334 How Should Outcome Be Assessed? ................................................................ 336 Directions for Future Research......................................................................... 337 Conclusions and Recommendations ................................................................. 338 ONLINE GLOSSARIES.................................................... 341 Online Dictionary Directories.......................................................................... 345 SEIZURES AND EPILEPSY GLOSSARY ..................... 347 General Dictionaries and Glossaries ................................................................ 369 INDEX................................................................................... 371 Introduction 1 INTRODUCTION Overview Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.”1 The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that every patient incorporate education into the treatment process. According to the AHRQ: Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don’t know where to look.2 As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, in March 2001 the National Institutes of Health issued the following warning: The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading.3 Quotation from http://www.drkoop.com. The Agency for Healthcare Research and Quality (AHRQ): http://www.ahcpr.gov/consumer/diaginfo.htm. 3 From the NIH, National Cancer Institute (NCI): http://cancertrials.nci.nih.gov/beyond/evaluating.html. 1 2 2 Seizures and Epilepsy Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor’s offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. The Official Patient’s Sourcebook on Seizures and Epilepsy has been created for patients who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to seizures and epilepsy, from the essentials to the most advanced areas of research. The title of this book includes the word “official.” This reflects the fact that the sourcebook draws from public, academic, government, and peerreviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on seizures and epilepsy. Given patients’ increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-ofcharge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current. In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process. We must emphasize that no sourcebook on seizures and epilepsy should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your best option. This sourcebook is no exception. Each patient is unique. Deciding on Introduction 3 appropriate options is always up to the patient in consultation with their physician and healthcare providers. Organization This sourcebook is organized into three parts. Part I explores basic techniques to researching seizures and epilepsy (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to seizures and epilepsy. It also gives you sources of information that can help you find a doctor in your local area specializing in treating seizures and epilepsy. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with seizures and epilepsy. Part II moves on to advanced research dedicated to seizures and epilepsy. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on seizures and epilepsy. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options. Part III provides appendices of useful background reading for all patients with seizures and epilepsy or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with seizures and epilepsy. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with seizures and epilepsy. Scope While this sourcebook covers seizures and epilepsy, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that seizures and epilepsy is often considered a synonym or a condition closely related to the following: · Convulsions 4 Seizures and Epilepsy · Jacksonian Seizure · Jacksonian Seizures · Minor Motor Seizures · Petit Mal Seizures · Psychomotor Seizures · Seizure Disorder · Seizures · Simple Seizure In addition to synonyms and related conditions, physicians may refer to seizures and epilepsy using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for seizures and epilepsy:4 · 345 epilepsy · 345.0 generalized nonconvulsive epilepsy · 345.1 generalized convulsive epilepsy · 345.2 petit mal status · 345.3 grand mal status · 345.4 partial epilepsy, with impairment of consciousness · 345.5 partial epilepsy, without mention of impairment of consciousness · 345.5 partial epilepsy, without mention of impairment of con-sciousness · 345.6 infantile spasms · 345.7 epilepsia partialis continua · 345.8 other forms of epilepsy · 345.9 epilepsy, unspecified · 780.3 convulsions · 780.31 febrile convulsions 4 This list is based on the official version of the World Health Organization’s 9th Revision, International Classification of Diseases (ICD-9). According to the National Technical Information Service, “ICD-9CM extensions, interpretations, modifications, addenda, or errata other than those approved by the U.S. Public Health Service and the Health Care Financing Administration are not to be considered official and should not be utilized. Continuous maintenance of the ICD-9-CM is the responsibility of the federal government.” Introduction · 5 780.39 other convulsions For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to seizures and epilepsy. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians. Moving Forward Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by patients or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful. As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian. Why “Internet age”? All too often, patients diagnosed with seizures and epilepsy will log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. These patients are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with seizures and epilepsy is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion. While we focus on the more scientific aspects of seizures and epilepsy, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find peer groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you the 6 Seizures and Epilepsy most options available in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your treatment plan. The Editors 7 PART I: THE ESSENTIALS ABOUT PART I Part I has been edited to give you access to what we feel are “the essentials” on seizures and epilepsy. The essentials of a disease typically include the definition or description of the disease, a discussion of who it affects, the signs or symptoms associated with the disease, tests or diagnostic procedures that might be specific to the disease, and treatments for the disease. Your doctor or healthcare provider may have already explained the essentials of seizures and epilepsy to you or even given you a pamphlet or brochure describing seizures and epilepsy. Now you are searching for more in-depth information. As editors, we have decided, nevertheless, to include a discussion on where to find essential information that can complement what your doctor has already told you. In this section we recommend a process, not a particular Web site or reference book. The process ensures that, as you search the Web, you gain background information in such a way as to maximize your understanding. Guidelines 9 CHAPTER 1. THE ESSENTIALS ON SEIZURES AND EPILEPSY: GUIDELINES Overview Official agencies, as well as federally funded institutions supported by national grants, frequently publish a variety of guidelines on seizures and epilepsy. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. The great advantage of guidelines over other sources is that they are often written with the patient in mind. Since new guidelines on seizures and epilepsy can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based services that post them. The National Institutes of Health (NIH)5 The National Institutes of Health (NIH) is the first place to search for relatively current patient guidelines and fact sheets on seizures and epilepsy. Originally founded in 1887, the NIH is one of the world’s foremost medical research centers and the federal focal point for medical research in the United States. At any given time, the NIH supports some 35,000 research grants at universities, medical schools, and other research and training institutions, both nationally and internationally. The rosters of those who have conducted research or who have received NIH support over the years include the world’s most illustrious scientists and physicians. Among them are 97 scientists who have won the Nobel Prize for achievement in medicine. 5 Adapted from the NIH: http://www.nih.gov/about/NIHoverview.html. 10 Seizures and Epilepsy There is no guarantee that any one Institute will have a guideline on a specific disease, though the National Institutes of Health collectively publish over 600 guidelines for both common and rare diseases. The best way to access NIH guidelines is via the Internet. Although the NIH is organized into many different Institutes and Offices, the following is a list of key Web sites where you are most likely to find NIH clinical guidelines and publications dealing with seizures and epilepsy and associated conditions: · Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm · National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines available at http://www.nlm.nih.gov/medlineplus/healthtopics.html · National Institute of Neurological Disorders and Stroke (NINDS); http://www.ninds.nih.gov/health_and_medical/disorder_index.htm Among the above, the National Institute of Neurological Disorders and Stroke (NINDS) is particularly noteworthy. The mission of the NINDS is to reduce the burden of neurological disease—a burden borne by every age group, by every segment of society, by people all over the world.6 To support this mission, the NINDS conducts, fosters, coordinates, and guides research on the causes, prevention, diagnosis, and treatment of neurological disorders and stroke, and supports basic research in related scientific areas. The following patient guideline was recently published by the NINDS on seizures and epilepsy. What Is Epilepsy?7 Few experiences match the drama of a convulsive seizure. A person having a severe seizure may cry out, fall to the floor unconscious, twitch or move uncontrollably, drool, or even lose bladder control. Within minutes, the attack is over, and the person regains consciousness but is exhausted and dazed. This is the image most people have when they hear the word epilepsy. However, this type of seizure—a generalized tonic-clonic seizure*—is only one kind of epilepsy. There are many other kinds, each with a different set of symptoms. 6 This paragraph has been adapted from the NINDS: http://www.ninds.nih.gov/about_ninds/mission.htm. “Adapted” signifies that a passage has been reproduced exactly or slightly edited for this book. 7 Adapted from The National Institute of Neurological Disorders and Stroke (NINDS): http://www.ninds.nih.gov/health_and_medical/pubs/seizures_and_epilepsy_htr.htm. Guidelines 11 Epilepsy was one of the first brain disorders to be described. It was mentioned in ancient Babylon more than 3,000 years ago. The strange behavior caused by some seizures has contributed through the ages to many superstitions and prejudices. The word epilepsy is derived from the Greek word for “attack.” People once thought that those with epilepsy were being visited by demons or gods. However, in 400 B.C., the early physician Hippocrates suggested that epilepsy was a disorder of the brain—and we now know that he was right. Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally. Neurons normally generate electrochemical impulses that act on other neurons, glands, and muscles to produce human thoughts, feelings, and actions. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior, or sometimes convulsions, muscle spasms, and loss of consciousness. During a seizure, neurons may fire as many as 500 times a second, much faster than the normal rate of about 80 times a second. In some people, this happens only occasionally; for others, it may happen up to hundreds of times a day. More than 2 million people in the United States—about 1 in 100—have experienced an unprovoked seizure or been diagnosed with epilepsy. For about 80 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. However, about 20 percent of people with epilepsy will continue to experience seizures even with the best available treatment. Doctors call this situation intractable epilepsy. Having a seizure does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy. Epilepsy is not contagious and is not caused by mental illness or mental retardation. Some people with mental retardation may experience seizures, but seizures do not necessarily mean the person has or will develop mental impairment. Many people with epilepsy have normal or above-average intelligence. Famous people who are known or rumored to have had epilepsy include the Russian writer Dostoyevsky, the philosopher Socrates, the military general Napoleon, and the inventor of dynamite, Alfred Nobel, who established the Nobel prize. Several Olympic medalists and other athletes also have had epilepsy. Seizures sometimes do cause brain damage, particularly if they are severe. However, most seizures do not seem to have a detrimental effect on the brain. Any changes that do occur are usually subtle, 12 Seizures and Epilepsy and it is often unclear whether these changes are caused by the seizures themselves or by the underlying problem that caused the seizures. While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92 percent chance of becoming seizurefree by 20 years after their diagnosis. The odds of becoming seizure-free are not as good for adults, or for children with severe epilepsy syndromes, but it is nonetheless possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery. What Causes Epilepsy? Epilepsy is a disorder with many possible causes. Anything that disturbs the normal pattern of neuron activity — from illness to brain damage to abnormal brain development — can lead to seizures. Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, or some combination of these factors. Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy. One of the most-studied neurotransmitters that plays a role in epilepsy is GABA, or gamma-aminobutyric acid, which is an inhibitory neurotransmitter. Research on GABA has led to drugs that alter the amount of this neurotransmitter in the brain or change how the brain responds to it. Researchers also are studying excitatory neurotransmitters such as glutamate. In some cases, the brain’s attempts to repair itself after a head injury, stroke, or other problem may inadvertently generate abnormal nerve connections that lead to epilepsy. Abnormalities in brain wiring that occur during brain development also may disturb neuronal activity and lead to epilepsy. Research has shown that the cell membrane that surrounds each neuron plays an important role in epilepsy. Cell membranes are crucial for neurons to generate electrical impulses. For this reason, researchers are studying details of the membrane structure, how molecules move in and out of Guidelines 13 membranes, and how the cell nourishes and repairs the membrane. A disruption in any of these processes may lead to epilepsy. Studies in animals have shown that, because the brain continually adapts to changes in stimuli, a small change in neuronal activity, if repeated, may eventually lead to fullblown epilepsy. Researchers are investigating whether this phenomenon, called kindling, may also occur in humans. In some cases, epilepsy may result from changes in non-neuronal brain cells called glia. These cells regulate concentrations of chemicals in the brain that can affect neuronal signaling. About half of all seizures have no known cause. However, in other cases, the seizures are clearly linked to infection, trauma, or other identifiable problems. Genetic Factors Research suggests that genetic abnormalities may be some of the most important factors contributing to epilepsy. Some types of epilepsy have been traced to an abnormality in a specific gene. Many other types of epilepsy tend to run in families, which suggests that genes influence epilepsy. Some researchers estimate that more than 500 genes could play a role in this disorder. However, it is increasingly clear that, for many forms of epilepsy, genetic abnormalities play only a partial role, perhaps by increasing a person’s susceptibility to seizures that are triggered by an environmental factor. Several types of epilepsy have now been linked to defective genes for ion channels, the “gates” that control the flow of ions in and out of cells and regulate neuron signaling. Another gene, which is missing in people with progressive myoclonus epilepsy, codes for a protein called cystatin B. This protein regulates enzymes that break down other proteins. Another gene, which is altered in a severe form of epilepsy called LaFora disease, has been linked to a gene that helps to break down carbohydrates. While abnormal genes sometimes cause epilepsy, they also may influence the disorder in subtler ways. For example, one study showed that many people with epilepsy have an abnormally active version of a gene that increases resistance to drugs. This may help explain why anticonvulsant drugs do not work for some people. Genes also may control other aspects of the body’s response to medications and each person’s susceptibility to seizures, or seizure threshold. Abnormalities in the genes that control 14 Seizures and Epilepsy neuronal migration—a critical step in brain development— can lead to areas of misplaced or abnormally formed neurons, or dysplasia, in the brain that can cause epilepsy. In some cases, genes may contribute to development of epilepsy even in people with no family history of the disorder. These people may have a newly developed abnormality, or mutation, in an epilepsyrelated gene. Other Disorders In many cases, epilepsy develops as a result of brain damage from other disorders. For example, brain tumors, alcoholism, and Alzheimer’s disease frequently lead to epilepsy because they alter the normal workings of the brain. Strokes, heart attacks, and other conditions that deprive the brain of oxygen also can cause epilepsy in some cases. About 32 percent of all newly developed epilepsy in elderly people appears to be due to cerebrovascular disease, which reduces the supply of oxygen to brain cells. Meningitis, AIDS, viral encephalitis, and other infectious diseases can lead to epilepsy, as can hydrocephalus—a condition in which excess fluid builds up in the brain. Epilepsy also can result from intolerance to wheat gluten (known as celiac disease), or from a parasitic infection of the brain called neurocysticercosis. Seizures may stop once these disorders are treated successfully. However, the odds of becoming seizure-free after the primary disorder is treated are uncertain and vary depending on the type of disorder, the brain region that is affected, and how much brain damage occurred prior to treatment. Epilepsy is associated with a variety of developmental and metabolic disorders, including cerebral palsy, neurofibromatosis, pyruvate deficiency, tuberous sclerosis, Landau-Kleffner syndrome, and autism. Epilepsy is just one of a set of symptoms commonly found in people with these disorders. Head Injury In some cases, head injury can lead to seizures or epilepsy. Safety measures such as wearing seat belts in cars and using helmets when riding a motorcycle or playing competitive sports can protect people from epilepsy and other problems that result from head injury. Prenatal Injury and Developmental Problems The developing brain is susceptible to many kinds of injury. Maternal infections, poor nutrition, and oxygen deficiencies are just some of the Guidelines 15 conditions that may take a toll on the brain of a developing baby. These conditions may lead to cerebral palsy, which often is associated with epilepsy, or they may cause epilepsy that is unrelated to any other disorders. About 20 percent of seizures in children are due to cerebral palsy or other neurological abnormalities. Abnormalities in genes that control development also may contribute to epilepsy. Advanced brain imaging has revealed that some cases of epilepsy that occur with no obvious cause may be associated with areas of dysplasia in the brain that probably develop before birth. Poisoning Seizures can result from exposure to lead, carbon monoxide, and many other poisons. They also can result from exposure to street drugs and from overdoses of antidepressants and other medications. Seizure Triggers Seizures are often triggered by factors such as lack of sleep, alcohol consumption, stress, or hormonal changes associated with the menstrual cycle. These seizure triggers do not cause epilepsy but can provoke first seizures or cause breakthrough seizures in people who otherwise experience good seizure control with their medication. Sleep deprivation in particular is a universal and powerful trigger of seizures. For this reason, people with epilepsy should make sure to get enough sleep and should try to stay on a regular sleep schedule as much as possible. For some people, light flashing at a certain speed or the flicker of a computer monitor can trigger a seizure; this problem is called photosensitive epilepsy. Smoking cigarettes also can trigger seizures. The nicotine in cigarettes acts on receptors for the excitatory neurotransmitter acetylcholine in the brain, which increases neuronal firing. Seizures are not triggered by sexual activity except in very rare instances. What Are the Different Kinds of Seizures? Doctors have described more than 30 different types of seizures. Seizures are divided into two major categories—partial seizures and generalized seizures. However, there are many different types of seizures in each of these categories. 16 Seizures and Epilepsy Partial Seizures Partial seizures occur in just one part of the brain. About 60 percent of people with epilepsy have partial seizures. These seizures are frequently described by the area of the brain in which they originate. For example, someone might be diagnosed with partial frontal lobe seizures. In a simple partial seizure, the person will remain conscious but may experience unusual feelings or sensations that can take many forms. The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea. He or she also may hear, smell, taste, see, or feel things that are not real. In a complex partial seizure, the person has a change in or loss of consciousness. His or her consciousness may be altered, producing a dreamlike experience. People having a complex partial seizure may display strange, repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a circle. These repetitious movements are called automatisms. They also may fling objects across the room or strike out at walls or furniture as though they are angry or afraid. These seizures usually last just a few seconds. Some people with partial seizures, especially complex partial seizures, may experience auras—unusual sensations that warn of an impending seizure. These auras are actually simple partial seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tends to be stereotyped, or similar every time. The symptoms of partial seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex partial seizure may be misdiagnosed as migraine headaches, which also can cause a dreamlike state. The strange behavior and sensations caused by partial seizures also can be mistaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by a knowledgeable physician to tell the difference between epilepsy and other disorders. Guidelines 17 Generalized Seizures Generalized seizures are a result of abnormal neuronal activity in many parts of the brain. These seizures may cause loss of consciousness, falls, or massive muscle spasms. There are many kinds of generalized seizures. In absence seizures, the person may appear to be staring into space and/or have jerking or twitching muscles. These seizures are sometimes referred to as petit mal seizures, which is an older term. Tonic seizures cause stiffening of muscles of the body, generally those in the back, legs, and arms. Clonic seizures cause repeated jerking movements of muscles on both sides of the body. Myoclonic seizures cause jerks or twitches of the upper body, arms, or legs. Atonic seizures cause a loss of normal muscle tone. The affected person will fall down or may nod his or her head involuntarily. Tonic-clonic seizures cause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness. Tonic-clonic seizures are sometimes referred to by an older term: grand mal seizures. Not all seizures can be easily defined as either partial or generalized. Some people have seizures that begin as partial seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern. Society’s lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person’s control. In some cases, this has led to the affected person being arrested, sued, or placed in a mental institution. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear. What Are the Different Kinds of Epilepsy? Just as there are many different kinds of seizures, there are many different kinds of epilepsy. Doctors have identified hundreds of different epilepsy syndromes—disorders characterized by a specific set of symptoms that include epilepsy. Some of these syndromes appear to be hereditary. For other syndromes, the cause is unknown. Epilepsy syndromes are frequently described by their symptoms or by where in the brain they originate. People should discuss the implications of their type of epilepsy with their doctors to 18 Seizures and Epilepsy understand the full range of symptoms, the possible treatments, and the prognosis. People with absence epilepsy have repeated absence seizures that cause momentary lapses of consciousness. These seizures almost always begin in childhood or adolescence, and they tend to run in families, suggesting that they may be at least partially due to a defective gene or genes. Some people with absence seizures have purposeless movements during their seizures, such as a jerking arm or rapidly blinking eyes. Others have no noticeable symptoms except for brief times when they are “out of it.” Immediately after a seizure, the person can resume whatever he or she was doing. However, these seizures may occur so frequently that the person cannot concentrate in school or other situations. Childhood absence epilepsy usually stops when the child reaches puberty. Absence seizures usually have no lasting effect on intelligence or other brain functions. Psychomotor Epilepsy Psychomotor epilepsy is another term for recurrent partial seizures, especially seizures of the temporal lobe. The term psychomotor refers to the strange sensations, emotions, and behavior seen with these seizures. Temporal Lobe Epilepsy Temporal lobe epilepsy, or TLE, is the most common epilepsy syndrome with partial seizures. These seizures are often associated with auras. TLE often begins in childhood. Research has shown that repeated temporal lobe seizures can cause a brain structure called the hippocampus to shrink over time. The hippocampus is important for memory and learning. While it may take years of temporal lobe seizures for measurable hippocampal damage to occur, this finding underlines the need to treat TLE early and as effectively as possible. Frontal Lobe Epilepsy Frontal lobe epilepsy usually involves a cluster of short seizures with a sudden onset and termination. There are many subtypes of frontal lobe seizures. The symptoms depend on where in the frontal lobe the seizures occur. Guidelines 19 Occipital Lobe Epilepsy Occipital lobe epilepsy usually begins with visual hallucinations, rapid eye blinking, or other eye-related symptoms. Otherwise, it resembles temporal or frontal lobe epilepsy. The symptoms of parietal lobe epilepsy closely resemble those of other types of epilepsy. This may reflect the fact that parietal lobe seizures tend to spread to other areas of the brain. Other Types of Epilepsy There are many other types of epilepsy, each with its own characteristic set of symptoms. Many of these, including Lennox-Gastaut syndrome and Rasmussen’s encephalitis, begin in childhood. Children with Lennox-Gastaut syndrome have severe epilepsy with several different types of seizures, including atonic seizures, which cause sudden falls and are also called drop attacks. This severe form of epilepsy can be very difficult to treat effectively. Rasmussen’s encephalitis is a progressive type of epilepsy in which half of the brain shows continual inflammation. It sometimes is treated with a radical surgical procedure called hemispherectomy (see the section on Surgery). Some childhood epilepsy syndromes, such as childhood absence epilepsy, tend to go into remission or stop entirely during adolescence, whereas other syndromes such as juvenile myoclonic epilepsy are usually present for life once they develop. Seizure syndromes do not always appear in childhood. For example, Ramsay Hunt syndrome type II is a rare and severe progressive type of epilepsy that generally begins in early adulthood and leads to reduced muscle coordination and cognitive abilities in addition to seizures. Benign Epilepsy Syndromes Epilepsy syndromes that do not seem to impair cognitive functions or development are often described as benign. Benign epilepsy syndromes include benign infantile encephalopathy and benign neonatal convulsions. Other syndromes, such as early myoclonic encephalopathy, include neurological and developmental problems. However, these problems may be caused by underlying neurodegenerative processes rather than by the seizures. Epilepsy syndromes in which the seizures and/or the person’s cognitive or motor abilities get worse over time are called progressive epilepsy. 20 Seizures and Epilepsy Infantile Epilepsy Several types of epilepsy begin in infancy. The most common type of infantile epilepsy is infantile spasms, clusters of seizures that usually begin before the age of 6 months. During these seizures the infant may bend and cry out. Anticonvulsant drugs often do not work for infantile spasms, but the seizures can be treated with ACTH (adrenocorticotropic hormone) or prednisone. When Are Seizures Not Epilepsy? While any seizure is cause for concern, having a seizure does not by itself mean a person has epilepsy. First seizures, febrile seizures, nonepileptic events, and eclampsia are examples of seizures that may not be associated with epilepsy. First Seizures Many people have a single seizure at some point in their lives. Often these seizures occur in reaction to anesthesia or a strong drug, but they also may be unprovoked, meaning that they occur without any obvious triggering factor. Unless the person has suffered brain damage or there is a family history of epilepsy or other neurological abnormalities, these single seizures usually are not followed by additional seizures. One recent study that followed patients for an average of 8 years found that only 33 percent of people have a second seizure within 4 years after an initial seizure. People who did not have a second seizure within that time remained seizure-free for the rest of the study. For people who did have a second seizure, the risk of a third seizure was about 73 percent on average by the end of 4 years. When someone has experienced a first seizure, the doctor will usually order an electroencephalogram, or EEG, to determine what type of seizure the person may have had and if there are any detectable abnormalities in the person’s brain waves. The doctor also may order brain scans to identify abnormalities that may be visible in the brain. These tests may help the doctor decide whether or not to treat the person with antiepileptic drugs. In some cases, drug treatment after the first seizure may help prevent future seizures and epilepsy. However, the drugs also can cause detrimental side effects, so doctors prescribe them only when they feel the benefits outweigh the risks. Evidence suggests that it may be beneficial to begin anticonvulsant Guidelines 21 medication once a person has had a second seizure, as the chance of future seizures increases significantly after this occurs. Febrile Seizures Sometimes a child will have a seizure during the course of an illness with a high fever. These seizures are called febrile seizures (febrile is derived from the Latin word for “fever”) and can be very alarming to the parents and other caregivers. In the past, doctors usually prescribed a course of anticonvulsant drugs following a febrile seizure in the hope of preventing epilepsy. However, most children who have a febrile seizure do not develop epilepsy, and long-term use of anticonvulsant drugs in children may damage the developing brain or cause other detrimental side effects. Experts at a 1980 consensus conference coordinated by the National Institutes of Health concluded that preventive treatment after a febrile seizure is generally not warranted unless certain other conditions are present: a family history of epilepsy, signs of nervous system impairment prior to the seizure, or a relatively prolonged or complicated seizure. The risk of subsequent nonfebrile seizures is only 2 to 3 percent unless one of these factors is present. Researchers have now identified several different genes that influence the risk of febrile seizures in certain families. Studying these genes may lead to new understanding of how febrile seizures occur and perhaps point to ways of preventing them. Nonepileptic Events Sometimes people appear to have seizures, even though their brains show no seizure activity. This type of phenomenon has various names, including nonepileptic events and pseudoseizures. Both of these terms essentially mean something that looks like a seizure but isn’t one. Nonepileptic events that are psychological in origin may be referred to as psychogenic seizures. Psychogenic seizures may indicate dependence, a need for attention, avoidance of stressful situations, or specific psychiatric conditions. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. Other people who have psychogenic seizures do not have epilepsy at all. Psychogenic seizures cannot be treated in the same way as epileptic seizures. Instead, they are often treated by mental health specialists. Other nonepileptic events may be caused by narcolepsy, Tourette syndrome, cardiac arrhythmia, and other medical conditions with symptoms that 22 Seizures and Epilepsy resemble seizures. Because symptoms of these disorders can look very much like epileptic seizures, they are often mistaken for epilepsy. Distinguishing between true epileptic seizures and nonepileptic events can be very difficult and requires a thorough medical assessment, careful monitoring, and knowledgeable health professionals. Improvements in brain scanning and monitoring technology may improve diagnosis of nonepileptic events in the future. Eclampsia Eclampsia is a life-threatening condition that can develop in pregnant women. Its symptoms include sudden elevations of blood pressure and seizures. Pregnant women who develop unexpected seizures should be rushed to a hospital immediately. Eclampsia can be treated in a hospital setting and usually does not result in additional seizures or epilepsy once the pregnancy is over. How Is Epilepsy Diagnosed? Doctors have developed a number of different tests to determine whether a person has epilepsy and, if so, what kind of seizures the person has. In some cases, people may have symptoms that look very much like a seizure but in fact are nonepileptic events caused by other disorders. Even doctors may not be able to tell the difference between these disorders and epilepsy without close observation and intensive testing. EEG Monitoring An EEG records brain waves detected by electrodes placed on the scalp. This is the most common diagnostic test for epilepsy and can detect abnormalities in the brain’s electrical activity. People with epilepsy frequently have changes in their normal pattern of brain waves, even when they are not experiencing a seizure. While this type of test can be very useful in diagnosing epilepsy, it is not foolproof. Some people continue to show normal brain wave patterns even after they have experienced a seizure. In other cases, the unusual brain waves are generated deep in the brain where the EEG is unable to detect them. Many people who do not have epilepsy also show some unusual brain activity on an EEG. Whenever possible, an EEG should be performed within 24 hours of a patient’s first seizure. Ideally, EEGs should be performed while the patient is sleeping as well as when he Guidelines 23 or she is awake, because brain activity during sleep is often quite different than at other times. Video monitoring is often used in conjunction with EEG to determine the nature of a person’s seizures. It also can be used in some cases to rule out other disorders such as cardiac arrhythmia or narcolepsy that may look like epilepsy. In some cases, doctors may use an experimental diagnostic technique called a magnetoencephalogram, or MEG. MEG detects the magnetic signals generated by neurons to allow doctors to monitor brain activity at different points in the brain over time, revealing different brain functions. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG. Brain Scans One of the most important ways of diagnosing epilepsy is through the use of brain scans. The most commonly used brain scans include CT (computed tomography), PET (positron emission tomography) and MRI (magnetic resonance imaging). CT and MRI scans reveal the structure of the brain, which can be useful for identifying brain tumors, cysts, and other structural abnormalities. PET and an adapted kind of MRI called functional MRI (fMRI) can be used to monitor the brain’s activity and detect abnormalities in how it works. SPECT (single photon emission computed tomography) is a relatively new kind of brain scan that is sometimes used to locate seizure foci in the brain. Doctors also are experimenting with brain scans called magnetic resonance spectroscopy (MRS) that can detect abnormalities in the brain’s biochemical processes, and with near-infrared spectroscopy, a technique that can detect oxygen levels in brain tissue. Medical History Taking a detailed medical history, including symptoms and duration of the seizures, is still one of the best methods available to determine if a person has epilepsy and what kind of seizures they have. The doctor will ask questions about the seizures and any past illnesses or other symptoms a person may have had. Since people who have suffered a seizure often do not remember what happened, caregivers’ accounts of the seizure are vital to this evaluation. 24 Seizures and Epilepsy Blood Tests Doctors often take blood samples for testing, particularly when they are examining a child. These blood samples are often screened for metabolic or genetic disorders that may be associated with the seizures. They also may be used to check for underlying problems such as infections, lead poisoning, anemia, and diabetes that may be causing or triggering the seizures. Developmental, Neurological, and Behavioral Tests Doctors often use tests devised to measure motor abilities, behavior, and intellectual capacity as a way to determine how the epilepsy is affecting that person. These tests also can provide clues about what kind of epilepsy the person has. Can Epilepsy Be Prevented? Many cases of epilepsy can be prevented by wearing seatbelts and bicycle helmets, putting children in car seats, and other measures that prevent head injury and other trauma. Prescribing medication after first or second seizures or febrile seizures also may help prevent epilepsy in some cases. Good prenatal care, including treatment of high blood pressure and infections during pregnancy, can prevent brain damage in the developing baby that may lead to epilepsy and other neurological problems later. Treating cardiovascular disease, high blood pressure, infections, and other disorders that can affect the brain during adulthood and aging also may prevent many cases of epilepsy. Finally, identifying the genes for many neurological disorders can provide opportunities for genetic screening and prenatal diagnosis that may ultimately prevent many cases of epilepsy. How Can Epilepsy Be Treated? Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent — about 600,000 people with epilepsy in the United States — have intractable seizures, and another 400,000 feel they get inadequate relief from available Guidelines 25 treatments. These statistics make it clear that improved treatments are desperately needed. Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals, or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care. Once epilepsy is diagnosed, it is important to begin treatment as soon as possible. Research suggests that medication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established. Medications By far the most common approach to treating epilepsy is to prescribe antiepileptic drugs. The first effective antiepileptic drugs were bromides, introduced by an English physician named Sir Charles Locock in 1857. He noticed that bromides had a sedative effect and seemed to reduce seizures in some patients. More than 20 different antiepileptic drugs are now on the market, all with different benefits and side effects. The choice of which drug to prescribe, and at what dosage, depends on many different factors, including the type of seizures a person has, the person’s lifestyle and age, how frequently the seizures occur, and, for a woman, the likelihood that she will become pregnant. People with epilepsy should follow their doctor’s advice and share any concerns they may have regarding their medication. Doctors seeing a patient with newly developed epilepsy often prescribe carbamazapine, valproate, or phenytoin first, unless the epilepsy is a type that is known to require a different kind of treatment. For absence seizures, ethosuximide is often the primary treatment. Other commonly prescribed drugs include clonazepam, phenobarbital, and primidone. In recent years, a number of new drugs have become available. These include tiagabine, lamotrigine, gabapentin, topiramate, levetiracetam, felbamate, and zonisamide, as well as oxcarbazapine, a drug that is similar to carbamazapine but has fewer side effects. These new drugs may have advantages for many patients. Other drugs are used in combination with one of the standard drugs or for intractable seizures that do not respond to other 26 Seizures and Epilepsy medications. A few drugs, such as fosphenytoin, are approved for use only in hospital settings to treat specific problems such as status epilepticus (see section, “Are There Special Risks Associated With Epilepsy?”). For people with stereotyped recurrent severe seizures that can be easily recognized by the person’s family, the drug diazepam is now available as a gel that can be administered rectally by a family member. This method of drug delivery may be able to stop prolonged seizures before they develop into status epilepticus. For most people with epilepsy, seizures can be controlled with just one drug at the optimal dosage. Combining medications usually amplifies side effects such as fatigue and decreased appetite, so doctors usually prescribe monotherapy, or the use of just one drug, whenever possible. Combinations of drugs are sometimes prescribed if monotherapy fails to effectively control a patient’s seizures. The number of times a person needs to take medication each day is usually determined by the drug’s half-life, or the time it takes for half the drug dose to be metabolized or broken down into other substances in the body. Some drugs, such as phenytoin and phenobarbital, only need to be taken once a day, while others such as valproate must be taken more frequently. Most side effects of antiepileptic drugs are relatively minor, such as fatigue, dizziness, or weight gain. However, severe and life-threatening side effects such as allergic reactions can occur. Epilepsy medication also may predispose people to developing depression or psychoses. People with epilepsy should consult a doctor immediately if they develop any kind of rash while on medication, or if they find themselves depressed or otherwise unable to think in a rational manner. Other danger signs that should be discussed with a doctor immediately are extreme fatigue, staggering or other movement problems, and slurring of words. People with epilepsy should be aware that their epilepsy medication can interact with many other drugs in potentially harmful ways. For this reason, people with epilepsy should always tell doctors who treat them which medications they are taking. Women also should know that some antiepileptic drugs can interfere with the effectiveness of oral contraceptives, and they should discuss this possibility with their doctors. Since people can become more sensitive to medications as they age, they should have their blood levels of medication checked occasionally to see if the dose needs to be adjusted. The effects of a particular medication also sometimes wear off over time, leading to an increase in seizures if the dose is not adjusted. People should know that some citrus fruit, in particular Guidelines 27 grapefruit juice, may interfere with breakdown of many drugs. This can cause too much of the drug to build up in their bodies, often worsening the side effects. Tailoring the Dosage of Antiepileptic Drugs When a person starts a new epilepsy drug, it is important to tailor the dosage to achieve the best results. People’s bodies react to medications in very different and sometimes unpredictable ways, so it may take some time to find the right drug at the right dose to provide optimal control of seizures while minimizing side effects. A drug that has no effect or very bad side effects at one dose may work very well at another dose. Doctors will usually prescribe a low dose of the new drug initially and monitor blood levels of the drug to determine when the best possible dose has been reached. Generic versions are available for many antiepileptic drugs. The chemicals in generic drugs are exactly the same as in the brand-name drugs, but they may be absorbed or processed differently in the body because of the way they are prepared. Therefore, patients should always check with their doctors before switching to a generic version of their medication. Discontinuing Medication Some doctors will advise people with epilepsy to discontinue their antiepileptic drugs after two years have passed without a seizure. Others feel it is better to wait for four to five years. Discontinuing medication should only be done with a doctor’s advice and supervision. It is very important to continue taking epilepsy medication for as long as the doctor prescribes it. People also should ask the doctor or pharmacist ahead of time what they should do if they miss a dose. Discontinuing medication without a doctor’s advice is one of the major reasons people who have been seizure-free begin having new seizures. Seizures that result from suddenly stopping medication can be very serious and can lead to status epilepticus. Furthermore, there is some evidence that uncontrolled seizures trigger changes in neurons that can make it more difficult to treat the seizures in the future. The chance that a person will eventually be able to discontinue medication varies depending on the person’s age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 28 Seizures and Epilepsy 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with partial seizures, and those who continue to have abnormal EEG results while on medication. Surgery When seizures cannot be adequately controlled by medications, doctors may recommend that the person be evaluated for surgery. Most surgery for epilepsy is performed by teams of doctors at medical centers. To decide if a person may benefit from surgery, doctors consider the type or types of seizures he or she has. They also take into account the brain region involved and how important that region is for everyday behavior. Surgeons usually avoid operating in areas of the brain that are necessary for speech, language, hearing, or other important abilities. Doctors may perform tests such as a Wada test (administration of the drug amobarbitol into the carotid artery) to find areas of the brain that control speech and memory. They often monitor the patient intensively prior to surgery in order to pinpoint the exact location in the brain where seizures begin. They also may use implanted electrodes to record brain activity from the surface of the brain. This yields better information than an external EEG. A 1990 National Institutes of Health consensus conference on surgery for epilepsy concluded that there are three broad categories of epilepsy that can be treated successfully with surgery. These include partial seizures, seizures that begin as partial seizures before spreading to the rest of the brain, and unilateral multifocal epilepsy with infantile hemiplegia (such as Rasmussen’s encephalitis). Doctors generally recommend surgery only after patients have tried two or three different medications without success, or if there is an identifiable brain lesion — a damaged or abnormally functioning area — believed to cause the seizures. If a person is considered a good candidate for surgery and has seizures that cannot be controlled with available medication, experts generally agree that surgery should be performed as early as possible. It can be difficult for a person who has had years of seizures to fully re-adapt to a seizure-free life if the surgery is successful. The person may never have had an opportunity to develop independence and he or she may have had difficulties with school and work that could have been avoided with earlier treatment. Surgery Guidelines 29 should always be performed with support from rehabilitation specialists and counselors who can help the person deal with the many psychological, social, and employment issues he or she may face. While surgery can significantly reduce or even halt seizures for some people, it is important to remember that any kind of surgery carries some amount of risk (usually small). Surgery for epilepsy does not always successfully reduce seizures and it can result in cognitive or personality changes, even in people who are excellent candidates for surgery. Patients should ask their surgeon about his or her experience, success rates, and complication rates with the procedure they are considering. Even when surgery completely ends a person’s seizures, it is important to continue taking seizure medication for some time to give the brain time to re-adapt. Doctors generally recommend medication for 2 years after a successful operation to avoid new seizures. Surgery to Treat Underlying Conditions In cases where seizures are caused by a brain tumor, hydrocephalus, or other conditions that can be treated with surgery, doctors may operate to treat these underlying conditions. In many cases, once the underlying condition is successfully treated, a person’s seizures will stop as well. Surgery to Remove a Seizure Focus The most common type of surgery for epilepsy is removal of a seizure focus, or small area of the brain where seizures originate. This type of surgery, which doctors may refer to as a lobectomy or lesionectomy, is appropriate only for partial seizures that originate in just one area of the brain. In general, people have a better chance of becoming seizure-free after surgery if they have a small, well-defined seizure focus. Lobectomies have a 55-70 percent success rate when the type of epilepsy and the seizure focus is welldefined. The most common type of lobectomy is a temporal lobe resection, which is performed for people with temporal lobe epilepsy. Temporal lobe resection leads to a significant reduction or complete cessation of seizures about 70 - 90 percent of the time. 30 Seizures and Epilepsy Multiple Subpial Transection When seizures originate in part of the brain that cannot be removed, surgeons may perform a procedure called a multiple subpial transection. In this type of operation, which was first described in 1989, surgeons make a series of cuts that are designed to prevent seizures from spreading into other parts of the brain while leaving the person’s normal abilities intact. About 70 percent of patients who undergo a multiple subpial transection have satisfactory improvement in seizure control. Corpus Callosotomy Corpus callosotomy, Corpus callosotomy, or severing the network of neural connections between the right and left halves, or hemispheres, of the brain, is done primarily in children with severe seizures that start in one half of the brain and spread to the other side. Corpus callosotomy can end drop attacks and other generalized seizures. However, the procedure does not stop seizures in the side of the brain where they originate, and these partial seizures may even increase after surgery. Hemispherectomy This procedure, which removes half of the brain’s cortex, or outer layer, is used only for children who have Rasmussen’s encephalitis or other severe damage to one brain hemisphere and who also have seizures that do not respond well to medication. While this type of surgery is very radical and is performed only as a last resort, children often recover very well from the procedure, and their seizures usually are greatly reduced or may cease altogether. With intense rehabilitation, they often recover nearly normal abilities. Since the chance of a full recovery is best in young children, hemispherectomy should be performed as early in a child’s life as possible. It is almost never performed in children older than 13. Devices The vagus nerve stimulator was approved by the U.S. Food and Drug Administration (FDA) in 1997 for use in people with seizures that are not well-controlled by medication. The vagus nerve stimulator is a batterypowered device that is surgically implanted under the skin of the chest, much like a pacemaker, and is attached to the vagus nerve in the lower neck. Guidelines 31 This device delivers short bursts of electrical energy to the brain via the vagus nerve. On average, this stimulation reduces seizures by about 20-40 percent. Patients usually cannot stop taking epilepsy medication because of the stimulator, but they often experience fewer seizures and they may be able to reduce the dose of their medication. Side effects of the vagus nerve stimulator are generally mild, but may include ear pain, a sore throat, or nausea. Adjusting the amount of stimulation can usually eliminate these side effects. The batteries in the vagus nerve stimulator need to be replaced about once every 5 years; this requires a minor operation that can usually be performed as an outpatient procedure. Several new devices may become available for epilepsy in the future. Researchers are studying whether transcranial magnetic stimulation, a procedure which uses a strong magnet held outside the head to influence brain activity, may reduce seizures. They also hope to develop implantable devices that can deliver drugs to specific parts of the brain. Diet Studies have shown that, in some cases, children may experience fewer seizures if they maintain a strict diet rich in fats and low in carbohydrates. This unusual diet, called the ketogenic diet, causes the body to break down fats instead of carbohydrates to survive. This condition is called ketosis. One study of 150 children whose seizures were poorly controlled by medication found that about one-fourth of the children had a 90 percent or better decrease in seizures with the ketogenic diet, and another half of the group had a 50 percent or better decrease in their seizures. Moreover, some children can discontinue the ketogenic diet after several years and remain seizure-free. The ketogenic diet is not easy to maintain, as it requires strict adherence to an unusual and limited range of foods. Possible side effects include retarded growth due to nutritional deficiency and a buildup of uric acid in the blood, which can lead to kidney stones. People who try the ketogenic diet should seek the guidance of a dietician to ensure that it does not lead to serious nutritional deficiency. Researchers are not sure how ketosis inhibits seizures. One study showed that a byproduct of ketosis called beta-hydroxybutyrate (BHB) inhibits seizures in animals. If BHB also works in humans, researchers may eventually be able to develop drugs that mimic the seizure-inhibiting effects of the ketogenic diet. 32 Seizures and Epilepsy Other Treatment Strategies Researchers are studying whether biofeedback—a strategy in which individuals learn to control their own brain waves—may be useful in controlling seizures. However, this type of therapy is controversial and most studies have shown discouraging results. Taking large doses of vitamins generally does not help a person’s seizures and may even be harmful in some cases. However, a good diet and some vitamin supplements, particularly folic acid, may help reduce some birth defects and medicationrelated nutritional deficiencies. Use of non-vitamin supplements such as melatonin is controversial and can be risky. One study showed that melatonin may reduce seizures in some children, while another found that the risk of seizures increased measurably with melatonin. Most non-vitamin supplements such as those found in health food stores are not regulated by the FDA, so their true effects and their interactions with other drugs are largely unknown. How Does Epilepsy Affect Daily Life? Most people with epilepsy lead outwardly normal lives. Approximately 80 percent can be significantly helped by modern therapies, and some may go months or years between seizures. However, epilepsy can and does affect daily life for people with epilepsy, their families, and their friends. People with severe seizures that resist treatment have, on average, a shorter life expectancy and an increased risk of cognitive impairment, particularly if the seizures developed in early childhood. These impairments may be related to the underlying conditions that cause epilepsy or to epilepsy treatment rather than the epilepsy itself. Behavior and Emotions It is not uncommon for people with epilepsy, especially children, to develop behavioral and emotional problems. Sometimes these problems are caused by embarrassment or frustration associated with epilepsy. Other problems may result from bullying, teasing, or avoidance in school and other social settings. In children, these problems can be minimized if parents encourage a positive outlook and independence, do not reward negative behavior with unusual amounts of attention, and try to stay attuned to their child’s needs and feelings. Families must learn to accept and live with the seizures without blaming or resenting the affected person. Counseling services can help families cope with epilepsy in a positive manner. Epilepsy support groups Guidelines 33 also can help by providing a way for people with epilepsy and their family members to share their experiences, frustrations, and tips for coping with the disorder. People with epilepsy have an increased risk of poor self-esteem, depression, and suicide. These problems may be a reaction to a lack of understanding or discomfort about epilepsy that may result in cruelty or avoidance by other people. Many people with epilepsy also live with an ever-present fear that they will have another seizure. Driving and Recreation For many people with epilepsy, the risk of seizures restricts their independence, in particular the ability to drive. Most states and the District of Columbia will not issue a driver’s license to someone with epilepsy unless the person can document that they have gone a specific amount of time without a seizure (the waiting period varies from a few months to several years). Some states make exceptions for this policy when seizures don’t impair consciousness, occur only during sleep, or have long auras or other warning signs that allow the person to avoid driving when a seizure is likely to occur. Studies show that the risk of having a seizure-related accident decreases as the length of time since the last seizure increases. One study found that the risk of having a seizure-related motor vehicle accident is 93 percent less in people who wait at least 1 year after their last seizure before driving, compared to people who wait for shorter intervals. The risk of seizures also restricts people’s recreational choices. For instance, people with epilepsy should not participate in sports such as skydiving or motor racing where a moment’s inattention could lead to injury. Other activities, such as swimming and sailing, should be done only with precautions and/or supervision. However, jogging, football, and many other sports are reasonably safe for a person with epilepsy. Studies to date have not shown any increase in seizures due to sports, although these studies have not focused on any activity in particular. There is some evidence that regular exercise may even improve seizure control in some people. Sports are often such a positive factor in life that it is best for the person to participate, although the person with epilepsy and the coach or other leader should take appropriate safety precautions. It is important to take steps to avoid potential sports-related problems such as dehydration, overexertion, and hypoglycemia, as these problems can increase the risk of seizures. 34 Seizures and Epilepsy Education and Employment By law, people with epilepsy or other handicaps in the United States cannot be denied employment or access to any educational, recreational, or other activity because of their seizures. However, one survey showed that only about 56 percent of people with epilepsy finish high school and about 15 percent finish college — rates much lower than those for the general population. The same survey found that about 25 percent of working-age people with epilepsy are unemployed. These numbers indicate that significant barriers still exist for people with epilepsy in school and work. Restrictions on driving limit the employment opportunities for many people with epilepsy, and many find it difficult to face the misunderstandings and social pressures they encounter in public situations. Antiepileptic drugs also may cause side effects that interfere with concentration and memory. Children with epilepsy may need extra time to complete schoolwork, and they sometimes may need to have instructions or other information repeated for them. Teachers should be told what to do if a child in their classroom has a seizure, and parents should work with the school system to find reasonable ways to accommodate any special needs their child may have. Pregnancy and Motherhood Women with epilepsy are often concerned about whether they can become pregnant and have a healthy child. This is usually possible. While some seizure medications and some types of epilepsy may reduce a person’s interest in sexual activity, most people with epilepsy can become pregnant. Moreover, women with epilepsy have a 90 percent or better chance of having a normal, healthy baby, and the risk of birth defects is only about 4-6 percent. The risk that children of parents with epilepsy will develop epilepsy themselves is only about 5 percent unless the parent has a clearly hereditary form of the disorder. Parents who are worried that their epilepsy may be hereditary may wish to consult a genetic counselor to determine what the risk might be. Amniocentesis and high-level ultrasound can be performed during pregnancy to ensure that the baby is developing normally, and a procedure called a maternal serum alpha-fetoprotein test can be used for prenatal diagnosis of many conditions if a problem is suspected. There are several precautions women can take before and during pregnancy to reduce the risks associated with pregnancy and delivery. Women who are thinking about becoming pregnant should talk with their doctors to learn any special risks associated with their epilepsy and the medications they may be taking. Some seizure medications, particularly valproate, Guidelines 35 trimethadione, and phenytoin, are known to increase the risk of having a child with birth defects such as cleft palate, heart problems, or finger and toe defects. For this reason, a woman’s doctor may advise switching to other medications during pregnancy. Whenever possible, a woman should allow her doctor enough time to properly change medications, including phasing in the new medications and checking to determine when blood levels are stabilized, before she tries to become pregnant. Women should also begin prenatal vitamin supplements — especially with folic acid, which may reduce the risk of some birth defects — well before pregnancy. Women who discover that they are pregnant but have not already spoken with their doctor about ways to reduce the risks should do so as soon as possible. However, they should continue taking seizure medication as prescribed until that time to avoid preventable seizures. Seizures during pregnancy can harm the developing baby or lead to miscarriage, particularly if the seizures are severe. Nevertheless, many women who have seizures during pregnancy have normal, healthy babies. Women with epilepsy sometimes experience a change in their seizure frequency during pregnancy, even if they do not change medications. About 25 to 40 percent of women have an increase in their seizure frequency while they are pregnant, while other women may have fewer seizures during pregnancy. The frequency of seizures during pregnancy may be influenced by a variety of factors, including the woman’s increased blood volume during pregnancy, which can dilute the effect of medication. Women should have their blood levels of seizure medications monitored closely during and after pregnancy, and the medication dosage should be adjusted accordingly. Pregnant women with epilepsy should take prenatal vitamins and get plenty of sleep to avoid seizures caused by sleep deprivation. They also should take vitamin K supplements after 34 weeks of pregnancy to reduce the risk of a blood-clotting disorder in infants called neonatal coagulopathy that can result from fetal exposure to epilepsy medications. Finally, they should get good prenatal care, avoid tobacco, caffeine, alcohol, and illegal drugs, and try to avoid stress. Labor and delivery usually proceed normally for women with epilepsy, although there is a slightly increased risk of hemorrhage, eclampsia, premature labor, and cesarean section. Doctors can administer antiepileptic drugs intravenously and monitor blood levels of anticonvulsant medication during labor to reduce the risk that the labor will trigger a seizure. Babies sometimes have symptoms of withdrawal from the mother’s seizure medication after they are born, but these problems wear off in a few weeks or months and usually do not cause serious or long-term effects. A mother’s 36 Seizures and Epilepsy blood levels of anticonvulsant medication should be checked frequently after delivery as medication often needs to be decreased. Epilepsy medications need not influence a woman’s decision about breastfeeding her baby. Only minor amounts of epilepsy medications are secreted in breast milk; usually not enough to harm the baby and much less than the baby was exposed to in the womb. On rare occasions, the baby may become excessively drowsy or feed poorly, and these problems should be closely monitored. However, experts believe the benefits of breast-feeding outweigh the risks except in rare circumstances. To increase doctors’ understanding of how different epilepsy medications affect pregnancy and the chances of having a healthy baby, Massachusetts General Hospital has begun a nationwide registry for women who take antiepileptic drugs while pregnant. Women who enroll in this program are given educational materials on pre-conception planning and perinatal care and are asked to provide information about the health of their children (this information is kept confidential). Women and physicians can contact this registry by calling 1-888-233-2334 or 617-726-7739 (fax: 617-724-8307). Women with epilepsy should be aware that some epilepsy medications can interfere with the effectiveness of oral contraceptives. Women who wish to use oral contraceptives to prevent pregnancy should discuss this with their doctors, who may be able to prescribe a different kind of antiepileptic medication or suggest other ways of avoiding an unplanned pregnancy. Are There Special Risks Associated with Epilepsy? Although most people with epilepsy lead full, active lives, they are at special risk for two life-threatening conditions: status epilepticus and sudden unexplained death. Status Epilepticus Status epilepticus is a severe, life-threatening condition in which a person either has prolonged seizures or does not fully regain consciousness between seizures. The amount of time in a prolonged seizure that must pass before a person should be diagnosed with status epilepticus is a subject of debate. Many doctors now diagnose status epilepticus if a person has been in a prolonged seizure for 5 minutes. However, other doctors use more conservative definitions of this condition and may not diagnose status Guidelines 37 epilepticus unless the person has had a prolonged seizure of 10 minutes or even 30 minutes. Status epilepticus affects about 195,000 people each year in the United States and results in about 42,000 deaths. While people with epilepsy are at an increased risk for status epilepticus, about 60 percent of people who develop this condition have no previous seizure history. These cases often result from tumors, trauma, or other problems that affect the brain and may themselves be life-threatening. While most seizures do not require emergency medical treatment, someone with a prolonged seizure lasting more than 5 minutes may be in status epilepticus and should be taken to an emergency room immediately. It is important to treat a person with status epilepticus as soon as possible. One study showed that 80 percent of people in status epilepticus who received medication within 30 minutes of seizure onset eventually stopped having seizures, whereas only 40 percent recovered if 2 hours had passed before they received medication. Doctors in a hospital setting can treat status epilepticus with several different drugs and can undertake emergency lifesaving measures, such as administering oxygen, if necessary. People in status epilepticus do not always have severe convulsive seizures. Instead, they may have repeated or prolonged nonconvulsive seizures. This type of status epilepticus may appear as a sustained episode of confusion or agitation in someone who does not ordinarily have that kind of mental impairment. While this type of episode may not seem as severe as convulsive status epilepticus, it should still be treated as an emergency. Sudden Unexplained Death For reasons that are poorly understood, people with epilepsy have an increased risk of dying suddenly for no discernible reason. This condition, called sudden unexplained death, can occur in people without epilepsy, but epilepsy increases the risk about two-fold. Researchers are still unsure why sudden unexplained death occurs. One study suggested that use of more than two anticonvulsant drugs may be a risk factor. However, it is not clear whether the use of multiple drugs causes the sudden death, or whether people who use multiple anticonvulsants have a greater risk of death because they have more severe types of epilepsy. 38 Seizures and Epilepsy What Research Is Being Done on Epilepsy? While research has led to many advances in understanding and treating epilepsy, there are many unanswered questions about how and why seizures develop, how they can best be treated or prevented, and how they influence other brain activity and brain development. Researchers, many of whom are supported by the National Institute of Neurological Disorders and Stroke (NINDS), are studying all of these questions. They also are working to identify and test new drugs and other treatments for epilepsy and to learn how those treatments affect brain activity and development. NINDS’ Epilepsy Therapeutics Research Program studies potential antiepileptic drugs with the goal of enhancing treatment for epilepsy. Since it began in 1975, this program has screened more than 22,000 compounds for their potential as antiepileptic drugs and has contributed to the development of five drugs that are now approved for use in the United States as well as others that are still being developed or tested. Scientists continue to study how excitatory and inhibitory neurotransmitters interact with brain cells to control nerve firing. They can apply different chemicals to cultures of neurons in laboratory dishes to study how those chemicals influence neuronal activity. They also are studying how glia and other non-neuronal cells in the brain contribute to seizures. This research may lead to new drugs and other new ways of treating seizures. Researchers also are working to identify genes that may influence epilepsy in some way. Identifying these genes can reveal the underlying chemical processes that influence epilepsy and point to new ways of preventing or treating this disorder. Researchers also can study rats and mice that have missing or abnormal copies of certain genes to determine how these genes affect normal brain development and resistance to damage from disease and other environmental factors. Researchers may soon be able to use devices called gene chips to determine each person’s genetic makeup or to learn which genes are active. This information may allow doctors to prevent epilepsy or to predict which treatments will be most beneficial. Doctors are now experimenting with several new types of therapies for epilepsy. In one preliminary clinical trial, doctors have begun transplanting fetal pig neurons that produce GABA into the brains of patients to learn whether the cell transplants can help control seizures. Preliminary research suggests that stem cell transplants also may prove beneficial for treating epilepsy. Research showing that the brain undergoes subtle changes prior to a seizure has led to a prototype device that may be able to predict seizures up to 3 minutes before they begin. If this device works, it could greatly Guidelines 39 reduce the risk of injury from seizures by allowing people to move to a safe area before their seizures start. This type of device also may be hooked up to a treatment pump or other device that will automatically deliver an antiepileptic drug or an electric impulse to forestall the seizures. Researchers are continually improving MRI and other brain scans. Presurgical brain imaging can guide doctors to abnormal brain tissue and away from essential parts of the brain. Researchers also are using brain scans such as magnetoencephalograms (MEG) and magnetic resonance spectroscopy (MRS) to identify and study subtle problems in the brain that cannot otherwise be detected. Their findings may lead to a better understanding of epilepsy and how it can be treated. How Can I Help Research on Epilepsy? There are many ways that people with epilepsy and their families can help with research on this disorder. Pregnant women with epilepsy who are taking antiepileptic drugs can help researchers learn how these drugs affect unborn children by participating in the Antiepileptic Drug Pregnancy Registry, which is maintained by the Genetics and Teratology Unit of Massachusetts General Hospital (see section on Pregnancy and Motherhood). People with epilepsy that may be hereditary can aid research by participating in the Epilepsy Gene Discovery Project, which is supported by the Epilepsy Foundation. This project helps to educate people with epilepsy about new genetic research on the disorder and enlists families with hereditary epilepsy for participation in gene research. People who enroll in this project are asked to create a family tree showing which people in their family have or have had epilepsy. Researchers then examine this information to determine if the epilepsy is in fact hereditary, and they may invite participants to enroll in genetic research studies. In many cases, identifying the gene defect responsible for epilepsy in an individual family leads researchers to new clues about how epilepsy develops. It also can provide opportunities for early diagnosis and genetic screening of individuals in the family. People with epilepsy can help researchers test new medications, surgical techniques, and other treatments by enrolling in clinical trials. Information on clinical trials can be obtained from the NINDS as well as many private pharmaceutical and biotech companies, universities, and other organizations. A person who wishes to participate in a clinical trial must ask his or her regular physician to refer him or her to the doctor in charge of that 40 Seizures and Epilepsy trial and to forward all necessary medical records. While experimental therapies may benefit those who participate in clinical trials, patients and their families should remember that all clinical trials also involve some risks. Therapies being tested in clinical trials may not work, and in some cases doctors may not yet be certain that the therapies are safe. Patients should be certain they understand the risks before agreeing to participate in a clinical trial. NINDS supports a number of Epilepsy Research Centers that perform a broad spectrum of clinical research on epilepsy. Some of the studies require patient volunteers. A list of these centers is available from the NIH Neurological Institute, which can be reached at the address and phone number found on the Information Resources card in the back pocket of this brochure. Patients and their families also can help epilepsy research by donating their brain to a brain bank after death. Brain banks supply researchers with tissue they can use to study epilepsy and other disorders. Below are some brain banks that accept tissue from patients with epilepsy: Brain and Tissue Bank for Neurological Disorders University of Maryland, Baltimore Dr. Ron Zielke Director 800-847-1539 www.som1.umaryland.edu/BTBank/ Brain and Tissue Bank for Developmental Disorders University of Miami Dr. Carol Petito Director 800-59Brain (592-7246) E-mail: btbcoord@med.Miami.edu Fax: 305-243-6970 Tissue from children only. Brain Endowment Bank University of Miami Dr. Deborah Mash Director 800-UMBrain (862-7246) FAX: 305-243-3649 Tissue from adults only. Guidelines 41 National Disease Research Interchange 1880 JFK Boulevard, 6th Floor Philadelphia, Pennsylvania 19103 215-557-7361 800-222-NDRI (6374) National Neurological Research Specimen Bank VAMC (W127A)-West Los Angeles 11301 Wilshire Boulevard Los Angeles, California 90073 310-268-3536 24-hour pager: 310-636-5199 What to Do If You See Someone Having a Seizure If you see someone having a seizure with convulsions and/or loss of consciousness, here’s how you can help: · Roll the person on his or her side to prevent choking on any fluids or vomit. · Cushion the person’s head. · Loosen any tight clothing around the neck. · Keep the person’s airway open. If necessary, grip the person’s jaw gently and tilt his or her head back. · Do NOT restrict the person from moving unless he or she is in danger. · Do NOT put anything into the person’s mouth, not even medicine or liquid. These can cause choking or damage to the person’s jaw, tongue, or teeth. Contrary to widespread belief, people cannot swallow their tongues during a seizure or any other time. · Remove any sharp or solid objects that the person might hit during the seizure. · Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary. · Stay with the person until the seizure ends. Call 911 if: · The person is pregnant or has diabetes. · The seizure happened in water. 42 Seizures and Epilepsy · The seizure lasts longer than 5 minutes. · The person does not begin breathing again and return to consciousness after the seizure stops. · Another seizure starts before the person regains consciousness. · The person injures himself or herself during the seizure. · This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that he or she has epilepsy or a seizure disorder. After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Be patient with the person and try to help him or her find a place to rest if he or she is tired or doesn’t feel well. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely. If you see someone having a non-convulsive seizure, remember that the person’s behavior is not intentional. The person may wander aimlessly or make alarming or unusual gestures. You can help by following these guidelines: · Remove any dangerous objects from the area around the person or in his or her path. · Don’t try to stop the person from wandering unless he or she is in danger. · Don’t shake the person or shout. · Stay with the person until he or she is completely alert. Many people with epilepsy lead productive and outwardly normal lives. Many medical and research advances in the past two decades have led to a better understanding of epilepsy and seizures than ever before. Advanced brain scans and other techniques allow greater accuracy in diagnosing epilepsy and determining when a patient may be helped by surgery. More than 20 different medications and a variety of surgical techniques are now available and provide good control of seizures for most people with epilepsy. Other treatment options include the ketogenic diet and the first implantable device, the vagus nerve stimulator. Research on the underlying causes of epilepsy, including identification of genes for some forms of epilepsy and febrile seizures, has led to a greatly improved understanding of epilepsy that may lead to more effective treatments or even new ways of preventing epilepsy in the future. Guidelines 43 Information Resources The National Institute of Neurological Disorders and Stroke, a component of the National Institutes of Health, is the leading Federal supporter of research on disorders of the brain and nervous system. The Institute also sponsors an active public information program with staff who can answer questions about diagnosis and research related to seizures and epilepsy. For information on seizures or other neurological disorders, contact the Institute’s Brain Resources and Information Network (BRAIN) at: BRAIN P.O. Box 5801 Bethesda, Maryland 20824 800-352-9424 www.ninds.nih.gov Private voluntary organizations that provide information on treatment, diagnosis, and services include the following: American Epilepsy Society 342 North Main Street West Hartford, Connecticut 06117 860-586-7505 www.aesnet.org The American Epilepsy Society, one of the oldest neurological professional organizations in the country, promotes research and education for professionals interested in seizure disorders and epilepsy. Membership consists of clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in both pediatric and adult seizure disorders. The Society develops resources and collaborative relationships worldwide to advance patient care and to support efforts leading to the prevention, treatment, and cure of epilepsy. It also holds an annual scientific meeting that attracts more than 3,500 professionals. Citizens United for Research in Epilepsy (CURE) 505 North Lake Shore Drive, #4605 Chicago, Illinois 60611 312-923-9117 312-923-9118 (fax) CUReepi@aol.com www.CUREepilepsy.org CURE is a global grassroots organization dedicated to finding a cure for pediatric intractable epilepsy. CURE works to stimulate innovative 44 Seizures and Epilepsy epilepsy research through private funding sources and by publishing the long overlooked need for a cure for this disease. Epilepsy Foundation 4351 Garden City Drive Suite 500 Landover, Maryland 20785 301-459-3700 800-332-1000 301-577-2684 (fax) postmaster@efa.org www.epilepsyfoundation.org The Epilepsy Foundation is a national voluntary health agency that works for people affected by seizures through research, education, advocacy, and service. Its goals are the prevention and cure of seizure disorders, the alleviation of their effects, and the promotion of independence and optimal quality of life for people who have these disorders. Epilepsy Foundation affiliates serve people with epilepsy and their families in more than 100 communities throughout the United States. National Association of Epilepsy Centers 5775 Wayzata Boulevard Suite 200 Minneapolis, Minnesota 55416 952-525-4526 The goals of this Association, which includes the majority of specialized epilepsy centers in the U.S., are to provide information about the care of patients with epilepsy to the appropriate government and industry officials; to exchange information among its members; and to participate in developing standards for programs providing services. Epilepsy Institute 257 Park Avenue South New York, NY 10010 212-677-8550 212-677-5825 (fax) website@epilepsyinstitute.org www.epilepsyinstitute.org A non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families. Guidelines 45 National Organization for Rare Disorders (NORD) P.O. Box 8923 100 Route 37 New Fairfield, Connecticut 06812-8923 203-746-6518 800-999-NORD (6673) 203-746-6481 (fax) orphan@rarediseases.org www.rarediseases.org The National Organization for Rare Disorders (NORD), a federation of voluntary health organizations dedicated to helping people with rare “orphan”diseases, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. For information on prescription medicines, contact: National Council on Patient Information and Education 4915 St. Elmo Avenue Suite 505 Bethesda, Maryland 20814 301-656-8565 301-656-4464 (fax) ncpie@erols.com www.talkaboutrx.org The National Council on Patient Information and Education is a coalition of organizations committed to providing patients, consumers, and caregivers with useful and appropriate medicine information. Pregnant women with epilepsy can help researchers learn how epilepsy drugs affect unborn children by participating in the following program: Antiepileptic Drug Pregnancy Registry Massachusetts General Hospital Genetics and Teratology Unit 55 Fruit Street Boston, Massachusetts 02114 888-233-2334 http://www.aedpregnancyregistry.org/ Other support organizations include: Family Caregiver Alliance 690 Market Street, Suite 600 San Francisco, California 94104 46 Seizures and Epilepsy 415-434-3388 800-445-8106 415-434-3508 (fax) info@caregiver.org www.caregiver.org Services offered by the Family Caregiver Alliance include specialized information and assistance, consultation on long-term care planning, service linkage and arrangement, legal and financial consultation, respite services, counseling, and education. National Family Caregivers Association 10400 Connecticut Avenue Suite 500 Kensington, Maryland 20895 301-942-6430 800-896-365 301-942-2302 (fax) info@nfacares.org www.nfcacares.org Through its services in the areas of education and information, support and validation, public awareness, and advocacy, the National Family Caregivers Association strives to improve caregivers’ quality of life. More Guideline Sources The guideline above on seizures and epilepsy is only one example of the kind of material that you can find online and free of charge. The remainder of this chapter will direct you to other sources which either publish or can help you find additional guidelines on topics related to seizures and epilepsy. Many of the guidelines listed below address topics that may be of particular relevance to your specific situation or of special interest to only some patients with seizures and epilepsy. Due to space limitations these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly. Topic Pages: MEDLINEplus For patients wishing to go beyond guidelines published by specific Institutes of the NIH, the National Library of Medicine has created a vast and patient- Guidelines 47 oriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages.” You can think of a health topic page as a guide to patient guides. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. Recently, MEDLINEplus listed the following as being relevant to seizures and epilepsy: · Guides on Seizures and Epilepsy Seizures and Epilepsy http://www.nlm.nih.gov/medlineplus/tutorials/seizuresandepileps yloader.html Epilepsy http://www.nlm.nih.gov/medlineplus/ency/article/000694.htm Within the health topic page dedicated to seizures and epilepsy, the following was recently recommended to patients: · General/Overviews Seizures and Epilepsy Source: Patient Education Institute http://www.nlm.nih.gov/medlineplus/tutorials/seizuresandepileps yloader.html · Diagnosis/Symptoms Brain Imaging Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/treatment/brain. html Computed Tomography (CT)-Head Source: American College of Radiology, Radiological Society of North America http://www.radiologyinfo.org/content/ct_of_the_head.htm Electroencephalogram (EEG) Source: img src='/medlineplus/images/linkpdf.gif' width='100' height='17' border=0 alt='Links to PDF File'> (National Institutes of Health, Clinical Center http://www.cc.nih.gov/ccc/patient_education/procdiag/eeg.pdf 48 Seizures and Epilepsy Electrophysiology Source: We Move http://www.wemove.org/kidsmove/dia_exa_electro.html Functional MR Imaging (fMRI) - Brain Source: American College of Radiology, Radiological Society of North America http://www.radiologyinfo.org/content/functional_mr.htm · Treatment Treatment Through Vagus Nerve Stimulation Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/treatment/vns.ht ml · Nutrition Ketogenic Diet as Therapy: An Update Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/epusa/ketogenic. html · Specific Conditions/Aspects All About Partial Seizures Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/partialseizures/t ypes.html Petit Mal Seizure Source: Mayo Foundation for Medical Education and Research http://www.mayoclinic.com/invoke.cfm?id=DS00216 Seizure Recognition and First Aid Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/recognition/chart .html Guidelines 49 Todd's Paralysis Source: img src='/medlineplus/images/shortsummary.gif' width='90' height='17' border=0 alt='Short Summary'> (National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/health_and_medical/disorders/toddspar alysis.htm What is a Grand Mal Seizure? Source: Mayo Foundation for Medical Education and Research http://www.mayoclinic.com/invoke.cfm?id=DS00222 What is a Temporal Lobe Seizure? Source: Mayo Foundation for Medical Education and Research http://www.mayoclinic.com/invoke.cfm?id=DS00266 · Children Febrile Seizures Source: National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/health_and_medical/pubs/febrile_seizur es.htm Infantile Spasms Source: img src='/medlineplus/images/shortsummary.gif' width='90' height='17' border=0 alt='Short Summary'> (National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/health_and_medical/disorders/infantile spasms.htm Know the Signs of Childhood Seizures Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/knowsigns/know signs.html Nonfebrile and Generalized Seizures Source: American Academy of Pediatrics http://www.medem.com/medlb/article_detaillb.cfm?article_ID=ZZ Z9I77NBAC&sub_cat=107 Seizures Source: Nemours Foundation http://kidshealth.org/parent/firstaid_safe/emergencies/seizure.htm l 50 Seizures and Epilepsy · From the National Institutes of Health Seizures and Epilepsy: Hope Through Research Source: National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/health_and_medical/pubs/seizures_and _epilepsy_htr.htm · Law and Policy Arrest For Seizure-Related Behavior Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/factsheets/arrest. html · Organizations Epilepsy Foundation http://www.epilepsyfoundation.org/index.cfm National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/ Society for Neuroscience http://web.sfn.org/ · Research Febrile Seizures After MMR And DTP Vaccinations Source: National Immunization Program http://www.cdc.gov/nip/issues/mmr-dtp/mmr-dtp-faqs.htm Safe Effective Treatment to Stop Seizures Can Be Delivered Outside of the Hospital Source: National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/news_and_events/pressrelease_seizure_t reatment_082901.htm Guidelines 51 · Teenagers Seizure Smart Babysitters Source: Epilepsy Foundation http://www.epilepsyfoundation.org/answerplace/babysitters/intro. html · Women Seizure Disorders in Pregnancy Source: American College of Obstetricians and Gynecologists http://www.medem.com/medlb/article_detaillb.cfm?article_ID=ZZ ZG14EX77C&sub_cat=3 If you do not find topics of interest when browsing health topic pages, then you can choose to use the advanced search utility of MEDLINEplus at http://www.nlm.nih.gov/medlineplus/advancedsearch.html. This utility is similar to the NIH Search Utility, with the exception that it only includes material linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search. The Combined Health Information Database (CHID) CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on seizures and epilepsy and related conditions. One of the advantages of CHID over other sources is that it offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive: · Safety and Seizures: Tips for Living with Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 29 p., 1996. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) EFA-1000; (301) 459-3700, ext. 641. TDD: (800) 332-2070. INTERNET/EMAIL: www.efa.org. Summary: Safety and Seizures: Tips for Living with Seizure Disorders is a booklet designed to help individuals with seizure disorders cope with 52 Seizures and Epilepsy the condition by helping them think about any risks they may face and offering suggestions on how to have a safe and active life. Section 1 discusses seizure first aid for convulsions and partial seizures, and when to call an ambulance. Section 2 discusses how to take an inventory of personal risk, including (1) seizure type, (2) seizure characteristics, (3) seizure history, (4) seizure triggers, and (5) seizure frequency. Section 3 describes how to take an inventory of activity risk by thinking about common activities and lifestyle. Section 4 presents a menu of safety tips for daily living that may reduce the risk of injury during or following a seizure. The menu focuses on (1) personal safety, (2) bathroom safety, (3) kitchen safety, (4) household safety, (5) workplace safety, (6) transportation safety, (7) recreation safety, (8) children's safety, and (9) parenting safety. Each section offers a personal story from one individual who creatively handled a safety situation. Section 5 presents information on getting help from experts (rehabilitation technology specialists), offering telephone numbers of organizations with rehabilitation technology specialists. Section 5 describes how becoming a member of the EFA can help the organization and individuals with epilepsy. · Seizures and Seniors Source: Landover, MD, Epilepsy Foundation of America, 28 p., (n.d.). Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. (800) EFA-1000. Summary: Seizures and Seniors is a brochure that provides information about seizures in older individuals. Topics include (1) about epilepsy; (2) types of seizures; (3) things to remember about seizures; (4) how to respond to seizures and handle convulsions; (5) how to respond to confusion during a seizure or during the recovery period; (6) seizure warning signals; (7) how to respond to seizures in an older person who also has other medical problems; (8) causes of epilepsy; (9) antiepileptic drugs; (10) mental alertness, mood, and memory related to epilepsy; (11) the importance of remembering to take medication at the proper time; (12) living with epilepsy, (13) driving by individuals with epilepsy; (14) changes in attitudes toward and treatment for epilepsy over the years; and (15) information on the Epilepsy Foundation of America. · Epilepsy: Questions and Answers about Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 30 p., 1994. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 577-0100. FAX: (301) 577-4951. Guidelines 53 Summary: Epilepsy: Questions and Answers about Seizure Disorders is a brochure that provides general information about epilepsy to the public. Topics include (1) questions and answers about epilepsy; (2) questions and answers about seizures; (3) seizures that look like sleepwalking; (4) most seizures do not injure the brain; (5) seizures do not cause injuries to other people; (6) questions and answers about first aid; (7) simple first aid for epilepsy; (8) how doctors treat epilepsy with drugs; (9) surgery, the ketogenic diet, vitamin and mineral treatment, and biofeedback; (10) questions and answers about daily living for individuals with epilepsy, including information on driving, employment, discrimination, drinking, serving in the armed forces, sports, swimming, insurance, aging, and mental illness; and (11) how the Epilepsy Foundation of America helps people with epilepsy and the benefits of membership in the Foundation. A final section offers an annotated list of selected videos, pamphlets, and books available from the Epilepsy Foundation of America. · Americans with Disabilities Act: Questions and Answers About Provisions Affecting Persons with Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 12 p., 1992. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 577-0100. (800) EFA-1000. Summary: Americans with Disabilities Act: Questions and Answers about Provisions Affecting Persons with Seizure Disorders is a brochure that provides basic information about epilepsy and employment. Topics include (1) the Americans with Disabilities Act (ADA); (2) how the ADA works in connection with current state and local laws; (3) why people with epilepsy are covered by the ADA; (4) basic employment provisions of the ADA (Title I); (5) the provisions of the ADA concerning state and local governments (Title II); (6) transportation standards under the ADA (Title II, Part 1 and 2); (7) provisions for Public Accommodation under the ADA (Title III); (8) what the ADA requires regarding telecommunications (Title IV); (9) which employers are covered by the ADA and when employment provisions take effect; (10) the employment application process; (11) job interviews; (12) establishing that applicants are qualified individuals with a disability; (13) essential job functions; (14) reasonable accommodation; (15) medical examinations and drug testing; (16) how the ADA affects the availability and administration of employee benefits; (17) employment discrimination claims; and (18) what defenses are available to employers who are charged with violating the ADA. 54 Seizures and Epilepsy · Epilepsy: Part of Your Life: Living with Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 43 p., (n.d.). Contact: Epilepsy Foundation of America. 4351 Garden City Drive, Landover, MD 20785. (301) 577-0100. FAX: (301) 577-4951. Summary: Epilepsy: Part of Your Life. Living with Seizure Disorders is a booklet about day-to-day living with epilepsy and some of the special issues that may arise. The booklet contains general information based on the experiences of many people with epilepsy, and its recommendations are drawn from studies and research. Topics include (1) information about epilepsy; (2) how to adjust to epilepsy; (4) how to understand your feeling; (5) staying healthy; (6) living in society with epilepsy; (7) tips for living with epilepsy in today's world; (8) the Epilepsy Foundation of America and offers contact information; and (9) selected books, videos, and pamphlets. · Epilepsy: You and Your Treatment Source: Landover, MD, Epilepsy Foundation of America, 22 p., 1994. Contact: Epilepsy Foundation of America. 4351 Garden City Drive, Landover, MD 20785. (800) EFA-1000. Summary: Epilepsy: You and Your Treatment is a booklet from the Epilepsy Foundation of America that provides basic information about tests, diagnosis, and management. Topics include (1) what seizures are and how physicians will work with individuals who have seizures; (2) blood tests; (3) electroencephalograph tests; (4) brain imaging techniques; (5) tests during treatment; (6) drugs prescribed to prevent seizures; (7) things to do to help treatment work; (8) side effects of drugs; (9) pregnancy; (10) the effect of taking more than one anticonvulsant drug; (11) the benefits of brain surgery for certain types of epilepsy; and (12) other treatments, such as the ketogenic diet, biofeedback, ACTH injection, vitamin therapy, and experimental medicines. · Management by Common Sense: A Frank Look at Epilepsy in the Workplace Source: Landover, MD, Epilepsy Foundation of America, Training and Placement Service, 3-fold brochure, 7-page pocket insert, 1987. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) 332-1000; (301) 459-3700. Summary: Information about epilepsy is presented in the format of a manager explaining epilepsy to peers. Topics discussed include seizure management, epidemiology and causes, seizure types, workplace Guidelines 55 accommodations, and understanding the individual with epilepsy. Managers are encouraged to treat all employees equally. About 1 percent of the population has epilepsy. It can be caused by birth defects, childhood illness, tumor, head injury, or neural infection. Often no cause is found. There are more than 20 different types of seizures; they can cause impaired consciousness, involuntary movements, or brief lapses in attention. Tonic-clonic seizures affect the whole brain and cause the person to lose consciousness, fall, and experience stiffening and jerking for 2 to 5 minutes. First aid measures include clearing the area of onlookers and hard objects, turning the individual on his or her side and loosening their collar. Absence seizures are brief lapses in consciousness and do not require first aid. Simple partial seizures do not impair consciousness and do not require first aid; symptoms are related to the portion of the brain that is affected. Complex partial seizures are variable and may be difficult to understand. The individual having a seizure may appear disoriented and dazed. First aid measures include gently guiding the individual away from hazards and providing reassurance until the seizure is over. Workplace accommodations vary but may include stable shifts, regular breaks, and sensitivity from coworkers. Safety issues are related to the particular seizure type. Special concerns addressed include driving, work absences, medication side effects, stress-induced seizures, working with equipment and machinery, workers' compensation premium rates, and customer or client reactions. · Women and Epilepsy Source: North York, Ontario, Canada, Epilepsy Ontario, 8 p., (n.d.). Contact: Epilepsy Ontario, P.O. Box 58515, 197 Sheppard Avenue East, North York, Ontario, Canada. (905) 764-5099. (416) 229-2291. (800) 4631119. Summary: Women and Epilepsy, a brochure from Epilepsy Ontario, presents information on how seizure disorders relate to the various phases of a woman's life, from puberty to menopause. The first section focuses on adolescence, highlighting (1) menstruation, (2) relationships and disclosure, (3) and birth control. The second section discusses prepregnancy planning, focusing on fertility and libido as they relate to epilepsy. The third section looks at pregnancy, examining (1) the role of heredity, (2) seizures during pregnancy, (3) possible complications during pregnancy, (4) drugs and the developing fetus, (5) nutrition, (6) labor and delivery, and (7) breast feeding. The fourth section focuses on practical concerns for women with small children, including recommended safety precautions. The fifth section discusses epilepsy and 56 Seizures and Epilepsy menopause. The brochure opens out into a poster entitled Women and Epilepsy. · Seizures Source: Charleston, WV: Division of Handicapped Children's Services, West Virginia Bureau of Public Health. n.d. 2 pp. Contact: Available from Division of Handicapped Children's Services, West Virginia Department of Health and Human Resources, Office of Maternal and Child Health, 1411 Virginia Street, East, Charleston, WV 25301. Telephone: (304) 558-0030 / fax: (304) 558-2183. Summary: This brochure is given to parents of children who have had seizures and have visited a West Virginia health clinic. It includes instructions regarding the child's medication and what the parent should do if their child has another seizure. The National Guideline Clearinghouse™ The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search their site located at http://www.guideline.gov by using the keyword “seizures and epilepsy” or synonyms. The following was recently posted: · Practice parameter: long-term treatment of the child with simple febrile seizures. Source: American Academy of Pediatrics.; 1999 June; 3 pages http://www.guideline.gov/FRAMESETS/guideline_fs.asp?guideline=00 1183&sSearch_string=Seizures+and+Epilepsy Healthfinder™ Healthfinder™ is an additional source sponsored by the U.S. Department of Health and Human Services which offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database: · An Epilepsy Education Summary: A general overview about epilepsy seizures written fro children. Guidelines 57 Source: Nemours Foundation http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=5532 · Epilepsy and Seizures Summary: A general overview of epilepsy and seizures that includes a description of the disorder, and treatment, prognosis and research information. Source: National Institute of Neurological Disorders and Stroke, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=746 · Epilepsy: Taming the Seizures, Dispelling the Myths Summary: This FDA Consumer magazine article discusses epileptic seizures and their control and treatment. Includes information about drugs that the FDA has approved for treatment and control of the disorder. Source: U.S. Food and Drug Administration http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&R ecordID=4426 The NIH Search Utility After browsing the references listed at the beginning of this chapter, you may want to explore the NIH Search Utility. This allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEBSPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to seizures and epilepsy. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively rare or specific disorders, or when using highly targeted searches. To use the NIH search utility, visit the following Web page: http://search.nih.gov/index.html. 58 Seizures and Epilepsy Additional Web Sources A number of Web sites that often link to government sites are available to the public. These can also point you in the direction of essential information. The following is a representative sample: · AOL: http://search.aol.com/cat.adp?id=168&layer=&from=subcats · drkoop.comÒ: http://www.drkoop.com/conditions/ency/index.html · Family Village: http://www.familyvillage.wisc.edu/specific.htm · Google: http://directory.google.com/Top/Health/Conditions_and_Diseases/ · Med Help International: http://www.medhelp.org/HealthTopics/A.html · Open Directory Project: http://dmoz.org/Health/Conditions_and_Diseases/ · Yahoo.com: http://dir.yahoo.com/Health/Diseases_and_Conditions/ · WebMDÒHealth: http://my.webmd.com/health_topics Vocabulary Builder The material in this chapter may have contained a number of unfamiliar words. The following Vocabulary Builder introduces you to terms used in this chapter that have not been covered in the previous chapter: Accommodation: distances. [EU] Adjustment, especially that of the eye for various Acetylcholine: A neurotransmitter. Acetylcholine in vertebrates is the major transmitter at neuromuscular junctions, autonomic ganglia, parasympathetic effector junctions, a subset of sympathetic effector junctions, and at many sites in the central nervous system. It is generally not used as an administered drug because it is broken down very rapidly by cholinesterases, but it is useful in some ophthalmological applications. [NIH] ACTH: Adrenocorticotropic hormone. [EU] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH] Amniocentesis: Percutaneous transabdominal puncture of the uterus during pregnancy to obtain amniotic fluid. It is commonly used for fetal Guidelines 59 karyotype determination in order to diagnose abnormal fetal conditions. [NIH] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures. [NIH] Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antidepressant: An agent that stimulates the mood of a depressed patient, including tricyclic antidepressants and monoamine oxidase inhibitors. [EU] Antiepileptic: An agent that combats epilepsy. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Apnea: A transient absence of spontaneous respiration. [NIH] Arrhythmia: Any variation from the normal rhythm of the heart beat, including sinus arrhythmia, premature beat, heart block, atrial fibrillation, atrial flutter, pulsus alternans, and paroxysmal tachycardia. [EU] Aura: A subjective sensation or motor phenomenon that precedes and marks the of a paroxysmal attack, such as an epileptic attack on set. [EU] Automatism: Aimless and apparently undirected behaviour that is not under conscious control and is performed without conscious knowledge; seen in psychomotor epilepsy, catatonic schizophrenia, psychogenic fugue, and other conditions. Called also automatic behaviour. [EU] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Blinking: Brief closing of the eyelids by involuntary normal periodic closing, as a protective measure, or by voluntary action. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiac: Pertaining to the heart. [EU] 60 Seizures and Epilepsy Cardiovascular: Pertaining to the heart and blood vessels. [EU] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cerebrovascular: Pertaining to the blood vessels of the cerebrum, or brain. [EU] Clonazepam: An anticonvulsant used for several types of seizures, including myotonic or atonic seizures, photosensitive epilepsy, and absence seizures, although tolerance may develop. It is seldom effective in generalized tonic-clonic or partial seizures. The mechanism of action appears to involve the enhancement of GABA receptor responses. [NIH] Clonic: Pertaining to or of the nature of clonus. [EU] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Confusion: Disturbed orientation in regard to time, place, or person, sometimes accompanied by disordered consciousness. [EU] Consciousness: Sense of awareness of self and of the environment. [NIH] Contraceptive: conception. [EU] An agent that diminishes the likelihood of or prevents Convulsion: A violent involuntary contraction or series of contractions of the voluntary muscles. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Deprivation: Loss or absence of parts, organs, powers, or things that are needed. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Dysplasia: Abnormality of development; in pathology, alteration in size, shape, and organization of adult cells. [EU] Eclampsia: Convulsions and coma occurring in a pregnant or puerperal woman, associated with preeclampsia, i.e., with hypertension, edema, and/or proteinuria. [EU] Encephalitis: Inflammation of the brain. [EU] Encephalopathy: Any degenerative disease of the brain. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Guidelines 61 Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Ethosuximide: An anticonvulsant especially useful in the treatment of absence seizures unaccompanied by other types of seizures. [NIH] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Febrile: Pertaining to or characterized by fever. [EU] GABA: The most common inhibitory neurotransmitter in the central nervous system. [NIH] Gestures: Movement of a part of the body for the purpose of communication. [NIH] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] Hemiplegia: Paralysis of one side of the body. [EU] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Heredity: 1. The genetic transmission of a particular quality or trait from parent to offspring. 2. The genetic constitution of an individual. [EU] Hormonal: Pertaining to or of the nature of a hormone. [EU] Hydrocephalus: A condition marked by dilatation of the cerebral ventricles, most often occurring secondarily to obstruction of the cerebrospinal fluid pathways, and accompanied by an accumulation of cerebrospinal fluid within the skull; the fluid is usually under increased pressure, but occasionally may be normal or nearly so. It is typically characterized by enlargement of the head, prominence of the forehead, brain atrophy, mental deterioration, and convulsions; may be congenital or acquired; and may be of sudden onset (acute h.) or be slowly progressive (chronic or primary b.). [EU] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Immunization: The induction of immunity. [EU] Infantile: Pertaining to an infant or to infancy. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Leprosy: A chronic granulomatous infection caused by Mycobacterium 62 Seizures and Epilepsy leprae. The granulomatous lesions are manifested in the skin, the mucous membranes, and the peripheral nerves. Two polar or principal types are lepromatous and tuberculoid. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Libido: Sexual desire. [EU] Lobe: A more or less well-defined portion of any organ, especially of the brain, lungs, and glands. Lobes are demarcated by fissures, sulci, connective tissue, and by their shape. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Meningitis: Inflammation of the meninges. When it affects the dura mater, the disease is termed pachymeningitis; when the arachnoid and pia mater are involved, it is called leptomeningitis, or meningitis proper. [EU] Menopause: Cessation of menstruation in the human female, occurring usually around the age of 50. [EU] Menstruation: The cyclic, physiologic discharge through the vagina of blood and mucosal tissues from the nonpregnant uterus; it is under hormonal control and normally recurs, usually at approximately four-week intervals, in the absence of pregnancy during the reproductive period (puberty through menopause) of the female of the human and a few species of primates. It is the culmination of the menstrual cycle. [EU] Mental: 1. Pertaining to the mind; psychic. 2. (L. mentum chin) Pertaining to the chin. [EU] Monotherapy: A therapy which uses only one drug. [EU] Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neonatal: Pertaining to the first four weeks after birth. [EU] Neural: 1. Pertaining to a nerve or to the nerves. 2. Situated in the region of the spinal axis, as the neutral arch. [EU] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the NERVOUS SYSTEM. [NIH] Neurotransmitter: Any of a group of substances that are released on excitation from the axon terminal of a presynaptic neuron of the central or Guidelines 63 peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Pacemaker: An object or substance that influences the rate at which a certain phenomenon occurs; often used alone to indicate the natural cardiac pacemaker or an artificial cardiac pacemaker. In biochemistry, a substance whose rate of reaction sets the pace for a series of interrelated reactions. [EU] Parasitic: Pertaining to, of the nature of, or caused by a parasite. [EU] Parietal: 1. Of or pertaining to the walls of a cavity. 2. Pertaining to or located near the parietal bone, as the parietal lobe. [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Phenobarbital: A barbituric acid derivative that acts as a nonselective central nervous system depressant. It promotes binding to inhibitory GABA subtype receptors, and modulates chloride currents through receptor channels. It also inhibits glutamate induced depolarizations. [NIH] Phenytoin: An anticonvulsant that is used in a wide variety of seizures. It is also an anti-arrhythmic and a muscle relaxant. The mechanism of therapeutic action is not clear, although several cellular actions have been described including effects on ion channels, active transport, and general membrane stabilization. The mechanism of its muscle relaxant effect appears to involve a reduction in the sensitivity of muscle spindles to stretch. Phenytoin has been proposed for several other therapeutic uses, but its use has been limited by its many adverse effects and interactions with other drugs. [NIH] Poisoning: A condition or physical state produced by the ingestion, injection or inhalation of, or exposure to a deleterious agent. [NIH] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH] Prejudice: A preconceived judgment made without adequate evidence and not easily alterable by presentation of contrary evidence. [NIH] 64 Seizures and Epilepsy Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychogenic: Produced or caused by psychic or mental factors rather than organic factors. [EU] Psychomotor: Pertaining to motor effects of cerebral or psychic activity. [EU] Puberty: The period during which the secondary sex characteristics begin to develop and the capability of sexual reproduction is attained. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Receptor: 1. A molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. A sensory nerve terminal that responds to stimuli of various kinds. [EU] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Resection: Excision of a portion or all of an organ or other structure. [EU] Sclerosis: A induration, or hardening; especially hardening of a part from inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Sedative: An agent that allays excitement. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as EPILEPSY or "seizure disorder." [NIH] Serum: 1. The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. Blood serum; the clear liquid that separates from blood on clotting. 3. Immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations Guidelines 65 obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU] Tone: 1. The normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. A particular quality of sound or of voice. 3. To make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Tonic: 1. Producing and restoring the normal tone. 2. Characterized by continuous tension. 3. A term formerly used for a class of medicinal preparations believed to have the power of restoring normal tone to tissue. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Withdrawal: 1. A pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) A substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU] Seeking Guidance 67 CHAPTER 2. SEEKING GUIDANCE Overview Some patients are comforted by the knowledge that a number of organizations dedicate their resources to helping people with seizures and epilepsy. These associations can become invaluable sources of information and advice. Many associations offer aftercare support, financial assistance, and other important services. Furthermore, healthcare research has shown that support groups often help people to better cope with their conditions.8 In addition to support groups, your physician can be a valuable source of guidance and support. Therefore, finding a physician that can work with your unique situation is a very important aspect of your care. In this chapter, we direct you to resources that can help you find patient organizations and medical specialists. We begin by describing how to find associations and peer groups that can help you better understand and cope with seizures and epilepsy. The chapter ends with a discussion on how to find a doctor that is right for you. Associations and Seizures and Epilepsy As mentioned by the Agency for Healthcare Research and Quality, sometimes the emotional side of an illness can be as taxing as the physical side.9 You may have fears or feel overwhelmed by your situation. Everyone has different ways of dealing with disease or physical injury. Your attitude, your expectations, and how well you cope with your condition can all Churches, synagogues, and other houses of worship might also have groups that can offer you the social support you need. 9 This section has been adapted from http://www.ahcpr.gov/consumer/diaginf5.htm. 8 68 Seizures and Epilepsy influence your well-being. This is true for both minor conditions and serious illnesses. For example, a study on female breast cancer survivors revealed that women who participated in support groups lived longer and experienced better quality of life when compared with women who did not participate. In the support group, women learned coping skills and had the opportunity to share their feelings with other women in the same situation. In addition to associations or groups that your doctor might recommend, we suggest that you consider the following list (if there is a fee for an association, you may want to check with your insurance provider to find out if the cost will be covered): · American Epilepsy Society Address: American Epilepsy Society 342 North Main Street, West Hartford, CT 06117-2507 Telephone: (860) 586-7505 Toll-free: 1800 134 087 Fax: (860) 586- 7550 Email: info@AESnet.org Web Site: http://www.AESnet.org Background: The American Epilepsy Society (AES) is a not-for-profit professional society dedicated to supporting individuals affected by epilepsy through research, education, and advocacy. Epilepsy is a group of disorders characterized by episodes of uncontrolled electrical disturbances in the brain. Established in 1936, the American Epilepsy Society, one of the oldest neurological professional organizations in the United States, currently consists of approximately 1,850 members including clinicians, scientists investigating basic and clinical aspects of epilepsy, and other professionals interested in seizure disorders. The Society's goals are to study epilepsy in all phases-biological, clinical, and psychosocial; to promote better care and treatment for infants, children, and adults with seizure disorders; to build personal contacts between medical investigators in epilepsy and those in related fields; to build contacts between the Society and similar societies throughout the world facilitating the exchange of scientific and professional information; and to support peer-review research, grants, and training fellowships in epilepsy. The Society is also dedicated to being recognized as the authority on the standards of quality care for those affected with epilepsy; the primary source for scientific and clinical information on epilepsy for those involved in developing public and health care policy; and the leader in developing collaborative relationships that further the quality of care of those affected with epilepsy. The Society offers a variety Seeking Guidance 69 of services including providing information on the latest pharmaceuticals and technologies; offering special interest groups to allow for networking and sharing of specialized interests; providing programs for Continuing Medical Education (CME) and nursing credits; offering funding sources for member- sponsored educational programs and member-initiated research; and conducting an annual meeting featuring symposia, lectures, presentations, and exhibitions. Educational materials include publications on specific topics with scientific focuses and conclusions, the medical journal 'Epilepsia,' brochures, pamphlets, a regular newsletter, audiovisuals, and more. AES also has a web site on the Internet at http://www.AESnet.org. Relevant area(s) of interest: Epilepsy, Seizures · Epilepsy Canada Address: Epilepsy Canada 1470 Peel Street, Suite 745, Montreal, Quebec, H3A 1T1, Canada Telephone: (514) 845-7855 Toll-free: (800) 860-5499 Fax: (514) 845-7866 Email: epilepsy@epilepsy.ca Web Site: http://www.epilepsy.ca Background: Epilepsy Canada (EC) is a not-for-profit organization dedicated to enhancing the quality of life for persons affected by epilepsy. Epilepsy is a group of disorders of the central nervous system characterized by repeated uncontrolled electrical disturbances in the brain. Established in 1966, EC is committed to establishing understanding and acceptance of epilepsy through the promotion of research, facilitation of education, and the implementation of awareness initiatives. Consisting of 21 members, the organization produces educational materials including a newsletter entitled 'Lumina,' a pamphlet entitled 'Your Medication for Epilepsy,' and a brochures entitled 'Answers to Your Questions, Epilepsy,' 'Seizures and First Aid,' 'Seizures and Seniors,' and 'Epilepsy and Children: What Parents Need To Know.' EC maintains a web site at http://www.epilepsy.ca. Relevant area(s) of interest: Convulsions, Epilepsy, Seizures · Epilepsy Foundation of America Address: Epilepsy Foundation of America 4351 Garden City Drive, Landover, MD 20785 Telephone: (301) 459-3700 Toll-free: (800) 332-1000 70 Seizures and Epilepsy Fax: (301) 577-4941 Email: webmaster@efa.org Web Site: http://www.efa.org/ Background: The Epilepsy Foundation of America is a national not-forprofit voluntary organization that works for people affected by seizures through programs of research, education, advocacy, and service. Established in 1968, the Foundation has a national office outside of Washington, D.C. and a network of over 60 affiliated organizations offering services in 125 communities nationwide. The Foundation seeks to improve the quality of life for people affected by seizures; facilitate access to reliable information about epilepsy; and act as a voice for people affected by seizures. National programs include a toll-free information service, research studies, professional education programs, public and family education programs, legal and legislative advocacy programs, and career choice and employment assistance. Local programs include outreach programs to schools and community centers, support groups, camping trips, employment services, respite care for families, and help with living arrangements. The Foundation supplies informational materials to the public and health care professionals. In addition, the National Epilepsy Library and Resource Center provides authoritative information to professionals and the public by means of computer access to major collections of medical information. Relevant area(s) of interest: Epilepsy, Seizures · Epilepsy Foundation of Victoria Address: Epilepsy Foundation of Victoria 818-824 Burke Road, Camberwell, Victoria, 3124, Australia Telephone: (03) 9813 2866 Toll-free: 1800 134 087 Fax: (03) 9882 7159 Email: epinet@epinet.org.au Web Site: http://www.epinet.org.au Background: The Epilepsy Foundation of Victoria is a voluntary organization in Australia dedicated to enhancing the quality of the lives of people living with epilepsy, a group of neurologic disorders characterized by sudden, recurrent episodes of uncontrolled electrochemical activity in the brain (seizures). The Epilepsy Foundation of Victoria was founded in 1964 and currently consists of six chapters. Its mission is to provide a comprehensive and responsive range of services and programs to meet the personal, interpersonal, socio-economic, and cultural needs of individuals affected by epilepsy. Such programs and Seeking Guidance 71 services include public education programs, advocacy, referral services, employment programs, recreational support, and individual and group counseling. The Foundation also promotes and supports medical and psychosocial research, conducts parent education workshops and support groups, and offers group forums that enable affected individuals and family members to exchange information and support. In addition, the Epilepsy Foundation of Victoria produces comprehensive brochures, manuals, and educational videos on epilepsy; publishes a quarterly newsletter entitled 'Epiletter'; has a lending library containing a collection of books, journals, and videos concerning epilepsy; and maintains a web site on the Internet. Relevant area(s) of interest: Epilepsy, Seizures · Rasmussen's Syndrome and Hemispherectomy Support Network Address: Rasmussen's Syndrome and Hemispherectomy Network 8235 Lethbridge Road, Millersville, MD 21108 Support Telephone: (410) 987-5221 Email: rssnlynn@aol.com Background: The Rasmussen's Syndrome and Hemispherectomy Support Network is a national not-for-profit organization dedicated to providing information and support to individuals affected by Rasmussen's Syndrome (Rasmussen's Encephalitis) and Hemispherectomy. Rasmussen's Syndrome is a rare central nervous system disorder characterized by chronic active inflammation of the brain (encephalitis) and epileptic seizures of varying degrees of severity. Progressive symptoms including paralysis (usually of one side of the body) and mental retardation may also occur. Although the exact cause of this disorder is not known, it is thought to result from an unidentified viral infection. Hemispherectomy is a form of surgery commonly used in the treatment of Rasmussen's Syndrome and other brain disorders. Founded in 1994 and comprised of 150 members, RSHSN publishes a periodic newsletter and disseminates reprints of medical journal articles concerning Rasmussen's Syndrome and its treatments. RSHSN also maintains a support network that provides encouragement and information to individuals affected by Rasmussen's Syndrome and their families. · THRESHOLD Address: Telephone: (908) 957-0714 72 Seizures and Epilepsy Background: THRESHOLD is a not-for-profit self-help organization affiliated with the Epilepsy Foundation of New Jersey. THRESHOLD is dedicated to providing information and support to parents of children with Intractable Seizure Disorder (uncontrolled seizure disorders). Established in 1988, THRESHOLD publishes a newsletter that is distributed to over 1,000 affected families and concerned healthcare professionals across the United States and throughout the world. The newsletter provides information on uncontrolled seizure disorders as well as parent-to-parent support information. · Tuberous Sclerosis Association (UK) Address: Tuberous Sclerosis Association (UK) Little Barnsley Farm, Catshill, Bromsgrove, Worcestershire, B61 0NQ, United Kingdom Telephone: 01527 871898 Toll-free: (800) 347-0252 Fax: 01527 577390 Email: secretary@tuberous-sclerosis.org Web Site: http://www.tuberous- sclerosis.org Background: The Tuberous Sclerosis Association (TSA), an international self- help organization located in the United Kingdom, was established in 1977 by a group of parents and interested physicians dedicated to providing support to individuals with Tuberous Sclerosis (TS) and their families, increasing awareness of the disorder, and promoting fundraising to support research. Tuberous Sclerosis, a rare genetic disorder that affects the skin and nervous system, may be characterized by the development of white skin patches, red or brown birthmarks, and/or a characteristic facial rash across the cheeks and nose; developmental delays; episodes of uncontrolled electrical disturbances in the brain that cause convulsive seizures (epilepsy); mental retardation in some cases; and/or the development of benign tumors, particularly of the brain, retina, kidney, heart, and skin. The Tuberous Sclerosis Association has helped to establish specialist, multidisciplinary TS clinics in Leeds, Bath, Cambridge, Northern Ireland (Craigavon), and Scotland (Edinburgh) that offer advice on diagnosis, management, and genetic counseling and work closely with local medical staff involved with the individuals and family members in question. The TSA also supports and promotes research into the causes and management of TS through its Education and Research Fund; is in touch with over 1,000 affected families across the world as well as interested professionals from the medical, social support, and education fields; offers networking opportunities to affected families that enable them to exchange information, support, and resources; and provides support to affected Seeking Guidance 73 individuals, family members, and caregivers through visits and telephone support. In addition, the Association advises on where to obtain assistance concerning social services, benefits, and educational concerns and has a Family Care Worker who engages in patient and family advocacy. The TSA also has an International TS Research Symposium every three to four years for physicians who are conducting research on all aspects of the disorder; organizes regional meetings with speakers who address local groups; holds an Annual General Meeting for members, friends, and professionals during which physicians gives presentations on Tuberous Sclerosis; and has a Family Weekend Conference when affected families spend time together and benefit from shared experiences. The Tuberous Sclerosis Assocation offers a variety of materials including brochures, leaflets, fact sheets, videos, and a regular newsletter entitled 'TS Scan.'. · Tuberous Sclerosis Canada Address: Telephone: (905) 257-1997 Toll-free: (800) 347-0252 Fax: (905) 257-4778 Email: tscst@lara.on.ca Background: Tuberous Sclerosis Canada Sclerose Tubereuse (TSCST) is a not-for- profit organization dedicated to raising public awareness of Tuberous Sclerosis Complex (TSC); encouraging mutual support between families affected by TSC; and promoting research and education. Tuberous Sclerosis, a rare genetic disorder that affects the skin and nervous system, may be characterized by the development of white skin patches, red or brown birthmarks, and/or a characteristic facial rash across the cheeks and nose; delays in reaching developmental milestones (e.g., sitting, crawling, walking); episodes of uncontrolled electrical disturbances in the brain that cause convulsive seizures (epilepsy); mental retardation in some cases; and/or the development of benign tumors, particularly of the brain, retina, kidney, heart, and skin. Established in 1990 and consisting of 130 members, TSCST facilitates a self-help network in which families affected by Tuberous Sclerosis support one another by telephone and share information about local services that may be available. Educational materials are available in French and English and include a self-titled quarterly newsletter and brochures entitled 'There s More You Need to Know About Tuberous Sclerosis' and 'Tuberous Sclerosis Complex - What To Expect'. 74 Seizures and Epilepsy Finding More Associations There are a number of directories that list additional medical associations that you may find useful. While not all of these directories will provide different information than what is listed above, by consulting all of them, you will have nearly exhausted all sources for patient associations. The National Health Information Center (NHIC) The National Health Information Center (NHIC) offers a free referral service to help people find organizations that provide information about seizures and epilepsy. For more information, see the NHIC’s Web site at http://www.health.gov/NHIC/ or contact an information specialist by calling 1-800-336-4797. DIRLINE A comprehensive source of information on associations is the DIRLINE database maintained by the National Library of Medicine. The database comprises some 10,000 records of organizations, research centers, and government institutes and associations which primarily focus on health and biomedicine. DIRLINE is available via the Internet at the following Web site: http://dirline.nlm.nih.gov/. Simply type in “seizures and epilepsy” (or a synonym) or the name of a topic, and the site will list information contained in the database on all relevant organizations. The Combined Health Information Database Another comprehensive source of information on healthcare associations is the Combined Health Information Database. Using the “Detailed Search” option, you will need to limit your search to “Organizations” and “seizures and epilepsy”. Type the following hyperlink into your Web browser: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For publication date, select “All Years.” Then, select your preferred language and the format option “Organization Resource Sheet.” By making these selections and typing in “seizures and epilepsy” (or synonyms) into the “For these words:” box, you will only receive results on organizations dealing with seizures and epilepsy. You should check back periodically with this database since it is updated every 3 months. Seeking Guidance 75 The National Organization for Rare Disorders, Inc. The National Organization for Rare Disorders, Inc. has prepared a Web site that provides, at no charge, lists of associations organized by specific diseases. You can access this database at the following Web site: http://www.rarediseases.org/search/orgsearch.html. Select the option called “Organizational Database (ODB)” and type “seizures and epilepsy” (or a synonym) in the search box. Online Support Groups In addition to support groups, commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. WebMDÒ, for example, offers such a service at their Web site: http://boards.webmd.com/roundtable. These online self-help communities can help you connect with a network of people whose concerns are similar to yours. Online support groups are places where people can talk informally. If you read about a novel approach, consult with your doctor or other healthcare providers, as the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. Finding Doctors One of the most important aspects of your treatment will be the relationship between you and your doctor or specialist. All patients with seizures and epilepsy must go through the process of selecting a physician. While this process will vary from person to person, the Agency for Healthcare Research and Quality makes a number of suggestions, including the following:10 · If you are in a managed care plan, check the plan’s list of doctors first. · Ask doctors or other health professionals who work with doctors, such as hospital nurses, for referrals. · Call a hospital’s doctor referral service, but keep in mind that these services usually refer you to doctors on staff at that particular hospital. The services do not have information on the quality of care that these doctors provide. 10 This section is adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 76 Seizures and Epilepsy · Some local medical societies offer lists of member doctors. Again, these lists do not have information on the quality of care that these doctors provide. Additional steps you can take to locate doctors include the following: · Check with the associations listed earlier in this chapter. · Information on doctors in some states is available on the Internet at http://www.docboard.org. This Web site is run by “Administrators in Medicine,” a group of state medical board directors. · The American Board of Medical Specialties can tell you if your doctor is board certified. “Certified” means that the doctor has completed a training program in a specialty and has passed an exam, or “board,” to assess his or her knowledge, skills, and experience to provide quality patient care in that specialty. Primary care doctors may also be certified as specialists. The AMBS Web site is located at http://www.abms.org/newsearch.asp.11 You can also contact the ABMS by phone at 1-866-ASK-ABMS. · You can call the American Medical Association (AMA) at 800-665-2882 for information on training, specialties, and board certification for many licensed doctors in the United States. This information also can be found in “Physician Select” at the AMA’s Web site: http://www.amaassn.org/aps/amahg.htm. Finding a Neurologist The American Academy of Neurology allows you to search for member neurologists by name or location. To use this service, go to http://www.aan.com/, select “Find a Neurologist” from the toolbar. Enter your search criteria, and click “Search.” To find out more information on a particular neurologist, click on the physician’s name. If the previous sources did not meet your needs, you may want to log on to the Web site of the National Organization for Rare Disorders (NORD) at http://www.rarediseases.org/. NORD maintains a database of doctors with expertise in various rare diseases. The Metabolic Information Network (MIN), 800-945-2188, also maintains a database of physicians with expertise in various metabolic diseases. While board certification is a good measure of a doctor’s knowledge, it is possible to receive quality care from doctors who are not board certified. 11 Seeking Guidance 77 Selecting Your Doctor12 When you have compiled a list of prospective doctors, call each of their offices. First, ask if the doctor accepts your health insurance plan and if he or she is taking new patients. If the doctor is not covered by your plan, ask yourself if you are prepared to pay the extra costs. The next step is to schedule a visit with your chosen physician. During the first visit you will have the opportunity to evaluate your doctor and to find out if you feel comfortable with him or her. Ask yourself, did the doctor: · Give me a chance to ask questions about seizures and epilepsy? · Really listen to my questions? · Answer in terms I understood? · Show respect for me? · Ask me questions? · Make me feel comfortable? · Address the health problem(s) I came with? · Ask me my preferences about different kinds of treatments for seizures and epilepsy? · Spend enough time with me? Trust your instincts when deciding if the doctor is right for you. But remember, it might take time for the relationship to develop. It takes more than one visit for you and your doctor to get to know each other. Working with Your Doctor13 Research has shown that patients who have good relationships with their doctors tend to be more satisfied with their care and have better results. Here are some tips to help you and your doctor become partners: · You know important things about your symptoms and your health history. Tell your doctor what you think he or she needs to know. · It is important to tell your doctor personal information, even if it makes you feel embarrassed or uncomfortable. 12 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 13 This section has been adapted from the AHRQ: www.ahrq.gov/consumer/qntascii/qntdr.htm. 78 Seizures and Epilepsy · Bring a “health history” list with you (and keep it up to date). · Always bring any medications you are currently taking with you to the appointment, or you can bring a list of your medications including dosage and frequency information. Talk about any allergies or reactions you have had to your medications. · Tell your doctor about any natural or alternative medicines you are taking. · Bring other medical information, such as x-ray films, test results, and medical records. · Ask questions. If you don’t, your doctor will assume that you understood everything that was said. · Write down your questions before your visit. List the most important ones first to make sure that they are addressed. · Consider bringing a friend with you to the appointment to help you ask questions. This person can also help you understand and/or remember the answers. · Ask your doctor to draw pictures if you think that this would help you understand. · Take notes. Some doctors do not mind if you bring a tape recorder to help you remember things, but always ask first. · Let your doctor know if you need more time. If there is not time that day, perhaps you can speak to a nurse or physician assistant on staff or schedule a telephone appointment. · Take information home. Ask for written instructions. Your doctor may also have brochures and audio and videotapes that can help you. · After leaving the doctor’s office, take responsibility for your care. If you have questions, call. If your symptoms get worse or if you have problems with your medication, call. If you had tests and do not hear from your doctor, call for your test results. If your doctor recommended that you have certain tests, schedule an appointment to get them done. If your doctor said you should see an additional specialist, make an appointment. By following these steps, you will enhance the relationship you will have with your physician. Seeking Guidance 79 Broader Health-Related Resources In addition to the references above, the NIH has set up guidance Web sites that can help patients find healthcare professionals. These include:14 · Caregivers: http://www.nlm.nih.gov/medlineplus/caregivers.html · Choosing a Doctor or Healthcare Service: http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareserv ice.html · Hospitals and Health Facilities: http://www.nlm.nih.gov/medlineplus/healthfacilities.html Vocabulary Builder The following vocabulary builder provides definitions of words used in this chapter that have not been defined in previous chapters: Chronic: Persisting over a long period of time. [EU] Retina: The ten-layered nervous tissue membrane of the eye. It is continuous with the optic nerve and receives images of external objects and transmits visual impulses to the brain. Its outer surface is in contact with the choroid and the inner surface with the vitreous body. The outer-most layer is pigmented, whereas the inner nine layers are transparent. [NIH] You can access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. 14 Clinical Trials 81 CHAPTER 3. CLINICAL TRIALS AND SEIZURES AND EPILEPSY Overview Very few medical conditions have a single treatment. The basic treatment guidelines that your physician has discussed with you, or those that you have found using the techniques discussed in Chapter 1, may provide you with all that you will require. For some patients, current treatments can be enhanced with new or innovative techniques currently under investigation. In this chapter, we will describe how clinical trials work and show you how to keep informed of trials concerning seizures and epilepsy. What Is a Clinical Trial?15 Clinical trials involve the participation of people in medical research. Most medical research begins with studies in test tubes and on animals. Treatments that show promise in these early studies may then be tried with people. The only sure way to find out whether a new treatment is safe, effective, and better than other treatments for seizures and epilepsy is to try it on patients in a clinical trial. The discussion in this chapter has been adapted from the NIH and the NEI: www.nei.nih.gov/netrials/ctivr.htm. 15 82 Seizures and Epilepsy What Kinds of Clinical Trials Are There? Clinical trials are carried out in three phases: · Phase I. Researchers first conduct Phase I trials with small numbers of patients and healthy volunteers. If the new treatment is a medication, researchers also try to determine how much of it can be given safely. · Phase II. Researchers conduct Phase II trials in small numbers of patients to find out the effect of a new treatment on seizures and epilepsy. · Phase III. Finally, researchers conduct Phase III trials to find out how new treatments for seizures and epilepsy compare with standard treatments already being used. Phase III trials also help to determine if new treatments have any side effects. These trials--which may involve hundreds, perhaps thousands, of people--can also compare new treatments with no treatment. How Is a Clinical Trial Conducted? Various organizations support clinical trials at medical centers, hospitals, universities, and doctors’ offices across the United States. The “principal investigator” is the researcher in charge of the study at each facility participating in the clinical trial. Most clinical trial researchers are medical doctors, academic researchers, and specialists. The “clinic coordinator” knows all about how the study works and makes all the arrangements for your visits. All doctors and researchers who take part in the study on seizures and epilepsy carefully follow a detailed treatment plan called a protocol. This plan fully explains how the doctors will treat you in the study. The “protocol” ensures that all patients are treated in the same way, no matter where they receive care. Clinical trials are controlled. This means that researchers compare the effects of the new treatment with those of the standard treatment. In some cases, when no standard treatment exists, the new treatment is compared with no treatment. Patients who receive the new treatment are in the treatment group. Patients who receive a standard treatment or no treatment are in the “control” group. In some clinical trials, patients in the treatment group get a new medication while those in the control group get a placebo. A placebo is a harmless substance, a “dummy” pill, that has no effect on seizures and epilepsy. In other clinical trials, where a new surgery or device (not a medicine) is being tested, patients in the control group may receive a “sham Clinical Trials 83 treatment.” This treatment, like a placebo, has no effect on seizures and epilepsy and does not harm patients. Researchers assign patients “randomly” to the treatment or control group. This is like flipping a coin to decide which patients are in each group. If you choose to participate in a clinical trial, you will not know which group you will be appointed to. The chance of any patient getting the new treatment is about 50 percent. You cannot request to receive the new treatment instead of the placebo or sham treatment. Often, you will not know until the study is over whether you have been in the treatment group or the control group. This is called a “masked” study. In some trials, neither doctors nor patients know who is getting which treatment. This is called a “double masked” study. These types of trials help to ensure that the perceptions of the patients or doctors will not affect the study results. Natural History Studies Unlike clinical trials in which patient volunteers may receive new treatments, natural history studies provide important information to researchers on how seizures and epilepsy develops over time. A natural history study follows patient volunteers to see how factors such as age, sex, race, or family history might make some people more or less at risk for seizures and epilepsy. A natural history study may also tell researchers if diet, lifestyle, or occupation affects how a disease or disorder develops and progresses. Results from these studies provide information that helps answer questions such as: How fast will a disease or disorder usually progress? How bad will the condition become? Will treatment be needed? What Is Expected of Patients in a Clinical Trial? Not everyone can take part in a clinical trial for a specific disease or disorder. Each study enrolls patients with certain features or eligibility criteria. These criteria may include the type and stage of disease or disorder, as well as, the age and previous treatment history of the patient. You or your doctor can contact the sponsoring organization to find out more about specific clinical trials and their eligibility criteria. If you are interested in joining a clinical trial, your doctor must contact one of the trial’s investigators and provide details about your diagnosis and medical history. If you participate in a clinical trial, you may be required to have a number of medical tests. You may also need to take medications and/or undergo 84 Seizures and Epilepsy surgery. Depending upon the treatment and the examination procedure, you may be required to receive inpatient hospital care. Or, you may have to return to the medical facility for follow-up examinations. These exams help find out how well the treatment is working. Follow-up studies can take months or years. However, the success of the clinical trial often depends on learning what happens to patients over a long period of time. Only patients who continue to return for follow-up examinations can provide this important long-term information. Recent Trials on Seizures and Epilepsy The National Institutes of Health and other organizations sponsor trials on various diseases and disorders. Because funding for research goes to the medical areas that show promising research opportunities, it is not possible for the NIH or others to sponsor clinical trials for every disease and disorder at all times. The following lists recent trials dedicated to seizures and epilepsy.16 If the trial listed by the NIH is still recruiting, you may be eligible. If it is no longer recruiting or has been completed, then you can contact the sponsors to learn more about the study and, if published, the results. Further information on the trial is available at the Web site indicated. Please note that some trials may no longer be recruiting patients or are otherwise closed. Before contacting sponsors of a clinical trial, consult with your physician who can help you determine if you might benefit from participation. · Brain Infusion of Muscimol to Treat Epilepsy Condition(s): Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will examine the safety and effectiveness of infusing a chemical called muscimol into the brain to control seizures in patients with intractable epilepsy (frequent seizures that persist despite therapy). Muscimol, which is similar to a naturally occurring brain chemical called GABA, has been shown to reduce seizures in rats. After the infusion study, patients will undergo a standard surgical procedure for controlling seizures. Patients 18 years of age or older with intractable epilepsy may be eligible for this study. Candidates will be screened under protocol (75-N-0124 - Monitoring of Seizures, EEG and Serum Antiepileptic Drug Concentrations in Patients with Uncontrolled 16 These are listed at www.ClinicalTrials.gov. Clinical Trials 85 Epilepsy) with a medical history, physical and neurologic examination, chest X-ray, electrocardiogram, blood and urine tests, electroencephalographic (EEG) monitoring and magnetic resonance imaging (MRI) of the head. Patients enrolled in this study will have the following procedures: 1. Computerized tomography (CT) and magnetic resonance imaging (MRI) of the head to guide catheter/electrode placement (see #2). 2. Depth catheter/electrode placement into the presumed or possible location of the seizure focus (the part of the brain where the seizures originate) - Small holes are drilled through the skull. Electrodes with a hole in the center of the tubing that holds them are passed through the brain into the structures usually involved in intractable epilepsy. MRI will be done to check electrode placement. Video-EEG monitoring will continue for 5 days in patients in whom the location of the seizure focus is known but longer (up to 33 days) in patients in whom the seizure focus is difficult to locate. Patients will be tested for their ability to understand and produce speech, see normally, move their arms and legs, distinguish sharp and dull objects, and put pegs in a pegboard. They will be questioned about headache, weakness, numbness or sleepiness. The electrodes will be left in place for muscimol infusion (see #3), except in patients in whom a seizure focus cannot be located. Patients in whom a seizure focus cannot be located will not receive muscimol infusion or undergo surgery. 3. Muscimol infusion Into the seizure focus, patients will be given two infusions-one of saline (salt water) alone and one of muscimol diluted in saline. Each infusion will be given over a period of 5 1/2 days, infused at the rate of 0.1 ml (1/50th of a teaspoon) per hour. During the infusions video-EEG recordings will continue and patients will be interviewed and examined as described in #2 above). 4. Blood testing - About 2 tablespoons of blood will be drawn daily during the testing period and for the first 2 days after surgery (see #5). 5. Surgery - Temporal lobectomy or topectomy (removal of a small, specific area of brain tissue) is the standard surgical treatment for medically intractable epilepsy whose seizure focus is not in a critical brain region, such as an area that controls language, movement, or sensation. If the patient's seizures arise from one of these areas, an alternative procedure called multiple subpial transection will be offered. In this procedure, vertical cuts are made in the seizure focus to prevent neurons (nerve cells that transmit electrical impulses) in the focus from spreading the seizure to the rest of the brain. 6. Surgery follow-up Patients will be monitored in the surgical intensive care unit for 24 to 48 hours and then in the NINDS nursing unit for 4 to 8 days before being discharged to home. Another visit in the NINDS outpatient clinic will be scheduled for 6-12 weeks after surgery. Phase(s): Phase I 86 Seizures and Epilepsy Study Type: Interventional Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00005925;jsessionid=EDD480 749438722A453C398FE99C1577 · Brain Tissue Swelling and Seizure Activity in Inactive Cysticercosis Condition(s): Cysticercosis; Cysts; Seizures Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Allergy and Infectious Diseases (NIAID) Purpose - Excerpt: This study will examine what causes seizures in patients with cysticercosis (pork tapeworm infection). A better understanding of this could lead to improved methods of controlling or preventing seizures. In humans, the pork tapeworm (Taenia solium) lives in the small intestine. The parasite's microscopic eggs travel around the body-including to the brain-where they develop into cysts. Usually, the cysts don't cause symptoms until they die. Then, they provoke an inflammatory reaction that irritates the brain, causing seizures and other symptoms. The inflammation eventually goes away, but the dead cysts remain. Calcium deposits often form where the cysts are. Some of the calcified cysts develop swelling around them that seem to be associated with the development of seizures. This study will explore how and why these dead, calcified cysts continue to cause seizures. In so doing, it will try to determine: 1) the best diagnostic imaging method for detecting swelling around the cysts; 2) how often swelling occurs; and 3) what makes some cysts prone to swelling and related seizure activity, while others are not. Patients with cysticercosis who have had seizures or who have known or possible swelling around calcified cysts will be studied with various tests, including magnetic resonance imaging (MRI), computed tomography (CT) scans, electroencephalography (EEG), blood tests, and possibly lumbar puncture. Patients will be studied for two cycles of seizures (during active and quiet periods) or a maximum 4 years. Study Type: Observational Contact(s): Maryland; National Institute of Allergy and Infectious Diseases (NIAID), 9000 Rockville Pike, Bethesda, Maryland, 20892, Clinical Trials 87 United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001912;jsessionid=EDD480 749438722A453C398FE99C1577 · Does gabapentin and lamotrigine have significantly fewer side-effects while providing equal or better seizure control than the current drug choice, carbamazepine, for the treatment of seizures in the elderly. Condition(s): Seizures Study Status: This study is currently recruiting patients. Sponsor(s): Department of Veterans Affairs; Department of Veterans Affairs Cooperative Studies Program; Parke-Davis; Glaxo Wellcome Purpose - Excerpt: New onset epilepsy in the elderly occurs in 45,00050,000 elderly patients each year. These patients are especially vulnerable to side effects from medications because of changes caused by the aging process and the fact that these patients often have many common diseases for which they are already receiving medications for so that the likelihood of drug interactions is increased. Two new drugs, gabapentin and lamotrigine, have recently been approved by the FDA as antiepileptic drugs. These drugs have demonstrated efficacy in the treatment of partial onset seizures, the most common seizures in the elderly. These new compounds also have favorable side effect profiles and infrequent drug-drug interactions and, therefore, would be expected to be well-tolerated in the elderly. Phase(s): Phase III Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00007670;jsessionid=EDD480 749438722A453C398FE99C1577 · Double-blind, placebo-controlled trial of vitamin E as add-on therapy for children with epilepsy Condition(s): Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): National Center for Research Resources (NCRR) Purpose - Excerpt: This is a study to see if vitamin E helps children with epilepsy have fewer seizures. About 20-30% of children with epilepsy do 88 Seizures and Epilepsy not have adequate seizure control with established antiepileptic drugs (AEDs). Other options for patients with uncontrolled epilepsy are newer antiepileptic medications, ketogenic diet and surgery. However, a small percentage of patients are candidates for these options. Therefore, additional treatments are needed to improve seizure control in patients with uncontrolled epilepsy. Animal studies have shown an association between vitamin E supplementation and seizure reduction. A study in children also showed that vitamin E helped reduce seizures. However, a similar study in adults did not show a reduction in seizures with vitamin E supplementation. Therefore, this research study is being done to help define vitamin E's usefulness and safety as a treatment for epilepsy. Fifty patients will be recruited from the Children's Epilepsy Program at The Children's Hospital in Denver, Colorado. Qualifying patients will have a confirmed diagnosis of epilepsy that is currently uncontrolled with standard AEDs. The study period is 6 months and includes the following: Baseline period (1 month), Arm I (2 months), Wash-out period (1 month), and Arm II (2 months). Patients must have been on the same AEDs for 2 months before enrollment. All medications and complementary therapies must remain constant throughout the study. If at any point the physician feels it is not best for the patient to continue the study they will be discontinued. Before the study starts, study participants will be asked about seizure activity, what they eat and about any complementary and/or alternative medicine they may use. The study is two phases. Study participants will be given either vitamin E or placebo (fake pill/liquid) in each phase of the study. They will receive both vitamin E and placebo during the study. Which phase they receive vitamin E and placebo will be decided by chance (similar to rolling dice). Study participants will take liquid vitamin E or placebo two times per day. The study participants and study doctors will not know who is taking vitamin E and who is taking placebo. Study participants will come to the hospital for 3 outpatient and 2 inpatient visits. Health-related quality of life questionnaires will be filled out and blood will be drawn at three of the visits. Seizure diaries will be maintained throughout the study. Phase(s): Phase IV Study Type: Interventional Contact(s): Rebecca Barnhurst, R.D. 1-303-864-5710; Colorado; The Children's Hospital, Neurology B155, Denver, Colorado, 80218, United States; Recruiting; Rebecca Barnhurst, R.D. 303-864-5642. Study chairs or principal investigators: Paul Levisohn, M.D., Principal Investigator Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004637;jsessionid=EDD480 749438722A453C398FE99C1577 Clinical Trials 89 · Evaluation and Treatment of Patients with Epilepsy Condition(s): Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This protocol has three purposes: 1) to screen patients with seizures for participation in research studies of NINDS's Clinical Epilepsy Section (CES), 2) to follow the natural course of seizure disorders, and 3) to train CES fellows in evaluating and treating epilepsy. Only standard diagnostic tests and treatments will be used in this study. Patients of any age with seizures who are referred to CES may participate in this study. At the end of the study, patients may be discharged to the care of their referring physician, offered participation in another NINDS research protocol, or followed for teaching purposes. Participants will undergo standard diagnostic procedures used to determine the type of their seizures, what part of the brain they are coming from, what is causing them, and whether standard drug treatments can help them. These may include some or all of the following: - Physical and neurological examination - Neuropsychological tests - tests of learning and memory - Electroencephalography (EEG) - brain wave recording Evoked potentials - tests of nerve reactions to lights and sounds Polysomnography - simultaneous recordings of brain waves, breathing and eye movements - Video-EEG monitoring - simultaneous recording of seizures using a video camera and brain waves - Video-EEG monitoring with extra electrodes to record muscle activity, breathing and eye movements for analyzing sleep patterns - Imaging studies, such as magnetic resonance imaging (MRI) and positron emission tomography (PET) scans to examine the structure and function of the brain - Frequent blood tests to measure blood levels of anti-seizure drugs Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00013845;jsessionid=EDD480 749438722A453C398FE99C1577 90 Seizures and Epilepsy · Human Epilepsy Genetics--Neuronal Migration Disorders Study Condition(s): Epilepsy; Migration Disorders Seizures; Cognition Disorders; Neuronal Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: The purpose of this study is to identify genes responsible for epilepsy and disorders of human cognition. Study Type: Observational Contact(s): Adria Bodell, MS, CGC 617-667-8035 abodell@caregroup.harvard.edu; Massachusetts; Beth Israel Deaconess Medical Center, Harvard Institutes of Medicine, Boston, Massachusetts, 02115, United States; Recruiting; Adria Bodell, MS, CGC 617-667-8035 abodell@caregroup.harvard.edu; Christopher A. Walsh, M.D., Ph.D., Principal Investigator. Study chairs or principal investigators: Christopher A. Walsh, M.D., Ph.D., Principal Investigator; Harvard Institutes of Medicine Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00041600;jsessionid=EDD480 749438722A453C398FE99C1577 · Ketogenic Diet for Child Epilepsy and Seizure Control Condition(s): Epilepsy; Seizures; Lennox-Gastaut Syndrome Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: Twenty to thirty percent of children with epilepsy continue to suffer from seizures, even when treated with currently available anticonvulsant medications. Children with Lennox-Gastaut Syndrome (LGS) are particularly handicapped by atonic-myoclonic seizures. Preliminary data suggest that even when other medications have failed, these seizures may respond rapidly and dramatically to a high-fat-low-carbohydrate ketogenic diet. The purpose of the study is to assess if the classic ketogenic diet is efficacious in reducing seizure frequency, medication toxicity, and improves quality of life. Study Type: Interventional Contact(s): Heather Hladky 1-410-955-9100 hhladky@jhmi.edu; Maryland; Johns Hopkins Hospital, Baltimore, Maryland, 21287, United Clinical Trials 91 States; Recruiting. Study chairs or principal investigators: John M. Freeman, Principal Investigator; Johns Hopkins University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004729;jsessionid=EDD480 749438722A453C398FE99C1577 · Multicenter trial for adults with partial seizures Condition(s): Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): IVAX Research Purpose - Excerpt: This study is to see if talampanel helps and is safe to use on adults with partial seizures. Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00034814;jsessionid=EDD480 749438722A453C398FE99C1577 · Neuropsychological Evaluation of Psychiatric and Neurological Patients Condition(s): Anxiety Schizophrenia; Seizures Disorder; Head Injury; Mood Disorder; Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Mental Health (NIMH) Purpose - Excerpt: This study will allow researchers to use various types of tests to evaluate cognitive and sensory functions. These tests, referred to as "batteries" will evaluate attention, executive functions, general intellectual functioning, language, memory, motor functions, orientation, personality, selected sensory and perceptual functions, vigilance (alertness), and visual-spatial functions. Children and adult patient will receive different test batteries. The goals of this research study are to; 1. Create descriptions based on the performance of each patient on the test batteries. Then use this information to relate patient behavior to their neurophysiological, neuroradiological, and biochemical descriptions. 2. Define subgroups of patients based on their neurobehavior in order to decrease the variability of psychiatric diagnoses, treatments, and prognoses. Study Type: Observational 92 Seizures and Epilepsy Contact(s): Maryland; National Institute of Mental Health (NIMH), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800-411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001192;jsessionid=EDD480 749438722A453C398FE99C1577 · Pediatric Epilepsy Study Condition(s): Epilepsy: partial seizures Study Status: This study is currently recruiting patients. Sponsor(s): Novartis Pharmaceuticals Purpose - Excerpt: This study will evaluate the safety and effectiveness of oxcarbazepine (Trileptal) as monotherapy in the treatment of partial seizures in pediatric patients 1 month to 16 years of age. Oxcarbazepine (Trileptal) is approved by the FDA for use as monotherapy in adults. Phase(s): Phase III; MEDLINEplus consumer health information Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00050947;jsessionid=EDD480 749438722A453C398FE99C1577 · Pediatric Epilepsy Trial Condition(s): Epilepsy - partial seizures Study Status: This study is currently recruiting patients. Purpose - Excerpt: This study is to evaluate the effectiveness and safety of an investigational medication to treat pediatric patients age 1-24 months old with partial seizures. The medication used in this study has been approved by FDA for use in patients 2 years and older. Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00043875;jsessionid=EDD480 749438722A453C398FE99C1577 Clinical Trials 93 · Role of Hormones in Susceptibility to Seizures in Women with Epilepsy Condition(s): Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will measure and compare hormone levels in women with catamenial epilepsy (epilepsy in which seizures are more frequent during menstrual periods), women with seizures not related to their menstrual cycle, and normal control subjects. It will determine whether there are differences among the three groups in their hormone levels or in how fast the levels change. It will also examine what relationship, if any, exists between hormone changes and seizures in women with catamenial epilepsy. The hormones under study include the gonadal hormones estrone, estradiol and progesterone, and the neuroactive steroids allopregnanolone, pregnenolone, and dehydroepiandrosterone. Women who meet the following criteria may be eligible for this 3-month study: - Between 18 and 45 years of age, with catamenial epilepsy - Between 18 and 45 years of age, with seizures, but not catamenial epilepsy - Between 18 and 45 years of age, without seizures All participants will have a physical examination at the beginning of the study, at each clinic visit, and at completion or withdrawal from the study. In addition, they will undergo the following procedures: Baseline Monitoring For the first 2 months, all participants will keep a diary of their temperature and onset of menses. Women with epilepsy will also record their seizures. Electroencephalography (EEG) Healthy volunteers will have a 45-minute EEG (recording of the electrical activity of the brain) at the beginning of each menstrual cycle and each day during the menses. Women with epilepsy will have continuous EEG monitoring for 8 days, beginning 5 days before their menstrual period is expected. The continuous monitoring can be done on an outpatient basis, using a portable EEG recording device, or as an inpatient, with admission to the hospital for the 8 days of recording. Blood Sampling All participants will have a small blood sample (2 teaspoons) drawn once a day on days 10, 14, 17, 19 and 21 of their menstrual cycle and three times a day on day 6 and for a period of 8 days, starting 5 days before the expected menses and continuing for 3 days of the next cycle. For the days with three blood draws, a small needle that can stay in place for up to 72 hours will be placed in the arm to avoid the discomfort of multiple needle sticks. Study Type: Observational 94 Seizures and Epilepsy Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00044252;jsessionid=EDD480 749438722A453C398FE99C1577 · Search for Genes Influencing Childhood Absence Epilepsy Study Condition(s): Childhood Absence Epilepsy; Epilepsy; Seizures Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: The purpose of our study is to identify gene(s) involved in the cause of childhood absence epilepsy (CAE). Study Type: Observational Contact(s): Alissa Rottenstein 212-342-0482; New York; Columbia University, Division of Statistical Genetics, New York, New York, 10032, United States; Recruiting; Alissa Rottenstein 212-342-0482; Martina Durner, M.D., Principal Investigator. Study chairs or principal investigators: Martina Durner, M.D., Principal Investigator; Columbia University Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00041951;jsessionid=EDD480 749438722A453C398FE99C1577 · Serotonin Receptors in Seizure Disorders Condition(s): Partial Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: Patients in this study will undergo PET scans (a type of nuclear imaging test) to look for abnormalities in certain brain proteins associated with seizures. Studies in animals have shown that serotonin-a chemical messenger produced by the body-attaches to proteins on brain cells called 5HT1A receptors and changes them in some way that may help control seizures. There is little information on these changes, however. A new compound that is highly sensitive to 5HT1A, will be used in PET imaging to measure the level of activity of these receptors Clinical Trials 95 and try to detect abnormalities. Changes in receptor activity may help determine where in the brain the seizures are originating. Additional PET scans will be done to measure the amount of blood flow to the brain and the rate at which the brain uses glucose-a sugar that is the brain's main fuel. Blood flow measurement is used to calculate the distribution of serotonin receptors, and glucose use helps determine how seizures affect brain function. The information gained from the study will be used to try to help guide the patient's therapy and determine if surgery might be beneficial in controlling the patient's seizures. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001932;jsessionid=EDD480 749438722A453C398FE99C1577 · Temperature Response to a Head-Neck Cooling System Condition(s): Healthy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will evaluate the effectiveness of a specially designed head-neck cooling system for way lowering the body's central, or core, temperature and cooling the brain. Brain cooling has an effect on stopping seizure discharges in the brain as well as the seizures themselves. If this system works to cool the brain, a similar study may be tried in patients with epilepsy. Normal volunteers 21 years of age and older who have no medical or neurological condition and do not use any medications may be eligible for this study. Candidates will be screened with an interview. Women will have a pregnancy test. Those enrolled will be hospitalized twice for overnight stays, with the admissions 2 to 3 days apart. Participants will have a medical history, physical and neurological examinations, electroencephalogram (EEG) and electrocardiogram (EKG). Then, electrodes will be attached to their scalp, forearm and calf to measure temperatures in those locations. Intestinal (core) temperature will be measured with a temperature-sensing pill, which will be swallowed earlier), and a hand-held infrared thermometer will be used to measure temperatures from the ear canal, face, head, arms legs, and abdomen. Electrodes on the scalp will also measure changes in 96 Seizures and Epilepsy blood volume in the brain for a study of brain blood flow. Subjects will be seated in a comfortable chair and fitted with the cooling system, a portable unit with a circulating coolant. Cooling will last 30 minutes for the first session and 60 minutes for the second. Participants will be monitored for at least 30 minutes after each session to track temperature changes and have a post-cooling EEG recording. Phase(s): Phase I; MEDLINEplus consumer health information Study Type: Interventional Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00025987;jsessionid=EDD480 749438722A453C398FE99C1577 · Transcranial Magnetic Stimulation to Treat Epilepsy Study Status: This study is currently recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will use transcranial magnetic stimulation, or TMS (described below), to treat epilepsy in certain patients whose seizures persist despite optimum medical treatment. TMS used in this study is intended to lessen the number of seizures a patient has by decreasing excitability of the brain in the region where the seizures originate. Patients between 5 and 65 years of age who have had epilepsy for two or more years and have had at least one seizure a week for at least 6 months may be eligible for this 18-week study. Their seizures must come from a neocortical focus-that is, near the surface of the brain. Candidates will be selected from the NIH Epilepsy clinic and will be screened with an electroencephalogram (EEG), magnetic resonance imaging (MRI) scans, and blood tests. Participants will keep a diary of the seizures they experience over an 8-week period. After the 8 weeks, they will come to the NIH outpatient clinic for 6 consecutive days for the following procedures: - Day 1: A regular clinic visit, plus 6 hours of video-EEG recording (described below) - Days 2 through 5: Video-EEG monitoring and TMS as follows: 8:00 - 11: 00 a.m. 3 hours video-EEG monitoring 11:00 - 12:30 p.m. TMS (includes set-up time; actual stimulation time lasts 30 minutes) 12:30 - 3:00 p.m. Lunch + rest 3:00 - 4:30 p.m. TMS 4:30 - 7:30 p.m. 3 hours video-EEG monitoring (On the fifth day, subjects will have 6 hours of video-EEG monitoring in the afternoon Clinical Trials 97 instead of 3 hours.) Participants will be randomly assigned to one of two TMS groups. One group will have TMS delivered in a way that is thought to have a chance of reducing seizures; the other will have sham, or placebo, stimulation. When the TMS sessions are completed, participants will keep a diary of their seizures for another 8 weeks. Transcranial Magnetic Stimulation For TMS, an insulated wire coil is placed on the subject's scalp. A brief electrical current passes through the coil, creating a magnetic pulse that travels through the scalp and skull and causes small electrical currents in the cortex, or outer part of the brain. The stimulation may cause muscle, hand or arm twitching, or may cause twitches or temporary tingling in the forearm, head, or face muscles. During the stimulation, electrical activity of muscles is recorded with a computer or other recording device, using electrodes attached to the skin with tape. Some TMS sessions may be videotaped. Video-EEG Recordings The EEG recording device is housed in a small pouchlike container that is worn below the shoulder, attached to a belt worn around the waist. Phase(s): Phase II; MEDLINEplus consumer health information Study Type: Interventional Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting; Patient Recruitment and Public Liaison Office 1-800411-1222 prpl@mail.cc.nih.gov; TTY 1-866-411-1010 Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00048490;jsessionid=EDD480 749438722A453C398FE99C1577 · Treatment Of Primary Generalized Tonic-Clonic Seizures With An Investigational New Drug Condition(s): Epilepsy Study Status: This study is currently recruiting patients. Purpose - Excerpt: The purpose of this study is to evaluate the effectiveness and safety of an investigational new drug for supplemental therapy in subjects with primary generalized tonic-clonic seizures. Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00043901;jsessionid=EDD480 749438722A453C398FE99C1577 98 Seizures and Epilepsy · Metabolic Abnormalities in Children with Epilepsy Condition(s): Generalized Epilepsy; Infantile Spasms; Metabolic Disease; Partial Epilepsy; Seizures Study Status: This study is no longer recruiting patients. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study is designed to use positron emission tomography to measure brain energy use. Positron Emission Tomography (PET) is a technique used to investigate the functional activity of the brain. The PET technique allows doctors to study the normal processes of the brain (central nervous system) of normal individuals and patients with neurologic illnesses without physical / structural damage to the brain. When a region of the brain is active, it uses more fuel in the form of oxygen and sugar (glucose). As the brain uses more fuel it produces more waste products, carbon dioxide and water. Blood carries fuel to the brain and waste products away from the brain. As brain activity increases blood flow to and from the area of activity increases also. Researchers can label a sugar with a small radioactive molecule called FDG (fluorodeoxyglucose). As areas of the brain use more sugar the PET scan will detect the FDG and show the areas of the brain that are active. By using this technique researchers hope to answer the following questions; 4. Are changes in brain energy use (metabolism) present early in the course of epilepsy 5. Do changes in brain metabolism match the severity of patient's seizures 6. Do changes in metabolism occur over time or in response to drug therapy Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001325;jsessionid=EDD480 749438722A453C398FE99C1577 · Drug Interaction Study of Tegretol (Carbamazepine) and St. John's Wort in Normal Volunteers Condition(s): Healthy Study Status: This study is completed. Sponsor(s): Warren G Magnuson Clinical Center (CC) Purpose - Excerpt: St. John's Wort is a popular dietary supplement that many patients-including those with epilepsy or seizures-take in addition Clinical Trials 99 to their regular medicines to elevate mood or relieve stress. Preliminary research indicates that this supplement can speed the metabolism of the anti-seizure drug Tegretol, causing reduced blood levels of the drug. Patients who take Tegretol to control their seizures may have more frequent seizures if the blood level of the drug drops too low. A recent study shows that this effect is not seen when Tegretol is taken for at least 3 weeks. The present study will examine whether there is a medically important drug interaction between St. John's wort and Tegretol when Tegretol is taken for 1 day. Normal healthy volunteers between 21 and 65 years old who are not taking medicines that can affect the metabolism of drugs in the liver and have not used St. John's wort for at least 30 days may be eligible for this 25-day study. Participants will take a 400-mg dose of Tegretol after fasting overnight. Blood samples will be drawn the next day during a 12-hour clinic stay at the following intervals: just before the Tegretol dose and at 1, 2, 4, 6, 8, 10, 24, 34, 48 and 72 hours after the dose. A catheter will be placed in the vein to prevent the need for multiple needle sticks until after the 10-hour sample. After completing the blood sampling, participants will take 300 mg of St. John's wort 3 times a day with meals for 2 weeks. After 2 weeks, another fasting dose of Tegretol will be given and the 72-hour blood study will be repeated. This study may provide information important for the care of patients with epilepsy who take both Tegretol and St. John's Wort. Phase(s): Phase IV; MEDLINEplus consumer health information Study Type: Interventional Contact(s): Maryland; Warren G. Magnuson Clinical Center (CC), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006395;jsessionid=EDD480 749438722A453C398FE99C1577 · Early Randomized Surgical Epilepsy Trial Condition(s): Epilepsy; Epilepsy, Temporal Lobe; Seizures Study Status: This study is not yet open for patient recruitment. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: The purpose of this trial is to compare the effectiveness of early surgical intervention for mesial temporal lobe epilepsy to continued treatment with antiepileptic drugs. Phase(s): Phase III Study Type: Interventional 100 Seizures and Epilepsy Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00040326;jsessionid=EDD480 749438722A453C398FE99C1577 · Effect of Levetiracetam on Brain Excitability Condition(s): Healthy; Myoclonic Epilepsy Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study will examine the effect of the newly developed anti-epileptic drug, levetiracetam, on excitability of the cortex (surface layer) of the brain. Levetiracetam works differently from other anti-seizure drugs, but its mechanism is not well understood. This study may provide insight into a new protection mechanism against seizures as well as the effect of the drug on cortical excitability. Healthy normal volunteers 18 years of age and older may be eligible for this study. Candidates will have a medical history taken and undergo physical and neurological examinations. Participants will undergo two different procedures in four separate sessions. One procedure (cortical excitability) involves taking either levetiracetam or placebo (a look-alike inactive substance) and having transcranial magnetic stimulation (TMS). The other procedure (pinch-training related changes) involves taking levetiracetam or placebo, doing a motor exercise called pinch training, and having transcranial magnetic stimulation. For TMS, a very brief electrical current is passed through an insulated coil wire placed on the scalp. The magnetic pulse travels through the scalp and skull, causing small electrical currents in the cortex that may cause muscle, hand, or arm twitching or it may affect movements or reflexes. During the study, subjects may be asked to make movements, do simple tasks or tense muscles. Electrical activity of the muscles will be recorded using electrodes taped to the skin over the muscle. For the pinch training, the subject makes a brief, brisk pinch after each beat of a metronome every two seconds and then completely relaxes the hand until the next beat. Subjects will be tested on four different days at least 72 hours apart. Each session will last about 3 to 4 hours. Approximate schedule for cortical excitability testing: TMS (study 1) Take levetiracetam or placebo TMS (study 2) < 60 minutes after drug or placebo TMS (study 3) < 120 minutes after drug or placebo Approximate schedule for pinch-training related changes: Take levetiracetam or placebo TMS and pinch power measurement < 60 minutes after drug or placebo Pinch training for 30 Clinical Trials 101 minutes TMS and pinch power measurement Sample schedule: Session 1 < LTC and cortical excitability testing Session 2 < Placebo and cortical excitability testing Session 3 < LTC and pinch-training related changes Session 4 < Placebo and pinch-training related changes Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00006191;jsessionid=EDD480 749438722A453C398FE99C1577 · Mapping the Areas of the Brain Associated with Language in Children with Epilepsy Condition(s): Epilepsy; Seizures Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: Researchers are interested in studying if magnetic resonance imaging (MRI) is practical for locating the areas of the brain associated with language in children with epilepsy. When a region of the brain is active, it uses more fuel in the form of oxygen and sugar (glucose). As the brain uses more fuel it produces more waste products, carbon dioxide and water. Blood carries fuel to the brain and waste products away from the brain. As brain activity increases blood flow to and from the area of activity increases also. Patients participating in the study will be asked to perform tasks designed to test language skills while undergoing an MRI to detect areas of the brain using oxygen and receiving blood flow. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001366;jsessionid=EDD480 749438722A453C398FE99C1577 · Monitoring Patients with Uncontrolled Epilepsy Condition(s): Epilepsy; Seizures 102 Seizures and Epilepsy Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: This study is designed to evaluate patients with uncontrolled seizures. Seizures can be associated with and monitored by abnormal electrical activity in the brain. In this study researchers will use video-electroencephalography (EEG) to monitor patients with uncontrolled or suspected seizures. EEG works by measuring electrical activity in different areas of the brain. The video-EEG allows researchers to examine changes in the EEG along with the clinical features of seizures as they occur. In addition to monitoring electrical activity of the brain, researchers will take frequent antiepileptic drug blood levels. These measures will allow researchers to learn more about how each drug is absorbed and metabolized in the body. The information collected in the study will be used to place patients into other scientific studies testing new therapies for epilepsy. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001149;jsessionid=EDD480 749438722A453C398FE99C1577 · Phase II Randomized Study of Early Surgery vs Multiple Sequential Antiepileptic Drug Therapy for Infantile Spasms Refractory to Standard Treatment Condition(s): Spasms, Infantile; Epilepsy Study Status: This study is completed. Sponsor(s): National Center for Research Resources (NCRR); National Institute of Neurological Disorders and Stroke (NINDS); University of California, Los Angeles Purpose - Excerpt: Objectives: I. Evaluate the efficacy of surgical resection of an identifiable zone of cortical abnormality versus multiple drug therapy in children with infantile spasms refractory to standard therapy. II. Assess how infantile spasms interfere with development and whether this is partially reversible. III. Determine the predictors of good surgical outcome and whether surgery permanently controls seizures and improves development. Phase(s): Phase II Clinical Trials 103 Study Type: Interventional Contact(s): see Web site below Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004758;jsessionid=EDD480 749438722A453C398FE99C1577 · Phase III Double Blind Trial of Valproate Sodium for Prophylaxis of Post Traumatic Seizures Condition(s): Post-Traumatic Seizure Disorder; Head Injuries Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS); Harborview Medical Center Purpose - Excerpt: Objectives: I. Determine whether treating head injured patients with valproate sodium will reduce the risk of developing seizures as a result of the head injury. II. Determine the safety of valproate, the appropriate dose, and the effect valproate may have on the recovery of the brain's ability to compute numbers, solve problems, remember information, and control the movement of limbs after head injury. Phase(s): Phase III Study Type: Interventional Contact(s):. Study chairs or principal investigators: H. Richard Winn, Study Chair; Harborview Medical Center Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004817;jsessionid=EDD480 749438722A453C398FE99C1577 · Randomized Study of Nimodipine versus Magnesium Sulfate in the Prevention of Eclamptic Seizures in Patients with Severe Preeclampsia Condition(s): Pre-Eclampsia Study Status: This study is completed. Sponsor(s): FDA Office of Orphan Products Development; University of Utah Purpose - Excerpt: Objectives: I. Determine the effectiveness of nimodipine versus magnesium sulfate in the prevention of eclamptic seizures in patients with severe preeclampsia. Study Type: Interventional 104 Seizures and Epilepsy Contact(s):. Study chairs or principal investigators: Michael Anthony Belfort, Study Chair; University of Utah Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00004399;jsessionid=EDD480 749438722A453C398FE99C1577 · Transcranial Magnetic Stimulation for the Treatment of Poorly Controlled Partial Epilepsy Condition(s): Partial Epilepsy; Seizures Study Status: This study is completed. Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) Purpose - Excerpt: Transcranial Magnetic Stimulation (TMS) is a noninvasive technique that can be used to stimulate brain activity and gather information about brain function. It is very useful when studying the areas of the brain related to motor activity (motor cortex, corticospinal tract, and corpus callosum). Epilepsy is a condition associated with seizures as a result of an over excitable cerebral cortex. Despite the introduction of several new antiepileptic medications, less than half of the patients diagnosed with partial epilepsy are well controlled. However, studies have shown that non-invasive stimulation of the brain can decrease the excitability of the cerebral cortex. Researchers are interested in the potential therapeutic effects of TMS on patients with epilepsy that have responded poorly to standard medication. This study will use TMS to decrease the excitability of the areas of the brain responsible for seizures. Study Type: Observational Contact(s): Maryland; National Institute of Neurological Disorders and Stroke (NINDS), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States Web Site: http://clinicaltrials.gov/ct/gui/show/NCT00001666;jsessionid=EDD480 749438722A453C398FE99C1577 Clinical Trials 105 Benefits and Risks17 What Are the Benefits of Participating in a Clinical Trial? If you are interested in a clinical trial, it is important to realize that your participation can bring many benefits to you and society at large: · A new treatment could be more effective than the current treatment for seizures and epilepsy. Although only half of the participants in a clinical trial receive the experimental treatment, if the new treatment is proved to be more effective and safer than the current treatment, then those patients who did not receive the new treatment during the clinical trial may be among the first to benefit from it when the study is over. · If the treatment is effective, then it may improve health or prevent diseases or disorders. · Clinical trial patients receive the highest quality of medical care. Experts watch them closely during the study and may continue to follow them after the study is over. · People who take part in trials contribute to scientific discoveries that may help other people with seizures and epilepsy. In cases where certain diseases or disorders run in families, your participation may lead to better care or prevention for your family members. The Informed Consent Once you agree to take part in a clinical trial, you will be asked to sign an “informed consent.” This document explains a clinical trial’s risks and benefits, the researcher’s expectations of you, and your rights as a patient. What Are the Risks? Clinical trials may involve risks as well as benefits. Whether or not a new treatment will work cannot be known ahead of time. There is always a chance that a new treatment may not work better than a standard treatment. There is also the possibility that it may be harmful. The treatment you receive may cause side effects that are serious enough to require medical attention. This section has been adapted from ClinicalTrials.gov, a service of the National Institutes of Health: http://www.clinicaltrials.gov/ct/gui/c/a1r/info/whatis?JServSessionIdzone_ct=9jmun6f291. 17 106 Seizures and Epilepsy How Is Patient Safety Protected? Clinical trials can raise fears of the unknown. Understanding the safeguards that protect patients can ease some of these fears. Before a clinical trial begins, researchers must get approval from their hospital’s Institutional Review Board (IRB), an advisory group that makes sure a clinical trial is designed to protect patient safety. During a clinical trial, doctors will closely watch you to see if the treatment is working and if you are experiencing any side effects. All the results are carefully recorded and reviewed. In many cases, experts from the Data and Safety Monitoring Committee carefully monitor each clinical trial and can recommend that a study be stopped at any time. You will only be asked to take part in a clinical trial as a volunteer giving informed consent. What Are a Patient’s Rights in a Clinical Trial? If you are eligible for a clinical trial, you will be given information to help you decide whether or not you want to participate. As a patient, you have the right to: · Information on all known risks and benefits of the treatments in the study. · Know how the researchers plan to carry out the study, for how long, and where. · Know what is expected of you. · Know any costs involved for you or your insurance provider. · Know before any of your medical or personal information is shared with other researchers involved in the clinical trial. · Talk openly with doctors and ask any questions. After you join a clinical trial, you have the right to: · Leave the study at any time. Participation is strictly voluntary. However, you should not enroll if you do not plan to complete the study. · Receive any new information about the new treatment. · Continue to ask questions and get answers. Clinical Trials 107 · Maintain your privacy. Your name will not appear in any reports based on the study. · Know whether you participated in the treatment group or the control group (once the study has been completed). What about Costs? In some clinical trials, the research facility pays for treatment costs and other associated expenses. You or your insurance provider may have to pay for costs that are considered standard care. These things may include inpatient hospital care, laboratory and other tests, and medical procedures. You also may need to pay for travel between your home and the clinic. You should find out about costs before committing to participation in the trial. If you have health insurance, find out exactly what it will cover. If you don’t have health insurance, or if your insurance company will not cover your costs, talk to the clinic staff about other options for covering the cost of your care. What Questions Should You Ask before Deciding to Join a Clinical Trial? Questions you should ask when thinking about joining a clinical trial include the following: · What is the purpose of the clinical trial? · What are the standard treatments for seizures and epilepsy? Why do researchers think the new treatment may be better? What is likely to happen to me with or without the new treatment? · What tests and treatments will I need? Will I need surgery? Medication? Hospitalization? · How long will the treatment last? How often will I have to come back for follow-up exams? · What are the treatment’s possible benefits to my condition? What are the short- and long-term risks? What are the possible side effects? · Will the treatment be uncomfortable? Will it make me feel sick? If so, for how long? · How will my health be monitored? · Where will I need to go for the clinical trial? How will I get there? 108 Seizures and Epilepsy · How much will it cost to be in the study? What costs are covered by the study? How much will my health insurance cover? · Will I be able to see my own doctor? Who will be in charge of my care? · Will taking part in the study affect my daily life? Do I have time to participate? · How do I feel about taking part in a clinical trial? Are there family members or friends who may benefit from my contributions to new medical knowledge? Keeping Current on Clinical Trials Various government agencies maintain databases on trials. The U.S. National Institutes of Health, through the National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members, and physicians with current information about clinical research across the broadest number of diseases and conditions. The site was launched in February 2000 and currently contains approximately 5,700 clinical studies in over 59,000 locations worldwide, with most studies being conducted in the United States. ClinicalTrials.gov receives about 2 million hits per month and hosts approximately 5,400 visitors daily. To access this database, simply go to their Web site (www.clinicaltrials.gov) and search by “seizures and epilepsy” (or synonyms). While ClinicalTrials.gov is the most comprehensive listing of NIH-supported clinical trials available, not all trials are in the database. The database is updated regularly, so clinical trials are continually being added. The following is a list of specialty databases affiliated with the National Institutes of Health that offer additional information on trials: · For clinical studies at the Warren Grant Magnuson Clinical Center located in Bethesda, Maryland, visit their Web site: http://clinicalstudies.info.nih.gov/ · For clinical studies conducted at the Bayview Campus in Baltimore, Maryland, visit their Web site: http://www.jhbmc.jhu.edu/studies/index.html · For trials on neurological disorders and stroke, visit and search the Web site sponsored by the National Institute of Neurological Disorders and Stroke of the NIH: Clinical Trials 109 http://www.ninds.nih.gov/funding/funding_opportunities.htm#Clinica l_Trials General References The following references describe clinical trials and experimental medical research. They have been selected to ensure that they are likely to be available from your local or online bookseller or university medical library. These references are usually written for healthcare professionals, so you may consider consulting with a librarian or bookseller who might recommend a particular reference. The following includes some of the most readily available references (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · A Guide to Patient Recruitment : Today’s Best Practices & Proven Strategies by Diana L. Anderson; Paperback - 350 pages (2001), CenterWatch, Inc.; ISBN: 1930624115; http://www.amazon.com/exec/obidos/ASIN/1930624115/icongroupinterna · A Step-By-Step Guide to Clinical Trials by Marilyn Mulay, R.N., M.S., OCN; Spiral-bound - 143 pages Spiral edition (2001), Jones & Bartlett Pub; ISBN: 0763715697; http://www.amazon.com/exec/obidos/ASIN/0763715697/icongroupinterna · The CenterWatch Directory of Drugs in Clinical Trials by CenterWatch; Paperback - 656 pages (2000), CenterWatch, Inc.; ISBN: 0967302935; http://www.amazon.com/exec/obidos/ASIN/0967302935/icongroupinterna · The Complete Guide to Informed Consent in Clinical Trials by Terry Hartnett (Editor); Paperback - 164 pages (2000), PharmSource Information Services, Inc.; ISBN: 0970153309; http://www.amazon.com/exec/obidos/ASIN/0970153309/icongroupinterna · Dictionary for Clinical Trials by Simon Day; Paperback - 228 pages (1999), John Wiley & Sons; ISBN: 0471985961; http://www.amazon.com/exec/obidos/ASIN/0471985961/icongroupinterna · Extending Medicare Reimbursement in Clinical Trials by Institute of Medicine Staff (Editor), et al; Paperback 1st edition (2000), National Academy Press; ISBN: 0309068886; http://www.amazon.com/exec/obidos/ASIN/0309068886/icongroupinterna · Handbook of Clinical Trials by Marcus Flather (Editor); Paperback (2001), Remedica Pub Ltd; ISBN: 1901346293; http://www.amazon.com/exec/obidos/ASIN/1901346293/icongroupinterna 110 Seizures and Epilepsy Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Auditory: Pertaining to the sense of hearing. [EU] Autonomic: Self-controlling; functionally independent. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Carbamazepine: An anticonvulsant used to control grand mal and psychomotor or focal seizures. Its mode of action is not fully understood, but some of its actions resemble those of PHENYTOIN; although there is little chemical resemblance between the two compounds, their three-dimensional structure is similar. [NIH] Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Ceroid: A naturally occurring lipid pigment with histochemical characteristics similar to lipofuscin. It accumulates in various tissues in certain experimental and pathological conditions. [NIH] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Electroencephalography: The recording of the electric currents developed in the brain, by means of electrodes applied to the scalp, to the surface of the brain (intracranial e.) or placed within the substance of the brain (depth e.). [EU] Estradiol: The most potent mammalian estrogenic hormone. It is produced in the ovary, placenta, testis, and possibly the adrenal cortex. [NIH] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Clinical Trials 111 Gonadal: Pertaining to a gonad. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Intestinal: Pertaining to the intestine. [EU] Invasive: 1. Having the quality of invasiveness. 2. Involving puncture or incision of the skin or insertion of an instrument or foreign material into the body; said of diagnostic techniques. [EU] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Muscimol: Neurotoxic isoxazole isolated from Amanita muscaria and A. phalloides and also obtained by decarboxylation of ibotenic acid. It is a potent agonist at GABA-A receptors and is used mainly as an experimental tool in animal and tissue studies. [NIH] Nimodipine: A calcium channel blockader with preferential cerebrovascular activity. It has marked cerebrovascular dilating effects and lowers blood pressure. [NIH] Ophthalmology: A surgical specialty concerned with the structure and function of the eye and the medical and surgical treatment of its defects and diseases. [NIH] Paroxysmal: Recurring in paroxysms (= spasms or seizures). [EU] Preeclampsia: A toxaemia of late pregnancy characterized by hypertension, edema, and proteinuria, when convulsions and coma are associated, it is called eclampsia. [EU] Progesterone: Pregn-4-ene-3,20-dione. The principal progestational hormone of the body, secreted by the corpus luteum, adrenal cortex, and placenta. Its chief function is to prepare the uterus for the reception and development of the fertilized ovum. It acts as an antiovulatory agent when administered on days 5-25 of the menstrual cycle. [NIH] Prophylaxis: The prevention of disease; preventive treatment. [EU] Refractory: Not readily yielding to treatment. [EU] Saline: Salty; of the nature of a salt; containing a salt or salts. [EU] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, 112 Seizures and Epilepsy hallucinations, emotional disharmony, and regressive behavior. [NIH] Skull: The skeleton of the head including the bones of the face and the bones enclosing the brain. [NIH] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Taenia: A genus of large tapeworms. [NIH] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Urinalysis: Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening tests, determining specific gravity, observing any unusual color or odor, screening for bacteriuria, and examining the sediment microscopically. [NIH] 113 PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL ABOUT PART II In Part II, we introduce you to additional resources and advanced research on seizures and epilepsy. All too often, patients who conduct their own research are overwhelmed by the difficulty in finding and organizing information. The purpose of the following chapters is to provide you an organized and structured format to help you find additional information resources on seizures and epilepsy. In Part II, as in Part I, our objective is not to interpret the latest advances on seizures and epilepsy or render an opinion. Rather, our goal is to give you access to original research and to increase your awareness of sources you may not have already considered. In this way, you will come across the advanced materials often referred to in pamphlets, books, or other general works. Once again, some of this material is technical in nature, so consultation with a professional familiar with seizures and epilepsy is suggested. Studies 115 CHAPTER 4. STUDIES ON SEIZURES AND EPILEPSY Overview Every year, academic studies are published on seizures and epilepsy or related conditions. Broadly speaking, there are two types of studies. The first are peer reviewed. Generally, the content of these studies has been reviewed by scientists or physicians. Peer-reviewed studies are typically published in scientific journals and are usually available at medical libraries. The second type of studies is non-peer reviewed. These works include summary articles that do not use or report scientific results. These often appear in the popular press, newsletters, or similar periodicals. In this chapter, we will show you how to locate peer-reviewed references and studies on seizures and epilepsy. We will begin by discussing research that has been summarized and is free to view by the public via the Internet. We then show you how to generate a bibliography on seizures and epilepsy and teach you how to keep current on new studies as they are published or undertaken by the scientific community. The Combined Health Information Database The Combined Health Information Database summarizes studies across numerous federal agencies. To limit your investigation to research studies and seizures and epilepsy, you will need to use the advanced search options. First, go to http://chid.nih.gov/index.html. From there, select the “Detailed Search” option (or go directly to that page with the following hyperlink: http://chid.nih.gov/detail/detail.html). The trick in extracting studies is found in the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the 116 Seizures and Epilepsy format option “Journal Article.” At the top of the search form, select the number of records you would like to see (we recommend 100) and check the box to display “whole records.” We recommend that you type in “seizures and epilepsy” (or synonyms) into the “For these words:” box. Consider using the option “anywhere in record” to make your search as broad as possible. If you want to limit the search to only a particular field, such as the title of the journal, then select this option in the “Search in these fields” drop box. The following is a sample of what you can expect from this type of search: · Developmental Language Disorders and Epilepsy Source: Journal of Paediatrics and Child Health. 33(3): 277-280. June 1997. Contact: Available from Blackwell Science Pty Ltd. P.O. Box 378, Carlton, Victoria 3053, Australia. 61 3 9347 0300. Fax 61 3 9349 3016. Summary: This article reviews studies connecting developmental language disorders and epilepsy. The association of speech and language disorders with epilepsy is well known in children with acquired epileptic aphasia, involving such entities as Landau-Kleffner syndrome (LKS), continuous spike wave in slow wave sleep (CSWSS) epilepsy, and benign partial epilepsy with centro temporal spikes (BPECTS). The possible association between epilepsy and a subgroup of children with developmental dysphasia is reported less frequently. Lack of controlled prospective studies of sleep electroencephalograms (EEG), and the use of medication, in children with developmental dysphagia, may deny appropriate treatment strategies to children with severe developmental speech and language disorders. The authors recommend that before antiepileptic medication is tried in individual children, limitations should be discussed with the parents: the treatment duration should be determined; goals should be set for continuation of therapy; pretreatment measures of speech and language should be carried out, including use of video records and standardized tests; the treatment should be at dosage levels used to control seizures; and there should be close monitoring for side effects. 1 table. 38 references. · Direct Medical Costs of Refractory Epilepsy Incurred by Three Different Treatment Modalities: A Prospective Assessment Source: Epilepsia. 43(1):96-102, January 2002. Summary: Researchers prospectively compared epilepsy-related direct medical costs (ERDMC's) incurred by different treatment modalities for people with refractory seizures, including conservative polytherapy with/without novel antiepileptic drugs (AED's), epilepsy surgery (ES), or Studies 117 vagus nerve stimulation (VNS). A group of 84 patients in Belgium completed a presurgical evaluation protocol. Twenty-four were treated with continued AED polytherapy only, 35 underwent ES, and 25 had VNS. Researchers prospectively calculated the annual costs in the 2 years preceding the therapeutic decision and during the followup period. They also prospectively compared (1) frequency of complex partial seizures with/without secondary generalization; (2) dosage and number of AED's; and (3) number of hospital admission days, clinic visits, and laboratory tests prior to and following the therapeutic decision. Results indicated that ongoing daily treatment of people who underwent resective surgery cost significantly less than more conservative treatments. Among people who could not have resective surgery, ERDMC showed a significant decrease in people treated with VNS compared to those treated conservatively. The researchers conclude that by offering ES and VNS to patients, the costs of the most expensive patient group are reduced to the mean cost level of patients with refractory epilepsy. 2 tables, 16 references. · Diet Enriched With Omega-3 Fatty Acids Alleviates Convulsion Symptoms in Epilepsy Patients Source: Epilepsia. 43(1):103-104, January 2002. Summary: Researchers investigated whether taking a dietary supplement that contained omega-3 polyunsaturated fatty acids (n-3 PUFA's) would alleviate and/or reduce the frequency of epileptic seizures in people with central nervous system diseases who were taking anticonvulsant drugs. Participants were patients hospitalized in Israel, all of whom had profound mental retardation and epilepsy secondary to another primary central nervous system disease. Researchers developed a spread containing 65 percent n-3 PUFA's that was added to the daily diet. Of the 21 patients, only 5 were willing to eat the spread. They ate it at breakfast for 6 consecutive months. Researchers examined their medical features, drug therapy, and seizure frequency before and after the 6-month trial. All five patients showed significant improvement and alleviation in seizure frequency and strength. There were no adverse effects noted among any of the participants. The researchers conclude that n-3 PUFA's can alleviate symptoms of human epilepsy, although the biologic mechanism of this activity remains unknown. 1 table, 11 references. 118 Seizures and Epilepsy · Coping With the Challenge of Transition in Older Adolescents With Epilepsy Source: Seizure. 11(1):33-39, January 2002. Summary: Researchers investigated the effects of epilepsy on psychological adjustment, coping behavior, and transition to adulthood among 36 people age 16 to 21 years with epilepsy and a control group of 31 of their peers. Participants were recruited from neurologists' offices. Each participant received a mailed questionnaire that measured psychological adjustment (self-efficacy, negative and positive affect, use of coping style, self-esteem, and strategy related to transition to adulthood) and adolescent coping. Participants with epilepsy also provided information on acceptance of illness, seizure severity, use of coping style, perception of control over seizures, and strategy related to epilepsy. Data analysis indicated that there were no statistically significant differences between the groups on measures of self-esteem, affect, and self-efficacy. Members of the group with epilepsy had significantly more non-productive coping than members of the control group. The control group had significantly more problem-solving coping and significantly more bias toward using problem solving than the group with epilepsy. There were no significant differences between the two groups on measures of psychological adjustment, although psychological adjustment was found to be related to coping response in the group with epilepsy. The researchers conclude that the experience of having epilepsy among older adolescents has no significantly detrimental effect on psychological adjustment unless combined with a stressful situation, such as transition to adulthood. 4 tables, 26 references. · Clinical Conundrum of Neonatal Seizures Source: Archives of Disease in Childhood. 86(2):F75-F77, March 2002. Summary: The author reviews and discusses the clinical aspects of neonatal seizures. The discussion considers the characteristics of seizures in patients with neonatal epilepsy, clinical monitoring of neonatal seizures, and managing neonatal seizures. The incidence of seizures in the neonatal period is considerably higher than in any other time of life. Laboratory animal studies have shown that the immature brain is more prone to seizure activity, but, paradoxically, the immature brain appears to be less vulnerable than the adult brain to neuronal damage resulting from seizures. There is increasing evidence that neonatal seizures have an adverse effect on neurodevelopmental progression and may predispose to cognitive, behavioral, and epilepsy-related complications later in life. A new electroencephalographic (EEG) technique, known as amplitude integrated EEG (aEEG) monitoring, has been shown to accurately predict Studies 119 outcomes after severe birth asphyxia in full-term infants and can be used to interpret seizure activity lasting at least 20 seconds or to identify abnormal interseizure activity. The author notes that aEEG monitoring can be used in neonatal medicine to monitor pharmacologically paralyzed infants to detect seizure activity that would be missed clinically and to predict the outcome in neurologically compromised infants. Phenobarbitone has been the major antiepileptic drug (AED) used to treat neonatal seizures, but its efficacy remains uncertain. The few clinical trials have produced equivocal evidence of phenobarbitone's ability to control seizures, although some have suggested that the drug has a partial effect, being able to control seizures in infants with relatively mild seizures. Phenobarbitone has been reported to have adverse effects on the developing brain when administered to young animals. Very little is known about the efficacy and side effects of other commonly used AED's, aside from anecdotal reports. A practical approach for managing neonatal seizures is based on avoiding over treatment and minimizing the number of AED's used. AED treatment should be stopped as soon as possible. 28 references. · Psychostimulants and Epilepsy Source: Epilepsia. 43(Supplement 2):28-31, 2002. Summary: Researchers performed a review of studies examining the effects of psychostimulants on seizure frequency in epilepsy patients. The following drugs are included: Cocaine, amphetamine and related agents, caffeine, cannabinoids, and psychedelic drugs. Few epidemiologic studies examining the prevalence of drug-induced seizures have been conducted. Among individual drugs, cocaine use is clearly associated with seizures. The frequency ranged from 1 to 40 percent, depending on the type of study conducted. Amphetamines and related drugs rarely induce epileptic seizures at therapeutic doses, but seizures may occur after the first doses. Caffeine may cause seizures at high doses; its seizure-inducing activity is attributed to its adenosine receptor antagonizing properties. Marijuana, unlike other psychostimulants, has been shown experimentally to produce a serotonin-mediated anticonvulsant action. Psychedelic drugs such as lysergic acid diethylamide (LSD), seldom cause seizures. Ingestion of methylenedioxymethamphetamine (ecstasy) and phencyclidine (PCP), however, have been associated with seizures. 22 references. · Memory Complaints in Medically Refractory Epilepsy: Relationship to Epilepsy-related Factors Source: Epilepsy and Behavior. 3(2):165-172, April 2002. 120 Seizures and Epilepsy Summary: Researchers conducted a multicenter study on memory complaints in patients with epilepsy who presented with subjective complaints about memory problems in daily life. Participants included 252 patients with refractory seizures in the Netherlands; about 79 percent had some type of partial seizure, and 70 percent had complex partial seizures. Researchers measured memory complaints with a standardized memory questionnaire (GKLE). They analyzed the type of memory complaints and examined the relationship between subjective complaints and several epilepsy-related factors. These include (1) seizure type, (2) lateralization and location of the focus, (3) etiology, (4) duration, (5) age at onset, and (6) antiepileptic medication. Patients experienced significantly more memory complaints than normal controls. Patients of older age and higher intelligence level complained more about their memory functioning. Neuroticism showed a significant relationship to the total complaint score. Results indicated that the amount of subjective complaints is not related to the localization nor lateralization of the epileptic disturbances. Patients with a longer duration of epilepsy complained significantly more about memory problems, especially about retrieving information from memory. All other epilepsy-related factors showed no relationship to memory complaints. 7 tables, 19 references. · Refractory Epilepsy: A Progressive, Intractable but Preventable Condition? Source: Seizure. 11(2):77-84, March 2002. Summary: The authors propose a hypothesis for the conceptual understanding and prevention of refractory epilepsy based on accumulated laboratory findings and an improved knowledge of the natural history of treated epilepsy. Refractory epilepsy can be recognized as a distinct condition with multifaceted dimensions, including neurobiochemical plastic changes, cognitive decline and psychosocial dysfunction, leading to dependent behavior and a restrictive lifestyle. The biological basis of refractoriness may be multifactorial, and may include the severity of the syndrome and/or underlying neuropathology, abnormal reorganization of neuronal circuitry, alteration in neurotransmitter receptors, ion channelopathies, reactive autoimmunity, and impaired antiepileptic drug (AED) penetration to the seizure focus. Recurrent seizures may be the cause of some of these changes. The authors hypothesize that refractory epilepsy may be prevented by interrupting this self-perpetuating progression. Patients identified early in the clinical course can be targeted early for effective therapeutic intervention. Failure of two first line AED's due to lack of efficacy or poor tolerability should prompt consideration of epilepsy surgery in a patient Studies 121 with a resectable brain abnormality. For the majority of patients not suitable for curative surgery, AED's should be combined with the aim of achieving synergism. This strategy has the potential to improve outcome by preventing the insidious progression to intractable refractoriness and a downward spiraling quality of life. 2 tables, 95 references. · Temporal Lobe Epilepsy of Adult Age of Possible Idiopathic Nature Source: Seizure. 11(2):131-135, March 2002. Summary: Researchers attempted to verify the existence of sporadic cases of temporal lobe epilepsy (TLE) of possible idiopathic nature with onset in adult life and to define their characteristics. They examined all patients with focal seizures suggestive of a temporal lobe origin who attended an epilepsy center in Genoa, Italy, between 1990 and 1998, and who were age 18 to 50 years at onset. Of 237 patients with a clinical diagnosis of TLE, 159 were included in the study; 14 (8.8 percent) identified as having idiopathic TLE (Group 1) were compared with the remaining 145 subjects (Group 2). The main characteristics of Group 1 were (1) a high familial incidence of epilepsy (42.8 percent), (2) the prevalence of autonomic seizures, (3) low seizure frequency at onset, and (4) good prognosis. The difference between the two groups was statistically significant for family history for epilepsy and for freedom from seizures after medication. The researchers conclude that the distinctive features of the subjects identified suggest that at least some of these patients may have familial TLE. Whether this disorder may be present in sporadic form remains a matter of debate which must await the identification of the gene responsible for this disorder. Till then, the authors note that it is worthwhile to underline the better prognosis of these patients compared to those that did not meet these criteria. 2 tables, 12 references. · Controversy of Birth Order as a Risk Factor for Epilepsy: A Study From Saudi Arabia Source: Acta Neurologica Scandinavia. 105(3):174-178, March 2002. Summary: Researchers examined the relationship between birth order and epilepsy to determine if birth order is a risk factor for epilepsy in a community where large families are very common. They enrolled in the study all patients with epilepsy seen at King Fahad National Guard Hospital, Saudi Arabia, between January 1994 and December 1997 and their siblings. The patients met the following criteria: (1) They were the first member in a given family to be diagnosed with epilepsy, (2) they were at least age 15 years, and (3) all their siblings were alive at the time of the study. Siblings with epilepsy and half siblings were excluded from the analysis. Researchers analyzed the data by arranging the patients by 122 Seizures and Epilepsy birth order and stratifying them by sibship size. Odds ratios (OR's) for birth order being a risk factor for epilepsy were computed using standard case-control statistical techniques. The analysis included 336 patients with epilepsy and 1,961 siblings. The mean age of the patients at study enrollment was 30 years. Clinical records showed that 43 patients had idiopathic epilepsy, 112 had cryptogenic epilepsy, and 77 had unclassifiable epilepsy. Family size varied from 1 to 11, with a mean of 6.8. Lower birth order was significantly associated with an increased risk of epilepsy and the risk decreased with higher birth orders. For birth order one, the OR was 2.08; for birth order two, the OR was 1.51; for birth order three, the OR was 1.64; for birth order four, the OR was 1.10; for birth order five, the OR was 0.95; for birth orders six and higher, the OR's ranged from 0.25 to 0.5. The OR's for birth orders one through three represented statistically significant increases in epilepsy risk. The OR's for birth order six and higher represented significantly decreased epilepsy risks. An analysis of the influence of seizure type and epilepsy syndrome conducted in 259 patients and 1,313 siblings for whom this type of information was available indicated that first birth order was significantly associated with partial seizures and cryptogenic epilepsy. No significant association between birth order and seizure or epilepsy type was found for the other epilepsy syndromes or generalized seizures. Researchers conclude that lower birth order does seem to be associated with an increased risk of epilepsy, especially for cryptogenic epilepsy. 3 tables, 24 references. · Is Refractory Epilepsy Preventable? Source: Epilepsia. 43(4):437-444, April 2002. Summary: The authors discuss refractory epilepsy and the question of whether it is preventable. The discussion is based on a review of the published literature and addresses the following topics: (1) Basic research; (2) clinical, epidemiologic, and pediatric data relevant to the issue of whether refractory epilepsy is progressive; (3) early identification of refractory epilepsy; (4) the issue of whether progressive epilepsy can be halted; and (5) pediatric issues in refractory epilepsy. The majority (60 to 70 percent) of epilepsy patients will have their seizures controlled with a single antiepileptic drug (AED) whose selection is determined by the type of seizure disorder. For the remaining patients, their seizures will not be controlled by AED's. They will typically have frequent and disabling seizures. Patients who suffer frequent recurrent seizures are commonly referred to as having refractory epilepsy. These patients will undergo multiple drug trials, which typically do not achieve complete seizure remission. Refractory epilepsy is also associated with increased Studies 123 morbidity (from seizures and AED's), social isolation, unemployment, and an overall diminished quality of life. There is some evidence that refractory epilepsy is a progressive disorder, which if controlled early enough, might be prevented from developing into a full syndrome. The problem lies in identifying at an early stage patients whose disease is likely to progress to intractability. Although there are some epileptic syndromes, such as medial temporal lobe epilepsy, that appear to be progressive and if allowed to progress presents a risk of becoming refractory, there exist no known markers that can enable clinicians to identify with confidence cases that are likely to progress to intractability. It may be possible, however, to predict refractory epilepsy early by using epidemiologic data, genetic analysis, neuroimaging techniques, and syndrome classification. Predicting intractability in children is not as easy as in adults, where lack of a satisfactory response to a second AED is usually taken as indicative of intractability. Predicting intractability as soon as the first seizure occurs is considered extremely important in children, because early seizure control is likely to improve cognitive outcome. Some of the newer drugs can be used as a first-line treatment for specific syndromes. Epilepsy surgery may be offered at progressively younger ages, allowing some epileptic syndromes previously considered to be highly refractory to be controlled. 97 references. Federally Funded Research on Seizures and Epilepsy The U.S. Government supports a variety of research studies relating to seizures and epilepsy and associated conditions. These studies are tracked by the Office of Extramural Research at the National Institutes of Health.18 CRISP (Computerized Retrieval of Information on Scientific Projects) is a searchable database of federally funded biomedical research projects conducted at universities, hospitals, and other institutions. Visit CRISP at http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen. You can perform targeted searches by various criteria including geography, date, as well as topics related to seizures and epilepsy and related conditions. For most of the studies, the agencies reporting into CRISP provide summaries or abstracts. As opposed to clinical trial research using patients, many federally funded studies use animals or simulated models to explore 18 Healthcare projects are funded by the National Institutes of Health (NIH), Substance Abuse and Mental Health Services (SAMHSA), Health Resources and Services Administration (HRSA), Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDCP), Agency for Healthcare Research and Quality (AHRQ), and Office of Assistant Secretary of Health (OASH). 124 Seizures and Epilepsy seizures and epilepsy and related conditions. In some cases, therefore, it may be difficult to understand how some basic or fundamental research could eventually translate into medical practice. The following sample is typical of the type of information found when searching the CRISP database for seizures and epilepsy: · Project Title: AN IMPLANTABLE DEVICE TO PREDICT AND PREVENT SEIZURES Principal Investigator & Institution: Dichter, Marc A.; Professor; Neurology; University of Pennsylvania 3451 Walnut Street Philadelphia, Pa 191046205 Timing: Fiscal Year 2001; Project Start 5-AUG-2001; Project End 1-JUL2006 Summary: Epilepsy affects 50 million people worldwide, and 2.5 million in the United States alone. Fully 25 percent of those with recurrent seizures cannot be controlled by current medical or surgical treatment, and must resort to high doses of sedating medications or experimental therapy. Even when seizures are controlled, patients bear a significant burden of neurological and medication side effects. We propose to assemble an ensemble of accomplished investigators from the University of Pennsylvania, Georgia Institute of Technology, Children's Hospital of Philadelphia and IntelliMedix, a small start-up company through the GIT and Penn, in an intensive five to ten year effort to create a novel therapy for refractory epilepsy: an implantable closed loop system capable of predicting epileptic seizures prior to electrical and behavioral onset and triggering intervention to abort them before clinical expression. This diverse group of investigators represents multiple disciplines and areas of expertise including bioengineering, computer science, computational modeling of neuronal networks, image processing, clinical adult and pediatric epilepsy, cellular and molecular neuroscience, neurophysiology and neuropharmacology. The work will have three major thrusts: (1) Seizure Prediction: Developing and refining seizure prediction algorithms derived from data obtained from implanted biosensors in adults, children and in animal models of human epilepsy, capable of predicting seizures hours to minutes prior to electrical and clinical onset, (2) Mechanisms of ictogenesis: Unraveling the cellular, molecular, neurophysiologic and neuronal network mechanisms underlying the observed signal changes identified by these algorithms through in-vitro and in-vivo experiments in animals, recordings in human candidates for epilepsy surgery, and modeling these findings via computer simulations in order to refine predictive and intervention strategies, (3) Therapeutics: Developing strategies aimed at specific points in the "ictogenic" process, Studies 125 as discovered above, consisting of electrophysiological and pharmacological interventions to disrupt the cascade of events which lead to seizures, in ways which do not interfere with normal brain function. This work will directly give rise to commercially viable intellectual property including: implantable biosensors, miniaturized biocompatible electrical stimulation and drug infusion hardware, stimulation paradigms, customized pharmacologic agents, customized software/hardware interfaces for signal acquisition, processing and synchronization with algorithms for driving therapeutic interventions. It is hoped that a closed loop seizure prediction and prevention device will be implementable in a 5-10 year period and will significantly improve the quality of life of individuals with epilepsy. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: CASPASES MEDIATE SEIZURE-INDUCED BRAIN INJURY Principal Investigator & Institution: Henshall, David C.; ; Emanuel Hospital and Health Center 2801 N Gantenbein Ave Portland, or 97227 Timing: Fiscal Year 2001; Project Start 1-AUG-2001; Project End 1-JUL2005 Summary: Progressive hippocampal atrophy has been demonstrated in humans with epilepsy. Such seizure-induced neurodegeneration may be under the control of the caspase family of cell death regulating enzymes, as our recent studies in brains of patients with intractable epilepsy showed the presence and activation of the programmed cell death/apoptosis pathway. initiator caspases begin the cell death process: following activation of surface- expressed death receptors - the extrinsic pathway, or following mitochondrion-based events within the cell - the intrinsic pathway. Subsequently these caspases activate downstream effector caspases, which carry out the execution and disassembly of the cell. Intervention in this cell death cascade has considerable implications for the therapeutic treatment of neurodegenerative diseases to which epilepsy may now be added. Therefore the broad, long-term goals of this proposal are to characterize the contribution of the caspase family of cell death-controlling enzymes in mediating seizure-induced brain injury. They hypotheses to be tested are (A) Neuronal death occurs following seizures and is initiated by caspases 2, 8 and/or 10 of the extrinsic death receptor pathway. (B) Caspase 2, 8 and/or 10 activation requires recruitment to death receptors by adaptor proteins in response to death ligands. (C) Activation of the intrinsic, mitochondrion-dependent caspase-9 pathway is co- dependent on the death receptor pathway via the cytochrome c releasing factor Bid. (D) Novel effector caspases 6 and 7 126 Seizures and Epilepsy are activated by seizures via these extrinsic and intrinsic pathways and contribute to neuronal death. The specific aims are: 1) Characterize the expression, processing and consequences of activation of the extrinsic death-signaling pathway caspases 2, 8 and 10 using an in vivo rat model of brief limbic seizures. 2) Characterize the expression and functional interaction of death receptors with their adaptor protein(s) in the signal transduction and recruitment of caspases 2, 8 and 10 following seizures. 3) Characterize the expression, processing and consequences of activation of the intrinsic caspase-9-dependent pathway in seizure-induced brain injury. 4) Characterize the activation of the novel death effector caspases 6 and 7 in response to the extrinsic and/or intrinsic initiator pathways following seizures. 5) Characterize the involvement of extrinsic, intrinsic and death effector caspases mediating apoptosis induced by seizure-like activity in neuronal cultures in vitro. Elucidation of the molecular control of seizure-induced cell death will further our understanding of brain injury processes and take a significant step toward therapeutic approaches to reduce brain injury in epilepsy. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: CHILDHOOD EPILEPSY-- FACTORS AFFECTING ADAPTATION Principal Investigator & Institution: Austin, Joan K.; Distinguished Professor; None; Indiana Univ-Purdue Univ at Indianapolis 355 N Lansing Indianapolis, in 46202 Timing: Fiscal Year 2001; Project Start 1-FEB-1986; Project End 0-APR2004 Summary: Description (adapted from investigator's abstract): Children with epilepsy experience higher rates of mental health disturbances and academic problems than children with other chronic physical conditions. Until recently, one assumption has been that many of these problems result from poor psychosocial adjustment to living with seizures. However, in our current study we found high rates of behavior problems already existing at the time of the first recognized seizure, especially in children with previously unrecognized seizures. This important finding suggests that, at least in some children, epilepsy is a pervasive condition in which seizures are accompanied by behavioral disturbances. Moreover, it suggests that neurological variables should be studied in relation to behavior problems, beginning at the time of the child's first recognized seizures. The major purpose of this continuation request is to determine how neurological variables (brain structure and function, neuropsychological functions, intelligence, and seizure characteristics) interact with other child (age, gender, and temperament) and family Studies 127 variables (e.g., parenting and family resources) to predict child mental health disturbances and academic problems over the first year following the first recognized seizure. The sample will be 360 children (ages 6-14 years, IQ > 70) with a first recognized seizure and 240 healthy siblings (ages 6-17 years). There also will be a pilot sample of 60 children with seizures who have IQs between 55 and 70. Neurobiological data will include results from MRI, EEG, and individualized tests of academic achievement, intelligence, and neuropsychological functioning. Data on child and family variables will be obtained from the major caregiver and from children who are at least 8 years old. Data analyses will include repeated measures analysis of covariance, multiple regression, and structural equation modeling. No previous studies have investigated all of these important variables together within the context of childhood epilepsy, especially those with low IQ. Findings will greatly increase understanding of the natural history of adaptation problems in childhood epilepsy that is needed for effective interventions. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: CHRONOBIOLOGY OF PARTIAL EPILEPSY Principal Investigator & Institution: Quigg, Mark S.; Assistant Professor; Neurology; University of Virginia Charlottesville Box 400195 Charlottesville, Va 22904 Timing: Fiscal Year 2001; Project Start 0-SEP-1997; Project End 1-MAY2003 Summary: (provided by applicant): Mesial temporal lobe epilepsy (MTLE), the most common partial epilepsy, accounts for the majority of patients with uncontrolled seizures. Seizures in MTLE do not strike randomly but occur in daily patterns. Possible influences on the timing of seizures include those factors that underlie circadian oscillation and that facilitate or inhibit seizures. Influences provided by the hypothalamicpituitaryadrenal axis (HPAA) are logical candidates to modulate seizures and will be the focus of the proposed experiments. This proposal examines the temporal distribution of spontaneous, limbic seizures in a unique animal model of partial epileps~ that shares clinical, electrographic, histological, and timing similarities with MTLE. The specific aim of this proposal is to evaluate the role of endogenous rhythmicity of the HPAA in the circadian modulation of experimental limbic epilepsy. Hypothesis 1. Rhythmicity of the HPAA is intact in experimental epilepsy. Hypothesis 2. Corticosterone releasing hormone (CRH) is differentially affected within the hypothalamus and limbic system by lesions at different levels of the clockHPAA system. Our data suggests that circadian mechanisms continue to function in the epileptic 128 Seizures and Epilepsy rat and that neuronal density in regions important in HPAA regulation is normal. We will evaluate whether CRH expression remains rhythmic in intact animals as well as in animals that have lesions of the clock or of the HPAA. Hypothesis 3. The normal variations of CRH and corticosterone are necessary for circadian recurrence of limbic seizures. We predict that alterations of inputs into the HPAA will cause changes in the circadian distribution of seizures. Previous results show that seizures occur in an endogenously mediated circadian rhythm.. In summary, these studies will provide insight into the chronoblological factors that facilitate partial seizure expression and may provide new perspectives into treatments for poorly controlled partial epilepsy. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: DEVELOPMENTAL PLASTICITY AND CHRONIC EPILEPSY Principal Investigator & Institution: Swann, John; Research Scientist; Pediatrics; Baylor College of Medicine 1 Baylor Plaza Houston, Tx 77030 Timing: Fiscal Year 2001; Project Start 5-JAN-1999; Project End 0-NOV2002 Summary: The effects of early-life seizures on the developing nervous system remain controversial. Clinical indications are that severe and repeated seizures may contribute to chronic epilepsy and impairment of learning in children. However, few experimental studies have explored this possibility. Recent studies obtained in rats suggest this may be the case since tetanus toxin-induced seizures in infancy lead of chronic focal epilepsy in hippocampus and impairment in the acquisition of spatial memory. In other experiments, recordings in adulthood from in vitro slices demonstrate abnormal epileptiform discharges arising from hippocampal area CA/3C. Morphological studies show a dramatic loss of dendritic spines on CA/3C pyramidal cells in these same chronically epileptic rats. Surprisingly the alterations seen in adulthood are not present in early- life when recurrent seizures are so frequent. These and a number of other observations lead us to propose a "two hit" model of epileptogenesis. During Stage 1 of this hypothetical scheme, the developing dendrites of hippocampal pyramidal cells likely undergo a transient but significant excitotoxic insult. Thereafter, the dendrites recover, but during stage 2 high frequency interictal discharging of hippocampal networks produces a progressive epileptogenesis in which epileptic foci are strengthened and dendritic spines gradually decrease in density. In proposed electrophysiological experiments, we will systematically examine the ontogeny of the focal epilepsy in an attempt to support this hypothetical scheme. At the same time, anatomical studies Studies 129 will describe the development of dendritic abnormalities. Other experiments will examine how seizures produced these effects. During early postnatal life, patterns of connectivity in the central nervous system are anatomically remodeled. Widespread projections are pruned and adult patterns of connectivity result form an elaboration of synapses at selected target sites. This process of remodeling is known to rely on action potential based neuronal activity. Thus, it seems plausible that the abnormal activity that accompanies frequent seizures may activate remodeling mechanisms to produced abnormal patterns of connectivity. Since seizures in area CA3 are mediated by recurrent excitatory synapses, they likely undergo long term potentiation (LTP). However, afferents projects to these cells but not participating in seizures may undergo heterosynaptic long term depression (LTD). Experiments in in vitro slices support this notion. Thus, LTP of recurrent excitation could lead to persistent epileptiform activity while heterosynaptic LTD may lead to synapse loss. Dendritic spine loss could be a consequence of a partial deafferentation of pyramidal cell dendrites. Preliminary results appear to support this idea since the highly specialized dendritic spines and presynaptic terminals of the mossy fiber pathway are both reduced in number in epileptic rats. Proposed studies will verify these anatomical alterations and examine their physiological impact. Other experiments will attempt to prevent the development of epilepsy by chronically treating rats with NMDA receptor antagonists. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: EARLY RANDOMIZED SURGICAL EPILEPSY TRIAL Principal Investigator & Institution: Engel, Jerome J.; Professor; Neurology; University of California Los Angeles 10920 Wilshire Blvd., Suite 1200 Los Angeles, Ca 90024 Timing: Fiscal Year 2002; Project Start 1-SEP-2002; Project End 0-JUN2007 Summary: (provided by applicant): This grant application for an early randomized surgical epilepsy trial (ERSET) was originally prepared with the help of planning grant R21 NS37897, awarded in recognition of the fact that mesial temporal lobe epilepsy (MTLE) is a surgically remediable syndrome, that surgical treatment for this disorder is underutilized, and that true equipoise exists concerning the relative benefits of surgery vs. continued treatment with new antiepileptic drugs, early in the course of the disorder. We now submit a revised proposal for a multicenter randomized controlled trial (RCT) to compare the efficacy of early surgical intervention for MTLE with continued optimal pharmacotherapy. The primary outcome measure will be freedom from 130 Seizures and Epilepsy disabling epileptic seizures (complex partial and secondarily generalized seizures, and simple partial seizures that are apparent to an observer). Patients aged 12 years and older with suspected MTLE will be candidates for recruitment if disabling seizures: 1) have not responded to two or more antiepileptic drugs, one of which must be either Dilantin, Tegretol, or Carbatrol, and 2) have not persisted, according to defined criteria, for more than two years. Fifteen epilepsy surgery centers spaced evenly across the country will actively recruit patients meeting these criteria. These patients will undergo a rigid presurgical evaluation protocol, standardized across centers, and 200 surgical candidates will then be randomized to either anteromesial temporal resection or two years of additional pharmacotherapy. Studies will test five hypotheses: 1) Surgical treatment will be more effective than medical treatment in reducingthe frequency and severity of epileptic seizures; 2) Surgical treatment will be more effective than medical treatment in improving quality of life; 3) Surgical treatment will be more effective than medical treatment in improving psychological and social function; 4) Morbidity and mortality associated with surgical treatment will be no greater than that associated with medical treatment; and 5) Progressive hippocampal atrophy and mesial temporal hypometabolism will occur only in patients who continue to have frequent complex partial and generalized tonic-clonic seizures. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: EFFECTS OF TREATING OBSTRUCTIVE SLEEP APNEA IN EPILEPSY Principal Investigator & Institution: Malow, Beth A.; Associate Professor; Neurology; University of Michigan at Ann Arbor 3003 South State, Room 1044 Ann Arbor, Mi 48109 Timing: Fiscal Year 2002; Project Start 5-SEP-2002; Project End 1-JUL-2005 Summary: (provided by applicant): Epilepsy affects approximately 2.5 million Americans, resulting in substantial disability. Because up to 30% of patients with epilepsy continue to have seizures despite appropriate treatment with antiepileptic medications, additional interventions to improve seizure control are needed. One approach to improving seizure control is to treat coexisting sleep disorders, such as obstructive sleep apnea. Obstructive sleep apnea (OSA) may exacerbate seizures via sleep fragmentation, sleep deprivation, or other pathophysiological processes that have not yet been determined. The investigators recently documented that OSA is common in epilepsy patients with seizures refractory to medical treatment. In addition, preliminary data in the form of retrospective case series by the investigators and others have Studies 131 suggested that treatment of OSA may improve seizure control. However, no prospective studies have been done to verify these findings. Proof that treating OSA is effective in reducing seizure frequency will require a multicenter Randomized Clinical Trial (RCT). This large RCT will test the hypothesis that treatment of OSA in patients with epilepsy refractory to medical treatment will reduce seizure frequency. In addition, the RCT will assess the impact of treating OSA on health-related quality of life and on daytime sleepiness, common concerns in epilepsy patients that are often attributable to antiepileptic medications or to frequent seizures rather than to a coexisting sleep disorder. The proposed aims of the Pilot Clinical Trial (PCT) are to determine critical information for the design of the RCT to allow for the testing of the above hypotheses in the RCT. In the PCT subjects 18 years and older with 4 or more seizures per month who meet survey criteria for OSA and other study criteria will be recruited at 3 different sites from epilepsy patients seen in clinical settings. A total of 60 subjects will be observed longitudinally through PSG confirmation and treatment of OSA and randomized to either therapeutic continuous positive airway pressure (CPAP) or subtherapeutic (placebo or sham) CPAP in order to determine tolerability. Rates of adherence to therapeutic and sham CPAP and dropout rates due to antiepileptic drug changes during the treatment phase will be estimated. Specifically, the proposed PCT will: 1. Evaluate screening ranges on the Sleep Apnea scale of the Sleep Disorders Questionnaire (DA/SDQ), a survey instrument that is used to determine whether subjects are eligible for inclusion into the RCT. 2. Determine the necessity of performing two nights of PSG in patients with epilepsy. A second night of study increases the cost and may decrease recruitment in the RCT, but may be important to include given the night-to-night variability in the PSG and the potential for seizure occurrence during recordings. The working hypothesis is that one night of PSG will be sufficient for the RCT. 3. Determine rates of adherence to therapeutic and sham CPAP, dropout rates due to antiepileptic drug changes, and response rates will provide valuable data for planning the RCT. 4. Develop quality control measures to ensure accurate and consistent data collection among sites in the RCT, including aspects related to remote data entry and standardization of performance and interpretation of PSG studies across sites. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: EVOLUTION OF ALTERED INHIBITION IN EPILEPSY Principal Investigator & Institution: Mangan, Patrick S.; Neurology; University of Virginia Charlottesville Box 400195 Charlottesville, Va 22904 132 Seizures and Epilepsy Timing: Fiscal Year 2001; Project Start 1-MAR-1998; Project End 8-FEB2003 Summary: Temporal lobe epilepsy (TLE), the most common form of partial epilepsy, remains the cause of seizures most resistant to treatment. Understanding the pathophysiological factors inducing chronic seizure development is a necessary prerequisite to devising more effective therapies. Human TLE is marked by major pathology of the mesial temporal lobe, particularly the hippocampal formation and parahippocampal structures. A mesial temporal lobe epilepsy syndrome has been described which is often typified by a nervous system insult followed by a seizure-free interval and eventual onset of chronic epilepsy. It is generally agreed that an increased propensity for epileptiform activity arises from a disequilibrium between neuronal excitation and inhibition, particularly that mediated by the inhibitory neurotransmitter gamma-aminobutyric acid (GABA). A fundamental question which remains unanswered is the nature of the process occurring during the post-status epilepticus, seizure-free interval which may reduce GABAergic inhibition and lead to an increased propensity for epileptiform activity. This proposal examines the evolution of impairments to GABAA receptor-mediated inhibition during the period preceding the onset of spontaneous seizures using an animal model of chronic epilepsy. Three hypotheses are considered: 1. The changes in GABAA receptor-mediated inhibition in hippocampal region CA1 appear incrementally following status epilepticus and precede the appearance of chronic epilepsy. 2. Alterations in the pharmacology of the GABAA receptor evolve and are complete before the onset of spontaneous seizures. 3. The properties of spontaneous inhibitory postsynaptic currents alter between the induction of status epilepticus and the onset of spontaneous seizures. The information gained in these studies will better define development of GABAergic deficiencies preceding seizures and will aid in the development of new anti-epileptogenic therapies. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: GENE MAPPING OF EPILEPSY: MOVEMENT DISORDERS JUVENILE MYOCLONIC Principal Investigator & Institution: Olson, Jane M.; ; Case Western Reserve University 10900 Euclid Ave Cleveland, Oh 44106 Timing: Fiscal Year 2001 Summary: The word "epilepsy" derives from the Greek "to be seized" and refers to a condition characterized by recurrent epileptic seizures. Generalized epilepsies are manifested by seizures with clinical and electroencephalograph (EEG) features indicating bilateral synchronous Studies 133 onsets. Various epileptic seizure types observed in generalized epilepsies are absence seizures, tonic-clonic seizures (grand mal), myoclonic seizures, and tonic and atonic seizures. Idiopathic epilepsies are those epilepsies that have no underlying cause other than a possible genetic predisposition and are associated with normal intelligence and normal neurological status. Results from genetic linkage studies demonstrate that an epilepsy locus exists in chromosome 6p11 whose phenotype consists of classic juvenile myoclonic epilepsy (JME) with convulsions and/or EEG multispike wave complexes. Further studies into 22 JME families provide the first statistical evidence that genetic heterogeneity is present in the autosomal dominant form of JME. We propose to map gene(s) and analyze mutations of gene(s) for juvenile myoclonic epilepsy and to identify the chr.6p JME1 gene. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: HIPPOCAMPAL PLASTICITY IN EPILEPSY Principal Investigator & Institution: Sutula, Thomas P.; Neurology; University of Wisconsin Madison 750 University Ave Madison, Wi 53706 Timing: Fiscal Year 2001; Project Start 1-DEC-1999; Project End 0-NOV2003 Summary: Temporal lobe epilepsy is a common form of epilepsy that frequently becomes resistant to anticonvulsant drugs and is sometimes progressive. The evolving physiological and neuropathological processes that eventually made chronic susceptibility to recurring seizures, development of anticonvulsant drug resistance, and progression to intractable temporal lobe epilepsy are not well understood are not well understand. Limbic kindling has been studied as a model of temporal lobe epilepsy because kindled seizures have many features that resemble human partial complex seizures arising from the temporal lobe. Repeated brief seizures evoked by kindling, which gradually increase susceptibility to additional seizures and eventually induce spontaneous seizures in the absence of an initial participating injury, provide an opportunity to study how repeated seizures may contribute to intractable temporal lobe epilepsy. In the dentate gyrus, kindling induces neuronal loss and mossy fiber sprouting, which are also observed in the human epileptic temporal lobe. Seizure- induced cellular alterations such as neuronal loss and formation of recurrent circuits formed by sprouted mossy fibers could increase susceptibility to additional seizures by modifying the balance of excitation and inhibition of hippocampal pathways. Recent studies in our lab have revealed that the development of spontaneous seizures during kindling coincides with loss of inhibition in the dentate gyrus. The proposed experiments. utilize anatomical and physiological methods to 134 Seizures and Epilepsy investigate the relationship between repeated seizures, reduction of inhibition, and chronic seizure-induced cellular alterations in the dentate gyrus that contribute to spontaneous seizures and intractable epilepsy. The results of these studies will be important for understanding how poorly controlled seizures in people may contribute to recurring seizures and intractable temporal lobe epilepsy. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: MECHANISMS OF EPILEPTOGENESIS Principal Investigator & Institution: Bertram, Edward H.; Associate Professor; Neurology; University of Virginia Charlottesville Box 400195 Charlottesville, Va 22904 Timing: Fiscal Year 2001; Project Start 1-FEB-1988; Project End 0-NOV2002 Summary: Epilepsy is a chronic neurological condition that affects about 1% of the population in the United States. Although it is usually readily treatable with medications, about 25-30% of epileptic patients continue to experience recurrent seizures in spite of multiple drug therapy. A very common form of difficult to control human epilepsy is the mesial temporal lope epilepsy syndrome, which involves limbic structures such as the hippocampus, entorhinal cortex and amygdala. Understanding the pathophysiological basis for this condition is essential for the development of improved treatments. Human studies have suggested that the process of seizure initiation may involve multiple sites. In these situations the seizures often begin simultaneously at several of the limbic sites. These observations raise the possibility that seizure onset may be triggered in part through a subcortical mechanism that has input to multiple limbic structures. Testing this idea has not been possible until recently with the development of several new rat models of limbic epilepsy that have similarities to the human condition. These limbic epilepsy models are characterized by spontaneous seizures as well as limbic pathology and seizure physiology on EEG that are morphologically similar to the human condition (mesial temporal lobe epilepsy). Work completed or nearing completion has suggested that all of the limbic sites demonstrated to participate in seizure onset have hyperexcitable responses to stimulation. More importantly, we have recently discovered that the midline thalamic nuclei have significant excitatory input to these areas (amygdala, hippocampus and entorhinal cortex). We have also found that the midline thalamic nuclei participate in, and may regulate, the seizure activity in the limbic system. These observations suggest that these thalamic regions may have an important role in seizure initiation and modulation. In this project we propose to Studies 135 evaluate the role of the midline thalamic nuclei in limbic seizures and epilepsy to answer the following questions: 1) What role does the midline thalamic nuclei play in limbic seizures and epilepsy to answer the following questions: 2) How are the interactions between the midline thalamic nuclei and its limbic targets altered in limbic epilepsy? 3) How is the physiology of the midline thalamic nuclei changed in chronic limbic epilepsy? These experiments will combine in vitro and in vivo physiology of several rat models of limbic seizures, including chronic limbic seizures, to examine these issues, which are the first steps to understanding the role of this region in limbic epilepsy. These results will provide new insights into the network changes and basis for these conditions. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: POPULATION BASED STUDY OF SEIZURES IN BLACKS AND WHITES Principal Investigator & Institution: Rich, Stephen S.; Professor and ViceChair; University of Minnesota Twin Cities Twin Cities Minneapolis, Mn 55455 Timing: Fiscal Year 2001 Summary: Seizures and epilepsy are among the most common neurologic disorders in the elderly. Seizure can occur in many ways, including uncontrollable tonic and/or clonic jerks and/or a momentary loss of consciousness and/or altered mental state. The etiology of the seizure may be recognized (symptomatic) or unrecognized (idiopathic/cryogenic), and the initial event may occur at any stage of life. Classification schemes for epileptic seizures according to clinical and EEG features and recognized syndromes have been proposed that allows comparison of results across studies. To date, however, few studies have been focused on non-Caucasians or on the elderly. The goal of this population-based study is to determine the prevalence and incidence of seizures and epilepsy among older African-Americans and Caucasians participating in the ARIC (Atherosclerosis Risk in Communities) study. We propose to analyze data collected as part of the ARIC study, a prospective cohort study consisting of 15,792 free-living residents from Forsyth County, NC, Jackson, MS, Minneapolis/St. Paul, MN, and Washington County, MD. The ARIC baseline examination was conducted between 1987-1989, during which trained interviewers collected information on medical history and risk factors, blood pressure measurements, pulmonary function studies, and other associated measurements. Data from the second ARIC visit (1990- 1992) have similarly been collected. ARIC visit three data are currently being 136 Seizures and Epilepsy collected (1993-1995), and ARIC visit four data will be collected during the period of this study (1996-1999). Using these data, we propose to (1) Determine the frequency of seizures by estimating the prevalence in this populations bey ethnicity and describing the prevalence within subgroups defined by age, sex, and location; (2) Compare the prevalence with respect to selected epilepsy and VCD risk factors; and (3) Determine the incidence of seizures among this population of African-American and Caucasians. Age- adjusted incidence rates by sex and by ethnic group will be estimated and we will compare the cumulative incidence rates in ARIC with that in Rochester, MN. This study focuses on two understudied groups with respect to seizures -- the elderly and AfricanAmericans. Studies of the prevalence and incidence of seizures in the ARIC data, especially when coupled with the extensive, already collected, CVD risk factor data, can provide data of importance to understanding the etiology of seizures and epilepsy, and complement the medical information obtained in other projects. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: PROGESTERONE THERAPY FOR WOMEN WITH EPILEPSY Principal Investigator & Institution: Herzog, Andrew G.; Associate Professor of Neurology; Beth Israel Deaconess Medical Center E/Es-214 Boston, Ma 02215 Timing: Fiscal Year 2001; Project Start 0-SEP-2000; Project End 1-AUG2003 Summary: (Applicant's Abstract): This randomized, placebo-controlled, double-blind, multicenter clinical trial will assess the efficacy of adjunctive cyclic progesterone therapy in lessening the frequency of intractable seizures in women with localization related epilepsy. There is considerable scientific evidence to suggest that estrogen generally increases while progesterone decreases neuronal excitability and seizures. Preliminary open trials suggest that the cyclic administration of adjunctive natural progesterone supplement may lessen seizure frequency by over 50% in the majority of women with catamenially exacerbated intractable seizures. Oral synthetic progestins, in contrast, have not shown significant efficacy. Progesterone is not widely used as an adjunct to seizure management because its benefits have yet to be definitively demonstrated. The proposed clinical trial will require 640 subjects. During the baseline phase, seizure/menstrual charts will document baseline seizure frequency and determine if seizure occurrence shows a catamenial pattern of exacerbation. The subjects will be divided into catamenial and non-catamenial groups. Each group will be Studies 137 randomized in a 2:1 ratio into progesterone and placebo treatment groups. Seizure frequency during 3 months of treatment will be compared to baseline, while monitoring antiepileptic drug and hormone levels. The proposed clinical trial has considerable potential significance for women with epilepsy. Approximately 30% of women with epilepsy have refractory seizures, that is persistent seizures despite trials of antiepileptic drug, use. It is estimated that 35% of these women have catamenial seizure exacerbation. If, on the basis of preliminary observations, this group responds favorably to hormonal therapy, one would expect that progesterone may benefit approximately (1,000,000 x .30 x .35) 100,000 women with catamenial epilepsy and perhaps many more women with no a priori demonstrated hormonal sensitivity to seizure occurrence. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: PROGRESSION OF TEMPORAL LOBE EPILEPSY Principal Investigator & Institution: Dudek, Francis Edward.; Professor; Anatomy and Neurobiology; Colorado State University Fort Collins, Co 80523 Timing: Fiscal Year 2003; Project Start 1-DEC-2002; Project End 0-NOV2007 Summary: (provided by applicant): Although epidemiological studies have provided valuable perspectives on temporal lobe epilepsy, the ethical limitations of human research prevent a definitive answer to the important question: is antiepileptic drug (AED) therapy purely symptomatic, or does it affect the natural history of the epilepsy? The proposed experiments use an animal model of temporal lobe epilepsy to determine whether spontaneous epileptic seizures damage the brain and increase the likelihood of more seizures (i.e., promote epileptogenesis), and conversely, whether decreasing the number of seizures with AEDs significantly reduces brain damage and epileptogenesis. The central hypothesis is that prolonged treatment with an AED, which significantly reduces spontaneous epileptic seizures, causes long-term reductions in the frequency and severity of subsequent epileptic seizures after AED withdrawal. The kainate-treated rat, a well-characterized animal model of temporal lobe epilepsy, will be used to determine whether the progressive increase in the frequency ofspontaneous seizures during the months after status epilepticus continues to damage the hippocampus and contributes to epileptogenesis. AEDs (i.e., phenytoin, phenobarbital, and valproate) will be used to block spontaneous epileptic seizures for prolonged periods to determine whether AED therapy reduces epileptogenesis and results in a long-term decrease in spontaneous 138 Seizures and Epilepsy seizure frequency (i.e., a decrease in frequency that persists after the AED therapy has been withdrawn). A related hypothesis is that prolonged AED treatment reduces neuronal death and other potential markers of hippocampal epileptogenesis. Chronic recording of electrographic seizures, quantitative histopathological studies, and in vitro electrophysiological recording of synaptic and epileptiform events in hippocampal slices will be used to determine if prolonged AED treatment decreases neuronal damage, reorganization of neural circuits, and epileptogenesis. These experiments will provide precise and valuable information regarding the influence of seizure frequency on brain damage and on the propensity for future seizures, which will be important for understanding the mechanisms of epileptogenesis and for making clinical decisions regarding AED therapy and epilepsy surgery. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen · Project Title: RNA BINDING PROTEINS IN EPILEPSY AND NEUROLOGIC DISEASE Principal Investigator & Institution: Toth, Miklos; Associate Professor; Pharmacology; Weill Medical College of Cornell Univ of Cornell University New York, Ny 10021 Timing: Fiscal Year 2001; Project Start 3-DEC-1995; Project End 1-MAY2003 Summary: (from applicant's abstract): This is a competing continuation proposal of a grant funded to study the novel Jerky protein and its role in epilepsy. The mouse line defective in the jerky gene shows epileptic seizures and our work has shown that consistent with its mutant phenotype, jerky is transcribed at a relatively high level in neurons of the central nervous system and that Jerky binds mRNA. We also showed that antibodies recognizing Jerky are present in sera of patients suffering of a certain from of autoimmune neuronal degeneration (paraneoplastic disorders, PND). Other studies suggested that the human jerky gene is a candidate for childhood absence epilepsy (CAE). We now understand Jerky to be a prototypic member of an evolutionarily conserved family of RNA binding proteins (RNPs) containing a novel RNA binding motif. RNPs are trans-acting factors mediating posttranscriptional processing of mRNAs and pre-mRNAs, including splicing, polyadenylation, transport, targeting, stability and translation. We hypothesize that lack of Jerky in mutant mice leads to a deficiency in the processing of certain mRNAs compromising neuronal functions that results in seizures. We also show that lack of FMRP (Fragile X Mental Retardation Protein), another RNP whose inactivation causes fragile X syndrome and which is believed to be involved in mRNA processing, also results in seizures in mice. This Studies 139 finding is consistent with the high incidence of seizures in fragile X patients. Since FMRP-deficient animals represent a second example of a situation in which abnormalities in an RNP result in seizures, we suggest that RNP dysfunction may be more general disease mechanism in epilepsy. Due to the potential importance of RNPs in epilepsy, the focus of our current grant application is to study the cellular role of Jerky, Jerky-like proteins, and FMRP. We propose I) to analyze the RNA binding properties of the human JERKY protein and a similar human protein HHJRK, II) to identify the cellular binding targets of JERKY and FMRP (by a method recently developed in our laboratory) and to assign functions for these targets, and 3) to employ Jerky autoantibodies as tool to study Jerky-RNA complexes. These proposed experiments will establish the jerky family as a distinct group of RNPs with a novel RNA binding motif. Also, specifying targets for JERKY and FMRP will allow us to link these targets to cellular pathways and ascertain how these pathways contribute to the overall function of these proteins. Finally, these experiments will aid in our understanding of certain aspects of the pathogenesis of epilepsy and autoimmune diseases. Website: http://commons.cit.nih.gov/crisp3/Crisp_Query.Generate_Screen E-Journals: PubMed Central19 PubMed Central (PMC) is a digital archive of life sciences journal literature developed and managed by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).20 Access to this growing archive of e-journals is free and unrestricted.21 To search, go to http://www.pubmedcentral.nih.gov/index.html#search, and type “seizures and epilepsy” (or synonyms) into the search box. This search gives you access to full-text articles. The following is a sample of items found for seizures and epilepsy in the PubMed Central database: · Grafts of adenosine-releasing cells suppress seizures in kindling epilepsy. by Huber A, Padrun V, Deglon N, Aebischer P, Mohler H, Boison D.; 2001 Jun 19; Adapted from the National Library of Medicine: http://www.pubmedcentral.nih.gov/about/intro.html. 20 With PubMed Central, NCBI is taking the lead in preservation and maintenance of open access to electronic literature, just as NLM has done for decades with printed biomedical literature. PubMed Central aims to become a world-class library of the digital age. 21 The value of PubMed Central, in addition to its role as an archive, lies the availability of data from diverse sources stored in a common format in a single repository. Many journals already have online publishing operations, and there is a growing tendency to publish material online only, to the exclusion of print. 19 140 Seizures and Epilepsy http://www.pubmedcentral.gov/articlerender.fcgi?tool=pmcentrez&arti d=34716 · Nitric Oxide Mediates the Increase in Local Cerebral Blood Flow During Focal Seizures. by de Vasconcelos AP, Baldwin RA, Wasterlain CG.; 1995 Apr 11; http://www.pubmedcentral.gov/articlerender.fcgi?rendertype=abstract &artid=42128 · Role of Nitric Oxide in the Enhancement of PentylenetetrazoleInduced Seizures Caused by Shigella dysenteriae. by Balter-Seri J, Yuhas Y, Weizman A, Nofech-Mozes Y, Kaminsky E, Ashkenazi S.; 1999 Dec; http://www.pubmedcentral.gov/articlerender.fcgi?rendertype=external &artid=97043 · Role of the Y5 neuropeptide Y receptor in limbic seizures. by Marsh DJ, Baraban SC, Hollopeter G, Palmiter RD.; 1999 Nov 9; http://www.pubmedcentral.gov/articlerender.fcgi?tool=pmcentrez&arti d=23980 The National Library of Medicine: PubMed One of the quickest and most comprehensive ways to find academic studies in both English and other languages is to use PubMed, maintained by the National Library of Medicine. The advantage of PubMed over previously mentioned sources is that it covers a greater number of domestic and foreign references. It is also free to the public.22 If the publisher has a Web site that offers full text of its journals, PubMed will provide links to that site, as well as to sites offering other related data. User registration, a subscription fee, or some other type of fee may be required to access the full text of articles in some journals. To generate your own bibliography of studies dealing with seizures and epilepsy, go to the PubMed Web site at www.ncbi.nlm.nih.gov/pubmed. Type “seizures and epilepsy” (or synonyms) into the search box, and click “Go.” The following is the type of output you can expect from PubMed for “seizures and epilepsy” (hyperlinks lead to article summaries): PubMed was developed by the National Center for Biotechnology Information (NCBI) at the National Library of Medicine (NLM) at the National Institutes of Health (NIH). The PubMed database was developed in conjunction with publishers of biomedical literature as a search tool for accessing literature citations and linking to full-text journal articles at Web sites of participating publishers. Publishers that participate in PubMed supply NLM with their citations electronically prior to or at the time of publication. 22 Studies 141 · Cellular prion protein: implications in seizures and epilepsy. Author(s): Walz R, Castro RM, Velasco TR, Carlotti CG Jr, Sakamoto AC, Brentani RR, Martins VR. Source: Cellular and Molecular Neurobiology. 2002 June; 22(3): 249-57. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12469868&dopt=Abstract · Classifying seizures and epilepsy: a synopsis. Author(s): Sirven JI. Source: Seminars in Neurology. 2002 September; 22(3): 237-46. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12528049&dopt=Abstract · Demystifying seizures and epilepsy: introduction to the symposium on seizures. Author(s): Sirven JI. Source: Mayo Clinic Proceedings. 2002 September; 77(9): 977-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12233933&dopt=Abstract · Retrospective study of febrile seizures: subsequent electroencephalogram findings, unprovoked seizures and epilepsy in adolescents. Author(s): Piperidou HN, Heliopoulos IN, Maltezos ES, Stathopoulos GA, Milonas IA. Source: J Int Med Res. 2002 November-December; 30(6): 560-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12526282&dopt=Abstract · 1H and 31P spectroscopy and bioenergetics in the lateralization of seizures in temporal lobe epilepsy. Author(s): Hetherington HP, Pan JW, Spencer DD. Source: Journal of Magnetic Resonance Imaging : Jmri. 2002 October; 16(4): 477-83. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12353261&dopt=Abstract · A locus for simple pure febrile seizures maps to chromosome 6q22-q24. Author(s): Nabbout R, Prud'homme JF, Herman A, Feingold J, Brice A, Dulac O, LeGuern E. 142 Seizures and Epilepsy Source: Brain; a Journal of Neurology. 2002 December; 125(Pt 12): 266880. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12429594&dopt=Abstract · A nonsense mutation of the MASS1 gene in a family with febrile and afebrile seizures. Author(s): Nakayama J, Fu YH, Clark AM, Nakahara S, Hamano K, Iwasaki N, Matsui A, Arinami T, Ptacek LJ. Source: Annals of Neurology. 2002 November; 52(5): 654-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12402266&dopt=Abstract · Adverse effects of phenytoin given for late-onset seizures in adults with Down syndrome. Author(s): Tsiouris JA, Patti PJ, Tipu O, Raguthu S. Source: Neurology. 2002 September 10; 59(5): 779-80. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12221182&dopt=Abstract · An overview of surgery for chronic seizures. Author(s): Zimmerman RS, Sirven JI. Source: Mayo Clinic Proceedings. 2003 January; 78(1): 109-17. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12528886&dopt=Abstract · Antibodies against GluR3 peptides are not specific for Rasmussen's encephalitis but are also present in epilepsy patients with severe, early onset disease and intractable seizures. Author(s): Mantegazza R, Bernasconi P, Baggi F, Spreafico R, Ragona F, Antozzi C, Bernardi G, Granata T. Source: Journal of Neuroimmunology. 2002 October; 131(1-2): 179-85. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12458050&dopt=Abstract · Association analysis between the human interleukin 1beta (-511) gene polymorphism and susceptibility to febrile convulsions. Author(s): Tilgen N, Pfeiffer H, Cobilanschi J, Rau B, Horvath S, Elger CE, Propping P, Heils A. Studies 143 Source: Neuroscience Letters. 2002 December 6; 334(1): 68-70. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12431777&dopt=Abstract · Asymmetric ending of secondarily generalized seizures: a lateralizing sign in TLE. Author(s): Leutmezer F, Woginger S, Antoni E, Seidl B, Baumgartner C. Source: Neurology. 2002 October 22; 59(8): 1252-4. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12391358&dopt=Abstract · Asymmetric termination of secondarily generalized tonic-clonic seizures in temporal lobe epilepsy. Author(s): Trinka E, Walser G, Unterberger I, Luef G, Benke T, Bartha L, Eibl G, Ortler M, Bauer G. Source: Neurology. 2002 October 22; 59(8): 1254-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12391359&dopt=Abstract · Benign familial infantile convulsions: a clinical study of seven Dutch families. Author(s): Callenbach PM, de Coo RF, Vein AA, Arts WF, Oosterwijk J, Hageman G, ten Houten R, Terwindt GM, Lindhout D, Frants RR, Brouwer OF. Source: European Journal of Paediatric Neurology : Ejpn : Official Journal of the European Paediatric Neurology Society. 2002; 6(5): 269-83. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12374579&dopt=Abstract · Benign familial infantile seizures: further delineation of the syndrome. Author(s): Caraballo RH, Cersosimo RO, Amartino H, Szepetowski P, Fejerman N. Source: Journal of Child Neurology. 2002 September; 17(9): 696-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12503648&dopt=Abstract · Bupropion-methylphenidate combination and grand mal seizures. Author(s): Ickowicz A. 144 Seizures and Epilepsy Source: Canadian Journal of Psychiatry. Revue Canadienne De Psychiatrie. 2002 October; 47(8): 790-1. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12420664&dopt=Abstract · Carbamazepine-induced seizures: a case report and review of the literature. Author(s): Gansaeuer M, Alsaadi TM. Source: Clin Electroencephalogr. 2002 October; 33(4): 174-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12449849&dopt=Abstract · Childhood absence epilepsy and febrile seizures: a family with a GABA(A) receptor mutation. Author(s): Marini C, Harkin LA, Wallace RH, Mulley JC, Scheffer IE, Berkovic SF. Source: Brain; a Journal of Neurology. 2003 January; 126(Pt 1): 230-40. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12477709&dopt=Abstract · Childhood febrile convulsions--which factors determine the subsequent epilepsy syndrome? A retrospective study. Author(s): Trinka E, Unterrainer J, Haberlandt E, Luef G, Unterberger I, Niedermuller U, Haffner B, Bauer G. Source: Epilepsy Research. 2002 August; 50(3): 283-92. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12200219&dopt=Abstract · Chronic alcohol use and first symptomatic epileptic seizures. Author(s): Leone M, Tonini C, Bogliun G, Monaco F, Mutani R, Bottacchi E, Gambaro P, Rocci E, Tassinari T, Cavestro C, Beghi E. Source: Journal of Neurology, Neurosurgery, and Psychiatry. 2002 November; 73(5): 495-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12397140&dopt=Abstract · Clinical features of benign convulsions with mild gastroenteritis. Author(s): Uemura N, Okumura A, Negoro T, Watanabe K. Source: Brain & Development. 2002 December; 24(8): 745-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12453597&dopt=Abstract Studies 145 · Clinical indications and diagnostic yield of videoelectroencephalographic monitoring in patients with seizures and spells. Author(s): Cascino GD. Source: Mayo Clinic Proceedings. 2002 October; 77(10): 1111-20. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12374255&dopt=Abstract · Clinical study of catastrophic infantile epilepsy with focal seizures. Author(s): Ishii K, Oguni H, Hayashi K, Shirakawa S, Itoh Y, Osawa M. Source: Pediatric Neurology. 2002 November; 27(5): 369-77. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12504205&dopt=Abstract · Crossed cerebellar diaschisis secondary to refractory frontal seizures in childhood. Author(s): MEWASINGH LD, CHRISTIAENS F, AEBY A, CHRISTOPHE C, DAN B. Source: Seizure : the Journal of the British Epilepsy Association. 2002 December; 11(8): 489-93. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12464508&dopt=Abstract · Differences in hippocampal mitotic activity within the dorsal and ventral hippocampus following flurothyl seizures in mice. Author(s): Ferland RJ, Gross RA, Applegate CD. Source: Neuroscience Letters. 2002 October 31; 332(2): 131-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12384228&dopt=Abstract · Effect of topiramate following recurrent and prolonged seizures during early development. Author(s): Cha BH, Silveira DC, Liu X, Hu Y, Holmes GL. Source: Epilepsy Research. 2002 October; 51(3): 217-32. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12399072&dopt=Abstract · Effectiveness of muscimol-containing microparticles against pilocarpine-induced focal seizures. Author(s): Kohane DS, Holmes GL, Chau Y, Zurakowski D, Langer R, Cha BH. Source: Epilepsia. 2002 December; 43(12): 1462-8. 146 Seizures and Epilepsy http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12460246&dopt=Abstract · Effects of fluoxetine and TFMPP on spontaneous seizures in rats with pilocarpine-induced epilepsy. Author(s): Hernandez EJ, Williams PA, Dudek FE. Source: Epilepsia. 2002 November; 43(11): 1337-45. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12423383&dopt=Abstract · Effects of hemispheric lateralization and site specificity on immune alterations induced by kindled temporal lobe seizures. Author(s): Goldstein KR, Bhatt R, Barton BE, Zalcman SS, Rameshwar P, Siegel A. Source: Brain, Behavior, and Immunity. 2002 December; 16(6): 706-19. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12480501&dopt=Abstract · Febrile seizures. Author(s): Varma RR. Source: Indian J Pediatr. 2002 August; 69(8): 697-700. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12356222&dopt=Abstract · Frequency evolution during tonic-clonic seizures. Author(s): Quiroga RQ, Garcia H, Rabinowicz A. Source: Electromyogr Clin Neurophysiol. 2002 September; 42(6): 323-31. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12224469&dopt=Abstract · Frequent seizures with elevated interleukin-6 at the eruptive stage of exanthema subitum. Author(s): Go T, Nakamura K. Source: European Journal of Paediatric Neurology : Ejpn : Official Journal of the European Paediatric Neurology Society. 2002; 6(4): 221-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12374589&dopt=Abstract · Functional and biochemical analysis of a sodium channel Beta 1 subunit mutation responsible for generalized epilepsy with febrile seizures plus type 1. Studies 147 Author(s): Meadows LS, Malhotra J, Loukas A, Thyagarajan V, KazenGillespie KA, Koopman MC, Kriegler S, Isom LL, Ragsdale DS. Source: The Journal of Neuroscience : the Official Journal of the Society for Neuroscience. 2002 December 15; 22(24): 10699-709. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12486163&dopt=Abstract · Functional and morphological changes in the hippocampal neuronal circuits associated with epileptic seizures. Author(s): Maru E, Kanda M, Ashida H. Source: Epilepsia. 2002; 43 Suppl 9: 44-9. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12383280&dopt=Abstract · Gabapentin in late-onset poststroke seizures. Author(s): Alvarez-Sabin J, Montaner J, Padro L, Molina CA, Rovira R, Codina A, Quintana M. Source: Neurology. 2002 December 24; 59(12): 1991-3. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12499501&dopt=Abstract · GnRH-immunoreactive fiber changes with unilateral amygdalakindled seizures. Author(s): Friedman MN, Geula C, Holmes GL, Herzog AG. Source: Epilepsy Research. 2002 December; 52(2): 73-7. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12458023&dopt=Abstract · Headache associated with epileptic seizures: epidemiology and clinical characteristics. Author(s): Forderreuther S, Henkel A, Noachtar S, Straube A. Source: Headache. 2002 July-August; 42(7): 649-55. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12482219&dopt=Abstract · Heart rate and EKG changes in 102 seizures: analysis of influencing factors. Author(s): Opherk C, Coromilas J, Hirsch LJ. Source: Epilepsy Research. 2002 December; 52(2): 117-27. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12458028&dopt=Abstract 148 Seizures and Epilepsy · Hyperventilation-induced high-amplitude rhythmic slowing with altered awareness: a video-EEG comparison with absence seizures. Author(s): Lum LM, Connolly MB, Farrell K, Wong PK. Source: Epilepsia. 2002 November; 43(11): 1372-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12423387&dopt=Abstract · Ictal onset localization of epileptic seizures by magnetoencephalography. Author(s): Tilz C, Hummel C, Kettenmann B, Stefan H. Source: Acta Neurologica Scandinavica. 2002 October; 106(4): 190-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12225312&dopt=Abstract · Ictal vomiting in association with left temporal lobe seizures in a left hemisphere language-dominant patient. Author(s): Schauble B, Britton JW, Mullan BP, Watson J, Sharbrough FW, Marsh WR. Source: Epilepsia. 2002 November; 43(11): 1432-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12423396&dopt=Abstract · Ictogenesis: the origin of seizures in humans. A new look at an old theory. Author(s): Doman G, Pelligra R. Source: Medical Hypotheses. 2003 January; 60(1): 129-32. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12450780&dopt=Abstract · Incidence of seizures in patients with multiple sclerosis: a populationbased study. Author(s): Nyquist PA, Cascino GD, McClelland RL, Annegers JF, Rodriguez M. Source: Mayo Clinic Proceedings. 2002 September; 77(9): 910-2. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12233923&dopt=Abstract · Interleukin-4 intron 3 polymorphism is not related to susceptibility to febrile seizures. Author(s): Tsai FJ, Chou IC, Hsieh YY, Lee CC, Lin CC, Tsai CH. Source: Pediatric Neurology. 2002 October; 27(4): 271-4. Studies 149 http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12435565&dopt=Abstract · Involvement of the neuropeptide nociceptin/orphanin FQ in kainate seizures. Author(s): Bregola G, Zucchini S, Rodi D, Binaschi A, D'Addario C, Landuzzi D, Reinscheid R, Candeletti S, Romualdi P, Simonato M. Source: The Journal of Neuroscience : the Official Journal of the Society for Neuroscience. 2002 November 15; 22(22): 10030-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12427860&dopt=Abstract · Lidocaine-induced seizures in patients with history of epilepsy: effect of antiepileptic drugs. Author(s): DeToledo JC, Minagar A, Lowe MR. Source: Anesthesiology. 2002 September; 97(3): 737-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12218544&dopt=Abstract · Low-dose topiramate in adults with treatment-resistant partial-onset seizures. Author(s): Guberman A, Neto W, Gassmann-Mayer C. Source: Acta Neurologica Scandinavica. 2002 October; 106(4): 183-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12225311&dopt=Abstract · Masking synchronous GABA-mediated potentials controls limbic seizures. Author(s): Barbarosie M, Louvel J, D'Antuono M, Kurcewicz I, Avoli M. Source: Epilepsia. 2002 December; 43(12): 1469-79. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12460247&dopt=Abstract · Medication interaction causing seizures in a patient with bipolar disorder and cystic fibrosis. Author(s): Munera PA, Perel JM, Asato M. Source: Journal of Child and Adolescent Psychopharmacology. 2002 Fall; 12(3): 275-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12427303&dopt=Abstract 150 Seizures and Epilepsy · Mefloquine: contraindicated in patients with mood, psychotic or seizure disorders. Author(s): Wooltorton E. Source: Cmaj : Canadian Medical Association Journal = Journal De L'association Medicale Canadienne. 2002 November 12; 167(10): 1147. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12427708&dopt=Abstract · Molecular genetics of febrile seizures. Author(s): Iwasaki N, Nakayama J, Hamano K, Matsui A, Arinami T. Source: Epilepsia. 2002; 43 Suppl 9: 32-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12383277&dopt=Abstract · NAALADase (GCP II) inhibition prevents cocaine-kindled seizures. Author(s): Witkin JM, Gasior M, Schad C, Zapata A, Shippenberg T, Hartman T, Slusher BS. Source: Neuropharmacology. 2002 September; 43(3): 348-56. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12243764&dopt=Abstract · New onset seizures in HIV-infected patients without intracranial mass lesions or meningitis--a clinical, radiological and SPECT scan study. Author(s): Modi G, Modi M, Martinus I, Vangu M. Source: Journal of the Neurological Sciences. 2002 October 15; 202(1-2): 29-34. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12220689&dopt=Abstract · No evidence for a susceptibility locus for idiopathic generalized epilepsy on chromosome 5 in families with typical absence seizures. Author(s): Windemuth C, Schulz H, Saar K, Gennaro E, Bianchi A, Zara F, Bulteau C, Kaminska A, Ville D, Cieuta C, Nabbout-Tarantino R, Prud'homme JF, Dulac O, Bate L, Gardiner RM, Lindhout D, Wienker TF, Janz D, Sander T. Source: Epilepsy Research. 2002 September; 51(1-2): 23-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12350381&dopt=Abstract Studies 151 · Parietal circuits and conversion seizures. Author(s): Vardi J, Finkelstein Y, Zlotogorski Z. Source: The Journal of Neuropsychiatry and Clinical Neurosciences. 2002 Fall; 14(4): 468. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12426425&dopt=Abstract · Pathophysiology of altered consciousness during seizures: Subtraction SPECT study. Author(s): Lee KH, Meador KJ, Park YD, King DW, Murro AM, Pillai JJ, Kaminski RJ. Source: Neurology. 2002 September 24; 59(6): 841-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12297563&dopt=Abstract · Pilomotor seizures: symptomatic vs. idiopathic report of two cases and literature review. Author(s): Sa'adah MA, Shawabkeh A, Sa'adah LM, Inshasi J. Source: Seizure : the Journal of the British Epilepsy Association. 2002 October; 11(7): 455-9. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12237074&dopt=Abstract · Preventing and treating eclamptic seizures. Author(s): Roberts JM, Villar J, Arulkumaran S. Source: Bmj (Clinical Research Ed.). 2002 September 21; 325(7365): 609-10. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12242159&dopt=Abstract · Pyridoxine-dependent seizures: long-term follow-up of two cases with clinical and MRI findings, and pyridoxine treatment. Author(s): Ulvi H, Mungen B, Yakinci C, Yoldas T. Source: Journal of Tropical Pediatrics. 2002 October; 48(5): 303-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12405174&dopt=Abstract · Rectal diazepam gel for treatment of acute repetitive seizures in adults. Author(s): Cereghino JJ, Cloyd JC, Kuzniecky RI. Source: Archives of Neurology. 2002 December; 59(12): 1915-20. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12470180&dopt=Abstract 152 Seizures and Epilepsy · Recurrent seizures and behavior problems in children with first recognized seizures: a prospective study. Author(s): Austin JK, Dunn DW, Caffrey HM, Perkins SM, Harezlak J, Rose DF. Source: Epilepsia. 2002 December; 43(12): 1564-73. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12460260&dopt=Abstract · Relationship of epileptic seizures to sleep stage and sleep depth. Author(s): Minecan D, Natarajan A, Marzec M, Malow B. Source: Sleep. 2002 Dec15; 25(8): 899-904. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12489898&dopt=Abstract · Role and limitations of routine and ambulatory scalp electroencephalography in diagnosing and managing seizures. Author(s): Worrell GA, Lagerlund TD, Buchhalter JR. Source: Mayo Clinic Proceedings. 2002 September; 77(9): 991-8. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12233935&dopt=Abstract · Seizures after alendronate. Author(s): Maclsaac RJ, Seeman E, Jerums G. Source: Journal of the Royal Society of Medicine. 2002 December; 95(12): 615-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12461152&dopt=Abstract · Seizures and the basal ganglia: a review of the clinical data. Author(s): Vercueil L, Hirsch E. Source: Epileptic Disord. 2002 July; 4 Suppl 3: 47-54. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12495874&dopt=Abstract · Seizures on emergence from sevoflurane anaesthesia for Caesarean section in a healthy parturient. Author(s): Kuczkowski KM. Source: Anaesthesia. 2002 December; 57(12): 1234-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12437745&dopt=Abstract Studies 153 · Singing seizures. Author(s): Doherty MJ, Wilensky AJ, Holmes MD, Lewis DH, Rae J, Cohn GH. Source: Neurology. 2002 November 12; 59(9): 1435-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12427900&dopt=Abstract · Sleep complaints and epilepsy: the role of seizures, antiepileptic drugs and sleep disorders. Author(s): Foldvary-Schaefer N. Source: Journal of Clinical Neurophysiology : Official Publication of the American Electroencephalographic Society. 2002 December; 19(6): 514-21. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12488782&dopt=Abstract · Sodium-channel defects in benign familial neonatal-infantile seizures. Author(s): Heron SE, Crossland KM, Andermann E, Phillips HA, Hall AJ, Bleasel A, Shevell M, Mercho S, Seni MH, Guiot MC, Mulley JC, Berkovic SF, Scheffer IE. Source: Lancet. 2002 September 14; 360(9336): 851-2. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12243921&dopt=Abstract · Stimulation of the nervous system for the management of seizures: current and future developments. Author(s): Murphy JV, Patil A. Source: Cns Drugs. 2003; 17(2): 101-15. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12521358&dopt=Abstract · Study of factors responsible for recurrence of seizures in controlled epileptics for more than 1 years after withdrawal of antiepileptic drugs. Author(s): Lamdhade SJ, Taori GM. Source: Neurology India. 2002 September; 50(3): 295-300. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12391456&dopt=Abstract · Suppressive effect of callosotomy on epileptic seizures is due to the blockade of enhancement of cortical reactivity by transcallosal volleys. Author(s): Ono T, Fujimura K, Yoshida S, Ono K. Source: Epilepsy Research. 2002 September; 51(1-2): 117-21. 154 Seizures and Epilepsy http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12350387&dopt=Abstract · Systematic review and meta-analysis of incidence studies of epilepsy and unprovoked seizures. Author(s): Kotsopoulos IA, van Merode T, Kessels FG, de Krom MC, Knottnerus JA. Source: Epilepsia. 2002 November; 43(11): 1402-9. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12423392&dopt=Abstract · The contribution of the lateral posterior and anteroventral thalamic nuclei on spontaneous recurrent seizures in the pilocarpine model of epilepsy. Author(s): Scorza FA, Arida RM, Priel M, Calderazzo L, Cavalheiro EA. Source: Arquivos De Neuro-Psiquiatria. 2002 September; 60(3-A): 572-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12244394&dopt=Abstract · The control of seizures by the basal ganglia? A review of experimental data. Author(s): Deransart C, Depaulis A. Source: Epileptic Disord. 2002 July; 4 Suppl 3: 61-72. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12495876&dopt=Abstract · The correlation of seizures in newborn infants with significant acidosis at birth with umbilical artery cord gas values. Author(s): Williams KP, Singh A. Source: Obstetrics and Gynecology. 2002 September; 100(3): 557-60. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12220778&dopt=Abstract · The first reported presentation of rickets with metabolic seizures. Author(s): Stebbing C, Mansy S, Kanabar D. Source: Hosp Med. 2002 November; 63(11): 690-1. No Abstract Available. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12474617&dopt=Abstract · The relevance of poststroke seizures. Author(s): Pohlmann-Eden B, Hennerici MG, Hoch DB. Studies 155 Source: Archives of Neurology. 2002 November; 59(11): 1831; Author Reply 1831-2. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12433274&dopt=Abstract · The role of chloride-dependent inhibition and the activity of fastspiking neurons during cortical spike-wave electrographic seizures. Author(s): Timofeev I, Grenier F, Steriade M. Source: Neuroscience. 2002; 114(4): 1115-32. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12379264&dopt=Abstract · The role of the temporal pole in the genesis of temporal lobe seizures. Author(s): Kahane P, Chabardes S, Minotti L, Hoffmann D, Benabid AL, Munari C. Source: Epileptic Disord. 2002 September; 4 Suppl 1: S51-8. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12424091&dopt=Abstract · The structural consequences of newly diagnosed seizures. Author(s): Liu RS, Lemieux L, Bell GS, Sisodiya SM, Bartlett PA, Shorvon SD, Sander JW, Duncan JS. Source: Annals of Neurology. 2002 November; 52(5): 573-80. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12402254&dopt=Abstract · Tonic-clonic seizures in patients taking sildenafil. Author(s): Gilad R, Lampl Y, Eshel Y, Sadeh M. Source: Bmj (Clinical Research Ed.). 2002 October 19; 325(7369): 869. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12386039&dopt=Abstract Vocabulary Builder Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] Adenosine: A nucleoside that is composed of adenine and d-ribose. Adenosine or adenosine derivatives play many important biological roles in addition to being components of DNA and RNA. Adenosine itself is a 156 Seizures and Epilepsy neurotransmitter. [NIH] Alendronate: A nonhormonal medication for the treatment of postmenopausal osteoporosis in women. This drug builds healthy bone, restoring some of the bone loss as a result of osteoporosis. [NIH] Algorithms: A procedure consisting of a sequence of algebraic formulas and/or logical steps to calculate or determine a given task. [NIH] Amphetamine: A powerful central nervous system stimulant and sympathomimetic. Amphetamine has multiple mechanisms of action including blocking uptake of adrenergics and dopamine, stimulation of release of monamines, and inhibiting monoamine oxidase. Amphetamine is also a drug of abuse and a psychotomimetic. The l- and the d,l-forms are included here. The l-form has less central nervous system activity but stronger cardiovascular effects. The d-form is dextroamphetamine. [NIH] Amygdala: Almond-shaped group of basal nuclei anterior to the inferior horn of the lateral ventricle of the brain, within the temporal lobe. The amygdala is part of the limbic system. [NIH] Anaesthesia: Loss of feeling or sensation. Although the term is used for loss of tactile sensibility, or of any of the other senses, it is applied especially to loss of the sensation of pain, as it is induced to permit performance of surgery or other painful procedures. [EU] Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH] Aphasia: Defect or loss of the power of expression by speech, writing, or signs, or of comprehending spoken or written language, due to injury or disease of the brain centres. [EU] Asphyxia: A pathological condition caused by lack of oxygen, manifested in impending or actual cessation of life. [NIH] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Bilateral: Having two sides, or pertaining to both sides. [EU] Cannabinoids: Compounds extracted from Cannabis sativa L. and metabolites having the cannabinoid structure. The most active constituents are tetrahydrocannabinol, cannabinol, and cannabidiol. [NIH] Caspases: A family of intracellular cysteine endopeptidases. They play a key role in inflammation and mammalian apoptosis. They are specific for aspartic acid at the P1 position. They are divided into two classes based on the lengths of their N-terminal prodomains. Caspases-1,-2,-4,-5,-8, and -10 Studies 157 have long prodomains and -3,-6,-7,-9 have short prodomains. EC 3.4.22.-. [NIH] Caudal: Denoting a position more toward the cauda, or tail, than some specified point of reference; same as inferior, in human anatomy. [EU] Cerebellar: Pertaining to the cerebellum. [EU] Chronobiology: The study of biological systems as affected by time. Aging, biological rhythms, and cyclic phenomena are included. Statistical, computer-aided mathematical procedures are used to describe, in mathematical terminology, various biological functions over time. [NIH] Cocaine: An alkaloid ester extracted from the leaves of plants including coca. It is a local anesthetic and vasoconstrictor and is clinically used for that purpose, particularly in the eye, ear, nose, and throat. It also has powerful central nervous system effects similar to the amphetamines and is a drug of abuse. Cocaine, like amphetamines, acts by multiple mechanisms on brain catecholaminergic neurons; the mechanism of its reinforcing effects is thought to involve inhibition of dopamine uptake. [NIH] Curative: Tending to overcome disease and promote recovery. [EU] Cyclic: Pertaining to or occurring in a cycle or cycles; the term is applied to chemical compounds that contain a ring of atoms in the nucleus. [EU] Dendrites: Extensions of the nerve cell body. They are short and branched and receive stimuli from other neurons. [NIH] Dendritic: 1. Branched like a tree. 2. Pertaining to or possessing dendrites. [EU] Dorsal: 1. Pertaining to the back or to any dorsum. 2. Denoting a position more toward the back surface than some other object of reference; same as posterior in human anatomy; superior in the anatomy of quadrupeds. [EU] Dysphagia: Difficulty in swallowing. [EU] Electrophysiological: Pertaining to electrophysiology, that is a branch of physiology that is concerned with the electric phenomena associated with living bodies and involved in their functional activity. [EU] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Epidemiological: Relating to, or involving epidemiology. [EU] Exanthema: Exanthem; an eruptive disease or its symptomatic eruption. [EU] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Fluoxetine: The first highly specific serotonin uptake inhibitor. It is used as 158 Seizures and Epilepsy an antidepressant and often has a more acceptable side-effects profile than traditional antidepressants. [NIH] Flurothyl: A convulsant primarily used in experimental animals. It was formerly used to induce convulsions as a alternative to electroshock therapy. [NIH] Ganglia: Clusters of multipolar neurons surrounded by a capsule of loosely organized connective tissue located outside the central nervous system. [NIH] Gastroenteritis: An acute inflammation of the lining of the stomach and intestines, characterized by anorexia, nausea, diarrhoea, abdominal pain, and weakness, which has various causes, including food poisoning due to infection with such organisms as Escherichia coli, Staphylococcus aureus, and Salmonella species; consumption of irritating food or drink; or psychological factors such as anger, stress, and fear. Called also enterogastritis. [EU] Gynecology: A medical-surgical specialty concerned with the physiology and disorders primarily of the female genital tract, as well as female endocrinology and reproductive physiology. [NIH] Hypothalamus: Ventral part of the diencephalon extending from the region of the optic chiasm to the caudal border of the mammillary bodies and forming the inferior and lateral walls of the third ventricle. [NIH] Hysteria: Historical term for a chronic, but fluctuating, disorder beginning in early life and characterized by recurrent and multiple somatic complaints not apparently due to physical illness. This diagnosis is not used in contemporary practice. [NIH] Indicative: That indicates; that points out more or less exactly; that reveals fairly clearly. [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Limbic: Pertaining to a limbus, or margin; forming a border around. [EU] Lithium: Lithium. An element in the alkali metals family. It has the atomic symbol Li, atomic number 3, and atomic weight 6.94. Salts of lithium are used in treating manic-depressive disorders. [NIH] Localization: 1. The determination of the site or place of any process or lesion. 2. Restriction to a circumscribed or limited area. 3. Prelocalization. [EU] Magnetoencephalography: The measurement of magnetic fields over the Studies 159 head generated by electric currents in the brain. As in any electrical conductor, electric fields in the brain are accompanied by orthogonal magnetic fields. The measurement of these fields provides information about the localization of brain activity which is complementary to that provided by electroencephalography. Magnetoencephalography may be used alone or together with electroencephalography, for measurement of spontaneous or evoked activity, and for research or clinical purposes. [NIH] Methylphenidate: A central nervous system stimulant used most commonly in the treatment of attention-deficit disorders in children and for narcolepsy. Its mechanisms appear to be similar to those of dextroamphetamine. [NIH] Neuropharmacology: The branch of pharmacology dealing especially with the action of drugs upon various parts of the nervous system. [NIH] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neurosciences: The scientific disciplines concerned with the embryology, anatomy, physiology, biochemistry, pharmacology, etc., of the nervous sytem. [NIH] Neurosurgery: A surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord, and peripheral and sympathetic nervous system. [NIH] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Octreotide: A potent, long-acting somatostatin octapeptide analog which has a wide range of physiological actions. It inhibits growth hormone secretion, is effective in the treatment of hormone-secreting tumors from various organs, and has beneficial effects in the management of many pathological states including diabetes mellitus, orthostatic hypertension, hyperinsulinism, hypergastrinemia, and small bowel fistula. [NIH] Paediatric: Of or relating to the care and medical treatment of children; belonging to or concerned with paediatrics. [EU] Pentylenetetrazole: A pharmaceutical agent that displays activity as a central nervous system and respiratory stimulant. It is considered a noncompetitive GABA antagonist. Pentylenetetrazole has been used experimentally to study seizure phenomenon and to identify pharmaceuticals that may control seizure susceptibility. [NIH] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of YEASTS. [NIH] Picrotoxin: A noncompetitive antagonist at GABA-A receptors and thus a 160 Seizures and Epilepsy convulsant. Picrotoxin blocks the GABA-activated chloride ionophore. Although it is most often used as a research tool, it has been used as a CNS stimulant and an antidote in poisoning by CNS depressants, especially the barbiturates. [NIH] Pilocarpine: A slowly hydrolyzed muscarinic agonist with no nicotinic effects. Pilocarpine is used as a miotic and in the treatment of glaucoma. [NIH] Polytherapy: A therapy which uses more than one drug. [EU] Posterior: Situated in back of, or in the back part of, or affecting the back or dorsal surface of the body. In lower animals, it refers to the caudal end of the body. [EU] Postnatal: Occurring after birth, with reference to the newborn. [EU] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Presynaptic: Situated proximal to a synapse, or occurring before the synapse is crossed. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from INCIDENCE, which refers to the number of new cases in the population at a given time. [NIH] Prolactin: Pituitary lactogenic hormone. A polypeptide hormone with a molecular weight of about 23,000. It is essential in the induction of lactation in mammals at parturition and is synergistic with estrogen. The hormone also brings about the release of progesterone from lutein cells, which renders the uterine mucosa suited for the embedding of the ovum should fertilization occur. [NIH] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychopharmacology: The study of the effects of drugs on mental and behavioral activity. [NIH] Pulmonary: Pertaining to the lungs. [EU] Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Rickets: A condition caused by deficiency of vitamin D, especially in infancy and childhood, with disturbance of normal ossification. The disease is marked by bending and distortion of the bones under muscular action, by the formation of nodular enlargements on the ends and sides of the bones, by delayed closure of the fontanelles, pain in the muscles, and sweating of the head. Vitamin D and sunlight together with an adequate diet are curative, provided that the parathyroid glands are functioning properly. [EU] Secretion: 1. The process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific Studies 161 substance of the blood to the elaboration of a new chemical substance. 2. Any substance produced by secretion. [EU] Sporadic: Neither endemic nor epidemic; occurring occasionally in a random or isolated manner. [EU] Symptomatic: 1. Pertaining to or of the nature of a symptom. 2. Indicative (of a particular disease or disorder). 3. Exhibiting the symptoms of a particular disease but having a different cause. 4. Directed at the allying of symptoms, as symptomatic treatment. [EU] Temperament: Predisposition to react to one's environment in a certain way; usually refers to mood changes. [NIH] Tetanus: A disease caused by tetanospasmin, a powerful protein toxin produced by clostridium tetani. Tetanus usually occurs after an acute injury, such as a puncture wound or laceration. Generalized tetanus, the most common form, is characterized by tetanic muscular contractions and hyperreflexia. Localized tetanus presents itself as a mild condition with manifestations restricted to muscles near the wound. It may progress to the generalized form. [NIH] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Ventral: 1. Pertaining to the belly or to any venter. 2. Denoting a position more toward the belly surface than some other object of reference; same as anterior in human anatomy. [EU] Patents 163 CHAPTER 5. PATENTS ON SEIZURES AND EPILEPSY Overview You can learn about innovations relating to seizures and epilepsy by reading recent patents and patent applications. Patents can be physical innovations (e.g. chemicals, pharmaceuticals, medical equipment) or processes (e.g. treatments or diagnostic procedures). The United States Patent and Trademark Office defines a patent as a grant of a property right to the inventor, issued by the Patent and Trademark Office.23 Patents, therefore, are intellectual property. For the United States, the term of a new patent is 20 years from the date when the patent application was filed. If the inventor wishes to receive economic benefits, it is likely that the invention will become commercially available to patients with seizures and epilepsy within 20 years of the initial filing. It is important to understand, therefore, that an inventor’s patent does not indicate that a product or service is or will be commercially available to patients with seizures and epilepsy. The patent implies only that the inventor has “the right to exclude others from making, using, offering for sale, or selling” the invention in the United States. While this relates to U.S. patents, similar rules govern foreign patents. In this chapter, we show you how to locate information on patents and their inventors. If you find a patent that is particularly interesting to you, contact the inventor or the assignee for further information. 23Adapted from The U. S. Patent and Trademark Office: http://www.uspto.gov/web/offices/pac/doc/general/whatis.htm. 164 Seizures and Epilepsy Patents on Seizures and Epilepsy By performing a patent search focusing on seizures and epilepsy, you can obtain information such as the title of the invention, the names of the inventor(s), the assignee(s) or the company that owns or controls the patent, a short abstract that summarizes the patent, and a few excerpts from the description of the patent. The abstract of a patent tends to be more technical in nature, while the description is often written for the public. Full patent descriptions contain much more information than is presented here (e.g. claims, references, figures, diagrams, etc.). We will tell you how to obtain this information later in the chapter. The following is an example of the type of information that you can expect to obtain from a patent search on seizures and epilepsy: · Detecting seizure Inventor(s): Tanouye; Mark A. (El Cerrito, CA); Kuebler; Daniel (Kensington, CA); Zhang; HaiGuang (Berkeley, CA) Assignee(s): The Regents of the University of California (Oakland, CA) Patent Number: 6,521,462 Date filed: May 16, 2000 Abstract: Methods and composition for inducing, detecting and modulating seizure in animal systems are provided. Methods for inducing seizure comprise (1) electrically stimulating an unanesthetized fly and detecting seizure induction in the fly (2) electrically stimulating a fly with less than 10V and detecting seizure induction in the fly; (3) electrically stimulating a population of wild-type flies and detecting seizure induction in most of the flies and (4) electrically stimulating a population of flies and quantitatively detecting seizure induction in the flies across genotypes or experience. Methods for modulating seizure induction comprise changing the activity of a novel seizure regulator in an animal system and confirming a resultant change in seizure inducibility of the system. Web site: http://www.delphion.com/details?pn=US06521462__ · Method of treating epilepsy Inventor(s): Hamm; Robert (Crozier, VA); Deford; S. Michelle (Richmond, VA); Shiotani; Tadashi (Tokyo, JP) Assignee(s): Daiichi Pharmaceutical Co., Ltd. (Tokyo, JP) Patent Number: 6,420,416 Patents 165 Date filed: June 22, 2001 Abstract: A method for treatment of neuronal disorders and traumatic brain injury is provided which involves timely administration to a subject in need thereof of an effective amount of nefiracetam. Web site: http://www.delphion.com/details?pn=US06420416__ · Method and apparatus for treating seizure disorders by stimulating the olfactory senses Inventor(s): Rise; Mark T. (Monticello, MN) Assignee(s): Medtronic, Inc. (Minneapolis, MN) Patent Number: 6,374,140 Date filed: April 30, 1998 Abstract: The present invention discloses techniques for preventing a possible onset of a seizure using a sensor, a signal generator and at least one implantable electrode. The electrodes are positioned to stimulate the olfactory nervous system. The sensor senses a parameter of the body indicative of the possible onset of a seizure. The sensor generates a sensing signal which is processed and an algorithm is utilized to determine whether the sensing signal shows a pattern indicative of a possible seizure onset. If such a pattern is recognized, the signal generator provides electrical stimulation via electrodes to generate an olfactory sensory stimulus. The patient is thereby alerted, the electrical activity of the brain is desynchronized and the likelihood of a seizure occurring is reduced. Excerpt(s): A preferred form of the invention consists of a sensing portion capable of detecting the onset of a seizure, a signal processing portion, and a therapy delivery portion. The sensing portion may be an electrical sensor, chemical sensor, and/or a sensor for sensing physiological changes. The particular structure and parameter to measure may be selected from any known techniques which provide indication of the possible onset of a seizure. The signal processing portion processes and analyzes the sensed signal using an algorithm for recognizing a pattern scheme indicative of the onset of a seizure. If a pattern indicative of the onset of a seizure is recognized, the therapy delivery portion is triggered. The therapy delivery portion is preferably a stimulation electrode which delivers sensory stimulation to the olfactory sensory system of the patient thereby decreasing the likelihood that a seizure will occur. Under another embodiment, the invention includes a therapy delivery portion. Under this embodiment, the therapy delivery portion provides 166 Seizures and Epilepsy sensory stimulation to the olfactory sensory system of the patient in a continuous or periodic manner to thereby decrease the likelihood that a seizure will occur. By using the foregoing techniques, seizure disorders, including epilepsy, can be treated and seizures can be alleviated or prevented using olfactory sensory stimulation. Examples of the more important features of this invention have been broadly outlined above in order that the detailed description that follows may be better understood and so that contributions which this invention provides to the art may be better appreciated. There are, of course, additional features of the invention which will be described herein and which will be included within the subject matter of the claims appended hereto. Web site: http://www.delphion.com/details?pn=US06374140__ · Method of controlling epilepsy by brain stimulation Inventor(s): Benabid; Alim L. (Meylan, FR); Marescaux; Christian (Strasbourg, FR) Assignee(s): Medtronic, Inc. (Minneapolis, MN) Patent Number: 5,800,474 Date filed: November 1, 1996 Abstract: A method of preventing seizures as experienced by persons with Epilepsy. High frequency electrical stimulation pulses are supplied to the subthalamic nucleus thereby blocking neural activity in the subthalamic nucleus and reducing excitatory input to the substantia nigra which leads to a reduction in the occurrence of seizures. Web site: http://www.delphion.com/details?pn=US05800474__ Patent Applications on Seizures and Epilepsy As of December 2000, U.S. patent applications are open to public viewing.24 Applications are patent requests which have yet to be granted (the process to achieve a patent can take several years). The following patent applications have been filed since December 2000 relating to seizures and epilepsy: 24 This has been a common practice outside the United States prior to December 2000. Patents 167 · Carotid sinus nerve stimulation for epilepsy control Inventor(s): Patwardhan, Ravish Vinay; (Birmingham, AL); Tubbs, Richard Shane; (Mt. Olive, AL) Correspondence: Benjamin Aaron Adler; Adler & Associates; 8011 Candle Lane; Houston, TX 77071 US Patent Application Number: 20020103516 Date filed: September 20, 2001 Abstract: The present invention describes a method of treating, controlling or preventing epilepsy, comprising the steps of attaching at least one electrode to at least one of a patient's carotid sinus nerves, and applying or modulating electric signals to or recording from at least one of the patient's carotid sinus nerves through the at least one electrode, so as to treat, control, or prevent epilepsy. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html · Method and medical system for monitoring a patient suffering from epilepsy Inventor(s): Schmidt, Volker; (Erlangen, DE) ; Striebel, Werner; (Schwarzenbruck, DE) Correspondence: Schiff Hardin & Waite; 6600 Sears Tower; 233 S Wacker Dr; Chicago, IL 60606-6473 US Assignee(s): Siemens Aktiengesellschaft Patent Application Number: 20020099275 Date filed: January 24, 2002 Abstract: In a method and a medical system for monitoring a patient suffering from epilepsy located outside a medical establishment, at least one measured value of the patient relating to the epilepsy is acquired and is supplied to and analyzed with an analysis device and is stored in a central data bank. An alarm generator triggers an alarm signal of a first type if the analyzed measured value is classified as critical for the state of health of the patient or triggers an alarm signal of a second type if the measured value of the patient fails to arrive. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html 168 Seizures and Epilepsy · Agmatine and agmatine analogs in the treatment of epilepsy, seizure, and electroconvulsive disorders Inventor(s): Crooks, Peter A.; (Lexington, KY) ; Bence, Aimee K.; (Lexington, KY) ; Worthen, David R.; (Lexington, KY) Correspondence: Mcdermott, Will & Emery; 600 13th Street, N.W.; Washington, DC 20005-3096 US Patent Application Number: 20020065323 Date filed: June 15, 2001 Abstract: Pharmaceutical preparations containing of agmatine, congeners, analogs or derivatives thereof for use in preventing or treating epilepsy, seizures and other electroconvulsive disorders are provided. Embodiments include administering an effective amount of agmatine, an agmatine analog or a pharmaceutically acceptable salt thereof to a human subject in need of treatment or prevention of epilepsy, seizure or other electroconvulsive disorder to treat, reduce, or prevent the disorder in the subject. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html · Epilepsy treatment Inventor(s): Donovan, Stephen; (Capistrano Beach, CA) Correspondence: Stephen Donovan; Allergan, Inc. T2 7H; Tower Two, Seventh Floor; 2525 Dupont Drive; Irvine, CA 92612 US Patent Application Number: 20010053369 Date filed: July 12, 2001 Abstract: Methods for treating a movement disorder by intracranial administration to a human patient of a therapeutically effective amount of a neurotoxin, such as a botulinum toxin type A. Web site: http://appft1.uspto.gov/netahtml/PTO/search-bool.html Keeping Current In order to stay informed about patents and patent applications dealing with seizures and epilepsy, you can access the U.S. Patent Office archive via the Internet at no cost to you. This archive is available at the following Web address: http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” You will see two broad options: (1) Patent Grants, and (2) Patent Applications. To see a list of granted patents, perform the Patents 169 following steps: Under “Patent Grants,” click “Quick Search.” Then, type “seizures and epilepsy” (or synonyms) into the “Term 1” box. After clicking on the search button, scroll down to see the various patents which have been granted to date on seizures and epilepsy. You can also use this procedure to view pending patent applications concerning seizures and epilepsy. Simply go back to http://www.uspto.gov/main/patents.htm. Under “Services,” click on “Search Patents.” Select “Quick Search” under “Patent Applications.” Then proceed with the steps listed above. Books 171 CHAPTER 6. BOOKS ON SEIZURES AND EPILEPSY Overview This chapter provides bibliographic book references relating to seizures and epilepsy. You have many options to locate books on seizures and epilepsy. The simplest method is to go to your local bookseller and inquire about titles that they have in stock or can special order for you. Some patients, however, feel uncomfortable approaching their local booksellers and prefer online sources (e.g. www.amazon.com and www.bn.com). In addition to online booksellers, excellent sources for book titles on seizures and epilepsy include the Combined Health Information Database and the National Library of Medicine. Once you have found a title that interests you, visit your local public or medical library to see if it is available for loan. Book Summaries: Federal Agencies The Combined Health Information Database collects various book abstracts from a variety of healthcare institutions and federal agencies. To access these summaries, go to http://chid.nih.gov/detail/detail.html. You will need to use the “Detailed Search” option. To find book summaries, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer. For the format option, select “Monograph/Book.” Now type “seizures and epilepsy” (or synonyms) into the “For these words:” box. You will only receive results on books. You should check back periodically with this database which is updated every 3 months. The following is a typical result when searching for books on seizures and epilepsy: 172 Seizures and Epilepsy · Epilepsy and the Family: A New Guide Source: Cambridge, MA, Harvard University Press, 264 p., 1999. Contact: Harvard University Press, Cambridge, MA. Web site: www.hup.harvard.edu Summary: Epilepsy and the Family: A New Guide is an update of a classic handbook for people with seizure disorders and their families. The author wrote this book to educate people with epilepsy, but he cautions the reader not to use this as a substitute for medical advice. Using references to actual cases, the author provides coping strategies for the practical and emotional challenges that epilepsy brings to the family. The author devotes chapters to special issues, such as (1) marital problems, (2) sexual activity, (3) childbearing and inheritance, (4) personality changes and violence, (5) treatment options, and (6) what to do when a seizure occurs. This new guide (1) addresses questions that adults with epilepsy may not ask their physicians; (2) provides chapters tailored to the special needs of spouses, parents, children, and siblings of people with epilepsy; and (3) discusses some medical conditions that can cause seizure disorders in children and adults, while addressing the issue that the cause of many seizure disorders is not known. Health professionals can benefit from this book by learning how to treat patients with epilepsy better by recognizing the needs of the entire family. · Epilepsy: Patient and Family Guide. Second Edition Source: Philadelphia, PA, F.A. Davis Company, 446 p., 2002. Contact: F.A. Davis Company, 1915 Arch Street, Philadelphia, PA 19103. Web site: http://www.fadavis.com Summary: Epilepsy: Patient and Family Guide is an updated resource that addresses all aspects (psychosocial, financial, legal, and medical) of epilepsy to help adult patients with epilepsy or parents of children with epilepsy understand the disorder and to enable them to better cope with the problems it causes. It is written in a style that the general reader can easily follow. The first section is entitled Medical Aspects of Epilepsy and consists of six chapters that cover topics including (1) brain anatomy and epilepsy, (2) seizures and epileptic syndromes, and (3) seizure provoking factors. The second section is entitled Diagnosis and Treatment of Epilepsy and is divided into seven chapters that (1) describe the health care team for a patient with epilepsy, (2) discuss how epilepsy is diagnosed, (3) discuss providing first aid for seizures, (4) summarize the Books 173 principles of drug therapy, (5) discuss anticonvulsants, (6) discuss surgical therapies, and (7) describe other epilepsy therapies. The third section is entitled Epilepsy in Children and consists of 10 chapters that discuss (1) epilepsy in infancy, (2) Epilepsy in childhood, (3) epilepsy in adolescence, (4) outgrowing epilepsy, (5) intellectual and behavioral development, (6) how to tell children and others about epilepsy, (7) how to live an active life, (8) the education of children with epilepsy, (9) mental handicaps and cerebral palsy, and (10) how children can cope with epilepsy after their parents are gone. The fourth section is entitled Epilepsy in Adults and consists of six chapters that address (1) living with epilepsy, (2) pregnancy and menopause, (3) parenting by people with epilepsy, (4) employment issues for people with epilepsy, (5) mental health in adult patients with epilepsy, and (6) epilepsy in the elderly. The fifth sections entitled Legal and Financial Issues in Epilepsy, consists of two chapters that discuss (1) legal rights of people with epilepsy and (2) insurance and government assistance for patients with epilepsy. The sixth section entitled Resources for People with Epilepsy consists of three chapters that describe the Epilepsy Foundation and other resources for people with epilepsy and discuss the prospects for curing epilepsy. The book also contains five appendices: (1) Epilepsy-related terminology, (2) anticonvulsants, (3) drug interactions, (4) resources for people with epilepsy, and (5) references and suggested readings. · Brain Plasticity and Epilepsy Source: San Diego, CA, Academic Press, 625 p., 2001. Contact: Academic Press, 525 B Street, Suite 1900, San Diego, CA 921014495. Web site: http://www.academicpress.com Summary: Brain Plasticity and Epilepsy is based on the proceedings of the Morrell Symposium on Brain Plasticity and Epilepsy held March 26 to 28, 1999, at the Marine Biology Laboratory, Woods Hole, Massachusetts. Morrell's work had unusually broad scope, ranging from fundamental mechanisms of acquired behavior, through the neuronal substrates of epileptogenesis and its influence on brain function, to surgical treatment of epilepsy and its consequences. The book is a state-of-the-art review of brain plasticity and epilepsy. The chapters cover these topics in relation to (1) maturation of the nervous system, (2) secondary epileptogenesis, (3) normal and nonepileptic abnormal behavior, and (4) functional neurosurgery (specifically multiple subpial transection). Chapter titles include (1) Mechanisms of Brain Plasticity: From Normal Brain Function 174 Seizures and Epilepsy to Pathology; (2) Brain Development and Generation of Brain Pathologies; (3) Maturation of Channels and Receptors: Consequences for Excitability; (4) Neuronal Activity and the Establishment of Normal and Epileptic Circuits During Brain Development; (5) The Effects of Seizures on the Hippocampus of the Immature Brain; (6) Abnormal Development and Catastrophic Epilepsies: The Clinical Picture and the Relation to Neuroimaging; (7) Cortical Reorganization and Seizure Generation in Dysplastic Cortex; (8) Rasmussen's Syndrome with Particular Reference to Cerebral Plasticity; (9) Structural Reorganization of Hippocampal Networks Caused by Seizure Activity; (10) Epilepsy-associated Plasticity in gamma-Aminobutyric Acid Receptor Expression, Function, and Inhibitory Synaptic Properties; (11) Synaptic Plasticity and Secondary Epileptogenesis; (12) Synaptic Plasticity in Epileptogenesis: Cellular Mechanisms Underlying Long-lasting Synaptic Modifications That Require New Gene Expression; (13) Cellular Correlates of Behavior; (14) Mechanisms of Neuronal Conditioning; (15) Plasticity in the Aging Central Nervous System; (16) Secondary Epileptogenesis, Kindling, and Intractable Epilepsy: A Reappraisal from the Perspective of Neural Plasticity; (17) Kindling and the Mirror Focus; (18) Partial Kindling and Behavioral Pathologies; (19) The Mirror Focus and Secondary Epileptogenesis; (20) Hippocampal Lesions in Epilepsy: A Historical Review; (21) Clinical Evidence for Secondary Epileptogenesis; (22) Epilepsy as a Progressive Disorder; (23) Pathophysiological Aspects of Landau-Kleffner Syndrome: From the Active Epileptic Phase to Recovery; (24) Local Pathways of Seizure Propagation in Neocortex; (25) Multiple Subpial Transection: A Clinical Assessment; and (26) The Legacy of Frank Morrell. · Limbic Seizures in Children Source: London, England, John Libbey and Company Ltd., 264 p., 2001. Contact: John Libbey and Company Ltd., P.O. Box 276, Eastleight, SO50 5YS, England. 44 (0)23 8065 0208. FAX: 44 (0)23 8065 0259. Web site: www.fondazione-mariani.org E-mail: info@fondazione-mariani.org Summary: Limbic Seizures in Children is the product of a colloquium intended to outline the specific expression of epilepsies involving the limbic structures in children and establish a consensus on the evidence relevant to the clinical management of these epilepsies. Topics include (1) the limbic system, (2) mesial temporal sclerosis, (3) impairment of consciousness, (4) neuro-vegetative manifestations, (5) language and Books 175 speech disturbances, (6) motor automatisms, (7) postural disturbances, (8) perisylvian cortex involvement, (9) mesio-temporal seizures, (10) limbic seizures, (11) febrile convulsive attacks, (12) mental disturbances, (13) focal seizures, (14) diagnostic tests, (15) medical therapy, and (16) surgical therapy. · Ketogenic Diet: A Treatment for Epilepsy. Third Edition Source: New York, NY, Demos Medical Publishing, 210 p., 2000. Contact: Demos Medical Publishing, Inc., 386 Park Avenue South, New York, NY 10016. (800) 532-8663. FAX: (212) 683-0118. E-mail: keto@pennycorner.com Summary: The Ketogenic Diet: A Treatment for Epilepsy introduces the ketogenic diet as a means of seizure control in epilepsy. It is intended for physicians, dieticians, and parents of children with epilepsy who might benefit from the treatment. The book is based on the experience acquired in using the ketogenic diet at the Johns Hopkins Pediatric Epilepsy Center. The book is divided into six sections. The 12 chapters (1) provide an introduction to the ketogenic diet, (2) provide answers to common questions about the diet, (3) present a historical overview of the ketogenic diet, (4) provide information on starting the diet, (5) describe how to fine tune the diet, (6) describe how to make the diet work at home and on the road, (7) discuss going off the diet, (8) describe how to make the necessary calculations for the diet, (9) discuss adapting the diet to liquid formulas and tube feedings, (10) provide sample meal plans, (11) discuss the results of new research studies of the diet, and (12) presents a general summary/conclusion about the diet and its future prospects in controlling seizures in infants and children. The appendices provide information on (1) epilepsy medications and medications normally used with the ketogenic diet, (2) Johns Hopkins Hospital Nursing Critical Pathways, (3) selected references, and (4) the nutritional content of various foods. · Plasticity in Epilepsy: Dynamic Aspects of Brain Function Source: Philadelphia, PA, Lippincott Williams and Wilkins, 396 p., 1999. Contact: Lippincott Williams and Wilkins, 227 East Washington Square, Philadelphia, PA 19106-3780. Web site: http://www.lww.com/ 176 Seizures and Epilepsy Summary: Plasticity in Epilepsy: Dynamic Aspects of Brain Function considers plasticity, epilepsy, and dynamic aspects of brain function that are of great importance for basic research and clinical work in neurology, neuropediatry, epileptology, neurosurgery, neuropsychology, and psychiatry. Some specific topics addressed include (1) whether seizures cause cerebral damage; (2) whether interictal epileptic activity can be associated with progressive mental deterioration, cognitive problems, or the loss of memory; (3) what the relations are among febrile convulsions, the development of temporal lobe epilepsy, and inheritance; and (4) what the mechanisms are of plasticity involved in progressive dynamic changes and running down phenomenon. Findings of animal experiments, the analysis of signal processing, functional reorganization, maturation, neurochemistry, and pharmacology are combined and these data discussed along with the results of clinical investigations on changes of brain function and the practical consequences for diagnosis and therapeutic strategies. · Psychiatric Comorbidity in Epilepsy: Basic Mechanisms, Diagnosis, and Treatment Source: Washington, DC, American Psychiatric Press, Inc., 427 p., 1998. Contact: American Psychiatric Press, Inc., 1400 K Street, N.W., Washington, DC 20005. Web site: www.appi.org Summary: Psychiatric Comorbidity in Epilepsy: Basic Mechanisms, Diagnosis, and Treatment describes epilepsy as it is intertwined with advances in both neurology and psychiatry. These advances include increasing knowledge of brain mechanisms, improved and more clearly targeted medical and surgical treatments, and an increased awareness of psychological and social consequences of the disorder. The focus of the book is on the diagnosis and treatment of psychiatric illness in people with epilepsy. Chapters one through four deal with historical overlap in the fields of neurology and psychiatry, mechanisms by which people with epilepsy may experience behavioral disturbances, and identification of the etiology of these disturbances and psychiatric comorbidity from both neuropsychiatric and neuropsychological standpoints. Chapter five considers the subject of sleep in the differential diagnosis of seizures and its possible neurophysiological relationships with epilepsy. Chapters six, seven, and eight show the wide array of psychiatric presentations of people with epilepsy. These chapters include a comprehensive review of the incidence, possible causes, and treatment of depression in people Books 177 with epilepsy from an eclectic perspective as well as the discussion of possible neural mechanisms of behavior, diagnostic considerations, and the use of multidisciplinary management of patients having nonepileptic events. Chapters nine through eleven deal with the importance of the appropriate selection of antiepileptic drugs, the treatment of psychiatric comorbidity with reference to the selection of appropriate psychotropics, and the importance of family therapy in people with epilepsy. Chapter twelve is a first person account of epilepsy which reflects the wide range of psychosocial and treatment issues encountered by those with epilepsy. In the preface, emphasis was placed on viewing quality of life as a measurable treatment outcome in the care of patients with epilepsy, understanding the economics of epilepsy and health care reforms, and addressing stigmas forced on people with epilepsy. · Brainstorms Healer: Epilepsy in Our Experience Source: Philadelphia, PA, Lippincott-Raven Publishers, 196 p., 1998. Contact: Lippincott-Raven Publishers, 227 East Washington Square, Philadelphia, PA, 19106-3780. Summary: The Brainstorms Healer: Epilepsy in Our Experience is the fourth in a series of books about the personal aspects of seizures and epilepsy. The book presents the perspectives of health care professionals from around the world who help patients with epilepsy or who experience seizures themselves. The book is intended to strengthen communication and understanding between patients with epilepsy and providers of care. The book's anecdotes reveal an array of emotions, among them frustration in failing to control seizures, inspiration, the sadness of loss, gratitude for lessons learned on the meaning of life, and the elation that marks the achievement of one's potential. Practitioners who have epilepsy share how they have come to understand firsthand the perspectives of patients who struggle similarly. The book begins with a tribute to the late Kiffin Penry, M.D., who established the Antiepileptic Drug Development Program and inspired scores of professionals and patients alike. An appendix provides a list of contributors. · Seizure Free: from Epilepsy, to Brain Surgery, I Survived, and You Can, Too! Source: English Press Publications, Austin, TX, 134 p., 1998. Contact: English Press Publications, P.O. Box 5435, Austin, TX 787635435. 178 Seizures and Epilepsy Summary: Seizure Free: from Epilepsy, to Brain Surgery, I Survived, and You Can, Too!, is the author's personal account of her own journey through epilepsy and brain surgery, describes what people have to go through, and how surgery can save lives. The author, who is strongly in favor of surgery as a treatment for epilepsy, acknowledges that it is not always a cure or even an option. Prior to seeking surgery as treatment, she emphasizes the importance of (1) proving that the seizures are not psychosomatic, (2) trying medication to control the seizures, and (3) seeking psychological counseling. The author describes in detail what is involved in the stages of testing for brain surgery and how long it takes to progress through these stages. The three stages for the author were (1) electroencephalography (EEG) video monitoring with scalp electrodes, (2) EEG video monitoring with depth electrodes, and (3) surgery. The author discusses how she made the decision to have the surgery and what to expect before and after surgery, including postoperative depression and posttraumatic stress. The author concludes by sharing what her life was like for the two and a half years after her surgery. Although she remained free of seizures after her surgery, she experienced anger and depression over how epilepsy had affected her life, while she was also relieved to be free of seizures and able to help others. · Epilepsy Source: Springfield, NJ, Enslow Publishers, Inc., 112p., 1998. Contact: Enslow Publishers, Inc., 44 Fadem Road, Box 699, Springfield, NJ 07081. Summary: Epilepsy is a book that discusses the causes of and treatment options for epilepsy in popular style, to be easily read and understood by the layperson. The book, a volume in the series Diseases and People, consists of seven chapters dealing with (1) electrochemical storms in the brain, (2) epilepsy through the ages, (3) what is epilepsy, (4) diagnosing epilepsy, (5) treating epilepsy, (6) coping with epilepsy, and (7) a future without epilepsy. The chapters include case summaries of persons with epilepsy to illustrate the topics that are discussed. The book also presents a discussion of issues associated with epilepsy such as how seizures affect the quality of life of persons with epilepsy and what causes seizures. An epilepsy timeline, a glossary of terms used in describing epilepsy, a bibliography for each chapter, and a list of books and articles for further reading are also included. Books 179 · Reflex Epilepsies and Reflex Seizures Source: Philadelphia, PA, Lippincott-Raven Publishers, Advances in Neurology, Volume 75, 310 p., 1998. Contact: Lippincott-Raven Publishers, 227 East Washington Square, Philadelphia, PA 19106-3780. Summary: Reflex Epilepsies and Reflex Seizures is a review intended for a mainly clinical audience of neurologists and trainees in the clinical neurosciences. However, the authors hope it will also be of interest to basic neuroscientists and neuropsychologists. They assume that most readers are familiar with basic clinical notions of epilepsy and electroencephalography. The book opens with a review of the modern history of reflex seizures, then considers classification and some applications of basic clinical neurophysiology to reflex seizures and the reflex epilepsies. The largest part of the book consists of discussions of the different forms of clinical reflex epilepsy and reflex seizures, organized according to the triggering stimulus. They note that reflex epilepsy is regarded by some as a clinical curiosity and an interest such as butterfly collecting, an attractive thing of no great consequence. They are convinced that this idea is wrong, and hope that this book will stand as a testament to that fact. While reflex epilepsy is not common, when properly studied it teaches the reader about the brain in general and about epilepsy in particular. 68 figures, 25 tables, 1,251 references. · Erica Has a Problem: Epilepsy Source: New York, NY, Vantage Press, Inc., 89 p., 1998. Contact: Vantage Press, Inc., 516 West 34th Street, New York, NY 10001. Summary: Erica Has a Problem: Epilepsy is about a young girl who learns that she has epilepsy. Written by a woman who personally dealt with epilepsy and whose goal is to help children learn about epilepsy, this story describes Erica's step-by-step response to this illness. Erica first starts to show warning signs, like daydreaming in school. Then she gets hit by a baseball during physical education class. One of her classmates noticed that she was jerking her arms and legs and making grunting noises before it happened. The school notifies Erica's parents about what happened, commenting that Erica started jerking her arms before getting hit. After Erica's parents get another call from school regarding another seizure, they take Erica to a doctor who then refers her to a neurologist. The process of finding the right doctor is frustrating for Erica's parents, but they finally find a doctor who can help. He talks with Erica and her 180 Seizures and Epilepsy parents, learns about Erica's symptoms, and orders an electroencephalogram (EEG). The EEG confirms that Erica has absence seizure s and complex partial seizures. Absence seizures occur without warning, have few visible symptoms, and are often mistaken for daydreaming. Complex partial seizures alter consciousness and are characterized by arm and leg movement and grunting. The doctor prescribes valproic acid and cautions that there will be side effects. Erica's mother takes her to school the next day and tells the school nurse, who then takes Erica to all of her teachers to explain that she has epilepsy. Erica also tells her friends and classmates. Once Erica and her parents learn to adjust the medication properly, Erica lives a normal life. · Neuropharmacology Methods in Epilepsy Research Source: Boca Raton, FL, CRC Press, 282 p., 1998. Contact: CRC Press LLC, 2000 Corporate Blvd., NW., Boca Raton, FL 33431. (561)994-0555. FAX: (800)374-3401. Web site: http://www.crcpress.com Summary: Neuropharmacology Methods in Epilepsy Research describes the fundamental methodology and procedures used in the modern study of experimental models of epilepsy. The book consists of 12 chapters: (1) Electroshock; (2) Chemoconvulsants; (3) The Kindling Model of Temporal Lobe Epilepsy; (4) Rapid Kindling: Behavioral and Electrographic; (5) Experimental Models of Status Epilepticus; (6) Audiogenic Seizures in Mice and Rats; (7) Models of Focal Epilepsy in Rodents; (8) Evaluation of Associated Behavioral and Cognitive Deficits in Anticonvulsant Drug Testing; (9) Gene Targeting Models of Epilepsy: Technical and Analytical Considerations; (10) The Hippocampal Slice Preparation; (11) Microdialysis Techniques for Epilepsy Research; and (12) Methodologies for Determining Rhythmic Expression of Seizures. Each chapter is written by authors with extensive experience in using the techniques described and who actively employ the technology in their own laboratories. Each chapter contains the basic steps required for the technique, and describes how the results of the experiments should be interpreted so that they will contribute to a better understanding of epilepsy. Book Summaries: Online Booksellers Commercial Internet-based booksellers, such as Amazon.com and Barnes & Noble.com, offer summaries which have been supplied by each title’s Books 181 publisher. Some summaries also include customer reviews. Your local bookseller may have access to in-house and commercial databases that index all published books (e.g. Books in PrintÒ). The following have been recently listed with online booksellers as relating to seizures and epilepsy (sorted alphabetically by title; follow the hyperlink to view more details at Amazon.com): · Neuropharmacology of Epilepsy: Pathophysiology and Drug Mechanisms by Robert A. Gross (Editor), et al; Humana Press (January 2004); ISBN: 0896035220; http://www.amazon.com/exec/obidos/asin/0896035220/icongroupinte rna · Surgical Treatment of Epilepsy by Josef Zentner (Editor), Wolfgang Seeger (Editor); September 2003; ISBN: 3211837701; http://www.amazon.com/exec/obidos/tg/detail//3211837701/icongroupinterna · Seizures and Epilepsy in Childhood: A Guide by John M., Md Freeman, et al; December 2002; ISBN: 080187050X; http://www.amazon.com/exec/obidos/tg/detail//080187050X/icongroupinterna The National Library of Medicine Book Index The National Library of Medicine at the National Institutes of Health has a massive database of books published on healthcare and biomedicine. Go to the following Internet site, http://locatorplus.gov/, and then select “Search LOCATORplus.” Once you are in the search area, simply type “seizures and epilepsy” (or synonyms) into the search box, and select “books only.” From there, results can be sorted by publication date, author, or relevance. The following was recently catalogued by the National Library of Medicine:25 · Advisory Commission on Epilepsy and its Consequences. Hearing ... Ninety-third Congress, second session, on H. R. 13405 ... bills to In addition to LOCATORPlus, in collaboration with authors and publishers, the National Center for Biotechnology Information (NCBI) is adapting biomedical books for the Web. The books may be accessed in two ways: (1) by searching directly using any search term or phrase (in the same way as the bibliographic database PubMed), or (2) by following the links to PubMed abstracts. Each PubMed abstract has a “Books” button that displays a facsimile of the abstract in which some phrases are hypertext links. These phrases are also found in the books available at NCBI. Click on hyperlinked results in the list of books in which the phrase is found. Currently, the majority of the links are between the books and PubMed. In the future, more links will be created between the books and other types of information, such as gene and protein sequences and macromolecular structures. See http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Books. 25 182 Seizures and Epilepsy provide for the establishment of a national advisory commission to develop a national plan for the controlof epilepsy... Author: United States. Congress. House. Committee on Interstate and Foreign Commerce. Subcommittee on Public Health and Environment; Year: 1974; Washington, U. S. Govt. Print. Off., 1974. · Alcohol and seizures: basic mechanisms and clinical concepts. Author: editors, Roger J. Porter ... [et al.]; technical editor, Devera G. Schoenberg; Year: 1990; Philadelphia: Davis, c1990. ISBN: 0803670087 http://www.amazon.com/exec/obidos/ASIN/0803670087/icongroupin terna · Atlas of epileptic seizures and syndromes. Author: Hans O. Lüders, Soheyl Noachtar; translated from the German by Judy K. Benson; Year: 2001; Philadelphia: Saunders, c2001. ISBN: 0721669468 http://www.amazon.com/exec/obidos/ASIN/0721669468/icongroupin terna · Benign childhood partial seizures and related epileptic syndromes. Author: C.P. Panayiotopoulos; Year: 1999; London: John Libbey, c1999. ISBN: 0861965779 http://www.amazon.com/exec/obidos/ASIN/0861965779/icongroupin terna · Cerebellar stimulation for spasticity and seizures. Author: editors, Ross Davis, James R. Bloedel; Year: 1984; Boca Raton, Fla.: CRC Press, c1984. ISBN: 0849360676 http://www.amazon.com/exec/obidos/ASIN/0849360676/icongroupin terna · Complex partial seizures and their treatment. Author: Editors, J. Kiffin Penry, David D. Daly; Year: 1975; New York: Raven Press, c1975. ISBN: 0890040400 http://www.amazon.com/exec/obidos/ASIN/0890040400/icongroupin terna · Diagnosis and management of epilepsy in adults. A national clinical guideline recommended for use in Scotland. Scottish Intercollegiate Guidelines Network. Pilot edition. Author: Moore, David P; Year: 1997; Edinburgh, Scotland: SIGN, 1997. ISBN: 1899893016 · Diagnosis and management of seizures in children. Author: Gregory L. Holmes; Year: 1987; Philadelphia: Saunders, 1987. ISBN: 0721611885 http://www.amazon.com/exec/obidos/ASIN/0721611885/icongroupin terna · Epilepsies: etiologies and prevention. Author: edited by Prakash Kotagal, Hans O. Lüders; Year: 1999; San Diego: Academic Press, c1999. ISBN: 0124221505 Books 183 http://www.amazon.com/exec/obidos/ASIN/0124221505/icongroupin terna · Epilepsy: models, mechanisms, and concepts. Author: edited by Philip A. Schwartzkroin; Year: 1993; Cambridge [England]; New York, NY: Cambridge University Press, 1993. ISBN: 0521392985 http://www.amazon.com/exec/obidos/ASIN/0521392985/icongroupin terna · Epileptic seizures and syndromes: with some of their theoretical implications. Author: edited by Peter Wolf; Year: 1994; London: John Libbey, c1994. ISBN: 0861964306 · Fits and faints. Author: John B.P. Stephenson; Year: 1990; London: Mac Keith Press; Philadelphia: J.B. Lippincott, 1990. ISBN: 0632028114 http://www.amazon.com/exec/obidos/ASIN/0632028114/icongroupin terna · Frontal lobe seizures and epilepsies. Author: editors, Patrick Chauvel ... [et al.]; Year: 1992; New York: Raven Press, c1992. ISBN: 0881678279 http://www.amazon.com/exec/obidos/ASIN/0881678279/icongroupin terna · Neurotransmitters, seizures, and epilepsy II. Author: editors, Ruggero G. Fariello ... [et al.]; Year: 1984; New York: Raven Press, c1984. ISBN: 088167057X http://www.amazon.com/exec/obidos/ASIN/088167057X/icongroupi nterna · Neurotransmitters, seizures, and epilepsy III. Author: editors, Giuseppe Nisticò ... [et al.]; Year: 1986; New York: Raven Press, c1986. ISBN: 0881672297 http://www.amazon.com/exec/obidos/ASIN/0881672297/icongroupin terna · Neurotransmitters, seizures, and epilepsy. Author: editors, P.L. Morselli [et al.]; Year: 1981; New York: Raven Press, c1981. ISBN: 0890047537 http://www.amazon.com/exec/obidos/ASIN/0890047537/icongroupin terna · Occipital seizures and epilepsies in children: colloquium of the Pierfranco e Luisa Mariani Foundation. Author: edited by F. Andermann ... [et al.]; Year: 1993; London: John Libbey, c1993. ISBN: 0861963857 · On epilepsy and epileptiform seizures. Their causes, pathology and treatment. Author: Sieveking, Edward Henry, Sir, 1816-1904; Year: 1861; London, Churchill, 1861. 184 Seizures and Epilepsy · Partial seizures and interictal disorders: the neuropsychiatric elements. Author: David P. Moore; Year: 1997; Boston: Butterworth-Heinemann, c1997. ISBN: 0750699310 http://www.amazon.com/exec/obidos/ASIN/0750699310/icongroupin terna · Reflex epilepsies and reflex seizures. Author: editors, Benjamin G. Zifkin ... [et. al.]; Year: 1998; Philadelphia: Lippincott-Raven, c1998. ISBN: 0397516274 http://www.amazon.com/exec/obidos/ASIN/0397516274/icongroupin terna · Reflex seizures and reflex epilepsies. Author: International Symposium on Reflex Seizures and Reflex Epilepsies, Genève, juin, 1988; Year: 1989; Genève: Editions Médecine & hygiène, 1989. ISBN: 2880490448 · Seizure recognition and treatment. Author: Richard Lechtenberg; Year: 1990; New York: Churchill Livingstone, 1990. ISBN: 0443087016 http://www.amazon.com/exec/obidos/ASIN/0443087016/icongroupin terna · Seizures and convulsions in infants, children, and adolescents: practical informative guide for parents, teachers, and paramedical personnel. Author: Leonardo Garcia-Mendez; Year: 1994; Columbia: Lemar Publishers, c1994. ISBN: 096392690X http://www.amazon.com/exec/obidos/ASIN/096392690X/icongroupi nterna · Seizures and epilepsy in childhood: a guide. Author: John M. Freeman, Eileen P.G. Vining, Diana J. Pillas; Year: 2002; Baltimore, Md.: Johns Hopkins University Press, 2002. ISBN: 080187050X http://www.amazon.com/exec/obidos/ASIN/080187050X/icongroupi nterna · Seizures and epilepsy in the elderly. Author: [edited by] A. James Rowan, R. Eugene Ramsay; Year: 1997; Boston: Butterworth-Heinemann, c1997. ISBN: 0750696222 http://www.amazon.com/exec/obidos/ASIN/0750696222/icongroupin terna · Seizures and epilepsy. Author: Jerome Engel, Jr; Year: 1989; Philadelphia: F.A. Davis Co., c1989. ISBN: 0803632010 http://www.amazon.com/exec/obidos/ASIN/0803632010/icongroupin terna · Seizures and other paroxysmal disorders in infants and children [by] Manuel R. Gomez [and] Donald W. Klass. Author: Gomez, Manuel R., 1928-; Year: 1972; Chicago, Year Book Medical Publishers, 1972. Books 185 · Seizures of childhood: a population-based and clinic-based study. Author: Takayuki Tsuboi; Year: 1986; Copenhagen: Munksgaard, [1986]. ISBN: 8716063635 · Seizures, epilepsy, and your child; a handbook for parents, teachers, and epileptics of all ages. Author: Lagos, Jorge C., 1933-; Year: 1974; New York, Harper & Row [c1974]. ISBN: 0060125047 http://www.amazon.com/exec/obidos/ASIN/0060125047/icongroupin terna Chapters on Seizures and Epilepsy Frequently, seizures and epilepsy will be discussed within a book, perhaps within a specific chapter. In order to find chapters that are specifically dealing with seizures and epilepsy, an excellent source of abstracts is the Combined Health Information Database. You will need to limit your search to book chapters and seizures and epilepsy using the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find book chapters, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Book Chapter.” By making these selections and typing in “seizures and epilepsy” (or synonyms) into the “For these words:” box, you will only receive results on chapters in books. The following is a typical result when searching for book chapters on seizures and epilepsy: · Mental Health of Adults with Epilepsy Source: in Epilepsy: Patient and Family Guide. Second Edition. Devinsky, O. Philadelphia, PA, F.A. Davis Company, pp. 324-331, 2002. Contact: F.A. Davis Company, 1915 Arch Street, Philadelphia, PA 19103. Web site: http://www.fadavis.com Summary: Mental Health of Adults With Epilepsy, a chapter in Epilepsy: Patient and Family Guide, discusses the mental and behavioral aspects of epilepsy in adult patients. Behavioral disturbances in people with epilepsy may be unrelated to epilepsy, or related to the person's emotional reactions to having epilepsy, the effect of medications, or epilepsy. The chapter discusses (1) personality and epilepsy, (2) depression in epilepsy and in the general population, (3) causes of depression in people with epilepsy, (4) treating depression, (5) anxiety disorders in patients with epilepsy and in the general population, (6) 186 Seizures and Epilepsy irritability, (7) psychoses in patients with epilepsy, and (8) unusual and bizarre phenomena associated with seizures. · Epilepsy in the Elderly Source: in Epilepsy: Patient and Family Guide. Second Edition. Devinsky, O. Philadelphia, PA, F.A. Davis Company, pp. 332-335, 2002. Contact: F.A. Davis Company, 1915 Arch Street, Philadelphia, PA 19103. Web site: http://www.fadavis.com Summary: Epilepsy in the Elderly, a chapter in Epilepsy: Patient and Family Guide, discusses issues associated with managing epilepsy in elderly people. Epilepsy can begin at any age and may continue to old age, and the rate of newly diagnosed epilepsy is higher in the elderly than in middle-age adults. The chapter discusses (1) general health problems faced by elderly people; (2) seizure diagnosis and classification in elderly patients with epilepsy; (3) special concerns about the effects of seizures in older people; and (4) the effects of antiepileptic drugs (AED's) and other medications in elderly patients with epilepsy. The section on the effects of AED's and other medications includes a case report which illustrates several important concerns in providing AED therapy for elderly patients with epilepsy, including increased sensitivity to medications, increased risk of adverse side effects, and increased risk of interactions with other drugs. · Neonatal Seizures Source: in Merritt's Neurology. Tenth Edition. Rowland, L.P.; ed. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 834-836, 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106. Web site: http://www.LWW.com Summary: Neonatal Seizures, a chapter in Merritt's Neurology, reviews the classification, etiology, evaluation, treatment, and prognosis of neonatal seizures. The clinical symptoms and electroencephalographic (EEG) features of neonatal seizures differ significantly from those of older children and adults. Focal clonic, focal tonic, and some myoclonic seizures are accompanied by characteristic EEG discharges. Generalized tonic seizures, most motor automatisms, and some myoclonic seizures have inconsistent EEG changes. Hypoxic-ischemic encephalopathy is the main cause of neonatal seizures. Infants at highest risk for developing seizures secondary to asphyxia have low Apgar scores, require intubation in the delivery room, and have severe acidemia. Other causes of neonatal Books 187 seizures include intracranial hemorrhage, infection, metabolic abnormalities, and developmental defects. Family history and details of the infant's gestation and delivery are important components of the neurologic examinations of infants with seizures. Seizures should be treated with antiepileptic drugs (AED's), but AED's are likely to be ineffective in seizures that are not associated with an EEG discharge. Phenobarbital is the most frequently used AED in newborns. Phenytoin is the alternative if phenobarbital fails. The long-term prognosis of neonatal seizures is related to the underlying cause of the seizures. · Surgery for Neocortical Temporal and Frontal Epilepsy Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 595-603, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Surgery for Neocortical Temporal and Frontal Epilepsy, a chapter in Neocortical Epilepsies, is a review of the evaluation, surgical strategy, and results of a series of patients with neocortical frontal lobe epilepsy (NFLE) and temporal lobe epilepsy with neocortical origin (NTLE). Researchers reviewed 79 NFLE cases and 51 NTLE cases. Each patient had intractable epilepsy for at least 1 year, adequate trials of at least two first-line antiepileptic drugs (AED's), and continuous noninvasive video scalp electroencephalography (EEG) monitoring. The indication for invasive recordings in these patients was based on conflicting or noncongruent magnetic resonance imaging, EEG, and seizure semiology findings. In all patients, interictal activity and a minimum of two seizures were recorded before the indication for surgery was established. Lesionectomies in most cases were accompanied by corticectomy of the surrounding cortex if the lesion was not close to a functionally important area. In the NFLE cases, simple or complex partial seizures were most frequent, and in 45 cases, they were associated with grand mal seizures. In the NTLE cases, complex partial seizures were most frequent, followed by partial seizures with grand mal activity. In the NFLE group, mean age at operation was 27.0 years, ranging from 2 to 60 years. In the NTLE group, mean age at operation was 26.5 years, ranging from 6 to 60 years. Average age at seizure onset was 12.8 years. Duration of the seizure disorder was 14.0 years. Almost twice as many males were affected. Worthwhile improvement occurred in 82 percent of cases overall, 90 percent of NTLE cases, and 76 percent of NFLE cases. Outcome was better in neoplastic cases compared with nonneoplastic 188 Seizures and Epilepsy cases. There was no mortality associated with surgery, and all complications resolved without permanent morbidity. The authors conclude that many patients with NFLE and NTLE can achieve freedom from seizures through surgery. · Interplay Between Neocortical and Limbic Temporal Lobe Epilepsy Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 615-619, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Interplay Between Neocortical and Limbic Temporal Lobe Epilepsy, a chapter in Neocortical Epilepsies, is an examination of the relation between neocortical and limbic forms of temporal lobe epilepsy (TLE). Neocortical is defined as evidence of lateral temporal involvement in the epileptogenic zone. Limbic is defined as medial temporal involvement. Pathologic findings in TLE frequently involve both. The author identified the sites of seizure onset in 70 patients with TLE between 1991 and 1998 at the University of Washington Epilepsy Center. Additional electrophysiologic evaluation of the hippocampus was available for 42 of these patients. Of the 70 patients, 22 had various types of lesions, 20 had previous temporal resections with persisting seizures, and 28 had no previous lesions or resections. Of the patients with lesions, the location of the lesion did not indicate the site of the seizure onset; lesions that involved lateral temporal neocortex often had seizure onsets in mesial structures. Of the 28 patients with no previous lesions, 19 had hippocampal interictal spikes. In all but one of the patients with previous temporal resections, there was evidence of mesial temporal involvement in the epileptogenic zone. Surgery outcome was less favorable in patients with dual pathophysiology. The author concludes that some patients with TLE have dual pathophysiology, which appears to be an unfavorable prognostic factor for the outcome of resective surgery, even when resection includes all sites of identified epileptogenic abnormalities and all lesions. · Multiple Subpial Transection in Neocortical Epilepsy: Part I Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 621-624, September 2000. Books 189 Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Multiple Subpial Transection in Neocortical Epilepsy: Part I, a chapter in Neocortical Epilepsies, describes multiple subpial transection (MST), a surgical technique designed for use in patients in whom the epileptic zone resides or encroaches on eloquent neocortex (primary sensory, motor, and language cortex). MST is designed to transect horizontal nerve fibers while preserving the intrinsic columnar organization of the brain. The authors have performed MST in more than 100 patients, usually in combination with a cortical resection. Electrocorticography is critical in demarcating the area to be transected in order to preserve the eloquent cortex. The acute effects of MST show mild cortical edema, subarachnoid blood, and lines of intracortical bleeding at the transection site. Of the 100 cases of MST at the authors' facility with at least 2 years of followup, two-thirds had a combination of resection and transection. Of the 32 patients in whom the authors performed MST without resection, half were children with epileptic aphasia. At followup, 79 percent of these patients were seizure free, and 21 percent suffered recurrent seizures. Of 16 patients who underwent MST alone for the treatment of intractable partial epilepsy, 75 percent had a worthwhile outcome. The authors conclude that MST allows surgical treatment of epilepsy in areas previously untouchable because of risk of loss of function of eloquent cortex. · Multiple Subpial Transections in Neocortical Epilepsy: Part II Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 635-642, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Multiple Subpial Transections in Neocortical Epilepsy: Part II, a chapter in Neocortical Epilepsies, discusses the rationale and indications for multiple subpial transection (MST) and defines the syndrome of central neocortical epilepsy (CNE). Partial seizures originate from a region of cortex considered to be the focus. Partial seizures are associated with periods of increased synchrony between cortical neurons as well as between cortex and subcortical nuclei. The rationale for MST is that, if this intracortical synchronization can be disrupted, the epileptogenic potential of the focus can be reduced or eliminated. 190 Seizures and Epilepsy Because neocortex is organized in linear functional columnar units, MST cuts at right angles to the pial surface should spare cortex-subcortex input-output interactions. MST is indicated for (1) epileptogenic foci in cortex serving indispensable function, (2) bilateral seizure foci for cases otherwise considered nonsurgical, and (3) surgical treatment for LandauKleffner syndrome. The author defines CNE, a syndrome in which patients have normal-appearing magnetic resonance imaging scans despite having an epileptogenic focus in suprasylvian neocortex. The author has successfully treated several patients with CNE with MST. · Parietal Lobe Epilepsy Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 189-199, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Parietal Lobe Epilepsy, a chapter in Neocortical Epilepsies, focuses on parietal lobe epilepsy, which has proven to be difficult to define. The chapter looks at (1) epidemiology (incidence, age at onset, and etiology), (2) clinical features of parietal lobe epilepsy (clinical characteristics of seizures originating from different parietal regions, spread pathways of parietal lobe seizures, electroencephalographic findings, and neuropsychologic examination), and (3) three illustrative case reports. Health professionals should suspect parietal lobe seizure origin when there are symptoms such as lateralized paresthesias or pain prominently and early in partial seizures. Most people with parietal lobe seizures have no symptoms or signs that suggest the parietal lobe. If they do not have detectable epileptogenic lesions, patients without clinical seizure characteristics suggesting parietal lobe origin can present with misleading findings. This can result in erroneous localization and ineffective surgical intervention. Even when health professionals suspect parietal lobe seizure origin, without a structural lesion, it is difficult to document it with invasive monitoring. The parietal lobes are large, diffuse structures, and there is a high potential for sampling error. Spread patterns are unpredictable and can lead to false localization. Due to the rarity of the condition, the lack of correct recognition, and the difficulty of localization, there are no well-document studies of patients with nonlesional parietal lobe epilepsy who have been cured by surgery in the modern literature. Books 191 · Semiology of Neocortical Temporal Lobe Epilepsy Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 201-214, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Semiology of Neocortical Temporal Lobe Epilepsy, a chapter in Neocortical Epilepsies, presents information on neocortical temporal lobe epilepsy (NTLE) and explains that its semiology is controversial. Temporal lobe (TL) seizures and epileptic syndromes are divided into three areas: (1) The syndrome of mesiotemporal lobe epilepsy (MTLE), which is widely accepted, often drug resistant, and surgically remediable; (2) so-called cryptogenic TL epilepsy, for which it is difficult to estimate incidence; and (3) lateral NTLE, which is much rarer than seizures originating in the mesial TL structures. The author compares the signs and symptoms of seizures originating in the neocortical TL cortex. The author concludes that although the repertoire of the ictal signs and symptoms of NTLE and MTLE are similar because of the spread of ictal discharges within and outside of the TL, researchers must carefully analyze early symptoms, the order of symptom appearance, and the preferential spread patterns in order to gain ideas for distinguishing seizures of mesial versus lateral-neocortical TL onset. Often, definitive proof may require the intracranial recording from neocortical and mesial TL structures. · Frontal Lobe Epilepsy Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 215-242, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Frontal Lobe Epilepsy, a chapter in Neocortical Epilepsies, focuses on (1) general features of frontal lobe seizures; (2) specific types of frontal lobe seizures (supplementary motor area seizures, focal motor clonic seizures, frontal lobe seizures resembling temporal lobe seizures, frontal lobe absence, frontal opercular seizures, and anterior cingulate gyrus seizures); (3) diagnosis of frontal lobe epilepsy (clinical seizure characteristics, scalp electroencephalography, imaging studies, and 192 Seizures and Epilepsy intracranial electrode investigations); and (4) eight illustrative case reports that demonstrate both the different types of frontal lobe seizures and the types of presurgical evaluations undertaken that lead to successful surgery. The authors note that although frontal lobe epilepsy is common, its clinical presentation can differ significantly. Although no one seizure type stands out as specifically diagnostic or of frontal lobe seizure origin, some are suggestive. They conclude that (1) frontal lobe seizures with agitated, aggressive, complex motor behavior often accompanied by vocalization can be identified solely by the clinical presentation; (2) brief, explosive seizures consisting of varied patterns of asymmetric tonic posturing, often with preservation of consciousness, are highly suggestive of seizure origin in the supplementary motor area; (3) seizures starting in the frontal lobes, especially the orbital frontal region, can spread to the temporal lobes; (4) focal clonic motor seizures always imply involvement of the primary motor gyrus; (5) seizures resembling absence seizures and absence status can be seen in people with frontal lobe seizure origin; (6) frontal opercular seizures consisting of prominent face and jaw motor activity, deglutition, profuse salivation, and Broca's aphasia are probably a recognizable form of frontal lobe seizures; and (7) anterior cingulate gyrus seizures cannot be distinguished from more generic frontal lobe seizures with complex behaviors that can originate in several frontal lobe regions. Surgery for frontal lobe seizures may be less successful than it is for temporal lobe epilepsy, although there has been improvement in recent years. · Intracranial EEG Investigation in Neocortical Epilepsy Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 253-274, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Intracranial EEG Investigation in Neocortical Epilepsy, a chapter in Neocortical Epilepsies, begins by discussing problems and pitfalls in the electroencephalographic (EEG) localization of neocortical epilepsy, focusing on (1) undersampling and nearsightedness of recording electrodes; (2) large epileptogenic zones restricted to neocortical structures, involving neocortical as well as deep sulcal or mesial structures, and bilobar or multilobar distribution; (3) rapid seizure propagation; (4) seizure generator located in a clinically silent area; and (5) low incidence of specific neuroimaging abnormalities. The next section focuses on coregistration with intracerebral and epidural Books 193 electrodes in neocortical epilepsy (the Montreal Neurological Institute approach), describing research materials and methods. Participants were 23 people with neocortical epilepsy investigated with intracranial electrodes following an unsuccessful attempt to localize the ictal generator by serial 24-hour extracranial EEG-video monitoring sessions. All participants underwent computed tomography (CT) or magnetic resonance imaging (MRI) examination and neuropsychological testing. Intracranial EEG investigation was done in an attempt to localize the epileptogenic zone in the absence of CT or MRI abnormalities. Results indicated that the success of localizing neocortical seizures depended upon the anatomic location of their onset. Electrographic seizure onset in the beta or gamma frequency band strongly correlated with an ictal generator located in the neocortical mantle of the frontal lobe. · Invasive EEG in Neocortical Epilepsy: Seizure Onset Source: in Neocortical Epilepsies. Williamson, P.D.; Siegel, A.M.; Roberts, D.W.; Thadani, V.M.; Gazzaniga, M.S.; eds. Philadelphia, PA, Lippincott Williams and Wilkins, pp. 275-285, September 2000. Contact: Lippincott Williams and Wilkins, 530 Walnut Street, Philadelphia, PA 19106-3621. (215) 521-8300. FAX: (215) 521-8902. Web site: www.wwilkins.com/home/index.html Summary: Invasive EEG in Neocortical Epilepsy: Seizure Onset, a chapter in Neocortical Epilepsies, describes a study that examined 53 people with refractory neocortical epilepsy at the Yale Epilepsy Center. The patients were studied with implanted intracranial electrodes, had their seizure onset recorded and stored for review, and had subsequent resective surgery with pathological analysis and at least 1 year of followup. Researchers used outcome and pathology to judge the success or failure of localization by the detected signals, analyzing characteristics of seizure onset in the neocortex. Data analysis indicated that slow onset alone did not predict poor outcome, nor did regional seizure onset. There was no significant relationship between distribution or frequency of onset and outcome or pathology. However, frequency and distribution of seizure onset in neocortex recorded with implanted electrodes were characteristic of the anatomic region itself. Researchers found two particular morphologies of seizure onset (low voltage fast activity and rhythmic sinusoidal waves) that predicted good surgical outcome, although they were not associated with specific substrates. A preictal periodic spike discharge, previously characterized as typical of mesial temporal sclerosis, was seen in 14 people with neocortical seizures. The researchers hypothesize that the frequency, lobe, and distribution of seizure onset recorded by implanted electrodes in medically uncontrolled neocortical 194 Seizures and Epilepsy epilepsy significantly correlate with each other but not with outcome or pathology, which suggests that such features are determined by the anatomic location and its networks or connections, independent of the epilepsy etiology, cellular alterations, or mechanism of epileptogenesis. However, the morphology or waveform of seizure onset, the underlying pathology, and surgical outcome significantly relate with each other. This suggests that waveform is a characteristic of specific pathophysiology and may be used in predicting the underlying substrate. General Home References In addition to references for seizures and epilepsy, you may want a general home medical guide that spans all aspects of home healthcare. The following list is a recent sample of such guides (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Adams & Victor’s Principles Of Neurology by Maurice Victor, et al; Hardcover - 1692 pages; 7th edition (December 19, 2000), McGraw-Hill Professional Publishing; ISBN: 0070674973; http://www.amazon.com/exec/obidos/ASIN/0070674973/icongroupinterna · Clinical Neuroanatomy Made Ridiculously Simple (MedMaster Series, 2000 Edition) by Stephen Goldberg; Paperback: 97 pages; 2nd edition (February 15, 2000), Medmaster; ISBN: 0940780461; http://www.amazon.com/exec/obidos/ASIN/0940780461/icongroupinterna · It’s Not a Tumor!: The Patient’s Guide to Common Neurological Problems by Robert Wiedemeyer; Paperback: (January 1996), Boxweed Pub; ISBN: 0964740796; http://www.amazon.com/exec/obidos/ASIN/0964740796/icongroupinterna · Neurology for the Non-Neurologist by William J. Weiner (Editor), Christopher G. Goetz (Editor); Paperback (May 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0781717078; http://www.amazon.com/exec/obidos/ASIN/0781717078/icongroupinterna Vocabulary Builder Comorbidity: The presence of co-existing or additional diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study. Comorbidity may affect the ability of affected individuals to function and also their survival; it may be used as a prognostic Books 195 indicator for length of hospital stay, cost factors, and outcome or survival. [NIH] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Electroshock: Induction of a stress reaction in experimental subjects by means of an electrical shock; applies to either convulsive or non-convulsive states. [NIH] Epidural: Situated upon or outside the dura mater. [EU] Gestation: The period of development of the young in viviparous animals, from the time of fertilization of the ovum until birth. [EU] Intubation: The insertion of a tube into a body canal or hollow organ, as into the trachea or stomach. [EU] Microdialysis: A technique for measuring extracellular concentrations of substances in tissues, usually in vivo, by means of a small probe equipped with a semipermeable membrane. Substances may also be introduced into the extracellular space through the membrane. [NIH] Neocortex: The largest portion of the cerebral cortex. It is composed of NEURONS arranged in six layers. [NIH] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Orbital: Pertaining to the orbit (= the bony cavity that contains the eyeball). [EU] Postoperative: Occurring after a surgical operation. [EU] Postural: Pertaining to posture or position. [EU] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Salivation: 1. The secretion of saliva. 2. Ptyalism (= excessive flow of saliva). [EU] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Subarachnoid: Situated or occurring between the arachnoid and the pia 196 Seizures and Epilepsy mater. [EU] Substrate: A substance upon which an enzyme acts. [EU] Vegetative: 1. Concerned with growth and with nutrition. 2. Functioning involuntarily or unconsciously, as the vegetative nervous system. 3. Resting; denoting the portion of a cell cycle during which the cell is not involved in replication. 4. Of, pertaining to, or characteristic of plants. [EU] Multimedia 197 CHAPTER 7. MULTIMEDIA ON SEIZURES AND EPILEPSY Overview Information on seizures and epilepsy can come in a variety of formats. Among multimedia sources, video productions, slides, audiotapes, and computer databases are often available. In this chapter, we show you how to keep current on multimedia sources of information on seizures and epilepsy. We start with sources that have been summarized by federal agencies, and then show you how to find bibliographic information catalogued by the National Library of Medicine. If you see an interesting item, visit your local medical library to check on the availability of the title. Video Recordings Most diseases do not have a video dedicated to them. If they do, they are often rather technical in nature. An excellent source of multimedia information on seizures and epilepsy is the Combined Health Information Database. You will need to limit your search to “video recording” and “seizures and epilepsy” using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find video productions, use the drop boxes at the bottom of the search page where “You may refine your search by.” Select the dates and language you prefer, and the format option “Videorecording (videotape, videocassette, etc.).” By making these selections and typing “seizures and epilepsy” (or synonyms) into the “For these words:” box, you will only receive results on video productions. The following is a typical result when searching for video recordings on seizures and epilepsy: 198 Seizures and Epilepsy · Seizures in Later Life Source: Landover, MD, Epilepsy Foundation of America, 14:40-minute VHS videotape, 1994. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) 332-1000; (301) 459-3700. Summary: Seizures in Later Life, a videotape, is for older persons with epilepsy, their families, and others interested in the impact of epilepsy on senior citizens. Epilepsy and seizures are as likely to begin occurring in a person's 60's, 70's, or 80's as they are in the first 10 years of life; there are about 300,000 older Americans with epilepsy today. People can develop seizures in later life due to head injuries, brain tumors, stroke, or for no apparent reason. The videotape features a neuropsychologist and a clinical pharmacist who help educate people about the nature of epilepsy in later life including causes, treatment, and the appropriate response to seizures. Four older persons share what they have learned about coping with lifestyle changes, safety issues, and overcoming negative feelings about epilepsy. Persons with epilepsy must know that medicines can produce side effects and these should be reported to their doctors. Complex partial seizures are the most common in older persons. Episodes can mimic Alzheimer's, including apparent confusion, loss of time, and memory loss. Safety precautions include cooking with a microwave instead of on a stove, and wearing rubber gloves while washing dishes. One older woman explains that she first hid from the world, but her family helped her learn to go out and volunteer in the community. Another man is feeling too protected by his wife because he cannot drive or do some things for himself any longer. He wears a medical I.D. and works on his memory loss with memory aids. The viewer is told basic safety steps to take when seeing a person having a seizure, such as turn the person on his/her side, do not restrain them, put nothing in their mouth, and put a soft item under their head. · Driving and Epilepsy: Information for People with Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 13-minute VHS videotape, 1993. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) 332-1000; (301) 459-3700. Summary: Representatives of the Epilepsy Foundation of America use a 13-minute video to provide information in order to help individuals with epilepsy obtain and maintain their driving status. Individuals with epilepsy relate their experiences and offer support and practical alternatives to others with epilepsy who cannot drive because their Multimedia 199 seizures are not controlled. Issues discussed include state regulations about driving and epilepsy, the appeals process if a license is denied, safety, physician and personal reporting responsibilities, the role of the physician in the licensing process, and personal feelings about driving. Individuals with epilepsy discuss their attitudes and experiences with the licensing process, loss of driving privileges, and inability to drive. An attorney and physician discuss state requirements, physician responsibility, and information available from the Epilepsy Foundation of America. Individuals with epilepsy are encouraged to report seizures to their physician so that medication adjustments can be made to control seizures. When seizures cannot be controlled transportation alternatives include public transportation, walking, riding with friends, and riding a bicycle. · School Planning for Children with Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 14-minute VHS videotape, 1992. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. Summary: School Planning for Children With Seizure Disorders, a 14minute video produced by the Epilepsy Foundation of America, encourages parents whose children experience seizure disorders to know their rights regarding special educational services for their children. The most common problems these children exhibit are in the areas of attention, concentration, and memory. Under Public Law 94.142 and the Individuals with Disabilities Education Act, children with special educational needs are entitled to have an individualized educational program (IEP) written for them. Parents can initiate the IEP, which details the learning and social objectives for the child, the teaching plan/timetable, and any related services that are needed. The IEP should be reviewed each year. Parents have the right to (1) an evaluation of their child's disability, (2) be present at meetings, (3) an explanation of records and approval of who sees the records, (4) a written copy of the IEP, (5) written notification if the school wants to change the IEP, and (6) appeal through due process if they disagree with the program. Children's rights include the right to free and appropriate education in the least restrictive environment and to a reevaluation of skills and needs at least every 3 years. The least restrictive environment is usually the regular classroom (with special assistance if necessary) or as much time in a regular classroom as possible. The child's teacher and a school administrator must attend the IEP meeting; other key personnel who work with the child should attend also. Parents have the right to bring a guest or 200 Seizures and Epilepsy advocate with them. School planning should be a team effort with parents being an equal partner with school personnel. Parents and teachers need to establish how seizures will be managed, how medicine will be administered, and how epilepsy will be explained to the other children. During the IEP, children's test results are presented and explained; they form the basis for determining whether the school needs to provide related services. Related services include (1) classroom aides, (2) speech therapy, (3) occupational therapy, (4) physical therapy, (5) transportation, and (6) counseling if emotional needs interfere with school work. Parents and teachers are encouraged to work together to reach consensus on the most appropriate learning environment for the child with epilepsy. · Seizure Disorders and the School I (Elementary) Source: Landover, MD, Epilepsy Foundation of America, 14-minute VHS videotape, 1991. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. (800) 332-1000. Summary: Seizure Disorders and the School I (Elementary) describes the types of seizures and what to do when a seizure takes place, and discusses the role of the teacher who has a child with epilepsy in the classroom. Teachers can (1) recognize seizures when they occur, especially those with subtle symptoms; (2) perform appropriate first aid for seizures; (3) help the child achieve his or her full academic potential; and (4) promote the child's self-esteem. The seizure types most commonly seen in school are absence, which the teacher may be the first to notice; simple or complex partial; and generalized tonic-clonic. Absence seizures are brief and frequent, and may be mistaken for daydreaming. Teachers encountering this type of seizure in the classroom should report their observations to the child's parents if the symptoms are seen for the first time. First aid is not generally required for absence seizures, but the teacher may need to repeat information the student has missed. During complex partial seizures, the teacher should (1) remain calm, (2) protect the child from harm, (3) reassure the child, and (4) reorient the child after the seizure. Generalized tonic-clonic seizures are not life-threatening. During this type of seizure, the teacher should (1) turn the child on his or her side, (2) loosen the child's clothing, (3) protect his or her head, and (4) not restrain the child or put anything into his or her mouth. Teachers should be aware of the possible psychological and social effects of seizure disorders. The child with a seizure disorder does not want to be treated differently from other children. The teacher should encourage acceptance of the child with epilepsy and model a caring Multimedia 201 attitude. Many children with seizure disorders do well in class and their seizures are controlled by medication. However, the teacher should be aware that seizure disorders and medication may affect the child's memory and other learning skills. The teacher can help the child with epilepsy grow, mature, and learn. · How to Recognize and Classify Seizures and Epilepsy Source: Landover, MD, Epilepsy Foundation of America, 25:28-minute VHS videotape, 1991. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. Summary: How to Recognize and Classify Seizures and Epilepsy, a 25minute video produced by the Epilepsy Foundation of America, is a resource for physicians and other health professionals which details the different types of seizures and depicts their effects using taped segments of persons experiencing epileptic seizures. Epilepsy can be diagnosed by obtaining a thorough medical history; talking with the patient, family, and other observers; electroencephalography (EEG); and magnetic resonance imaging. In symptomatic epilepsy, the epilepsy arises from an underlying condition; blood and cerebral spinal fluid studies may provide evidence of infection or other inflammatory processes that can be treated with antibiotics or other anti-inflammatory drugs. The International Classification of Epileptic Seizures divides them into two major categories: (1) Partial, which is characterized by focal onset that may or may not affect consciousness and may be simple, i.e., motor, somatosensory, psychic, or autonomic, or other subjective symptoms or complex and associated with impaired consciousness and (2) Generalized, which involve both brain hemispheres, cause a loss of consciousness, and are characterized as absence, myoclonic, clonic, tonic, tonic-clonic, and atonic. Among persons with epilepsy, there is a hierarchy of diagnosis that consists of an etiologic diagnosis (found for 25 percent of persons with epilepsy) and a descriptive diagnosis, which includes characterization of seizure type and, in most descriptive diagnoses, determination of an epileptic syndrome. Features of an epileptic syndrome include (1) seizure type, (2) associated clinical features, (3) natural history, (4) EEG, (5) precipitating factors, (6) inheritance pattern, and (7) response to antiepileptic drugs. The clinician should approach the diagnosis by considering the patient's entire clinical picture over time. Followup evaluation is essential to ensure the patient's seizures are accurately defined. 202 Seizures and Epilepsy · Seizure Disorders and the School II (Secondary) Source: Landover, MD, Epilepsy Foundation of America, 14-minute VHS videotape, 1991. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. Summary: Seizure Disorders and the School II (Secondary) is a 14-minute videotape that aims to educate secondary school teachers about epilepsy. Epilepsy appears in many different forms, and most teachers will have a student with a seizure disorder in class at some point in their teaching career. It is important that teachers be able to recognize seizures, provide first aid to students having seizures, and promote the education and selfesteem of students who experience seizures. Seizures are a disruption of neuronal discharges in the brain and they come in many different forms. The most common types of seizures in schools include absence seizures, complex partial seizures, and generalized tonic-clonic seizures. The videotape explains what each of these seizures is and discusses how to recognize them in students. The most important things for a teacher to do when a student is having a seizure include (1) remaining calm, (2) keeping the student safe, (3) reassuring the student, and (4) reorienting the student when the seizure is over. If a student has a generalized seizure, the teacher should know to (1) lay the student on the floor and turn the student on his or her side, (2) loosen the student's clothing, (3) protect the student's head, (4) not restrain the student, (5) put nothing in the mouth of the student, and (6) call an ambulance only if the seizure lasts longer than 5 minutes or if the student has no prior history of seizures. First seizures should be reported to the student's parents and the school nurse. Teachers should realize that some students will recover from their seizures quickly and can stay in class, while others may need to be excused for a recuperation period. It is important for teachers to address the psychological and social issues confronted by students with epilepsy. Teachers should immediately explain to the rest of the class what seizures are, that they are not contagious or a mental illness, and should reassure the student who has seizures. Unless restrictions are imposed by the student's physician, students who experience seizures should not be excluded from classroom or outdoor activities or overprotected because of their condition. The teacher should keep track of the student's performance, and if academic or social problems appear, refer them for testing and treatment. Multimedia 203 · Understanding Complex Partial Seizures Source: Landover, MD, Epilepsy Foundation of America, Family Video Library, 14-minute VHS videotape, 1991. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. Summary: Understanding Complex Partial Seizures is a 14-minute videotape about the nature of complex partial epileptic seizures. Complex partial seizures are often different from the typical tonic-clonic generalized seizures that people often associate with epilepsy. Because of this, they may be difficult to recognize or diagnose as seizures. Complex partial seizures are caused by brief electrical disturbances in the brain and are characterized by a loss of awareness, sometimes accompanied by specific or repeated motor activities or verbal activity. Studies of individuals with complex partial seizures have led to an increased awareness and understanding of the condition, but complex partial seizures are so varied they can be misdiagnosed. Each individual tends to have his or her own characteristic pattern of activity during seizures. Sometimes this is easily recognized as a seizure, but often it is not. Complex partial seizures are sometimes misinterpreted as behavior problems or substance abuse. The most important things to do when someone is experiencing a complex partial seizure include (1) remaining calm, (2) keeping the person out of harm, and (3) waiting for the seizure to pass and then reorienting the individual. Seizures will pass in a few minutes. The videotape presents testimony from persons with complex partial epileptic seizures concerning how the seizures affect their lives and how they cope. It is critical that those who experience complex partial seizures do not let the condition negatively affect their lives and self-esteem, but rather remain positive and assured of their abilities. · Epilepsy in the Teen Years Source: Landover, MD, Epilepsy Foundation of America, Family Video Library, 12-minute VHS videotape, 1990. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) 332-1000; (301) 459-3700. Summary: Epilepsy in the Teen Years, a videotape, is aimed at helping teenagers with epilepsy learn about their disorder and how to cope with it. Four teens discuss what living with epilepsy is like for them. Adolescence is difficult enough for most teenagers, and learning to live with a chronic illness that often sets one apart can be hard. Some teens are not compliant with medication at first, believing they do not really need it or rejecting that they have epilepsy; this complicates their lives 204 Seizures and Epilepsy further. Peers need to be educated about what to expect if a person has a seizure and how to handle an episode, so that they become less afraid to include the teen with epilepsy on social occasions. Driving can be a problem, so teens often learn to get rides from friends and contribute gas money. Students with epilepsy need support, understanding, and people to react to them as normal people. A social worker who leads a teen support group on epilepsy speaks about the effectiveness of such groups. Teens in support groups can discuss coping problems, depression, skills, medication side effects, and other concerns. Adolescents with epilepsy must learn that alcohol and other drugs, especially cocaine, can trigger seizures so it is best to avoid them. Learning what other conditions precipitate seizures is also helpful; teens must learn to get adequate rest, adhere to a good diet, and take medications on time. This gives them more responsibility for their own care and helps them learn to grow up dealing with epilepsy. Parents should not be overprotective. The teens in the tape say they have learned that epilepsy is not who they are, just part of what they have to handle in life, and that there is much more to life than having a seizure disorder. · And Life Goes On: Severe Seizures of Early Childhood Source: Landover, MD, Epilepsy Foundation of America, Family Video Library, 16-minute VHS videotape, 1990. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) 332-1000; (301) 459-3700. Summary: And Life Goes On: Severe Seizures of Early Childhood is a videotape about serious seizure disorders that occur in young children. Such a disorder can be very shocking and painful to parents, but despite this it is important to learn to cope and to help their child live a full life. One severe seizure disorder seen in children is Lenox-Gasteau, which is characterized by both tonic and myoclonic seizures. Children with the disorder can have hundreds of seizures a day. In some children, treatment causes the seizures to go away, while in others, the disorder comes back months or years later. Counseling for parents of children with Lenox-Gasteau often helps because of the frequency and disruptive nature of the seizures. Counseling can also help parents become better educated about the condition, which is vital to helping them understand all aspects of epilepsy and give their child the best care possible. Because a condition like Lenox-Gasteau requires such time-intensive care, parents must realize that often they cannot provide all the care that their child needs. Residential treatment programs can help both the parents and the child better cope with the condition. Traditionally, treatment of LenoxGasteau included only special medication or diet options. More recently, Multimedia 205 however, physicians can perform a new procedure that severs some of the nerve fibers between the two halves of the brain and stops the spread of discharges from one side of the brain to the other. · Question of Epilepsy Source: Landover, MD, Epilepsy Foundation of America, 1 30-minute VHS videotape, 1989. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. (800) 332-4050. Summary: Question of Epilepsy is a 30-minute VHS videotape presenting seven dramatizations of questions about epilepsy. In the first scene, an extended family is gathered for a family event and casually discusses the epilepsy of Paul, an adolescent family member. They mention its psychosocial impact on others and how they and he have adjusted to coping with epilepsy. The second dramatization deals with the causes of epilepsy. After a children's bicycle race, two young boys go riding without their helmets. The father of one boy calls him back and reminds him to wear a helmet whenever he rides a bicycle. The father tells the other boy's mother about a child who rode a bike without a helmet and received a head injury that caused epilepsy. The father mentions that anyone can develop epilepsy at any age; other causes of epilepsy include rare diseases, birth defects, and alcoholism. In the third scene, a man and a woman are editing a videotape showing elementary school students enacting what to do when a person has a seizure. The editors discuss what to do and not to do when someone has a seizure, such as never putting something in the person's mouth. After the editors edit the tape, they show it in its entirety. The fourth dramatization asks the question, Are all seizures the same? Coworkers in a floral shop discuss types of seizures, including whole brain involvement and partial seizures. In the fifth scene, a retirement group discusses anticonvulsants and their use. A woman mentions that she is concerned because her elderly husband recently had to start taking anticonvulsants. A retired pharmacist says that it is not uncommon for people over age 60 to develop epilepsy, that the anticonvulsant drugs help people with epilepsy live normal lives, and that the Epilepsy Foundation of America is a good source of additional information about epilepsy. In the sixth scene, a boys' high school basketball team practices in the gym. One boy talks about his seizures and describes being on anticonvulsant drugs. The boy's parents and the coach met and discussed the boy's epilepsy before he joined the team. The coach read material from the Epilepsy Foundation of America and was convinced that the young man could do anything anyone else could do. The boy says that the coach's belief in him has given him self- 206 Seizures and Epilepsy confidence. The seventh scene is entitled what is the biggest problem people with epilepsy face. Two office workers discuss applicants for a position. One has stated on her application that she has epilepsy, which causes one of the workers to drop her from further consideration for the job. The other worker convinces him to call the woman and find out more about her epilepsy and if it will interfere with her work. This worker states that the company wants to hire the best person for the job, and that may be the person with epilepsy. · Epilepsy in Children: A Primary Care Perspective Source: Landover, MD, Epilepsy Foundation of America, 22:47-minute VHS videotape, 1989. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. Summary: Epilepsy in Children: A Primary Care Perspective, a videotape, reviews the diagnosis and management of childhood seizures. Most childhood seizures can be successfully controlled; the keys are accurate diagnosis and administration of the most appropriate anticonvulsant medication. A seizure is a symptom of an underlying neurological disorder, which may be epilepsy or an epileptic syndrome. Syndromes are defined by the clinical event, electroencephalography (EEG) characteristics, age at onset, evolution and prognosis, family history, clinical history, and physical findings. Many conditions mimic epilepsy in children, including breath holding, pallid infantile syncope, night terrors, sleep walking, syncope, cardiac arrhythmia, and movement disorders. Once the physician has established that a seizure has occurred, it is important to take a clinical history, especially a detailed description of the event. Diagnosis is based on clinical, not EEG, data, but EEG's may suggest a seizure type. If possible, EEG's should be recorded with the child awake, asleep, hyperventilating, and with photic stimulation. When planning the management of a child with epilepsy, the physician should consider the certainty of the diagnosis, the nature of the lesion (if any), the child's age, and the risk of seizure recurrence. Video-EEG recordings of some of the most common seizure types in children are shown: Complex partial, absence, infantile spasms, tonic, and atonic. Commonlyused anticonvulsant drugs are carbamazepine, clonazepam, ethosuximide, phenobarbital, phenytoin, primidone, and valproic acid. The narrators explain which drugs are used for which types of seizures and discuss the danger of toxicity, which can change with age. The physician should prescribe the correct medication for the type of seizure, and refer children with epilepsy whose seizures are difficult to manage to a center specializing in epilepsy. Parents should be involved in the Multimedia 207 treatment plan, and encouraged to allow the child with epilepsy to participate in activities with other children. · Understanding Seizure Disorders Source: Landover, MD, Epilepsy Foundation of America, 11-minute VHS videotape, 1989. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. Summary: Understanding Seizure Disorders, an 11-minute video produced by the Epilepsy Foundation of America, examines the human brain and uses testimonials from persons with epilepsy and videotapes of persons having seizures to explain epilepsy. Epilepsy is defined as seizures that are not related to an explained cause and which tend to recur over time in an unpredictable fashion. There are two types of seizures: Generalized and partial. In a generalized seizure, the electrical disturbance affects the entire brain all at once. In a partial seizure, only one part of the brain is affected at the start; the electrical disturbance may remain localized or spread throughout the brain. Partial seizures may be characterized by strange changes in sense of taste or smell or feeling of movement outside the body or back in time. Some people experience only one kind of seizure, while others experience several kinds. Doctors can attempt to determine the cause and treatment for seizures by (1) taking the patient's personal and family history; (2) talking with the patient and the patient's family and friends about the patient's behavior prior to and during the seizure; and (3) performing diagnostic tests such as an electroencephalogram to measure electrical signals in the brain, brain imaging scans (magnetic resonance imaging or computed tomography) to detect scarring or malformations, and blood tests to detect chemical imbalances. No one cause is usually responsible for the epilepsy, and the etiology of the disorder is not always discovered. More than 100,000 people develop epilepsy every year. By focusing on their time not spent in seizures, and with acceptance and understanding from others, persons with epilepsy can lead productive lives. · Epilepsy: Quality of Life Source: Landover, MD, Epilepsy Foundation of America, 1 VHS videotape, 41:24 minutes, 1987. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (301) 459-3700. (800) 332-1000. Summary: Epilepsy: Quality of Life is a 41-minute videotape about the importance of considering quality of life in the treatment of epilepsy. The 208 Seizures and Epilepsy videotape presents case studies on four children with epilepsy: Aaron, Danny, David, and Sabrina. In each case, the video describes how a reevaluation of treatment improved the quality of life of the individual. In the case of Aaron, who experienced complex partial seizures, new drugs that treated his partial seizures rather than generalized seizures more effectively controlled his epilepsy. Danny's case represents the importance of a multidisciplinary approach to epilepsy treatment. In Danny's case, his difficulty coping with epilepsy had caused him to have stomach problems and learning difficulties. Part of his treatment involved switching schools to one where a learning disabilities teacher was able to work with him. In the case of David, his medications were causing him to have personality changes and made him speak and think very slowly. A change to a new medication greatly improved his personality and quality of life. In the case of Sabrina, her epilepsy had never been properly diagnosed. A reevaluation of her disorder, which consisted primarily of absence seizures, allowed better specific treatment for her disorder and improved her quality of life. Overall, the video stressed the importance of a holistic approach to the treatment of epilepsy and demonstrated the value of reevaluation of epilepsy treatment as new treatments become available. · Epilepsy: The Child and the Family Source: Landover, MD, Epilepsy Foundation of America, 14:20-minute VHS videotape, 1986. Contact: Epilepsy Foundation of America, 4351 Garden City Drive, Landover, MD 20785. (800) 332-1000; (301) 459-3700. Summary: The Epilepsy Foundation of America presents information about childhood seizures for parents. Topics discussed include seizure classification, causes, drug therapy, drug side effects, and special concerns of parents. Seizures occur when brain cells continue to fire. Seizures that affect both sides of the brain are classified as generalized seizures and include tonic-clonic, absence, and myoclonic seizures. Those seizures that affect only one part of the brain are classified as either simple or complex partial seizures. During the diagnostic process, physicians look for possible causes related to pregnancy, falls, or infection and try to rule out any illness that may cause seizures. There is no identifiable cause in about half of all cases of epilepsy. Diagnostic tools include blood work, computed tomography scans, and electroencephalography. Physicians select antiepileptic drugs (AED's) to treat specific kinds of seizures. The physician may prescribe several AED's before finding the one that results in good seizure control with few side effects. Individuals with epilepsy are encouraged to take Multimedia 209 medications regularly to maintain steady levels of the drug in their blood. Common AED side effects include staggering, sleepiness, learning difficulties, and behavior problems. Drug allergies may cause aggression, rash, blood changes, or liver changes. There is no evidence that chronic AED use leads to experimenting with illegal drugs, though teenagers may rebel against regular use of AED's. Parents should communicate with the physician and explore their child's feelings about epilepsy. Parents are encouraged to discuss epilepsy frankly with other children, babysitters, grandparents, and teachers. School problems such as inattention or difficulty with certain subjects should be addressed; they may or may not relate to epilepsy. Children with epilepsy are encouraged to lead normal, active lives. Parents are cautioned to avoid seizure triggers and not overprotect their children. Bibliography: Multimedia on Seizures and Epilepsy The National Library of Medicine is a rich source of information on healthcare-related multimedia productions including slides, computer software, and databases. To access the multimedia database, go to the following Web site: http://locatorplus.gov/. Select “Search LOCATORplus.” Once in the search area, simply type in seizures and epilepsy (or synonyms). Then, in the option box provided below the search box, select “Audiovisuals and Computer Files.” From there, you can choose to sort results by publication date, author, or relevance. The following multimedia has been indexed on seizures and epilepsy. For more information, follow the hyperlink indicated: · Brain surgery. Source: produced by Advanced Medical Education, Inc. for the Learning Channel; Year: 1993; Format: Videorecording; Princeton, N.J: Films for the Humanities; Sciences, c1993. · Care & reporting of seizures (Richmond State School, Staff Development). Year: 1989; Format: Videorecording; [Austin, Tex.]: Texas Dept. of Mental Health and Mental Retardation, c1989. · Convulsive and allied conditions. Source: by S. Philip Goodhart and Benjamin H. Balser; Year: 1944; Format: Motion picture; [New York]: Neuropsychiatric Division, Montefiore Hospital [1944] · Diagnosis and medical management of epileptic seizures. Source: Ayerst Medical Information Service; produced by Intermedica Incorporated; Year: 1975; Format: Videorecording; New York: Ayerst, c1975. · Emergency treatment of seizures. Source: Dept. of Continuing Education, Harvard Medical School and the Massachusetts General 210 Seizures and Epilepsy Hospital, Emergency Training Course; produced by Health Education Programs, Inc; Year: 1973; Format: Videorecording; [Minneapolis]: Institute for Continuing Physician Education, c1973. · Epilepsy: breaking the barrier. Source: a presentation of Films for the Humanities & Sciences; a presentation of OETA and Medstar Communications, Inc; Year: 1995; Format: Videorecording; Princeton, N.J.: Films for the Humanities and Sciences, c1995. · Epilepsy: the storm within. Source: a presentation of Films for the Humanities & Sciences; a production of WLIW21, Long Island Public Television; Year: 1998; Format: Videorecording; Princeton, N.J.: Films for the Humanities Sciences, c1998. · Epilepsy. Year: 1985; Format: Slide; [Columbus, Ohio]: Center for Continuing Education, the Ohio State University College of Medicine, [1985] · Epilepsy and pregnancy. Source: Marshfield Video Network, in cooperation with Marshfield Clinic, St. Joseph's Hospital, and Marshfield Medical Research Foundation; Year: 1988; Format: Videorecording; Marshfield, WI: The Network, c1988. · Epilepsy. Source: a presentation of Films for the Humanities & Sciences; a production of Dartmouth-Hitchcock Medical Center; Year: 1993; Format: Videorecording; Lebanon, N.H.: DHMC, c1993. · Evaluation of different types of seizures. Source: Gregory O. Walsh, Zina Mirsky; Year: 1977; Format: Videorecording; San Francisco: AVC Corporation, c1977. · Febrile seizures: controversies. Source: presented by the Department of Pediatrics, Emory University School of Medicine; Year: 1983; Format: Videorecording; Atlanta, Ga.: Emory Medical Television Network, 1983. · Febrile seizures in children. Source: with Arnold P. Gold; Year: 1986; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, 1986. · How to recognize and classify seizures and epilepsy. Source: produced by the Epilepsy Foundation of America; Year: 1991; Format: Videorecording; Landover, Md.: The Foundation, c1991. · How to recognize and classify seizures. Source: presented by the Epilepsy Foundation of America; produced by Borland-Coogan Associates, Inc. for the Epilepsy Foundation; Year: 1981; Format: Videorecording; [Landover, Md.]: EFA, c1981. · Illustrated classification of seizures. Source: written and presented by L. William McLain, Jr; Year: 1981; Format: Videorecording; Minneapolis, MN: University of Minnesota, c1981. Multimedia 211 · Modern concepts of epilepsy. Source: presented by Ayerst Laboratories; produced by Sturgis-Grant Productions, Inc; Year: 1956; Format: Motion picture; United States: Ayerst, c1956. · Petit mal seizures. Source: Mayo Clinic; Year: 1962; Format: Motion picture; Rochester, Minn.: The Clinic, [1962] · Seizure and movement disorders in children. Source: [presented by Ross Laboratories, developed in cooperation and coordination with the American Academy of Pediatrics]; Year: 1987; Format: Videorecording; Columbus, Ohio: The Laboratories, c1987. · Seizure clinic: management of the patient with epilepsy. Source: with Arnold P. Gold and Stanley R. Resor; Year: 1988; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, 1988. · Seizure disorders in children: a report. Source: Robert C. Vannucci; [made by] Penn Sate Television; Year: 1976; Format: Videorecording; University Park, Pa.: Pennsylvania State University: [for loan or sale by its Audio-Visual Services], c1976. · Seizure disorders. Part 1. Carrollton, TX: HSTN, c1999. Year: 1999; Format: Videorecording; · Seizure disorders. Part 2. Carrollton, TX: HSTN, c1999. Year: 1999; Format: Videorecording; · Seizures and epilepsy in children. Source: John M. Freeman, Eileen P.G. Vining; Year: 1992; Format: Videorecording; Secaucus, N.J.: Network for Continuing Medical Education, 1992. · Spellbound: epilepsy surgery and the family a presentation of Films for the Humanities & Sciences; produced with the participation of SaskFILM, produced with the participation of Saskatchewan Communications Network; a co-production bet. Year: 1996; Format: Videorecording; Princeton, N.J.: Films for the Humanities Sciences, c1996. · Understanding seizure disorders. Source: a presentation of the Office of Clinical Center Communications; produced by Medical Arts and Photography Branch, NCRR; Year: 1990; Format: Videorecording; [Bethesda, Md.]: National Institutes of Health, 1990. · Working up the patient with seizures: a neurological evaluation. Source: written and presented by Ilo E. Leppik; Year: 1981; Format: Videorecording; [Minneapolis, Minn.]: University of Minnesota, c1981. 212 Seizures and Epilepsy Vocabulary Builder Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Psychic: Pertaining to the psyche or to the mind; mental. [EU] Recuperation: The recovery of health and strength. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Syncope: A temporary suspension of consciousness due to generalized cerebral schemia, a faint or swoon. [EU] Periodicals and News 213 CHAPTER 8. PERIODICALS AND NEWS ON SEIZURES AND EPILEPSY Overview Keeping up on the news relating to seizures and epilepsy can be challenging. Subscribing to targeted periodicals can be an effective way to stay abreast of recent developments on seizures and epilepsy. Periodicals include newsletters, magazines, and academic journals. In this chapter, we suggest a number of news sources and present various periodicals that cover seizures and epilepsy beyond and including those which are published by patient associations mentioned earlier. We will first focus on news services, and then on periodicals. News services, press releases, and newsletters generally use more accessible language, so if you do chose to subscribe to one of the more technical periodicals, make sure that it uses language you can easily follow. News Services & Press Releases Well before articles show up in newsletters or the popular press, they may appear in the form of a press release or a public relations announcement. One of the simplest ways of tracking press releases on seizures and epilepsy is to search the news wires. News wires are used by professional journalists, and have existed since the invention of the telegraph. Today, there are several major “wires” that are used by companies, universities, and other organizations to announce new medical breakthroughs. In the following sample of sources, we will briefly describe how to access each service. These services only post recent news intended for public viewing. 214 Seizures and Epilepsy PR Newswire Perhaps the broadest of the wires is PR Newswire Association, Inc. To access this archive, simply go to http://www.prnewswire.com. Below the search box, select the option “The last 30 days.” In the search box, type “seizures and epilepsy” or synonyms. The search results are shown by order of relevance. When reading these press releases, do not forget that the sponsor of the release may be a company or organization that is trying to sell a particular product or therapy. Their views, therefore, may be biased. The following is typical of press releases that can be found on PR Newswire: · Foundation Says FDA Action Gives Doctors New Option for Treating Difficult Seizures in Children Summary: WASHINGTON, Jan. the Epilepsy Foundation said Administration's clearance of therapy in pediatric patients struggling with the disorder. 20 /PRNewswire/ -- Representatives of today that the U.S. Food and Drug lamotrigine (Lamictal) as adjunctive brings new hope to many families "When uncontrolled, partial seizures may severely impact a child's intellectual and social development. They are also among the most difficult seizures to treat," said Patricia Osborn-Shafer, R.N., M.N., Chair of the Foundation's Professional Advisory Board. Shafer is Coordinator, Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center in Boston. "We're extremely pleased that clinicians now have another therapeutic option for helping to bring these types of seizures in children under better control," she said. The FDA clearance is for the use of lamotrigine as add-on therapy for partial seizures in children age two and over. The medication, which is manufactured by GlaxoSmithKline, under the brand name Lamictal was approved in 1994 for use in adult patients. Partial seizures are brief involuntary sensations, movements or behaviors that occur in clear consciousness or with impaired consciousness. They may involve distortions of feeling, perception, mood, vision, hearing or touch. Periodicals and News 215 Or they may cause loss of awareness, repetitive movements and verbalizations, confused walking about, and other behaviors that are not under conscious control. The Epilepsy Foundation, with national offices in metropolitan Washington, D.C., is the non-profit voluntary agency devoted to research, education, advocacy, and service in the community for 2.3 million Americans with seizure disorders and their families. Reuters The Reuters’ Medical News database can be very useful in exploring news archives relating to seizures and epilepsy. While some of the listed articles are free to view, others can be purchased for a nominal fee. To access this archive, go to http://www.reutershealth.com/frame2/arch.html and search by “seizures and epilepsy” (or synonyms). The following was recently listed in this archive for seizures and epilepsy: · Seizures stop after brain monitoring for epilepsy Source: Reuters Health eLine Date: November 08, 2001 http://www.reuters.gov/archive/2001tail/11/08/eline/links/20011108elin010.html · Seizures often unrecognized in young children, teens Source: Reuters Health eLine Date: November 07, 2000 http://www.reuters.gov/archive/2000/11/07/eline/links/20001107elin 009.html · Seizures in elderly a significant, severe problem Source: Reuters Medical News Date: December 18, 1998 http://www.reuters.gov/archive/1998/12/18/professional/links/19981 218clin011.html · Vaccine-Related Seizures Not Tied To Epilepsy Source: Reuters Health eLine Date: May 01, 1998 http://www.reuters.gov/archive/1998/05/01/eline/links/19980501elin 013.html 216 Seizures and Epilepsy · Fever Seizures Linked To Later Epilepsy Source: Reuters Health eLine Date: April 24, 1998 http://www.reuters.gov/archive/1998/04/24/eline/links/19980424elin 010.html · Epilepsy Expert Urges Regulation To Prevent TV-Induced Seizures Source: Reuters Medical News Date: March 03, 1998 http://www.reuters.gov/archive/1998/03/03/professional/links/19980 303rglt001.html · Two Unprovoked Seizures Constitute Epilepsy Source: Reuters Medical News Date: February 12, 1998 http://www.reuters.gov/archive/1998/02/12/professional/links/19980 212clin007.html · Implant Controls Epileptic Seizures Source: Reuters Health eLine Date: December 08, 1997 http://www.reuters.gov/archive/1997/12/08/eline/links/19971208elin 003.html · Sports Seizures Don't Cause Epilepsy Source: Reuters Health eLine Date: January 17, 1997 http://www.reuters.gov/archive/1997/01/17/eline/links/19970117elin 010.html · Hispanic Kids Suffer More Seizures Source: Reuters Health eLine Date: December 12, 1996 http://www.reuters.gov/archive/1996/12/12/eline/links/19961212elin 002.html Periodicals and News 217 · Vagus Nerve Stimulation Effective Adjunctive Treatment For Patients With Intractable Seizures Source: Reuters Medical News Date: November 19, 1996 http://www.reuters.gov/archive/1996/11/19/professional/links/19961 119clin005.html · Surgery Cuts Epilepsy Seizures Source: Reuters Health eLine Date: August 13, 1996 http://www.reuters.gov/archive/1996/08/13/eline/links/19960813elin 002.html · Hypnosis Useful In Differentiating Epileptic From Non-Epileptic Seizures Source: Reuters Medical News Date: December 07, 1995 http://www.reuters.gov/archive/1995/12/07/professional/links/19951 207clin012.html The NIH Within MEDLINEplus, the NIH has made an agreement with the New York Times Syndicate, the AP News Service, and Reuters to deliver news that can be browsed by the public. Search news releases at http://www.nlm.nih.gov/medlineplus/alphanews_a.html. MEDLINEplus allows you to browse across an alphabetical index. Or you can search by date at http://www.nlm.nih.gov/medlineplus/newsbydate.html. Often, news items are indexed by MEDLINEplus within their search engine. The following was recently indexed as relating to seizures and epilepsy: · Abbott Once-daily Epilepsy Drug Approved in US http://www.nlm.nih.gov/medlineplus/news/fullstory_10962.html Business Wire Business Wire is similar to PR Newswire. To access this archive, simply go to http://www.businesswire.com. You can scan the news by industry category or company name. 218 Seizures and Epilepsy Internet Wire Internet Wire is more focused on technology than the other wires. To access this site, go to http://www.internetwire.com and use the “Search Archive” option. Type in “seizures and epilepsy” (or synonyms). As this service is oriented to technology, you may wish to search for press releases covering diagnostic procedures or tests that you may have read about. Search Engines Free-to-view news can also be found in the news section of your favorite search engines (see the health news page at Yahoo: http://dir.yahoo.com/Health/News_and_Media/, or use this Web site’s general news search page http://news.yahoo.com/. Type in “seizures and epilepsy” (or synonyms). If you know the name of a company that is relevant to seizures and epilepsy, you can go to any stock trading Web site (such as www.etrade.com) and search for the company name there. News items across various news sources are reported on indicated hyperlinks. BBC Covering news from a more European perspective, the British Broadcasting Corporation (BBC) allows the public free access to their news archive located at http://www.bbc.co.uk/. Search by “seizures and epilepsy” (or synonyms). Newsletter Articles If you choose not to subscribe to a newsletter, you can nevertheless find references to newsletter articles. We recommend that you use the Combined Health Information Database, while limiting your search criteria to “newsletter articles.” Again, you will need to use the “Detailed Search” option. Go to the following hyperlink: http://chid.nih.gov/detail/detail.html. Go to the bottom of the search page where “You may refine your search by.” Select the dates and language that you prefer. For the format option, select “Newsletter Article.” By making these selections, and typing in “seizures and epilepsy” (or synonyms) into the “For these words:” box, you will only receive results on newsletter articles. You should check back periodically with this database as Periodicals and News 219 it is updated every 3 months. The following is a typical result when searching for newsletter articles on seizures and epilepsy: Academic Periodicals covering Seizures and Epilepsy Academic periodicals can be a highly technical yet valuable source of information on seizures and epilepsy. We have compiled the following list of periodicals known to publish articles relating to seizures and epilepsy and which are currently indexed within the National Library of Medicine’s PubMed database (follow hyperlinks to view more information, summaries, etc., for each). In addition to these sources, to keep current on articles written on seizures and epilepsy published by any of the periodicals listed below, you can simply follow the hyperlink indicated or go to the following Web site: www.ncbi.nlm.nih.gov/pubmed. Type the periodical’s name into the search box to find the latest studies published. If you want complete details about the historical contents of a periodical, you can visit the Web site: http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi. Here, type in the name of the journal or its abbreviation, and you will receive an index of published articles. At http://locatorplus.gov/ you can retrieve more indexing information on medical periodicals (e.g. the name of the publisher). Select the button “Search LOCATORplus.” Then type in the name of the journal and select the advanced search option “Journal Title Search.” The following is a sample of periodicals which publish articles on seizures and epilepsy: · Acta Neurologica Scandinavica. (Acta Neurol Scand) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ac ta+Neurologica+Scandinavica&dispmax=20&dispstart=0 · American Journal of Medical Genetics. (Am J Med Genet) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=A merican+Journal+of+Medical+Genetics&dispmax=20&dispstart=0 · Bmj (Clinical Research Ed. . (BMJ) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=B mj+(Clinical+Research+Ed.+&dispmax=20&dispstart=0 220 Seizures and Epilepsy · Brain Research. (Brain Res) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Br ain+Research&dispmax=20&dispstart=0 · Epilepsy Research. (Epilepsy Res) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ep ilepsy+Research&dispmax=20&dispstart=0 · Experimental Neurology. (Exp Neurol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ex perimental+Neurology&dispmax=20&dispstart=0 · Journal of Neuroimmunology. (J Neuroimmunol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Neuroimmunology&dispmax=20&dispstart=0 · Journal of Tropical Pediatrics. (J Trop Pediatr) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Jo urnal+of+Tropical+Pediatrics&dispmax=20&dispstart=0 · Neuroscience Letters. (Neurosci Lett) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ne uroscience+Letters&dispmax=20&dispstart=0 · Obstetrics and Gynecology. (Obstet Gynecol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Ob stetrics+and+Gynecology&dispmax=20&dispstart=0 · Pediatric Neurology. (Pediatr Neurol) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Pe diatric+Neurology&dispmax=20&dispstart=0 · Synapse (New York, N. . . (Synapse) http://www.ncbi.nlm.nih.gov/entrez/jrbrowser.cgi?field=0®exp=Sy napse+(New+York,+N.+.+&dispmax=20&dispstart=0 Vocabulary Builder Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ Periodicals and News 221 from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Disorientation: The loss of proper bearings, or a state of mental confusion as to time, place, or identity. [EU] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH] Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Physician Guidelines and Databases 223 CHAPTER 9. PHYSICIAN GUIDELINES AND DATABASES Overview Doctors and medical researchers rely on a number of information sources to help patients with their conditions. Many will subscribe to journals or newsletters published by their professional associations or refer to specialized textbooks or clinical guides published for the medical profession. In this chapter, we focus on databases and Internet-based guidelines created or written for this professional audience. NIH Guidelines For the more common diseases, The National Institutes of Health publish guidelines that are frequently consulted by physicians. Publications are typically written by one or more of the various NIH Institutes. For physician guidelines, commonly referred to as “clinical” or “professional” guidelines, you can visit the following Institutes: · Office of the Director (OD); guidelines consolidated across agencies available at http://www.nih.gov/health/consumer/conkey.htm · National Institute of General Medical Sciences (NIGMS); fact sheets available at http://www.nigms.nih.gov/news/facts/ · National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M., Inc.) with guidelines: http://www.nlm.nih.gov/medlineplus/healthtopics.html · National Institute of Neurological Disorders and Stroke (NINDS); neurological disorder information pages available at http://www.ninds.nih.gov/health_and_medical/disorder_index.htm 224 Seizures and Epilepsy NIH Databases In addition to the various Institutes of Health that publish professional guidelines, the NIH has designed a number of databases for professionals.26 Physician-oriented resources provide a wide variety of information related to the biomedical and health sciences, both past and present. The format of these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available. The following are referenced by the National Library of Medicine:27 · Bioethics: Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This information is provided in conjunction with the Kennedy Institute of Ethics located at Georgetown University, Washington, D.C.: http://www.nlm.nih.gov/databases/databases_bioethics.html · HIV/AIDS Resources: Describes various links and databases dedicated to HIV/AIDS research: http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html · NLM Online Exhibitions: Describes “Exhibitions in the History of Medicine”: http://www.nlm.nih.gov/exhibition/exhibition.html. Additional resources for historical scholarship in medicine: http://www.nlm.nih.gov/hmd/hmd.html · Biotechnology Information: Access to public databases. The National Center for Biotechnology Information conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information for the better understanding of molecular processes affecting human health and disease: http://www.ncbi.nlm.nih.gov/ · Population Information: The National Library of Medicine provides access to worldwide coverage of population, family planning, and related health issues, including family planning technology and programs, fertility, and population law and policy: http://www.nlm.nih.gov/databases/databases_population.html · Cancer Information: Access to caner-oriented databases: http://www.nlm.nih.gov/databases/databases_cancer.html Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINEplus (http://medlineplus.gov/ or http://www.nlm.nih.gov/medlineplus/databases.html). 27 See http://www.nlm.nih.gov/databases/databases.html. 26 Physician Guidelines and Databases 225 · Profiles in Science: Offering the archival collections of prominent twentieth-century biomedical scientists to the public through modern digital technology: http://www.profiles.nlm.nih.gov/ · Chemical Information: Provides links to various chemical databases and references: http://sis.nlm.nih.gov/Chem/ChemMain.html · Clinical Alerts: Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and mortality: http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html · Space Life Sciences: Provides links and information to space-based research (including NASA): http://www.nlm.nih.gov/databases/databases_space.html · MEDLINE: Bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the healthcare system, and the pre-clinical sciences: http://www.nlm.nih.gov/databases/databases_medline.html · Toxicology and Environmental Health Information (TOXNET): Databases covering toxicology and environmental health: http://sis.nlm.nih.gov/Tox/ToxMain.html · Visible Human Interface: Anatomically detailed, three-dimensional representations of normal male and female human bodies: http://www.nlm.nih.gov/research/visible/visible_human.html While all of the above references may be of interest to physicians who study and treat seizures and epilepsy, the following are particularly noteworthy. The Combined Health Information Database A comprehensive source of information on clinical guidelines written for professionals is the Combined Health Information Database. You will need to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information Package” and seizures and epilepsy using the “Detailed Search” option. Go directly to the following hyperlink: http://chid.nih.gov/detail/detail.html. To find associations, use the drop boxes at the bottom of the search page where “You may refine your search by.” For the publication date, select “All Years,” select your preferred language, and the format option “Fact Sheet.” By making these selections and typing “seizures and epilepsy” (or synonyms) into the “For these words:” box above, you will only receive results on fact sheets dealing with seizures and epilepsy. The following is a sample result: 226 Seizures and Epilepsy · Entitled to Respect: A National Survey of Teens' Attitudes and Behaviors About Epilepsy and Acceptance: Executive Summary Source: Landover, MD, Epilepsy Foundation, 13 p., November 2001. Contact: Epilepsy Foundation, 4351 Garden City Drive, Landover, MD 20785-7223. INTERNET/EMAIL: http://www.entitledtorespect.org/etr/survey/pdf. Summary: Entitled to Respect: A National Survey of Teens' Attitudes and Behaviors About Epilepsy and Acceptance: Executive Summary summarizes the results of a survey of teens' attitudes and behaviors about epilepsy. The survey consisted of a questionnaire that was distributed to teens throughout the United States by 20 affiliates of the Epilepsy Foundation from March through July 2001 in schools selected by the affiliates. The questionnaire asked about respondents' (1) demographics; (2) awareness of epilepsy; (3) knowledge of epilepsy; (4) perceived stigmas associated with epilepsy; and (5) awareness of muscular dystrophy, human immunodeficiency virus infection/acquired immunodeficiency syndrome, arthritis, diabetes, breast cancer, and Parkinson's Disease. Results are based on 19,441 usable questionnaires. Thirty-six percent of the respondents felt that kids with epilepsy are likely to get picked on or bullied more than other kids. Only 25 percent felt this is unlikely to happen. Thirty-one percent were not sure whether they would tell their friends if they had epilepsy. Although 31 percent of the respondents reported they would date a person with epilepsy, 44 percent were not sure, and 11 percent said that they would not date someone with epilepsy. Approximately half (49 percent) of the respondents have never heard or read about epilepsy and only 20 percent knew someone with epilepsy. Nearly half (49 percent) think epilepsy is contagious or do not have enough knowledge to know that epilepsy is not a contagious disease. Awareness and understanding of epilepsy tended to be higher among girls, older students, and whites. More than half (52 percent) of the respondents say people die from seizures and 19 percent say epilepsy is a mental illness. Based on awareness, only 34 percent of the respondents are informed about epilepsy and only 16 percent have high awareness scores. Most (62 percent) have low awareness scores. Of all the chronic health conditions asked about, the respondents were least familiar with epilepsy. Epilepsy was also the least feared. Over two thirds (68 percent) did not know what to do if someone had a seizure. Physician Guidelines and Databases 227 · Epilepsy and Driving Licence Regulations Source: Heemstede, The Netherlands, International Bureau for Epilepsy. Heemstede, The Netherlands, International League Against Epilepsy, 91 p., September 1992. Contact: International Bureau for Epilepsy, P.O. Box 21, 2100 AA Heemstede, The Netherlands. Summary: Epilepsy and Driving Licence Regulations, a report, promotes the goal of uniformity in driver's license regulations in order to stimulate the search for solutions to the many problems that still remain unresolved. The report is divided into seven sections, and is based on the efforts of seven physicians who work in separate parts of the world and are recognized as having a special interest and experience in the field of epilepsy and driving. The first section presents an introduction to the controversy over driving license regulations for persons with histories of epilepsy and the role physicians should play in these regulations. The second section describes current driving license regulations in (1) Europe (the European community, other western and northern European countries, and eastern European countries); (2) the Middle East and Asian countries; (3) Australasia (Australia and New Zealand); (4) Africa; (5) North America (the United States and Canada); and (6) South America. The third section reviews selected data from the large volume of literature on the topic of epilepsy accident rates and recurrence risks. The fourth section discusses some of the mainly clinical problems that arise with respect to epilepsy and suggests ways in which they can be addressed: (1) Prognosis, (2) single unprovoked seizures, (3) epilepsies and seizures, (4) provoked seizures, (5) trauma and craniotomy, and (6) cerebrovascular disorders. The fifth section addresses the question of medical fitness to undertake commercial driving. The sixth section examines legal considerations with regard to physician and patient responsibility. The final section offers guidelines for granting driving licenses. Items and remarks that could not be included in the main body of the report are provided in an appendix. · Measurement of Physiologic Health for Children: Volume 3: Seizure Disorders Source: Santa Monica, CA, Rand Corporation, Health Insurance Experiment Series, 60 p., January 1983. Contact: RAND, Distribution Services, 1700 Main Street, P.O. Box 2138, Santa Monica, CA 90407-2138. (310) 393-0411, ext. 6686. RAND/R2898/3-HHS. 228 Seizures and Epilepsy Summary: Measurement of Physiologic Health for Children: Volume 3, Seizure Disorders describes the enrollment results of the child health portion of the Rand Health Insurance Experiment, a large-scale social experiment that was designed to assess how varying the cost to the patient of health services affects the use of services, quality of care, patient satisfaction, and health status. It was also designed to study how the provision of services in either the fee-for-service system or a prepaid group practice affects those same variables. Chapters include (1) an introduction; (2) definitions and measurement issues for febrile and epileptic seizures; (3) justification for selecting seizure disorders for health insurance experiment analyses, including a discussion of general considerations and the incidence and prevalence, morbidity and mortality, and effects on medical care of febrile seizures and epilepsy; (4) health insurance experiment methods, including a discussion of the prevalence of seizure disorders among children, criteria for classification, the impact of the disease, and the effects of generous insurance; (5) health insurance experiment enrollment results, including the enrollment sample, the prevalence of seizures according to the Medical History Questionnaire, the impact of the disease, and the prevalence of seizures according to health insurance experiment insurance plans to which they were assigned; and (6) criteria for evaluating the quality of care rendered to children with seizure disorders. Appendixes include lists of the common types of seizure disorders, seizure disorders batteries from the Medical History Questionnaire, the distribution of responses to disease impact questions, and quality-of-care criteria for seizure disorders in children. · Epilepsy Foundation of America Materials Source: Landover, MD: Epilepsy Foundation of America. 1990. 19 pp. Contact: Available from Epilepsy Foundation , 4351 Garden City Drive, Landover, MD 20785. Telephone: (301) 459-3700 or (800) EFA-1000 / fax: (301) 577-2684 / e-mail: postmaster@efa.org / Web site: http://www.efa.org. Available at no charge. Summary: This catalog lists materials available form the Epilepsy Foundation of America including educational materials produced as part of the foundation's transcultural education campaign. Materials have been produced in both English and Spanish and include brochures, posters, a psychosocial seizures inventory, and slides and cassettes. Selected English-language brochures have been revised with special relevance for black communities. Physician Guidelines and Databases 229 The NLM Gateway28 The NLM (National Library of Medicine) Gateway is a Web-based system that lets users search simultaneously in multiple retrieval systems at the U.S. National Library of Medicine (NLM). It allows users of NLM services to initiate searches from one Web interface, providing “one-stop searching” for many of NLM’s information resources or databases.29 One target audience for the Gateway is the Internet user who is new to NLM’s online resources and does not know what information is available or how best to search for it. This audience may include physicians and other healthcare providers, researchers, librarians, students, and, increasingly, patients, their families, and the public.30 To use the NLM Gateway, simply go to the search site at http://gateway.nlm.nih.gov/gw/Cmd. Type “seizures and epilepsy” (or synonyms) into the search box and click “Search.” The results will be presented in a tabular form, indicating the number of references in each database category. Results Summary Category Items Found Journal Articles 355308 Books / Periodicals / Audio Visual 2595 Consumer Health 294 Meeting Abstracts 2575 Other Collections 96 Total 360868 Adapted from NLM: http://gateway.nlm.nih.gov/gw/Cmd?Overview.x. The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH). 30 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases. 28 29 230 Seizures and Epilepsy HSTAT31 HSTAT is a free, Web-based resource that provides access to full-text documents used in healthcare decision-making.32 HSTAT’s audience includes healthcare providers, health service researchers, policy makers, insurance companies, consumers, and the information professionals who serve these groups. HSTAT provides access to a wide variety of publications, including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments from the Agency for Healthcare Research and Quality (AHRQ), as well as AHRQ’s Put Prevention Into Practice.33 Simply search by “seizures and epilepsy” (or synonyms) at the following Web site: http://text.nlm.nih.gov. Coffee Break: Tutorials for Biologists34 Some patients may wish to have access to a general healthcare site that takes a scientific view of the news and covers recent breakthroughs in biology that may one day assist physicians in developing treatments. To this end, we recommend “Coffee Break,” a collection of short reports on recent biological discoveries. Each report incorporates interactive tutorials that demonstrate how bioinformatics tools are used as a part of the research process. Currently, all Coffee Breaks are written by NCBI staff.35 Each report is about 400 words and is usually based on a discovery reported in one or more articles from recently published, peer-reviewed literature.36 This site has new Adapted from HSTAT: http://www.nlm.nih.gov/pubs/factsheets/hstat.html. The HSTAT URL is http://hstat.nlm.nih.gov/. 33 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s Guide to Clinical Preventive Services; the independent, nonfederal Task Force on Community Services Guide to Community Preventive Services; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations. 34 Adapted from http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html. 35 The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story. 36 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process. 31 32 Physician Guidelines and Databases 231 articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee Break Web site at http://www.ncbi.nlm.nih.gov/Coffeebreak/. Other Commercial Databases In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a few examples that may interest you: · CliniWeb International: Index and table of contents to selected clinical information on the Internet; see http://www.ohsu.edu/cliniweb/. · Image Engine: Multimedia electronic medical record system that integrates a wide range of digitized clinical images with textual data stored in the University of Pittsburgh Medical Center’s MARS electronic medical record system; see the following Web site: http://www.cml.upmc.edu/cml/imageengine/imageEngine.html. · Medical World Search: Searches full text from thousands of selected medical sites on the Internet; see http://www.mwsearch.com/. · MedWeaver: Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical literature, and to explore relevant Web sites; see http://www.med.virginia.edu/~wmd4n/medweaver.html. · Metaphrase: Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language generally used by caregivers into terms from formal, controlled vocabularies; see http://www.lexical.com/Metaphrase.html. The Genome Project and Seizures and Epilepsy With all the discussion in the press about the Human Genome Project, it is only natural that physicians, researchers, and patients want to know about how human genes relate to seizures and epilepsy. In the following section, we will discuss databases and references used by physicians and scientists who work in this area. 232 Seizures and Epilepsy Online Mendelian Inheritance in Man (OMIM) The Online Mendelian Inheritance in Man (OMIM) database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere. OMIM was developed for the World Wide Web by the National Center for Biotechnology Information (NCBI).37 The database contains textual information, pictures, and reference information. It also contains copious links to NCBI’s Entrez database of MEDLINE articles and sequence information. Go to http://www.ncbi.nlm.nih.gov/Omim/searchomim.html to search the database. Type “seizures and epilepsy” (or synonyms) in the search box, and click “Submit Search.” If too many results appear, you can narrow the search by adding the word “clinical.” Each report will have additional links to related research and databases. By following these links, especially the link titled “Database Links,” you will be exposed to numerous specialized databases that are largely used by the scientific community. These databases are overly technical and seldom used by the general public, but offer an abundance of information. The following is an example of the results you can obtain from the OMIM for seizures and epilepsy: · Alopecia-mental Retardation Syndrome with Hypergonadotropic Hypogonadism Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?601217 · Benign Familial Infantile Convulsions Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?601764 · Febrile Seizures Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?121210 Convulsions and Adapted from http://www.ncbi.nlm.nih.gov/. Established in 1988 as a national resource for molecular biology information, NCBI creates public databases, conducts research in computational biology, develops software tools for analyzing genome data, and disseminates biomedical information--all for the better understanding of molecular processes affecting human health and disease. 37 Physician Guidelines and Databases 233 · Generalized Epilepsy with Febrile Seizures Plus Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?604233 · Kifafa Seizure Disorder Web site: http://www.ncbi.nlm.nih.gov/htbinpost/Omim/dispmim?245180 Genes and Disease (NCBI - Map) The Genes and Disease database is produced by the National Center for Biotechnology Information of the National Library of Medicine at the National Institutes of Health. This Web site categorizes each disorder by the system of the body. Go to http://www.ncbi.nlm.nih.gov/disease/, and browse the system pages to have a full view of important conditions linked to human genes. Since this site is regularly updated, you may wish to re-visit it from time to time. The following systems and associated disorders are addressed: · Muscle and Bone: Movement and growth. Examples: Duchenne muscular dystrophy, Ellis-van Creveld syndrome, Marfan syndrome, myotonic dystrophy, spinal muscular atrophy. Web site: http://www.ncbi.nlm.nih.gov/disease/Muscle.html · Nervous System: Mind and body. Examples: Alzheimer disease, Amyotrophic lateral sclerosis, Angelman syndrome, Charcot-Marie-Tooth disease, epilepsy, essential tremor, Fragile X syndrome, Friedreich’s ataxia, Huntington disease, NiemannPick disease, Parkinson disease, Prader-Willi syndrome, Rett syndrome, Spinocerebellar atrophy, Williams syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Brain.html · Signals: Cellular messages. Examples: Ataxia telangiectasia, Baldness, Cockayne syndrome, Glaucoma, SRY: sex determination, Tuberous sclerosis, Waardenburg syndrome, Werner syndrome. Web site: http://www.ncbi.nlm.nih.gov/disease/Signals.html 234 Seizures and Epilepsy Entrez Entrez is a search and retrieval system that integrates several linked databases at the National Center for Biotechnology Information (NCBI). These databases include nucleotide sequences, protein sequences, macromolecular structures, whole genomes, and MEDLINE through PubMed. Entrez provides access to the following databases: · PubMed: Biomedical literature (PubMed), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed · Nucleotide Sequence Database (Genbank): Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Nucleotide · Protein Sequence Database: Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Protein · Structure: Three-dimensional macromolecular structures, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Structure · Genome: Complete genome assemblies, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Genome · PopSet: Population study data sets, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Popset · OMIM: Online Mendelian Inheritance in Man, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM · Taxonomy: Organisms in GenBank, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=Taxonomy · Books: Online books, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=books · ProbeSet: Gene Expression Omnibus (GEO), Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo · 3D Domains: Domains from Entrez Structure, Web site: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=geo · NCBI’s Protein Sequence Information Survey Results: Web site: http://www.ncbi.nlm.nih.gov/About/proteinsurvey/ To access the Entrez system at the NCBI, go to http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=genom e, and then select the database that you would like to search. The databases Physician Guidelines and Databases 235 available are listed in the drop box next to “Search.” In the box next to “for,” enter “seizures and epilepsy” (or synonyms) and click “Go.” Jablonski’s Multiple Congenital Anomaly/Mental Retardation (MCA/MR) Syndromes Database38 This online resource can be quite useful. It has been developed to facilitate the identification and differentiation of syndromic entities. Special attention is given to the type of information that is usually limited or completely omitted in existing reference sources due to space limitations of the printed form. At http://www.nlm.nih.gov/mesh/jablonski/syndrome_toc/toc_a.html, you can also search across syndromes using an alphabetical index. Search by keywords at http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html. The Genome Database39 Established at Johns Hopkins University in Baltimore, Maryland in 1990, the Genome Database (GDB) is the official central repository for genomic mapping data resulting from the Human Genome Initiative. In the spring of 1999, the Bioinformatics Supercomputing Centre (BiSC) at the Hospital for Sick Children in Toronto, Ontario assumed the management of GDB. The Human Genome Initiative is a worldwide research effort focusing on structural analysis of human DNA to determine the location and sequence of the estimated 100,000 human genes. In support of this project, GDB stores and curates data generated by researchers worldwide who are engaged in the mapping effort of the Human Genome Project (HGP). GDB’s mission is to provide scientists with an encyclopedia of the human genome which is continually revised and updated to reflect the current state of scientific knowledge. Although GDB has historically focused on gene mapping, its focus will broaden as the Genome Project moves from mapping to sequence, and finally, to functional analysis. To access the GDB, simply go to the following hyperlink: http://www.gdb.org/. Search “All Biological Data” by “Keyword.” Type “seizures and epilepsy” (or synonyms) into the search box, and review the Adapted from the National Library of Medicine: http://www.nlm.nih.gov/mesh/jablonski/about_syndrome.html. 39 Adapted from the Genome Database: http://gdbwww.gdb.org/gdb/aboutGDB.html#mission. 38 236 Seizures and Epilepsy results. If more than one word is used in the search box, then separate each one with the word “and” or “or” (using “or” might be useful when using synonyms). This database is extremely technical as it was created for specialists. The articles are the results which are the most accessible to nonprofessionals and often listed under the heading “Citations.” The contact names are also accessible to non-professionals. Specialized References The following books are specialized references written for professionals interested in seizures and epilepsy (sorted alphabetically by title, hyperlinks provide rankings, information, and reviews at Amazon.com): · The Behavioral Neurology of White Matter by Christopher M. Filley; Paperback - 279 pages; 1st edition (September 15, 2001), Oxford University Press; ISBN: 019513561X; http://www.amazon.com/exec/obidos/ASIN/019513561X/icongroupintern a · The Cerebellum and Its Disorders by Mario-Ubaldo Manto, Massimo Pandolfo; Hardcover - 1st edition (January 2002), Cambridge University Press; ISBN: 0521771560; http://www.amazon.com/exec/obidos/ASIN/0521771560/icongroupinterna · Clinical Neurology by David A. Greenberg, et al; Paperback - 390 pages; 5th edition (February 9, 2002), Appleton & Lange; ISBN: 0071375430; http://www.amazon.com/exec/obidos/ASIN/0071375430/icongroupinterna · Clinical Neurology for Psychiatrists by David M. Kaufman; Hardcover 670 pages, 5th edition (January 15, 2001), W. B. Saunders Co.; ISBN: 0721689957; http://www.amazon.com/exec/obidos/ASIN/0721689957/icongroupinterna · Comprehensive Neurology by Roger N. Rosenberg (Editor), David E. Pleasure (Editor); 1280 pages, 2nd edition (April 1998), Wiley-Liss; ISBN: 0471169587; http://www.amazon.com/exec/obidos/ASIN/0471169587/icongroupinterna · Emergent and Urgent Neurology by William J. Weiner (Editor), Lisa M. Shulman (Editor); Hardcover - 571 pages; 2nd edition (January 15, 1999), Lippincott, Williams & Wilkins Publishers; ISBN: 0397518579; http://www.amazon.com/exec/obidos/ASIN/0397518579/icongroupinterna · Neurology in Clinical Practice: Volume I: Principles of Diagnosis and Management, Volume II: The Neurological Disorders (2-Volume Set, Includes a 12-Month Subscription to the Online Edition) by W. G. Physician Guidelines and Databases 237 Bradley, et al; Hardcover - 2413 pages, 3rd edition, Vol 1-2 (January 15, 2000), Butterworth-Heinemann; ISBN: 0750699736; http://www.amazon.com/exec/obidos/ASIN/0750699736/icongroupinterna · Neuroscience: Exploring the Brain by Mark F. Bear, et al; Hardcover - 855 pages, 2nd edition (January 15, 2001), Lippincott, Williams & Wilkins Publishers; ISBN: 0683305964; http://www.amazon.com/exec/obidos/ASIN/0683305964/icongroupinterna · Office Practice of Neurology by Martain A. Samuels, Steven F. Feske; Hardcover, Churchill Livingstone; ISBN: 0443065578; http://www.amazon.com/exec/obidos/ASIN/0443065578/icongroupinterna · Patient-Based Approaches to Cognitive Neuroscience by Martha J. Farah (Editor), Todd E. Feinberg (Editor); Paperback - 425 pages (April 3, 2000), MIT Press; ISBN: 0262561239; http://www.amazon.com/exec/obidos/ASIN/0262561239/icongroupinterna · Principles of Neural Science by Eric R. Kandel (Editor), et al; Hardcover 1414 pages, 4th edition (January 5, 2000), McGraw-Hill Professional Publishing; ISBN: 0838577016; http://www.amazon.com/exec/obidos/ASIN/0838577016/icongroupinterna · Review Manual for Neurology in Clinical Practice by Karl E. Misulis, et al; Paperback, Butterworth-Heinemann Medical; ISBN: 0750671920; http://www.amazon.com/exec/obidos/ASIN/0750671920/icongroupinterna Vocabulary Builder Alopecia: Baldness; absence of the hair from skin areas where it normally is present. [EU] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Hypogonadism: A condition resulting from or characterized by abnormally decreased functional activity of the gonads, with retardation of growth and sexual development. [EU] Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulin- 238 Seizures and Epilepsy dependent diabetes mellitus. [NIH] Nervousness: Excessive excitability and irritability, with mental and physical unrest. [EU] Perspiration: Sweating; the functional secretion of sweat. [EU] Dissertations 239 CHAPTER 10. DISSERTATIONS ON SEIZURES AND EPILEPSY Overview University researchers are active in studying almost all known diseases. The result of research is often published in the form of Doctoral or Master’s dissertations. You should understand, therefore, that applied diagnostic procedures and/or therapies can take many years to develop after the thesis that proposed the new technique or approach was written. In this chapter, we will give you a bibliography on recent dissertations relating to seizures and epilepsy. You can read about these in more detail using the Internet or your local medical library. We will also provide you with information on how to use the Internet to stay current on dissertations. Dissertations on Seizures and Epilepsy ProQuest Digital Dissertations is the largest archive of academic dissertations available. From this archive, we have compiled the following list covering dissertations devoted to seizures and epilepsy. You will see that the information provided includes the dissertation’s title, its author, and the author’s institution. To read more about the following, simply use the Internet address indicated. The following covers recent dissertations dealing with seizures and epilepsy: · A Study of Subjective Symptoms Associated with Seizure Disorders in Adolescents by Elaine Fletcher-Janzen, EDD from the College of William and Mary, 1993, 115 pages http://wwwlib.umi.com/dissertations/fullcit/9414206 240 Seizures and Epilepsy Keeping Current As previously mentioned, an effective way to stay current on dissertations dedicated to seizures and epilepsy is to use the database called ProQuest Digital Dissertations via the Internet, located at the following Web address: http://wwwlib.umi.com/dissertations. The site allows you to freely access the last two years of citations and abstracts. Ask your medical librarian if the library has full and unlimited access to this database. From the library, you should be able to do more complete searches than with the limited 2-year access available to the general public. 241 PART III. APPENDICES ABOUT PART III Part III is a collection of appendices on general medical topics which may be of interest to patients with seizures and epilepsy and related conditions. Researching Your Medications 243 APPENDIX A. RESEARCHING YOUR MEDICATIONS Overview There are a number of sources available on new or existing medications which could be prescribed to patients with seizures and epilepsy. While a number of hard copy or CD-Rom resources are available to patients and physicians for research purposes, a more flexible method is to use Internetbased databases. In this chapter, we will begin with a general overview of medications. We will then proceed to outline official recommendations on how you should view your medications. You may also want to research medications that you are currently taking for other conditions as they may interact with medications for seizures and epilepsy. Research can give you information on the side effects, interactions, and limitations of prescription drugs used in the treatment of seizures and epilepsy. Broadly speaking, there are two sources of information on approved medications: public sources and private sources. We will emphasize free-to-use public sources. Your Medications: The Basics40 The Agency for Health Care Research and Quality has published extremely useful guidelines on how you can best participate in the medication aspects of seizures and epilepsy. Taking medicines is not always as simple as swallowing a pill. It can involve many steps and decisions each day. The AHCRQ recommends that patients with seizures and epilepsy take part in treatment decisions. Do not be afraid to ask questions and talk about your concerns. By taking a moment to ask questions early, you may avoid 40 This section is adapted from AHCRQ: http://www.ahcpr.gov/consumer/ncpiebro.htm. 244 Seizures and Epilepsy problems later. Here are some points to cover each time a new medicine is prescribed: · Ask about all parts of your treatment, including diet changes, exercise, and medicines. · Ask about the risks and benefits of each medicine or other treatment you might receive. · Ask how often you or your doctor will check for side effects from a given medication. Do not hesitate to ask what is important to you about your medicines. You may want a medicine with the fewest side effects, or the fewest doses to take each day. You may care most about cost, or how the medicine might affect how you live or work. Or, you may want the medicine your doctor believes will work the best. Telling your doctor will help him or her select the best treatment for you. Do not be afraid to “bother” your doctor with your concerns and questions about medications for seizures and epilepsy. You can also talk to a nurse or a pharmacist. They can help you better understand your treatment plan. Feel free to bring a friend or family member with you when you visit your doctor. Talking over your options with someone you trust can help you make better choices, especially if you are not feeling well. Specifically, ask your doctor the following: · The name of the medicine and what it is supposed to do. · How and when to take the medicine, how much to take, and for how long. · What food, drinks, other medicines, or activities you should avoid while taking the medicine. · What side effects the medicine may have, and what to do if they occur. · If you can get a refill, and how often. · About any terms or directions you do not understand. · What to do if you miss a dose. · If there is written information you can take home (most pharmacies have information sheets on your prescription medicines; some even offer large-print or Spanish versions). Do not forget to tell your doctor about all the medicines you are currently taking (not just those for seizures and epilepsy). This includes prescription Researching Your Medications 245 medicines and the medicines that you buy over the counter. Then your doctor can avoid giving you a new medicine that may not work well with the medications you take now. When talking to your doctor, you may wish to prepare a list of medicines you currently take, the reason you take them, and how you take them. Be sure to include the following information for each: · Name of medicine · Reason taken · Dosage · Time(s) of day Also include any over-the-counter medicines, such as: · Laxatives · Diet pills · Vitamins · Cold medicine · Aspirin or other pain, headache, or fever medicine · Cough medicine · Allergy relief medicine · Antacids · Sleeping pills · Others (include names) Learning More about Your Medications Because of historical investments by various organizations and the emergence of the Internet, it has become rather simple to learn about the medications your doctor has recommended for seizures and epilepsy. One such source is the United States Pharmacopeia. In 1820, eleven physicians met in Washington, D.C. to establish the first compendium of standard drugs for the United States. They called this compendium the “U.S. Pharmacopeia (USP).” Today, the USP is a non-profit organization consisting of 800 volunteer scientists, eleven elected officials, and 400 representatives of state associations and colleges of medicine and pharmacy. The USP is located in Rockville, Maryland, and its home page is located at www.usp.org. The USP currently provides standards for over 3,700 medications. The resulting 246 Seizures and Epilepsy USP DIÒ Advice for the PatientÒ can be accessed through the National Library of Medicine of the National Institutes of Health. The database is partially derived from lists of federally approved medications in the Food and Drug Administration’s (FDA) Drug Approvals database.41 While the FDA database is rather large and difficult to navigate, the Phamacopeia is both user-friendly and free to use. It covers more than 9,000 prescription and over-the-counter medications. To access this database, simply type the following hyperlink into your Web browser: http://www.nlm.nih.gov/medlineplus/druginformation.html. To view examples of a given medication (brand names, category, description, preparation, proper use, precautions, side effects, etc.), simply follow the hyperlinks indicated within the United States Pharmacopoeia (USP). It is important that you take the time to read the disclaimer by the USP (http://www.nlm.nih.gov/medlineplus/drugdisclaimer.html) before using the information provided. Of course, we as editors cannot be certain as to what medications you are taking. Therefore, we have compiled a list of medications associated with the treatment of seizures and epilepsy. Once again, due to space limitations, we only list a sample of medications and provide hyperlinks to ample documentation (e.g. typical dosage, side effects, drug-interaction risks, etc.). The following drugs have been mentioned in the Pharmacopeia and other sources as being potentially applicable to seizures and epilepsy: Anesthetics, General · Systemic - U.S. Brands: Amidate; Brevital; Diprivan; Ethrane; Fluothane; Forane; Ketalar; Penthrane; Pentothal http://www.nlm.nih.gov/medlineplus/druginfo/anestheticsgene ralsystemic203043.html Anticonvulsants, Hydantoin · Systemic - U.S. Brands: Cerebyx; Dilantin; Dilantin Infatabs; Dilantin Kapseals; Dilantin-125; Mesantoin; Peganone; Phenytex http://www.nlm.nih.gov/medlineplus/druginfo/anticonvulsants hydantoinsystem202052.html Though cumbersome, the FDA database can be freely browsed at the following site: www.fda.gov/cder/da/da.htm. 41 Researching Your Medications 247 Anticonvulsants, Succinimide · Systemic - U.S. Brands: Celontin; Zarontin http://www.nlm.nih.gov/medlineplus/druginfo/anticonvulsants succinimidesyst202053.html Benzodiazepines · Systemic - U.S. Brands: Alprazolam Intensol; Ativan; Dalmane; Diastat; Diazepam Intensol; Dizac; Doral; Halcion; Klonopin; Librium; Lorazepam Intensol; Paxipam; ProSom; Restoril; Serax; Tranxene T-Tab; Tranxene-SD; Tranxene-SD Half Strength; Valium; Xanax http://www.nlm.nih.gov/medlineplus/druginfo/benzodiazepine ssystemic202084.html Bupropion · Systemic - U.S. Brands: Wellbutrin; Zyban http://www.nlm.nih.gov/medlineplus/druginfo/bupropionsyste mic202098.html Carbamazepine · Systemic - U.S. Brands: Atretol; Carbatrol; Epitol; Tegretol; Tegretol-XR http://www.nlm.nih.gov/medlineplus/druginfo/carbamazepines ystemic202111.html Carbonic Anhydrase Inhibitors · Systemic - U.S. Brands: Ak-Zol; Daranide; Dazamide; Diamox; Diamox Sequels; MZM; Neptazane; Storzolamide http://www.nlm.nih.gov/medlineplus/druginfo/carbonicanhydr aseinhibitorssys202114.html Diphtheria and Tetanus Toxoids and Pertussis Vaccine Adsorbed · Systemic - U.S. Brands: Acel-Imune; Certiva; Infanrix; Tripedia http://www.nlm.nih.gov/medlineplus/druginfo/diphtheriaandte tanustoxoidsand202201.html · Systemic - U.S. Brands: Tetramune http://www.nlm.nih.gov/medlineplus/druginfo/diphtheriaandte tanustoxoidsand202911.html 248 Seizures and Epilepsy Felbamate · Systemic - U.S. Brands: Felbatol http://www.nlm.nih.gov/medlineplus/druginfo/felbamatesyste mic202711.html Gabapentin · Systemic - U.S. Brands: Neurontin http://www.nlm.nih.gov/medlineplus/druginfo/gabapentinsyste mic202732.html Lamotrigine · Systemic - U.S. Brands: Lamictal http://www.nlm.nih.gov/medlineplus/druginfo/lamotriginesyst emic202786.html Levetiracetam · Systemic - U.S. Brands: Keppra http://www.nlm.nih.gov/medlineplus/druginfo/levetiracetamsy stemic500101.html Measles Virus Vaccine Live · Systemic - U.S. Brands: Attenuvax http://www.nlm.nih.gov/medlineplus/druginfo/measlesvirusvac cinelivesystemi202338.html Oxcarbazepine · Systemic - U.S. Brands: Trileptal http://www.nlm.nih.gov/medlineplus/druginfo/oxcarbazepines ystemic500111.html Primidone · Systemic - U.S. Brands: Myidone; Mysoline http://www.nlm.nih.gov/medlineplus/druginfo/primidonesyste mic202479.html Pyridoxine (Vitamin B6) · Systemic - U.S. Brands: Beesix; Doxine; Nestrex; Pyri; Rodex http://www.nlm.nih.gov/medlineplus/druginfo/pyridoxinevita minb6systemic202493.html Researching Your Medications 249 Tetanus Immune Globulin · Systemic - U.S. Brands: BayTet http://www.nlm.nih.gov/medlineplus/druginfo/tetanusimmune globulinsystemic202908.html Tiagabine · Systemic - U.S. Brands: Gabitril http://www.nlm.nih.gov/medlineplus/druginfo/tiagabinesystem ic203392.html Topiramate · Systemic - U.S. Brands: Topamax http://www.nlm.nih.gov/medlineplus/druginfo/topiramatesyste mic203085.html Valproic Acid · Systemic - U.S. Brands: Depacon; Depakene; Depakote; Depakote Sprinkle http://www.nlm.nih.gov/medlineplus/druginfo/valproicacidsyst emic202588.html Zonisamide · Systemic - U.S. Brands: Zonegran http://www.nlm.nih.gov/medlineplus/druginfo/zonisamidesyst emic500137.html Commercial Databases In addition to the medications listed in the USP above, a number of commercial sites are available by subscription to physicians and their institutions. You may be able to access these sources from your local medical library or your doctor’s office. Reuters Health Drug Database The Reuters Health Drug Database can be searched by keyword at the hyperlink: http://www.reutershealth.com/frame2/drug.html. 250 Seizures and Epilepsy Mosby’s GenRx Mosby’s GenRx database (also available on CD-Rom and book format) covers 45,000 drug products including generics and international brands. It provides prescribing information, drug interactions, and patient information. Information can be obtained at the following hyperlink: http://www.genrx.com/Mosby/PhyGenRx/group.html. Physicians Desk Reference The Physicians Desk Reference database (also available in CD-Rom and book format) is a full-text drug database. The database is searchable by brand name, generic name or by indication. It features multiple drug interactions reports. Information can be obtained at the following hyperlink: http://physician.pdr.net/physician/templates/en/acl/psuser_t.htm. Other Web Sites A number of additional Web sites discuss drug information. As an example, you may like to look at www.drugs.com which reproduces the information in the Pharmacopeia as well as commercial information. You may also want to consider the Web site of the Medical Letter, Inc. which allows users to download articles on various drugs and therapeutics for a nominal fee: http://www.medletter.com/. Contraindications and Interactions (Hidden Dangers) Some of the medications mentioned in the previous discussions can be problematic for patients with seizures and epilepsy--not because they are used in the treatment process, but because of contraindications, or side effects. Medications with contraindications are those that could react with drugs used to treat seizures and epilepsy or potentially create deleterious side effects in patients with seizures and epilepsy. You should ask your physician about any contraindications, especially as these might apply to other medications that you may be taking for common ailments. Drug-drug interactions occur when two or more drugs react with each other. This drug-drug interaction may cause you to experience an unexpected side effect. Drug interactions may make your medications less effective, cause Researching Your Medications 251 unexpected side effects, or increase the action of a particular drug. Some drug interactions can even be harmful to you. Be sure to read the label every time you use a nonprescription or prescription drug, and take the time to learn about drug interactions. These precautions may be critical to your health. You can reduce the risk of potentially harmful drug interactions and side effects with a little bit of knowledge and common sense. Drug labels contain important information about ingredients, uses, warnings, and directions which you should take the time to read and understand. Labels also include warnings about possible drug interactions. Further, drug labels may change as new information becomes available. This is why it’s especially important to read the label every time you use a medication. When your doctor prescribes a new drug, discuss all over-thecounter and prescription medications, dietary supplements, vitamins, botanicals, minerals and herbals you take as well as the foods you eat. Ask your pharmacist for the package insert for each prescription drug you take. The package insert provides more information about potential drug interactions. A Final Warning At some point, you may hear of alternative medications from friends, relatives, or in the news media. Advertisements may suggest that certain alternative drugs can produce positive results for patients with seizures and epilepsy. Exercise caution--some of these drugs may have fraudulent claims, and others may actually hurt you. The Food and Drug Administration (FDA) is the official U.S. agency charged with discovering which medications are likely to improve the health of patients with seizures and epilepsy. The FDA warns patients to watch out for42: · Secret formulas (real scientists share what they know) · Amazing breakthroughs or miracle cures (real breakthroughs don’t happen very often; when they do, real scientists do not call them amazing or miracles) · Quick, painless, or guaranteed cures · If it sounds too good to be true, it probably isn’t true. 42 This section has been adapted from http://www.fda.gov/opacom/lowlit/medfraud.html. 252 Seizures and Epilepsy If you have any questions about any kind of medical treatment, the FDA may have an office near you. Look for their number in the blue pages of the phone book. You can also contact the FDA through its toll-free number, 1888-INFO-FDA (1-888-463-6332), or on the World Wide Web at www.fda.gov. General References In addition to the resources provided earlier in this chapter, the following general references describe medications (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Current Therapy in Neurologic Disease by Richard T. Johnson, et al; Hardcover - 457 pages, 6th edition (January 15, 2002), Mosby-Year Book; ISBN: 0323014720; http://www.amazon.com/exec/obidos/ASIN/0323014720/icongroupinterna · Emerging Pharmacological Tools in Clinical Neurology by MedPanel Inc. (Author); Digital - 66 pages, MarketResearch.com; ISBN: B00005RBN8; http://www.amazon.com/exec/obidos/ASIN/B00005RBN8/icongroupinter na · Goodman & Gilman’s The Pharmacological Basis of Therapeutics by Joel G. Hardman (Editor), Lee E. Limbird; Hardcover - 1825 pages, 10th edition (August 13, 2001), McGraw-Hill Professional Publishing; ISBN: 0071354697; http://www.amazon.com/exec/obidos/ASIN/0071354697/icongroupinterna · Neurology and General Medicine by Michael J. Aminoff (Editor), Hardcover - 992 pages, 3rd edition (March 15, 2001), Churchill Livingstone; ISBN: 0443065713; http://www.amazon.com/exec/obidos/ASIN/0443065713/icongroupinterna · Neurology and Medicine by Hughes Perkins; Hardcover - 415 pages, 1st edition (December 15, 1999), B. M. J. Books; ISBN: 0727912240; http://www.amazon.com/exec/obidos/ASIN/0727912240/icongroupinterna · Pharmacological Management of Neurological and Psychiatric Disorders by S. J. Enna (Editor), et al; Hardcover - 736 pages, 1st edition, McGrawHill Professional Publishing; ISBN: 0070217645; http://www.amazon.com/exec/obidos/ASIN/0070217645/icongroupinterna Researching Your Medications 253 Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Benzodiazepines: A two-ring heterocyclic compound consisting of a benzene ring fused to a diazepine ring. Permitted is any degree of hydrogenation, any substituents and any H-isomer. [NIH] Lorazepam: An anti-anxiety agent with few side effects. It also has hypnotic, anticonvulsant, and considerable sedative properties and has been proposed as a preanesthetic agent. [NIH] Toxoids: Preparations of pathogenic organisms or their derivatives made nontoxic and intended for active immunologic prophylaxis. They include deactivated toxins. [NIH] Researching Alternative Medicine 255 APPENDIX B. RESEARCHING ALTERNATIVE MEDICINE Overview Complementary and alternative medicine (CAM) is one of the most contentious aspects of modern medical practice. You may have heard of these treatments on the radio or on television. Maybe you have seen articles written about these treatments in magazines, newspapers, or books. Perhaps your friends or doctor have mentioned alternatives. In this chapter, we will begin by giving you a broad perspective on complementary and alternative therapies. Next, we will introduce you to official information sources on CAM relating to seizures and epilepsy. Finally, at the conclusion of this chapter, we will provide a list of readings on seizures and epilepsy from various authors. We will begin, however, with the National Center for Complementary and Alternative Medicine’s (NCCAM) overview of complementary and alternative medicine. What Is CAM?43 Complementary and alternative medicine (CAM) covers a broad range of healing philosophies, approaches, and therapies. Generally, it is defined as those treatments and healthcare practices which are not taught in medical schools, used in hospitals, or reimbursed by medical insurance companies. Many CAM therapies are termed “holistic,” which generally means that the healthcare practitioner considers the whole person, including physical, mental, emotional, and spiritual health. Some of these therapies are also known as “preventive,” which means that the practitioner educates and 43 Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/faq/index.html#what-is. 256 Seizures and Epilepsy treats the person to prevent health problems from arising, rather than treating symptoms after problems have occurred. People use CAM treatments and therapies in a variety of ways. Therapies are used alone (often referred to as alternative), in combination with other alternative therapies, or in addition to conventional treatment (sometimes referred to as complementary). Complementary and alternative medicine, or “integrative medicine,” includes a broad range of healing philosophies, approaches, and therapies. Some approaches are consistent with physiological principles of Western medicine, while others constitute healing systems with non-Western origins. While some therapies are far outside the realm of accepted Western medical theory and practice, others are becoming established in mainstream medicine. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease. Some commonly used methods of complementary or alternative therapy include mind/body control interventions such as visualization and relaxation, manual healing including acupressure and massage, homeopathy, vitamins or herbal products, and acupuncture. What Are the Domains of Alternative Medicine?44 The list of CAM practices changes continually. The reason being is that these new practices and therapies are often proved to be safe and effective, and therefore become generally accepted as “mainstream” healthcare practices. Today, CAM practices may be grouped within five major domains: (1) alternative medical systems, (2) mind-body interventions, (3) biologicallybased treatments, (4) manipulative and body-based methods, and (5) energy therapies. The individual systems and treatments comprising these categories are too numerous to list in this sourcebook. Thus, only limited examples are provided within each. Alternative Medical Systems Alternative medical systems involve complete systems of theory and practice that have evolved independent of, and often prior to, conventional biomedical approaches. Many are traditional systems of medicine that are 44 Adapted from the NCCAM: http://nccam.nih.gov/nccam/fcp/classify/index.html. Researching Alternative Medicine 257 practiced by individual cultures throughout the world, including a number of venerable Asian approaches. Traditional oriental medicine emphasizes the balance or disturbances of qi (pronounced chi) or vital energy in health and disease, respectively. Traditional oriental medicine consists of a group of techniques and methods including acupuncture, herbal medicine, oriental massage, and qi gong (a form of energy therapy). Acupuncture involves stimulating specific anatomic points in the body for therapeutic purposes, usually by puncturing the skin with a thin needle. Ayurveda is India’s traditional system of medicine. Ayurvedic medicine (meaning “science of life”) is a comprehensive system of medicine that places equal emphasis on body, mind, and spirit. Ayurveda strives to restore the innate harmony of the individual. Some of the primary Ayurvedic treatments include diet, exercise, meditation, herbs, massage, exposure to sunlight, and controlled breathing. Other traditional healing systems have been developed by the world’s indigenous populations. These populations include Native American, Aboriginal, African, Middle Eastern, Tibetan, and Central and South American cultures. Homeopathy and naturopathy are also examples of complete alternative medicine systems. Homeopathic medicine is an unconventional Western system that is based on the principle that “like cures like,” i.e., that the same substance that in large doses produces the symptoms of an illness, in very minute doses cures it. Homeopathic health practitioners believe that the more dilute the remedy, the greater its potency. Therefore, they use small doses of specially prepared plant extracts and minerals to stimulate the body’s defense mechanisms and healing processes in order to treat illness. Naturopathic medicine is based on the theory that disease is a manifestation of alterations in the processes by which the body naturally heals itself and emphasizes health restoration rather than disease treatment. Naturopathic physicians employ an array of healing practices, including the following: diet and clinical nutrition, homeopathy, acupuncture, herbal medicine, hydrotherapy (the use of water in a range of temperatures and methods of applications), spinal and soft-tissue manipulation, physical therapies (such as those involving electrical currents, ultrasound, and light), therapeutic counseling, and pharmacology. 258 Seizures and Epilepsy Mind-Body Interventions Mind-body interventions employ a variety of techniques designed to facilitate the mind’s capacity to affect bodily function and symptoms. Only a select group of mind-body interventions having well-documented theoretical foundations are considered CAM. For example, patient education and cognitive-behavioral approaches are now considered “mainstream.” On the other hand, complementary and alternative medicine includes meditation, certain uses of hypnosis, dance, music, and art therapy, as well as prayer and mental healing. Biological-Based Therapies This category of CAM includes natural and biological-based practices, interventions, and products, many of which overlap with conventional medicine’s use of dietary supplements. This category includes herbal, special dietary, orthomolecular, and individual biological therapies. Herbal therapy employs an individual herb or a mixture of herbs for healing purposes. An herb is a plant or plant part that produces and contains chemical substances that act upon the body. Special diet therapies, such as those proposed by Drs. Atkins, Ornish, Pritikin, and Weil, are believed to prevent and/or control illness as well as promote health. Orthomolecular therapies aim to treat disease with varying concentrations of chemicals such as magnesium, melatonin, and mega-doses of vitamins. Biological therapies include, for example, the use of laetrile and shark cartilage to treat cancer and the use of bee pollen to treat autoimmune and inflammatory diseases. Manipulative and Body-Based Methods This category includes methods that are based on manipulation and/or movement of the body. For example, chiropractors focus on the relationship between structure and function, primarily pertaining to the spine, and how that relationship affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool. In contrast, osteopaths place particular emphasis on the musculoskeletal system and practice osteopathic manipulation. Osteopaths believe that all of the body’s systems work together and that disturbances in one system may have an impact upon function elsewhere in the body. Massage therapists manipulate the soft tissues of the body to normalize those tissues. Researching Alternative Medicine 259 Energy Therapies Energy therapies focus on energy fields originating within the body (biofields) or those from other sources (electromagnetic fields). Biofield therapies are intended to affect energy fields (the existence of which is not yet experimentally proven) that surround and penetrate the human body. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in or through these fields. Examples include qi gong, reiki and therapeutic touch. Qi gong is a component of traditional oriental medicine that combines movement, meditation, and regulation of breathing to enhance the flow of vital energy (qi) in the body, improve blood circulation, and enhance immune function. Reiki, the Japanese word representing Universal Life Energy, is based on the belief that, by channeling spiritual energy through the practitioner, the spirit is healed and, in turn, heals the physical body. Therapeutic Touch is derived from the ancient technique of “laying-on of hands.” It is based on the premises that the therapist’s healing force affects the patient’s recovery and that healing is promoted when the body’s energies are in balance. By passing their hands over the patient, these healers identify energy imbalances. Bioelectromagnetic-based therapies involve the unconventional use of electromagnetic fields to treat illnesses or manage pain. These therapies are often used to treat asthma, cancer, and migraine headaches. Types of electromagnetic fields which are manipulated in these therapies include pulsed fields, magnetic fields, and alternating current or direct current fields. Can Alternatives Affect My Treatment? A critical issue in pursuing complementary alternatives mentioned thus far is the risk that these might have undesirable interactions with your medical treatment. It becomes all the more important to speak with your doctor who can offer advice on the use of alternatives. Official sources confirm this view. Though written for women, we find that the National Women’s Health Information Center’s advice on pursuing alternative medicine is appropriate for patients of both genders and all ages.45 45 Adapted from http://www.4woman.gov/faq/alternative.htm. 260 Seizures and Epilepsy Is It Okay to Want Both Traditional and Alternative or Complementary Medicine? Should you wish to explore non-traditional types of treatment, be sure to discuss all issues concerning treatments and therapies with your healthcare provider, whether a physician or practitioner of complementary and alternative medicine. Competent healthcare management requires knowledge of both conventional and alternative therapies you are taking for the practitioner to have a complete picture of your treatment plan. The decision to use complementary and alternative treatments is an important one. Consider before selecting an alternative therapy, the safety and effectiveness of the therapy or treatment, the expertise and qualifications of the healthcare practitioner, and the quality of delivery. These topics should be considered when selecting any practitioner or therapy. Finding CAM References on Seizures and Epilepsy Having read the previous discussion, you may be wondering which complementary or alternative treatments might be appropriate for seizures and epilepsy. For the remainder of this chapter, we will direct you to a number of official sources which can assist you in researching studies and publications. Some of these articles are rather technical, so some patience may be required. National Center for Complementary and Alternative Medicine The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health (http://nccam.nih.gov) has created a link to the National Library of Medicine’s databases to allow patients to search for articles that specifically relate to seizures and epilepsy and complementary medicine. To search the database, go to the following Web site: www.nlm.nih.gov/nccam/camonpubmed.html. Select “CAM on PubMed.” Enter “seizures and epilepsy” (or synonyms) into the search box. Click “Go.” The following references provide information on particular aspects of complementary and alternative medicine (CAM) that are related to seizures and epilepsy: · A neurobehavioral treatment for unilateral complex partial seizure disorders: a comparison of right- and left-hemisphere patients. Author(s): Joy Andrews D, Reiter JM, Schonfeld W, Kastl A, Denning P. Researching Alternative Medicine 261 Source: Seizure: the Journal of the British Epilepsy Association. 2000 April; 9(3): 189-97. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10775515&dopt=Abstract · Adaptive electric field control of epileptic seizures. Author(s): Gluckman BJ, Nguyen H, Weinstein SL, Schiff SJ. Source: The Journal of Neuroscience : the Official Journal of the Society for Neuroscience. 2001 January 15; 21(2): 590-600. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11160438&dopt=Abstract · Anticonvulsant activity of the leaf essential oil of Laurus nobilis against pentylenetetrazole- and maximal electroshock-induced seizures. Author(s): Sayyah M, Valizadeh J, Kamalinejad M. Source: Phytomedicine : International Journal of Phytotherapy and Phytopharmacology. 2002 April; 9(3): 212-6. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12046861&dopt=Abstract · Anticonvulsive and free radical scavenging activities of vanillyl alcohol in ferric chloride-induced epileptic seizures in Sprague-Dawley rats. Author(s): Hsieh CL, Chang CH, Chiang SY, Li TC, Tang NY, Pon CZ, Hsieh CT, Lin JG. Source: Life Sciences. 2000; 67(10): 1185-95. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=10954052&dopt=Abstract · Epilepsy and seizure disorders: a review of literature relative to chiropractic care of children. Author(s): Pistolese RA. Source: Journal of Manipulative and Physiological Therapeutics. 2001 March-April; 24(3): 199-205. Review. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11313616&dopt=Abstract · Epileptic seizures, some dyskinesia and the 'alpha tape'. Author(s): Blum A, Blum B. Source: Seizure : the Journal of the British Epilepsy Association. 2002 March; 11(2): 138. 262 Seizures and Epilepsy http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11945103&dopt=Abstract · Generalized convulsions after consuming a large amount of gingko nuts. Author(s): Miwa H, Iijima M, Tanaka S, Mizuno Y. Source: Epilepsia. 2001 February; 42(2): 280-1. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11240603&dopt=Abstract · Ginkgo biloba precipitating epileptic seizures. Author(s): Granger AS. Source: Age and Ageing. 2001 November; 30(6): 523-5. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11742783&dopt=Abstract · Increased sensitivity to seizures in repeated exposures to hyperbaric oxygen: role of NOS activation. Author(s): Chavko M, Xing G, Keyser DO. Source: Brain Research. 2001 May 11; 900(2): 227-33. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11334802&dopt=Abstract · Melatonin might be one possible medium of electroacupuncture antiseizures. Author(s): Chao DM, Chen G, Cheng JS. Source: Acupunct Electrother Res. 2001; 26(1-2): 39-48. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11394492&dopt=Abstract · Neurofeedback treatment of pseudoseizure disorder. Author(s): Swingle PG. Source: Biological Psychiatry. 1998 December 1; 44(11): 1196-9. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=9836025&dopt=Abstract · Outpatient video EEG recording in the diagnosis of non-epileptic seizures: a randomised controlled trial of simple suggestion techniques. Author(s): McGonigal A, Oto M, Russell AJ, Greene J, Duncan R. Source: Journal of Neurology, Neurosurgery, and Psychiatry. 2002 April; 72(4): 549-51. Researching Alternative Medicine 263 http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11909925&dopt=Abstract · Psychological approaches to the prevention and inhibition of nocturnal epileptic seizures: a meta-analysis of 70 case studies. Author(s): Muller B. Source: Seizure: the Journal of the British Epilepsy Association. 2001 January; 10(1): 13-33. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11181094&dopt=Abstract · The role of hypnosis in the detection of psychogenic seizures. Author(s): Martinez-Taboas A. Source: Am J Clin Hypn. 2002 July; 45(1): 11-20. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=12116610&dopt=Abstract · Vagal nerve stimulation does not unkindle seizures. Author(s): Dasheiff RM, Sandberg T, Thompson J, Arrambide S. Source: Journal of Clinical Neurophysiology : Official Publication of the American Electroencephalographic Society. 2001 January; 18(1): 68-74. http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db= PubMed&list_uids=11290941&dopt=Abstract Additional Web Resources A number of additional Web sites offer encyclopedic information covering CAM and related topics. The following is a representative sample: · Alternative Medicine Foundation, Inc.: http://www.herbmed.org/ · AOL: http://search.aol.com/cat.adp?id=169&layer=&from=subcats · Chinese Medicine: http://www.newcenturynutrition.com/ · drkoop.comÒ: http://www.drkoop.com/InteractiveMedicine/IndexC.html · Family Village: http://www.familyvillage.wisc.edu/med_altn.htm · Google: http://directory.google.com/Top/Health/Alternative/ · Healthnotes: http://www.thedacare.org/healthnotes/ · Open Directory Project: http://dmoz.org/Health/Alternative/ 264 Seizures and Epilepsy · TPN.com: http://www.tnp.com/ · Yahoo.com: http://dir.yahoo.com/Health/Alternative_Medicine/ · WebMDÒHealth: http://my.webmd.com/drugs_and_herbs · WellNet: http://www.wellnet.ca/herbsa-c.htm · WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html The following is a specific Web list relating to Seizures and Epilepsy; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: · General Overview Alcohol Withdrawal Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Alcohol.htm Allergic Reaction, Anaphylaxis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ana phylaxiscc.html Alzheimer's Disease Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Alz heimersDiseasecc.html Anaphylaxis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ana phylaxiscc.html Researching Alternative Medicine 265 Anorexia Nervosa Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ano rexiaNervosacc.html Autism Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Autism.htm Blood Sugar, Low Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp oglycemiacc.html Brain Cancer Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Can cerBraincc.html Brain Inflammation, Meningitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Me ningitiscc.html Brain Inflammation, Viral Encephalitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Enc ephalitisViralcc.html 266 Seizures and Epilepsy Cancer, Brain Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Can cerBraincc.html Celiac Disease Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Celiac_Disease.ht m Cutaneous Drug Reactions Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Cut aneousDrugReactionscc.html Dementia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/De mentiacc.html Depression Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Dep ressioncc.html Drug Reactions, Cutaneous Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Cut aneousDrugReactionscc.html Researching Alternative Medicine 267 Eating Disorders, Anorexia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ano rexiaNervosacc.html Encephalitis, Viral Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Enc ephalitisViralcc.html Endocarditis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/End ocarditiscc.html Epilepsy Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Epilepsy.htm Epilepsy Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Seiz ureDisorderscc.html Fainting Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Fain tingcc.html 268 Seizures and Epilepsy Fever of Unknown Origin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Fev erofUnknownOrigincc.html Food Poisoning Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Foo dPoisoningcc.html Gout Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000291.html Heart Infection, Endocarditis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/End ocarditiscc.html Hypoglycemia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp oglycemiacc.html Hypoparathyroidism Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp oparathyroidismcc.html Researching Alternative Medicine 269 Low Blood Sugar Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp oglycemiacc.html Lung Cancer Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Cancer_Lung.htm Lupus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Syst emicLupusErythematosuscc.html Malabsorption Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Malabsorption.ht m Meningitis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Me ningitiscc.html Migraine Headaches Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Migraine.htm Migraine Headaches Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000279.html 270 Seizures and Epilepsy Obesity Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Obe sitycc.html Parathyroid, Underactive Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Hyp oparathyroidismcc.html Phenylketonuria Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Phenylketonuria.h tm Preeclampsia Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Preeclampsia.htm Preeclampsia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Pree clampsiacc.html Roseola Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ros eolacc.html Researching Alternative Medicine 271 Rubella Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Rub ellacc.html Sarcoidosis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Sarc oidosiscc.html Seizure disorders Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsLookups/Uses/ seizuredisorders.html Seizure Disorders Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Seiz ureDisorderscc.html Senile Dementia Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/De mentiacc.html Serum Sickness Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Ser umSicknesscc.html 272 Seizures and Epilepsy Skin Disorders, Drug Reactions Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Cut aneousDrugReactionscc.html Stroke Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Stroke.htm Stroke Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Stro kecc.html Syncope Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Fain tingcc.html Systemic Lupus Erythematosus Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Concern/Lupus.htm Systemic Lupus Erythematosus Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsConditions/Syst emicLupusErythematosuscc.html Varicose Veins Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000303.html Researching Alternative Medicine 273 · Alternative Therapy Aromatherapy Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsModalities/Aro matherapycm.html Magnet therapy Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 715,00.html · Chinese Medicine Baifuzi Alternative names: Giant Typhonium Rhizome; Rhizoma Typhonii Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Baolong Wan Alternative names: Baolong Pills Source: Pharmacopoeia Commission of the Ministry of Health, People's Republic of China Hyperlink: http://www.newcenturynutrition.com/cgilocal/patent_herbs_db/db.cgi?db=default&Chinese=Baolong%20Wa n&mh=10&sb=---&view_records=View+Records Chonglou Alternative names: Paris Root; Rhizoma Paridis Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Dilong Alternative names: Earthworm; Pheretima Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Fuzi Alternative names: Beivedere Fruit; Difuzi; Fructus Kochiae Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ 274 Seizures and Epilepsy Gouteng Alternative names: Gambir Plant; Ramulus Uncariae cum Uncis Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Hupo Baolong Wan Alternative names: Hupo Baolong Pills Source: Pharmacopoeia Commission of the Ministry of Health, People's Republic of China Hyperlink: http://www.newcenturynutrition.com/cgilocal/patent_herbs_db/db.cgi?db=default&Chinese=Hupo%20Baolo ng%20Wan&mh=10&sb=---&view_records=View+Records Jinmengshi Alternative names: Mica-schist; Lapis Micas Aureus Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Jufang Zhibao San Alternative names: Jufang Zhibao Powder Source: Pharmacopoeia Commission of the Ministry of Health, People's Republic of China Hyperlink: http://www.newcenturynutrition.com/cgilocal/patent_herbs_db/db.cgi?db=default&Chinese=Jufang%20Zhiba o%20San&mh=10&sb=---&view_records=View+Records Niuhuang Alternative names: Cow-bezoar; Calculus Bovis Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Niuhuang Baolong Wan Alternative names: Niuhuang Baolong Pills Source: Pharmacopoeia Commission of the Ministry of Health, People's Republic of China Hyperlink: http://www.newcenturynutrition.com/cgilocal/patent_herbs_db/db.cgi?db=default&Chinese=Niuhuang%20B aolong%20Wan&mh=10&sb=---&view_records=View+Records Researching Alternative Medicine 275 Niuhuang Zhenjing Wan Alternative names: Niuhuang Zhenjing Pills Source: Pharmacopoeia Commission of the Ministry of Health, People's Republic of China Hyperlink: http://www.newcenturynutrition.com/cgilocal/patent_herbs_db/db.cgi?db=default&Chinese=Niuhuang%20Z henjing%20Wan&mh=10&sb=---&view_records=View+Records Qingdai Alternative names: Natural Indigo; Indigo Naturalis Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Qingmengshi Alternative names: Chlorite Schist; Lapis Chloriti Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Quanxie Alternative names: Scorpion; Scorpio Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Shetui Alternative names: Snake Slough; Periostracum Serpentis Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Shuiniujiao Alternative names: Buffalo Horn; Cornu Bubali Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Suhexiang Alternative names: Storax; Styrax Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Tianma Alternative names: Tall Gastrodia Tuber; Rhizoma Gastrodiae Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ 276 Seizures and Epilepsy Tiannanxing Alternative names: Jackinthepulpit Tuber; Rhizoma Arisaematis Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Wushaoshe Alternative names: Black-tail Snake; Zaocys Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ Yangjinhua Alternative names: Datura Flower; Flos Daturae Source: Chinese Materia Medica Hyperlink: http://www.newcenturynutrition.com/ · Herbs and Supplements Aminoglycosides Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsDepletions/Anti bioticMedicationsAminoglycosidescl.html Anticonvulsants Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Anticonvulsants.htm Arctostaphylos Alternative names: Bearberry; Arctostaphylos uva-ursi (L.) Spreng. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Astragalus sp Alternative names: Vetch, Rattlepod, Locoweed; Astragalus sp. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Researching Alternative Medicine 277 Ava Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/KavaKav ach.html Barbiturates Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Barbiturates.htm Benzodiazepines Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Benzodiazepines.htm Bisphosphonate Derivatives Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsDepletions/Oste oporosisMedicationsBisphosphonateDerivativescl.html Carbamazepine Alternative names: Atretol, Carbatrol, Epitol, Tegretol, Tegretol XR Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000340.html Chemotherapy Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Chemotherapy.htm Coleus Alternative names: Coleus forskohlii Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Coleus.htm 278 Seizures and Epilepsy EDTA Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Et hylenediaminetetraaceticAcidEDTAcs.html Ephedra (Ma huang) Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 777,00.html Ethylenediaminetetraacetic Acid (EDTA) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Et hylenediaminetetraaceticAcidEDTAcs.html Evening Primrose Alternative names: Oenothera biennis, Sun Drop Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Evening Primrosech.html Evening Primrose Alternative names: Oenothera biennis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsHerbs/Interacti ons/EveningPrimrosech.html Fiber Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/Fibercs.html Researching Alternative Medicine 279 Fiber Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Fi bercs.html GABA Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10027,00.html Ginkgo Alternative names: Ginkgo biloba Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Ginkgo Biloba Alternative names: Maidenhair Tree Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsHerbs/Interacti ons/GinkgoBilobach.html Ginkgo Biloba Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/GinkgoBi lobach.html Horse Chestnut Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000182.html Humulus Alternative names: Hops; Humulus lupulus L. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ 280 Seizures and Epilepsy Hyssop Alternative names: Hyssopus officinalis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Hyssop.htm Ispaghula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Ps ylliumcs.html Ispaghula Alternative names: Psyllium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/Psylliumcs.html Kava Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 798,00.html Kava Kava Alternative names: Piper methysticum, Ava Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/KavaKav ach.html LOBELIA Source: The Canadian Internet Directory for Holistic Help, WellNet, Health and Wellness Network; www.wellnet.ca Hyperlink: http://www.wellnet.ca/herbsj-l.htm Researching Alternative Medicine 281 Loop Diuretics Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsDepletions/Diur eticsLoopDiureticscl.html Mad-dog Skullcap Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Skullcap ch.html Maidenhair Tree Alternative names: Ginkgo Biloba Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsHerbs/Interacti ons/GinkgoBilobach.html Maidenhair Tree Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/GinkgoBi lobach.html Melatonin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Melatonin.htm Mistletoe Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10109,00.html 282 Seizures and Epilepsy N-Acetyl Cysteine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/N_Acetyl_Cysteine.ht m Oenothera biennis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Evening Primrosech.html Oenothera biennis Alternative names: Evening Primrose Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsHerbs/Interacti ons/EveningPrimrosech.html Oregano/Wild Marjoram Alternative names: Origanum vulgare Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Oregano.htm Passiflora Alternative names: Passion Flower; Passiflora alata L. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Passiflora incarnata Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Passionfl owerch.html Researching Alternative Medicine 283 Passionflower Alternative names: Passiflora incarnata Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Passionfl owerch.html Pennyroyal Alternative names: Hedeoma pulegoides, Mentha pulegium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Pennyroyal.htm Perphenazine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Perphenazine.htm Phenobarbital Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Phenobarbital.htm Phenobarbital Alternative names: Bellatal, Solfoton Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000343.html Pimpinella Alternative names: Anise; Pimpinella anisum (L) Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Piper methysticum Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/KavaKav ach.html 284 Seizures and Epilepsy Piper nigrum Alternative names: Black Pepper Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Plantago isphagula Alternative names: Psyllium Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/Psylliumcs.html Plantago isphagula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Ps ylliumcs.html Pregnenolone Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Pregnenolone.htm Primidone Alternative names: Mysoline Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000387.html Psyllium Alternative names: Ispaghula,Plantago isphagula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Ps ylliumcs.html Researching Alternative Medicine 285 Psyllium Alternative names: Ispaghula Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/Psylliumcs.html Rosemary Alternative names: Rosmarinus officinalis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Rosemar ych.html Rosmarinus officinalis Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Rosemar ych.html Sage Alternative names: Salvia officinalis Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Sage.htm Scutellaria lateriflora Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Skullcap ch.html Skullcap Alternative names: Scutellaria lateriflora, Mad-dog Skullcap Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Skullcap ch.html 286 Seizures and Epilepsy Skullcap Source: The Canadian Internet Directory for Holistic Help, WellNet, Health and Wellness Network; www.wellnet.ca Hyperlink: http://www.wellnet.ca/herbss-v.htm Sun Drop Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsHerbs/Evening Primrosech.html Sun Drop Alternative names: Evening Primrose Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsHerbs/Interacti ons/EveningPrimrosech.html Syzygium Clove Alternative names: Clove, Jamun; Syzygium sp. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Thiazide Diuretics Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsDepletions/Diur eticsThiazideDiureticscl.html Thioridazine Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Thioridazine.htm Thuja plicata Alternative names: Western Red Cedar Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Researching Alternative Medicine 287 Trace minerals Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10061,00.html Uncaria asian Alternative names: Asian species; Uncaria sp. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Uricosuric Agents Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: Uricosuric Agents Uva ursi Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10063,00.html Valerian Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000244.html Valproic Acid Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Valproic_Acid.htm Valproic Acid Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000362.html Wormwood Alternative names: Artemisia absinthium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Herb/Wormwood.htm 288 Seizures and Epilepsy Zanthoxylum Alternative names: Prickly Ash; Zanthoxylum sp. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ Zizyphus Alternative names: Jujube; Ziziphus sp. Source: Alternative Medicine Foundation, Inc.; www.amfoundation.org Hyperlink: http://www.herbmed.org/ General References A good place to find general background information on CAM is the National Library of Medicine. It has prepared within the MEDLINEplus system an information topic page dedicated to complementary and alternative medicine. To access this page, go to the MEDLINEplus site at: www.nlm.nih.gov/medlineplus/alternativemedicine.html. This Web site provides a general overview of various topics and can lead to a number of general sources. The following additional references describe, in broad terms, alternative and complementary medicine (sorted alphabetically by title; hyperlinks provide rankings, information, and reviews at Amazon.com): · Alternative and Complementary Treatment in Neurologic Illness by Michael I. Weintraub (Editor); Paperback - 288 pages (March 23, 2001), Churchill Livingstone; ISBN: 0443065586; http://www.amazon.com/exec/obidos/ASIN/0443065586/icongroupinterna · Radical Healing: Integrating the World’s Great Therapeutic Traditions to Create a New Transformative Medicine by Rudolph Ballentine, M.D., Linda Funk (Illustrator); Paperback - 612 pages; Reprint edition (March 14, 2000), Three Rivers Press; ISBN: 0609804847; http://www.amazon.com/exec/obidos/ASIN/0609804847/icongroupinterna · The Review of Natural Products by Facts and Comparisons (Editor); CdRom edition (January 2002), Facts & Comparisons; ISBN: 1574391453; http://www.amazon.com/exec/obidos/ASIN/1574391453/icongroupinterna Researching Alternative Medicine 289 For additional information on complementary and alternative medicine, ask your doctor or write to: National Center for Complementary and Alternative Medicine Clearinghouse National Institutes of Health P. O. Box 8218 Silver Spring, MD 20907-8218 Vocabulary Builder The following vocabulary builder gives definitions of words used in this chapter that have not been defined in previous chapters: Anaphylaxis: An acute hypersensitivity reaction due to exposure to a previously encountered antigen. The reaction may include rapidly progressing urticaria, respiratory distress, vascular collapse, systemic shock, and death. [NIH] Anorexia: Lack or loss of the appetite for food. [EU] Calmodulin: A heat-stable, low-molecular-weight activator protein found mainly in the brain and heart. The binding of calcium ions to this protein allows this protein to bind to cyclic nucleotide phosphodiesterases and to adenyl cyclase with subsequent activation. Thereby this protein modulates cyclic AMP and cyclic GMP levels. [NIH] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Cisplatin: An inorganic and water-soluble platinum complex. After undergoing hydrolysis, it reacts with DNA to produce both intra and interstrand crosslinks. These crosslinks appear to impair replication and transcription of DNA. The cytotoxicity of cisplatin correlates with cellular arrest in the G2 phase of the cell cycle. [NIH] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cysteine: A thiol-containing non-essential amino acid that is oxidized to form CYSTINE. [NIH] Dementia: An acquired organic mental disorder with loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning. The dysfunction is multifaceted and involves memory, behavior, personality, judgment, attention, spatial relations, language, abstract thought, and other executive functions. The intellectual decline is 290 Seizures and Epilepsy usually progressive, and initially spares the level of consciousness. [NIH] Dyskinesia: Impairment of the power of voluntary movement, resulting in fragmentary or incomplete movements. [EU] Electroacupuncture: A form of acupuncture using low frequency electrically stimulated needles to produce analgesia and anesthesia and to treat disease. [NIH] Endocarditis: Exudative and proliferative inflammatory alterations of the endocardium, characterized by the presence of vegetations on the surface of the endocardium or in the endocardium itself, and most commonly involving a heart valve, but sometimes affecting the inner lining of the cardiac chambers or the endocardium elsewhere. It may occur as a primary disorder or as a complication of or in association with another disease. [EU] Ethanol: A clear, colorless liquid rapidly absorbed from the gastrointestinal tract and distributed throughout the body. It has bactericidal activity and is used often as a topical disinfectant. It is widely used as a solvent and preservative in pharmaceutical preparations as well as serving as the primary ingredient in alcoholic beverages. [NIH] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Hyperbaric: Characterized by greater than normal pressure or weight; applied to gases under greater than atmospheric pressure, as hyperbaric oxygen, or to a solution of greater specific gravity than another taken as a standard of reference. [EU] Hypnotic: A drug that acts to induce sleep. [EU] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Mastocytosis: A group of diseases resulting from proliferation of mast cells. [NIH] Perphenazine: An antipsychotic phenothiazine derivative with actions and uses similar to those of chlorpromazine. [NIH] Plantago: Three different species of Plantago or plantain, P. psyllium, P. ovata and P. indica. The seeds swell in water and are used as laxatives. [NIH] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the Researching Alternative Medicine 291 head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Species: A taxonomic category subordinate to a genus (or subgenus) and superior to a subspecies or variety, composed of individuals possessing common characters distinguishing them from other categories of individuals of the same taxonomic level. In taxonomic nomenclature, species are designated by the genus name followed by a Latin or Latinized adjective or noun. [EU] Testicular: Pertaining to a testis. [EU] Uricosuric: 1. Pertaining to, characterized by, or promoting uricosuria (= the excretion of uric acid in the urine). 2. An agent that promotes uricosuria. [EU] Valerian: Valeriana officinale, an ancient, sedative herb of the large family Valerianaceae. The roots were formerly used to treat hysterias and other neurotic states and are presently used to treat sleep disorders. [NIH] Veins: The vessels carrying blood toward the heart. [NIH] Researching Nutrition 293 APPENDIX C. RESEARCHING NUTRITION Overview Since the time of Hippocrates, doctors have understood the importance of diet and nutrition to patients’ health and well-being. Since then, they have accumulated an impressive archive of studies and knowledge dedicated to this subject. Based on their experience, doctors and healthcare providers may recommend particular dietary supplements to patients with seizures and epilepsy. Any dietary recommendation is based on a patient’s age, body mass, gender, lifestyle, eating habits, food preferences, and health condition. It is therefore likely that different patients with seizures and epilepsy may be given different recommendations. Some recommendations may be directly related to seizures and epilepsy, while others may be more related to the patient’s general health. These recommendations, themselves, may differ from what official sources recommend for the average person. In this chapter we will begin by briefly reviewing the essentials of diet and nutrition that will broadly frame more detailed discussions of seizures and epilepsy. We will then show you how to find studies dedicated specifically to nutrition and seizures and epilepsy. Food and Nutrition: General Principles What Are Essential Foods? Food is generally viewed by official sources as consisting of six basic elements: (1) fluids, (2) carbohydrates, (3) protein, (4) fats, (5) vitamins, and (6) minerals. Consuming a combination of these elements is considered to be a healthy diet: 294 Seizures and Epilepsy · Fluids are essential to human life as 80-percent of the body is composed of water. Water is lost via urination, sweating, diarrhea, vomiting, diuretics (drugs that increase urination), caffeine, and physical exertion. · Carbohydrates are the main source for human energy (thermoregulation) and the bulk of typical diets. They are mostly classified as being either simple or complex. Simple carbohydrates include sugars which are often consumed in the form of cookies, candies, or cakes. Complex carbohydrates consist of starches and dietary fibers. Starches are consumed in the form of pastas, breads, potatoes, rice, and other foods. Soluble fibers can be eaten in the form of certain vegetables, fruits, oats, and legumes. Insoluble fibers include brown rice, whole grains, certain fruits, wheat bran and legumes. · Proteins are eaten to build and repair human tissues. Some foods that are high in protein are also high in fat and calories. Food sources for protein include nuts, meat, fish, cheese, and other dairy products. · Fats are consumed for both energy and the absorption of certain vitamins. There are many types of fats, with many general publications recommending the intake of unsaturated fats or those low in cholesterol. Vitamins and minerals are fundamental to human health, growth, and, in some cases, disease prevention. Most are consumed in your diet (exceptions being vitamins K and D which are produced by intestinal bacteria and sunlight on the skin, respectively). Each vitamin and mineral plays a different role in health. The following outlines essential vitamins: · Vitamin A is important to the health of your eyes, hair, bones, and skin; sources of vitamin A include foods such as eggs, carrots, and cantaloupe. · Vitamin B1, also known as thiamine, is important for your nervous system and energy production; food sources for thiamine include meat, peas, fortified cereals, bread, and whole grains. · Vitamin B2, also known as riboflavin, is important for your nervous system and muscles, but is also involved in the release of proteins from nutrients; food sources for riboflavin include dairy products, leafy vegetables, meat, and eggs. · Vitamin B3, also known as niacin, is important for healthy skin and helps the body use energy; food sources for niacin include peas, peanuts, fish, and whole grains · Vitamin B6, also known as pyridoxine, is important for the regulation of cells in the nervous system and is vital for blood formation; food sources for pyridoxine include bananas, whole grains, meat, and fish. Researching Nutrition 295 · Vitamin B12 is vital for a healthy nervous system and for the growth of red blood cells in bone marrow; food sources for vitamin B12 include yeast, milk, fish, eggs, and meat. · Vitamin C allows the body’s immune system to fight various diseases, strengthens body tissue, and improves the body’s use of iron; food sources for vitamin C include a wide variety of fruits and vegetables. · Vitamin D helps the body absorb calcium which strengthens bones and teeth; food sources for vitamin D include oily fish and dairy products. · Vitamin E can help protect certain organs and tissues from various degenerative diseases; food sources for vitamin E include margarine, vegetables, eggs, and fish. · Vitamin K is essential for bone formation and blood clotting; common food sources for vitamin K include leafy green vegetables. · Folic Acid maintains healthy cells and blood and, when taken by a pregnant woman, can prevent her fetus from developing neural tube defects; food sources for folic acid include nuts, fortified breads, leafy green vegetables, and whole grains. It should be noted that one can overdose on certain vitamins which become toxic if consumed in excess (e.g. vitamin A, D, E and K). Like vitamins, minerals are chemicals that are required by the body to remain in good health. Because the human body does not manufacture these chemicals internally, we obtain them from food and other dietary sources. The more important minerals include: · Calcium is needed for healthy bones, teeth, and muscles, but also helps the nervous system function; food sources for calcium include dry beans, peas, eggs, and dairy products. · Chromium is helpful in regulating sugar levels in blood; food sources for chromium include egg yolks, raw sugar, cheese, nuts, beets, whole grains, and meat. · Fluoride is used by the body to help prevent tooth decay and to reinforce bone strength; sources of fluoride include drinking water and certain brands of toothpaste. · Iodine helps regulate the body’s use of energy by synthesizing into the hormone thyroxine; food sources include leafy green vegetables, nuts, egg yolks, and red meat. 296 Seizures and Epilepsy · Iron helps maintain muscles and the formation of red blood cells and certain proteins; food sources for iron include meat, dairy products, eggs, and leafy green vegetables. · Magnesium is important for the production of DNA, as well as for healthy teeth, bones, muscles, and nerves; food sources for magnesium include dried fruit, dark green vegetables, nuts, and seafood. · Phosphorous is used by the body to work with calcium to form bones and teeth; food sources for phosphorous include eggs, meat, cereals, and dairy products. · Selenium primarily helps maintain normal heart and liver functions; food sources for selenium include wholegrain cereals, fish, meat, and dairy products. · Zinc helps wounds heal, the formation of sperm, and encourage rapid growth and energy; food sources include dried beans, shellfish, eggs, and nuts. The United States government periodically publishes recommended diets and consumption levels of the various elements of food. Again, your doctor may encourage deviations from the average official recommendation based on your specific condition. To learn more about basic dietary guidelines, visit the Web site: http://www.health.gov/dietaryguidelines/. Based on these guidelines, many foods are required to list the nutrition levels on the food’s packaging. Labeling Requirements are listed at the following site maintained by the Food and Drug Administration: http://www.cfsan.fda.gov/~dms/labcons.html. When interpreting these requirements, the government recommends that consumers become familiar with the following abbreviations before reading FDA literature:46 · DVs (Daily Values): A new dietary reference term that will appear on the food label. It is made up of two sets of references, DRVs and RDIs. · DRVs (Daily Reference Values): A set of dietary references that applies to fat, saturated fat, cholesterol, carbohydrate, protein, fiber, sodium, and potassium. · RDIs (Reference Daily Intakes): A set of dietary references based on the Recommended Dietary Allowances for essential vitamins and minerals and, in selected groups, protein. The name “RDI” replaces the term “U.S. RDA.” 46 Adapted from the FDA: http://www.fda.gov/fdac/special/foodlabel/dvs.html. Researching Nutrition 297 · RDAs (Recommended Dietary Allowances): A set of estimated nutrient allowances established by the National Academy of Sciences. It is updated periodically to reflect current scientific knowledge. What Are Dietary Supplements?47 Dietary supplements are widely available through many commercial sources, including health food stores, grocery stores, pharmacies, and by mail. Dietary supplements are provided in many forms including tablets, capsules, powders, gel-tabs, extracts, and liquids. Historically in the United States, the most prevalent type of dietary supplement was a multivitamin/mineral tablet or capsule that was available in pharmacies, either by prescription or “over the counter.” Supplements containing strictly herbal preparations were less widely available. Currently in the United States, a wide array of supplement products are available, including vitamin, mineral, other nutrients, and botanical supplements as well as ingredients and extracts of animal and plant origin. The Office of Dietary Supplements (ODS) of the National Institutes of Health is the official agency of the United States which has the expressed goal of acquiring “new knowledge to help prevent, detect, diagnose, and treat disease and disability, from the rarest genetic disorder to the common cold.”48 According to the ODS, dietary supplements can have an important impact on the prevention and management of disease and on the maintenance of health.49 The ODS notes that considerable research on the effects of dietary supplements has been conducted in Asia and Europe where the use of plant products, in particular, has a long tradition. However, the overwhelming majority of supplements have not been studied scientifically. To explore the role of dietary supplements in the improvement of health care, the ODS plans, organizes, and supports conferences, workshops, and symposia on scientific topics related to dietary supplements. The ODS often works in conjunction with other NIH Institutes and Centers, other This discussion has been adapted from the NIH: http://ods.od.nih.gov/whatare/whatare.html. 48 Contact: The Office of Dietary Supplements, National Institutes of Health, Building 31, Room 1B29, 31 Center Drive, MSC 2086, Bethesda, Maryland 20892-2086, Tel: (301) 435-2920, Fax: (301) 480-1845, E-mail: ods@nih.gov. 49 Adapted from http://ods.od.nih.gov/about/about.html. The Dietary Supplement Health and Education Act defines dietary supplements as “a product (other than tobacco) intended to supplement the diet that bears or contains one or more of the following dietary ingredients: a vitamin, mineral, amino acid, herb or other botanical; or a dietary substance for use to supplement the diet by increasing the total dietary intake; or a concentrate, metabolite, constituent, extract, or combination of any ingredient described above; and intended for ingestion in the form of a capsule, powder, softgel, or gelcap, and not represented as a conventional food or as a sole item of a meal or the diet.” 47 298 Seizures and Epilepsy government agencies, professional organizations, and public advocacy groups. To learn more about official information on dietary supplements, visit the ODS site at http://ods.od.nih.gov/whatare/whatare.html. Or contact: The Office of Dietary Supplements National Institutes of Health Building 31, Room 1B29 31 Center Drive, MSC 2086 Bethesda, Maryland 20892-2086 Tel: (301) 435-2920 Fax: (301) 480-1845 E-mail: ods@nih.gov Finding Studies on Seizures and Epilepsy The NIH maintains an office dedicated to patient nutrition and diet. The National Institutes of Health’s Office of Dietary Supplements (ODS) offers a searchable bibliographic database called the IBIDS (International Bibliographic Information on Dietary Supplements). The IBIDS contains over 460,000 scientific citations and summaries about dietary supplements and nutrition as well as references to published international, scientific literature on dietary supplements such as vitamins, minerals, and botanicals.50 IBIDS is available to the public free of charge through the ODS Internet page: http://ods.od.nih.gov/databases/ibids.html. After entering the search area, you have three choices: (1) IBIDS Consumer Database, (2) Full IBIDS Database, or (3) Peer Reviewed Citations Only. We recommend that you start with the Consumer Database. While you may not find references for the topics that are of most interest to you, check back periodically as this database is frequently updated. More studies can be found by searching the Full IBIDS Database. Healthcare professionals and researchers generally use the third option, which lists peer-reviewed citations. In all cases, we suggest that you take advantage of the “Advanced Search” option that allows you to retrieve up to 100 fully explained references in a comprehensive format. Type “seizures and epilepsy” (or Adapted from http://ods.od.nih.gov. IBIDS is produced by the Office of Dietary Supplements (ODS) at the National Institutes of Health to assist the public, healthcare providers, educators, and researchers in locating credible, scientific information on dietary supplements. IBIDS was developed and will be maintained through an interagency partnership with the Food and Nutrition Information Center of the National Agricultural Library, U.S. Department of Agriculture. 50 Researching Nutrition 299 synonyms) into the search box. To narrow the search, you can also select the “Title” field. The following information is typical of that found when using the “Full IBIDS Database” when searching using “seizures and epilepsy” (or a synonym): · Effects of tetrahydroaminoacridine (tacrine) derivatives and physostigmine in convulsions induced by pentylenetetrazol. Author(s): J.H., Purkyne Medical Research Institute, Hradec Kralove, CSSR. Source: Herink, J Koupilova, M Hrdina, V Act-Nerv-Super-(Praha). 1989 December; 31(4): 303-5 0001-7604 · Effects of the diterpene sclareol glycol on convulsive seizures. Author(s): Institute of Pharmacology and Pharmacy, Medical Academy, Sofia, Bulgaria. Source: Georgieva, J Methods-Find-Exp-Clin-Pharmacol. 1989 May; 11(5): 335-40 0379-0355 · Ketogenic diet reduces spontaneous seizures and mossy fiber sprouting in the kainic acid model. Author(s): Department of Neurology, Children's Hospital and Medical Center, Boston, MA, USA. Source: Muller Schwarze, A B Tandon, P Liu, Z Yang, Y Holmes, G L Stafstrom, C E Neuroreport. 1999 May 14; 10(7): 1517-22 0959-4965 Federal Resources on Nutrition In addition to the IBIDS, the United States Department of Health and Human Services (HHS) and the United States Department of Agriculture (USDA) provide many sources of information on general nutrition and health. Recommended resources include: · healthfinder®, HHS’s gateway to health information, including diet and nutrition: http://www.healthfinder.gov/scripts/SearchContext.asp?topic=238&pag e=0 · The United States Department of Agriculture’s Web site dedicated to nutrition information: www.nutrition.gov · The Food and Drug Administration’s Web site for federal food safety information: www.foodsafety.gov 300 Seizures and Epilepsy · The National Action Plan on Overweight and Obesity sponsored by the United States Surgeon General: http://www.surgeongeneral.gov/topics/obesity/ · The Center for Food Safety and Applied Nutrition has an Internet site sponsored by the Food and Drug Administration and the Department of Health and Human Services: http://vm.cfsan.fda.gov/ · Center for Nutrition Policy and Promotion sponsored by the United States Department of Agriculture: http://www.usda.gov/cnpp/ · Food and Nutrition Information Center, National Agricultural Library sponsored by the United States Department of Agriculture: http://www.nal.usda.gov/fnic/ · Food and Nutrition Service sponsored by the United States Department of Agriculture: http://www.fns.usda.gov/fns/ Additional Web Resources A number of additional Web sites offer encyclopedic information covering food and nutrition. The following is a representative sample: · AOL: http://search.aol.com/cat.adp?id=174&layer=&from=subcats · Family Village: http://www.familyvillage.wisc.edu/med_nutrition.html · Google: http://directory.google.com/Top/Health/Nutrition/ · Healthnotes: http://www.thedacare.org/healthnotes/ · Open Directory Project: http://dmoz.org/Health/Nutrition/ · Yahoo.com: http://dir.yahoo.com/Health/Nutrition/ · WebMDÒHealth: http://my.webmd.com/nutrition · WholeHealthMD.com: http://www.wholehealthmd.com/reflib/0,1529,,00.html The following is a specific Web list relating to Seizures and Epilepsy; please note that any particular subject below may indicate either a therapeutic use, or a contraindication (potential danger), and does not reflect an official recommendation: Researching Nutrition 301 · Vitamins Folic Acid Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminB9FolicAcidcs.html Folic acid Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 887,00.html Riboflavin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminB2Riboflavincs.html Riboflavin Alternative names: Vitamin B2 (Riboflavin) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/VitaminB2Riboflavincs.html Vitamin B Source: WholeHealthMD.com, LLC.; www.wholehealthmd.com Hyperlink: http://www.wholehealthmd.com/refshelf/substances_view/0,1525, 10067,00.html Vitamin B2 (Riboflavin) Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminB2Riboflavincs.html 302 Seizures and Epilepsy Vitamin B2 (Riboflavin) Alternative names: Riboflavin Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/InteractiveMedicine/ConsSupplements/In teractions/VitaminB2Riboflavincs.html Vitamin B9 (Folic Acid) Alternative names: Folate, Folic Acid Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminB9FolicAcidcs.html Vitamin D Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000129.html Vitamin K Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000246.html · Minerals Aluminum, Calcium, and Magnesium-Containing Preparations Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsDepletions/Ant acidsAluminumCalciumandMagnesiumContainingPreparationscl.ht ml Boron Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Boron.htm Cisplatin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Cisplatin.htm Researching Nutrition 303 Clorazepate Dipotassium Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Clorazepate_Dipotass ium.htm Folate Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/Vi taminB9FolicAcidcs.html Folate Source: Prima Communications, Inc. Hyperlink: http://www.personalhealthzone.com/pg000161.html Gabapentin Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Drug/Gabapentin.htm Iron Source: Healthnotes, Inc.; www.healthnotes.com Hyperlink: http://www.thedacare.org/healthnotes/Supp/Iron.htm Manganese Source: Integrative Medicine Communications; www.onemedicine.com Hyperlink: http://www.drkoop.com/interactivemedicine/ConsSupplements/M anganesecs.html 304 Seizures and Epilepsy Vocabulary Builder The following vocabulary builder defines words used in the references in this chapter that have not been defined in previous chapters: Aluminum: A metallic element that has the atomic number 13, atomic symbol Al, and atomic weight 26.98. [NIH] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Boron: Boron. A trace element with the atomic symbol B, atomic number 5, and atomic weight 10.81. Boron-10, an isotope of boron, is used as a neutron absorber in BORON NEUTRON CAPTURE THERAPY. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Catalase: An oxidoreductase that catalyzes the conversion of hydrogen peroxide to water and oxygen. It is present in many animal cells. A deficiency of this enzyme results in acatalasia. EC 1.11.1.6. [NIH] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Iloprost: An eicosanoid, derived from the cyclooxygenase pathway of arachidonic acid metabolism. It is a stable and synthetic analog of epoprostenol, but with a longer half-life than the parent compound. Its actions are similar to prostacyclin. Iloprost produces vasodilation and inhibits platelet aggregation. [NIH] Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH] Nadir: The lowest point; point of greatest adversity or despair. [EU] Neuropeptides: Peptides released by neurons as intercellular messengers. Many neuropeptides are also hormones released by non-neuronal cells. [NIH] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Physostigmine: A cholinesterase inhibitor that is rapidly absorbed through membranes. It can be applied topically to the conjunctiva. It also can cross the blood-brain barrier and is used when central nervous system effects are Researching Nutrition 305 desired, as in the treatment of severe anticholinergic toxicity. [NIH] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Somatostatin: A polypeptide hormone produced in the hypothalamus, and other tissues and organs. It inhibits the release of human growth hormone, and also modulates important physiological functions of the kidney, pancreas, and gastrointestinal tract. Somatostatin receptors are widely expressed throughout the body. Somatostatin also acts as a neurotransmitter in the central and peripheral nervous systems. [NIH] Tacrine: A cholinesterase inhibitor that crosses the blood-brain barrier. Tacrine has been used to counter the effects of muscle relaxants, as a respiratory stimulant, and in the treatment of Alzheimer's disease and other central nervous system disorders. [NIH] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Finding Medical Libraries 307 APPENDIX D. FINDING MEDICAL LIBRARIES Overview At a medical library you can find medical texts and reference books, consumer health publications, specialty newspapers and magazines, as well as medical journals. In this Appendix, we show you how to quickly find a medical library in your area. Preparation Before going to the library, highlight the references mentioned in this sourcebook that you find interesting. Focus on those items that are not available via the Internet, and ask the reference librarian for help with your search. He or she may know of additional resources that could be helpful to you. Most importantly, your local public library and medical libraries have Interlibrary Loan programs with the National Library of Medicine (NLM), one of the largest medical collections in the world. According to the NLM, most of the literature in the general and historical collections of the National Library of Medicine is available on interlibrary loan to any library. NLM’s interlibrary loan services are only available to libraries. If you would like to access NLM medical literature, then visit a library in your area that can request the publications for you.51 51 Adapted from the NLM: http://www.nlm.nih.gov/psd/cas/interlibrary.html. 308 Seizures and Epilepsy Finding a Local Medical Library The quickest method to locate medical libraries is to use the Internet-based directory published by the National Network of Libraries of Medicine (NN/LM). This network includes 4626 members and affiliates that provide many services to librarians, health professionals, and the public. To find a library in your area, simply visit http://nnlm.gov/members/adv.html or call 1-800-338-7657. Medical Libraries Open to the Public In addition to the NN/LM, the National Library of Medicine (NLM) lists a number of libraries that are generally open to the public and have reference facilities. The following is the NLM’s list plus hyperlinks to each library Web site. These Web pages can provide information on hours of operation and other restrictions. The list below is a small sample of libraries recommended by the National Library of Medicine (sorted alphabetically by name of the U.S. state or Canadian province where the library is located):52 · Alabama: Health InfoNet of Jefferson County (Jefferson County Library Cooperative, Lister Hill Library of the Health Sciences), http://www.uab.edu/infonet/ · Alabama: Richard M. Scrushy Library (American Sports Medicine Institute), http://www.asmi.org/LIBRARY.HTM · Arizona: Samaritan Regional Medical Center: The Learning Center (Samaritan Health System, Phoenix, Arizona), http://www.samaritan.edu/library/bannerlibs.htm · California: Kris Kelly Health Information Center (St. Joseph Health System), http://www.humboldt1.com/~kkhic/index.html · California: Community Health Library of Los Gatos (Community Health Library of Los Gatos), http://www.healthlib.org/orgresources.html · California: Consumer Health Program and Services (CHIPS) (County of Los Angeles Public Library, Los Angeles County Harbor-UCLA Medical Center Library) - Carson, CA, http://www.colapublib.org/services/chips.html · California: Gateway Health Library (Sutter Gould Medical Foundation) · California: Health Library (Stanford University Medical Center), http://www-med.stanford.edu/healthlibrary/ 52 Abstracted from http://www.nlm.nih.gov/medlineplus/libraries.html. Finding Medical Libraries 309 · California: Patient Education Resource Center - Health Information and Resources (University of California, San Francisco), http://sfghdean.ucsf.edu/barnett/PERC/default.asp · California: Redwood Health Library (Petaluma Health Care District), http://www.phcd.org/rdwdlib.html · California: San José PlaneTree Health Library, http://planetreesanjose.org/ · California: Sutter Resource Library (Sutter Hospitals Foundation), http://go.sutterhealth.org/comm/resc-library/sac-resources.html · California: University of California, Davis. Health Sciences Libraries · California: ValleyCare Health Library & Ryan Comer Cancer Resource Center (ValleyCare Health System), http://www.valleycare.com/library.html · California: Washington Community Health Resource Library (Washington Community Health Resource Library), http://www.healthlibrary.org/ · Colorado: William V. Gervasini Memorial Library (Exempla Healthcare), http://www.exempla.org/conslib.htm · Connecticut: Hartford Hospital Health Science Libraries (Hartford Hospital), http://www.harthosp.org/library/ · Connecticut: Healthnet: Connecticut Consumer Health Information Center (University of Connecticut Health Center, Lyman Maynard Stowe Library), http://library.uchc.edu/departm/hnet/ · Connecticut: Waterbury Hospital Health Center Library (Waterbury Hospital), http://www.waterburyhospital.com/library/consumer.shtml · Delaware: Consumer Health Library (Christiana Care Health System, Eugene du Pont Preventive Medicine & Rehabilitation Institute), http://www.christianacare.org/health_guide/health_guide_pmri_health _info.cfm · Delaware: Lewis B. Flinn Library (Delaware Academy of Medicine), http://www.delamed.org/chls.html · Georgia: Family Resource Library (Medical College of Georgia), http://cmc.mcg.edu/kids_families/fam_resources/fam_res_lib/frl.htm · Georgia: Health Resource Center (Medical Center of Central Georgia), http://www.mccg.org/hrc/hrchome.asp · Hawaii: Hawaii Medical Library: Consumer Health Information Service (Hawaii Medical Library), http://hml.org/CHIS/ 310 Seizures and Epilepsy · Idaho: DeArmond Consumer Health Library (Kootenai Medical Center), http://www.nicon.org/DeArmond/index.htm · Illinois: Health Learning Center of Northwestern Memorial Hospital (Northwestern Memorial Hospital, Health Learning Center), http://www.nmh.org/health_info/hlc.html · Illinois: Medical Library (OSF Saint Francis Medical Center), http://www.osfsaintfrancis.org/general/library/ · Kentucky: Medical Library - Services for Patients, Families, Students & the Public (Central Baptist Hospital), http://www.centralbap.com/education/community/library.htm · Kentucky: University of Kentucky - Health Information Library (University of Kentucky, Chandler Medical Center, Health Information Library), http://www.mc.uky.edu/PatientEd/ · Louisiana: Alton Ochsner Medical Foundation Library (Alton Ochsner Medical Foundation), http://www.ochsner.org/library/ · Louisiana: Louisiana State University Health Sciences Center Medical Library-Shreveport, http://lib-sh.lsuhsc.edu/ · Maine: Franklin Memorial Hospital Medical Library (Franklin Memorial Hospital), http://www.fchn.org/fmh/lib.htm · Maine: Gerrish-True Health Sciences Library (Central Maine Medical Center), http://www.cmmc.org/library/library.html · Maine: Hadley Parrot Health Science Library (Eastern Maine Healthcare), http://www.emh.org/hll/hpl/guide.htm · Maine: Maine Medical Center Library (Maine Medical Center), http://www.mmc.org/library/ · Maine: Parkview Hospital, http://www.parkviewhospital.org/communit.htm#Library · Maine: Southern Maine Medical Center Health Sciences Library (Southern Maine Medical Center), http://www.smmc.org/services/service.php3?choice=10 · Maine: Stephens Memorial Hospital Health Information Library (Western Maine Health), http://www.wmhcc.com/hil_frame.html · Manitoba, Canada: Consumer & Patient Health Information Service (University of Manitoba Libraries), http://www.umanitoba.ca/libraries/units/health/reference/chis.html · Manitoba, Canada: J.W. Crane Memorial Library (Deer Lodge Centre), http://www.deerlodge.mb.ca/library/libraryservices.shtml Finding Medical Libraries 311 · Maryland: Health Information Center at the Wheaton Regional Library (Montgomery County, Md., Dept. of Public Libraries, Wheaton Regional Library), http://www.mont.lib.md.us/healthinfo/hic.asp · Massachusetts: Baystate Medical Center Library (Baystate Health System), http://www.baystatehealth.com/1024/ · Massachusetts: Boston University Medical Center Alumni Medical Library (Boston University Medical Center), http://medlibwww.bu.edu/library/lib.html · Massachusetts: Lowell General Hospital Health Sciences Library (Lowell General Hospital), http://www.lowellgeneral.org/library/HomePageLinks/WWW.htm · Massachusetts: Paul E. Woodard Health Sciences Library (New England Baptist Hospital), http://www.nebh.org/health_lib.asp · Massachusetts: St. Luke’s Hospital Health Sciences Library (St. Luke’s Hospital), http://www.southcoast.org/library/ · Massachusetts: Treadwell Library Consumer Health Reference Center (Massachusetts General Hospital), http://www.mgh.harvard.edu/library/chrcindex.html · Massachusetts: UMass HealthNet (University of Massachusetts Medical School), http://healthnet.umassmed.edu/ · Michigan: Botsford General Hospital Library - Consumer Health (Botsford General Hospital, Library & Internet Services), http://www.botsfordlibrary.org/consumer.htm · Michigan: Helen DeRoy Medical Library (Providence Hospital and Medical Centers), http://www.providence-hospital.org/library/ · Michigan: Marquette General Hospital - Consumer Health Library (Marquette General Hospital, Health Information Center), http://www.mgh.org/center.html · Michigan: Patient Education Resouce Center - University of Michigan Cancer Center (University of Michigan Comprehensive Cancer Center), http://www.cancer.med.umich.edu/learn/leares.htm · Michigan: Sladen Library & Center for Health Information Resources Consumer Health Information, http://www.sladen.hfhs.org/library/consumer/index.html · Montana: Center for Health Information (St. Patrick Hospital and Health Sciences Center), http://www.saintpatrick.org/chi/librarydetail.php3?ID=41 312 Seizures and Epilepsy · National: Consumer Health Library Directory (Medical Library Association, Consumer and Patient Health Information Section), http://caphis.mlanet.org/directory/index.html · National: National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the United States who do not have access to a medical library, http://nnlm.gov/ · National: NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine), http://nnlm.gov/members/ · Nevada: Health Science Library, West Charleston Library (Las Vegas Clark County Library District), http://www.lvccld.org/special_collections/medical/index.htm · New Hampshire: Dartmouth Biomedical Libraries (Dartmouth College Library), http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld / · New Jersey: Consumer Health Library (Rahway Hospital), http://www.rahwayhospital.com/library.htm · New Jersey: Dr. Walter Phillips Health Sciences Library (Englewood Hospital and Medical Center), http://www.englewoodhospital.com/links/index.htm · New Jersey: Meland Foundation (Englewood Hospital and Medical Center), http://www.geocities.com/ResearchTriangle/9360/ · New York: Choices in Health Information (New York Public Library) NLM Consumer Pilot Project participant, http://www.nypl.org/branch/health/links.html · New York: Health Information Center (Upstate Medical University, State University of New York), http://www.upstate.edu/library/hic/ · New York: Health Sciences Library (Long Island Jewish Medical Center), http://www.lij.edu/library/library.html · New York: ViaHealth Medical Library (Rochester General Hospital), http://www.nyam.org/library/ · Ohio: Consumer Health Library (Akron General Medical Center, Medical & Consumer Health Library), http://www.akrongeneral.org/hwlibrary.htm · Oklahoma: Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System), http://www.sfhtulsa.com/patientfamilycenter/default.asp Finding Medical Libraries 313 · Oregon: Planetree Health Resource Center (Mid-Columbia Medical Center), http://www.mcmc.net/phrc/ · Pennsylvania: Community Health Information Library (Milton S. Hershey Medical Center), http://www.hmc.psu.edu/commhealth/ · Pennsylvania: Community Health Resource Library (Geisinger Medical Center), http://www.geisinger.edu/education/commlib.shtml · Pennsylvania: HealthInfo Library (Moses Taylor Hospital), http://www.mth.org/healthwellness.html · Pennsylvania: Hopwood Library (University of Pittsburgh, Health Sciences Library System), http://www.hsls.pitt.edu/chi/hhrcinfo.html · Pennsylvania: Koop Community Health Information Center (College of Physicians of Philadelphia), http://www.collphyphil.org/kooppg1.shtml · Pennsylvania: Learning Resources Center - Medical Library (Susquehanna Health System), http://www.shscares.org/services/lrc/index.asp · Pennsylvania: Medical Library (UPMC Health System), http://www.upmc.edu/passavant/library.htm · Quebec, Canada: Medical Library (Montreal General Hospital), http://ww2.mcgill.ca/mghlib/ · South Dakota: Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center), http://www.rcrh.org/education/LibraryResourcesConsumers.htm · Texas: Houston HealthWays (Houston Academy of Medicine-Texas Medical Center Library), http://hhw.library.tmc.edu/ · Texas: Matustik Family Resource Center (Cook Children’s Health Care System), http://www.cookchildrens.com/Matustik_Library.html · Washington: Community Health Library (Kittitas Valley Community Hospital), http://www.kvch.com/ · Washington: Southwest Washington Medical Center Library (Southwest Washington Medical Center), http://www.swmedctr.com/Home/ Your Rights and Insurance 315 APPENDIX E. YOUR RIGHTS AND INSURANCE Overview Any patient with seizures and epilepsy faces a series of issues related more to the healthcare industry than to the medical condition itself. This appendix covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan. Your Rights as a Patient The President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has created the following summary of your rights as a patient.53 Information Disclosure Consumers have the right to receive accurate, easily understood information. Some consumers require assistance in making informed decisions about health plans, health professionals, and healthcare facilities. Such information includes: · Health plans. Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status, comparable measures of quality and consumer satisfaction, provider network composition, the procedures that govern access to specialists and emergency services, and care management information. 53Adapted from Consumer Bill of Rights and Responsibilities: http://www.hcqualitycommission.gov/press/cbor.html#head1. 316 Seizures and Epilepsy · Health professionals. Education, board certification, and recertification, years of practice, experience performing certain procedures, and comparable measures of quality and consumer satisfaction. · Healthcare facilities. Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker, and consumer satisfaction, and procedures for resolving complaints. · Consumer assistance programs. Programs must be carefully structured to promote consumer confidence and to work cooperatively with health plans, providers, payers, and regulators. Desirable characteristics of such programs are sponsorship that ensures accountability to the interests of consumers and stable, adequate funding. Choice of Providers and Plans Consumers have the right to a choice of healthcare providers that is sufficient to ensure access to appropriate high-quality healthcare. To ensure such choice, the Commission recommends the following: · Provider network adequacy. All health plan networks should provide access to sufficient numbers and types of providers to assure that all covered services will be accessible without unreasonable delay -including access to emergency services 24 hours a day and 7 days a week. If a health plan has an insufficient number or type of providers to provide a covered benefit with the appropriate degree of specialization, the plan should ensure that the consumer obtains the benefit outside the network at no greater cost than if the benefit were obtained from participating providers. · Women’s health services. Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse midwives, and other qualified healthcare providers -- for the provision of covered care necessary to provide routine and preventative women’s healthcare services. · Access to specialists. Consumers with complex or serious medical conditions who require frequent specialty care should have direct access to a qualified specialist of their choice within a plan’s network of providers. Authorizations, when required, should be for an adequate number of direct access visits under an approved treatment plan. · Transitional care. Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third trimester of a pregnancy) at the time they involuntarily change health Your Rights and Insurance 317 plans or at a time when a provider is terminated by a plan for other than cause should be able to continue seeing their current specialty providers for up to 90 days (or through completion of postpartum care) to allow for transition of care. · Choice of health plans. Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health insurance plans. Access to Emergency Services Consumers have the right to access emergency healthcare services when and where the need arises. Health plans should provide payment when a consumer presents to an emergency department with acute symptoms of sufficient severity--including severe pain--such that a “prudent layperson” could reasonably expect the absence of medical attention to result in placing that consumer’s health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part. Participation in Treatment Decisions Consumers have the right and responsibility to fully participate in all decisions related to their healthcare. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Physicians and other health professionals should: · Provide patients with sufficient information and opportunity to decide among treatment options consistent with the informed consent process. · Discuss all treatment options with a patient in a culturally competent manner, including the option of no treatment at all. · Ensure that persons with disabilities have effective communications with members of the health system in making such decisions. · Discuss all current treatments a consumer may be undergoing. · Discuss all risks, nontreatment. · Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions. benefits, and consequences to treatment or 318 Seizures and Epilepsy · Discuss the use of advance directives -- both living wills and durable powers of attorney for healthcare -- with patients and their designated family members. · Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process. Health plans, health providers, and healthcare facilities should: · Disclose to consumers factors -- such as methods of compensation, ownership of or interest in healthcare facilities, or matters of conscience -that could influence advice or treatment decisions. · Assure that provider contracts do not contain any so-called “gag clauses” or other contractual mechanisms that restrict healthcare providers’ ability to communicate with and advise patients about medically necessary treatment options. · Be prohibited from penalizing or seeking retribution against healthcare professionals or other health workers for advocating on behalf of their patients. Respect and Nondiscrimination Consumers have the right to considerate, respectful care from all members of the healthcare industry at all times and under all circumstances. An environment of mutual respect is essential to maintain a quality healthcare system. To assure that right, the Commission recommends the following: · Consumers must not be discriminated against in the delivery of healthcare services consistent with the benefits covered in their policy, or as required by law, based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. · Consumers eligible for coverage under the terms and conditions of a health plan or program, or as required by law, must not be discriminated against in marketing and enrollment practices based on race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information, or source of payment. Confidentiality of Health Information Consumers have the right to communicate with healthcare providers in confidence and to have the confidentiality of their individually identifiable Your Rights and Insurance 319 healthcare information protected. Consumers also have the right to review and copy their own medical records and request amendments to their records. Complaints and Appeals Consumers have the right to a fair and efficient process for resolving differences with their health plans, healthcare providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. A free copy of the Patient’s Bill of Rights is available from the American Hospital Association.54 Patient Responsibilities Treatment is a two-way street between you and your healthcare providers. To underscore the importance of finance in modern healthcare as well as your responsibility for the financial aspects of your care, the President’s Advisory Commission on Consumer Protection and Quality in the Healthcare Industry has proposed that patients understand the following “Consumer Responsibilities.”55 In a healthcare system that protects consumers’ rights, it is reasonable to expect and encourage consumers to assume certain responsibilities. Greater individual involvement by the consumer in his or her care increases the likelihood of achieving the best outcome and helps support a quality-oriented, cost-conscious environment. Such responsibilities include: · Take responsibility for maximizing healthy habits such as exercising, not smoking, and eating a healthy diet. · Work collaboratively with healthcare providers in developing and carrying out agreed-upon treatment plans. · Disclose relevant information and clearly communicate wants and needs. · Use your health insurance plan’s internal complaint and appeal processes to address your concerns. · Avoid knowingly spreading disease. To order your free copy of the Patient’s Bill of Rights, telephone 312-422-3000 or visit the American Hospital Association’s Web site: http://www.aha.org. Click on “Resource Center,” go to “Search” at bottom of page, and then type in “Patient’s Bill of Rights.” The Patient’s Bill of Rights is also available from Fax on Demand, at 312-422-2020, document number 471124. 55 Adapted from http://www.hcqualitycommission.gov/press/cbor.html#head1. 54 320 Seizures and Epilepsy · Recognize the reality of risks, the limits of the medical science, and the human fallibility of the healthcare professional. · Be aware of a healthcare provider’s obligation to be reasonably efficient and equitable in providing care to other patients and the community. · Become knowledgeable about your health plan’s coverage and options (when available) including all covered benefits, limitations, and exclusions, rules regarding use of network providers, coverage and referral rules, appropriate processes to secure additional information, and the process to appeal coverage decisions. · Show respect for other patients and health workers. · Make a good-faith effort to meet financial obligations. · Abide by administrative and operational procedures of health plans, healthcare providers, and Government health benefit programs. Choosing an Insurance Plan There are a number of official government agencies that help consumers understand their healthcare insurance choices.56 The U.S. Department of Labor, in particular, recommends ten ways to make your health benefits choices work best for you.57 1. Your options are important. There are many different types of health benefit plans. Find out which one your employer offers, then check out the plan, or plans, offered. Your employer’s human resource office, the health plan administrator, or your union can provide information to help you match your needs and preferences with the available plans. The more information you have, the better your healthcare decisions will be. 2. Reviewing the benefits available. Do the plans offered cover preventive care, well-baby care, vision or dental care? Are there deductibles? Answers to these questions can help determine the out-of-pocket expenses you may face. Matching your needs and those of your family members will result in the best possible benefits. Cheapest may not always be best. Your goal is high quality health benefits. More information about quality across programs is provided at the following AHRQ Web site: http://www.ahrq.gov/consumer/qntascii/qnthplan.htm. 57 Adapted from the Department of Labor: http://www.dol.gov/dol/pwba/public/pubs/health/top10-text.html. 56 Your Rights and Insurance 321 3. Look for quality. The quality of healthcare services varies, but quality can be measured. You should consider the quality of healthcare in deciding among the healthcare plans or options available to you. Not all health plans, doctors, hospitals and other providers give the highest quality care. Fortunately, there is quality information you can use right now to help you compare your healthcare choices. Find out how you can measure quality. Consult the U.S. Department of Health and Human Services publication “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. 4. Your plan’s summary plan description (SPD) provides a wealth of information. Your health plan administrator can provide you with a copy of your plan’s SPD. It outlines your benefits and your legal rights under the Employee Retirement Income Security Act (ERISA), the federal law that protects your health benefits. It should contain information about the coverage of dependents, what services will require a co-pay, and the circumstances under which your employer can change or terminate a health benefits plan. Save the SPD and all other health plan brochures and documents, along with memos or correspondence from your employer relating to health benefits. 5. Assess your benefit coverage as your family status changes. Marriage, divorce, childbirth or adoption, and the death of a spouse are all life events that may signal a need to change your health benefits. You, your spouse and dependent children may be eligible for a special enrollment period under provisions of the Health Insurance Portability and Accountability Act (HIPAA). Even without life-changing events, the information provided by your employer should tell you how you can change benefits or switch plans, if more than one plan is offered. If your spouse’s employer also offers a health benefits package, consider coordinating both plans for maximum coverage. 6. Changing jobs and other life events can affect your health benefits. Under the Consolidated Omnibus Budget Reconciliation Act (COBRA), you, your covered spouse, and your dependent children may be eligible to purchase extended health coverage under your employer’s plan if you lose your job, change employers, get divorced, or upon occurrence of certain other events. Coverage can range from 18 to 36 months depending on your situation. COBRA applies to most employers with 20 or more workers and requires your plan to notify you of your rights. Most plans require eligible individuals to make their COBRA election within 60 days of the plan’s notice. Be sure to follow up with your plan sponsor if you don’t receive notice, and make sure you respond within the allotted time. 322 Seizures and Epilepsy 7. HIPAA can also help if you are changing jobs, particularly if you have a medical condition. HIPAA generally limits pre-existing condition exclusions to a maximum of 12 months (18 months for late enrollees). HIPAA also requires this maximum period to be reduced by the length of time you had prior “creditable coverage.” You should receive a certificate documenting your prior creditable coverage from your old plan when coverage ends. 8. Plan for retirement. Before you retire, find out what health benefits, if any, extend to you and your spouse during your retirement years. Consult with your employer’s human resources office, your union, the plan administrator, and check your SPD. Make sure there is no conflicting information among these sources about the benefits you will receive or the circumstances under which they can change or be eliminated. With this information in hand, you can make other important choices, like finding out if you are eligible for Medicare and Medigap insurance coverage. 9. Know how to file an appeal if your health benefits claim is denied. Understand how your plan handles grievances and where to make appeals of the plan’s decisions. Keep records and copies of correspondence. Check your health benefits package and your SPD to determine who is responsible for handling problems with benefit claims. Contact PWBA for customer service assistance if you are unable to obtain a response to your complaint. 10. You can take steps to improve the quality of the healthcare and the health benefits you receive. Look for and use things like Quality Reports and Accreditation Reports whenever you can. Quality reports may contain consumer ratings -- how satisfied consumers are with the doctors in their plan, for instance-- and clinical performance measures -- how well a healthcare organization prevents and treats illness. Accreditation reports provide information on how accredited organizations meet national standards, and often include clinical performance measures. Look for these quality measures whenever possible. Consult “Your Guide to Choosing Quality Health Care” on the Internet at www.ahcpr.gov/consumer. Medicare and Medicaid Illness strikes both rich and poor families. For low-income families, Medicaid is available to defer the costs of treatment. The Health Care Financing Administration (HCFA) administers Medicare, the nation’s largest health insurance program, which covers 39 million Americans. In the following pages, you will learn the basics about Medicare insurance as well as useful Your Rights and Insurance 323 contact information on how to find more in-depth information about Medicaid.58 Who Is Eligible for Medicare? Generally, you are eligible for Medicare if you or your spouse worked for at least 10 years in Medicare-covered employment and you are 65 years old and a citizen or permanent resident of the United States. You might also qualify for coverage if you are under age 65 but have a disability or EndStage Renal disease (permanent kidney failure requiring dialysis or transplant). Here are some simple guidelines: You can get Part A at age 65 without having to pay premiums if: · You are already receiving retirement benefits from Social Security or the Railroad Retirement Board. · You are eligible to receive Social Security or Railroad benefits but have not yet filed for them. · You or your spouse had Medicare-covered government employment. If you are under 65, you can get Part A without having to pay premiums if: · You have received Social Security or Railroad Retirement Board disability benefit for 24 months. · You are a kidney dialysis or kidney transplant patient. Medicare has two parts: · Part A (Hospital Insurance). Most people do not have to pay for Part A. · Part B (Medical Insurance). Most people pay monthly for Part B. Part A (Hospital Insurance) Helps Pay For: Inpatient hospital care, care in critical access hospitals (small facilities that give limited outpatient and inpatient services to people in rural areas) and skilled nursing facilities, hospice care, and some home healthcare. This section has been adapted from the Official U.S. Site for Medicare Information: http://www.medicare.gov/Basics/Overview.asp. 58 324 Seizures and Epilepsy Cost: Most people get Part A automatically when they turn age 65. You do not have to pay a monthly payment called a premium for Part A because you or a spouse paid Medicare taxes while you were working. If you (or your spouse) did not pay Medicare taxes while you were working and you are age 65 or older, you still may be able to buy Part A. If you are not sure you have Part A, look on your red, white, and blue Medicare card. It will show “Hospital Part A” on the lower left corner of the card. You can also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Fiscal Intermediary about Part A bills and services. The phone number for the Fiscal Intermediary office in your area can be obtained from the following Web site: http://www.medicare.gov/Contacts/home.asp. Part B (Medical Insurance) Helps Pay For: Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical and occupational therapists, and some home healthcare. Part B helps pay for covered services and supplies when they are medically necessary. Cost: As of 2001, you pay the Medicare Part B premium of $50.00 per month. In some cases this amount may be higher if you did not choose Part B when you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage, except in special cases. You will have to pay the extra 10% cost for the rest of your life. Enrolling in Part B is your choice. You can sign up for Part B anytime during a 7-month period that begins 3 months before you turn 65. Visit your local Social Security office, or call the Social Security Administration at 1-800-7721213 to sign up. If you choose to enroll in Part B, the premium is usually taken out of your monthly Social Security, Railroad Retirement, or Civil Service Retirement payment. If you do not receive any of the above payments, Medicare sends you a bill for your part B premium every 3 months. You should receive your Medicare premium bill in the mail by the 10th of the month. If you do not, call the Social Security Administration at 1800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For more information, call your Medicare carrier about bills and services. The Your Rights and Insurance 325 phone number for the Medicare carrier in your area can be found at the following Web site: http://www.medicare.gov/Contacts/home.asp. You may have choices in how you get your healthcare including the Original Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare Private Fee-for-Service Plans. Medicaid Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs vary from state to state. People on Medicaid may also get coverage for nursing home care and outpatient prescription drugs which are not covered by Medicare. You can find more information about Medicaid on the HCFA.gov Web site at http://www.hcfa.gov/medicaid/medicaid.htm. States also have programs that pay some or all of Medicare’s premiums and may also pay Medicare deductibles and coinsurance for certain people who have Medicare and a low income. To qualify, you must have: · Part A (Hospital Insurance), · Assets, such as bank accounts, stocks, and bonds that are not more than $4,000 for a single person, or $6,000 for a couple, and · A monthly income that is below certain limits. For more information, look at the Medicare Savings Programs brochure, http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua ge=English&Type=Pub&PubID=10126. There are also Prescription Drug Assistance Programs available. Find information on these programs which offer discounts or free medications to individuals in need at http://www.medicare.gov/Prescription/Home.asp. NORD’s Medication Assistance Programs Finally, the National Organization for Rare Disorders, Inc. (NORD) administers medication programs sponsored by humanitarian-minded pharmaceutical and biotechnology companies to help uninsured or underinsured individuals secure life-saving or life-sustaining drugs.59 NORD programs ensure that certain vital drugs are available “to those individuals whose income is too high to qualify for Medicaid but too low to pay for their 59 Adapted from NORD: http://www.rarediseases.org/. 326 Seizures and Epilepsy prescribed medications.” The program has standards for fairness, equity, and unbiased eligibility. It currently covers some 14 programs for nine pharmaceutical companies. NORD also offers early access programs for investigational new drugs (IND) under the approved “Treatment INDs” programs of the Food and Drug Administration (FDA). In these programs, a limited number of individuals can receive investigational drugs that have yet to be approved by the FDA. These programs are generally designed for rare diseases or disorders. For more information, visit www.rarediseases.org. Additional Resources In addition to the references already listed in this chapter, you may need more information on health insurance, hospitals, or the healthcare system in general. The NIH has set up an excellent guidance Web site that addresses these and other issues. Topics include:60 · Health Insurance: http://www.nlm.nih.gov/medlineplus/healthinsurance.html · Health Statistics: http://www.nlm.nih.gov/medlineplus/healthstatistics.html · HMO and Managed Care: http://www.nlm.nih.gov/medlineplus/managedcare.html · Hospice Care: http://www.nlm.nih.gov/medlineplus/hospicecare.html · Medicaid: http://www.nlm.nih.gov/medlineplus/medicaid.html · Medicare: http://www.nlm.nih.gov/medlineplus/medicare.html · Nursing Homes and Long-term Care: http://www.nlm.nih.gov/medlineplus/nursinghomes.html · Patient’s Rights, Confidentiality, Informed Consent, Ombudsman Programs, Privacy and Patient Issues: http://www.nlm.nih.gov/medlineplus/patientissues.html · Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange: http://www.nlm.nih.gov/medlineplus/veteranshealth.html 60 Access this information at: http://www.nlm.nih.gov/medlineplus/healthsystem.html. NIH Consensus Statement on Surgery for Epilepsy 327 APPENDIX F. NIH CONSENSUS STATEMENT ON SURGERY FOR EPILEPSY Overview NIH Consensus Development Conferences are convened to evaluate available scientific information and resolve safety and efficacy issues related to biomedical technology. The resultant NIH Consensus Statements are intended to advance understanding of the technology or issue in question and to be useful to health professionals and the public.61 Each NIH consensus statement is the product of an independent, non-Federal panel of experts and is based on the panel’s assessment of medical knowledge available at the time the statement was written. Therefore, a consensus statement provides a “snapshot in time” of the state of knowledge of the conference topic. The NIH makes the following caveat: “When reading or downloading NIH consensus statements, keep in mind that new knowledge is inevitably accumulating through medical research. Nevertheless, each NIH consensus statement is retained on this website in its original form as a record of the NIH Consensus Development Program.”62 The following concensus statement was posted on the NIH site and not indicated as “out of date” in March 2002. It was originally published, however, in March 1990.63 61 This paragraph is adapted from the NIH: http://odp.od.nih.gov/consensus/cons/cons.htm. 62 Adapted from the NIH: http://odp.od.nih.gov/consensus/cons/consdate.htm. 63 Surgery for Epilepsy. NIH Consens Statement Online 1990 Mar 19-21 [cited 2002 February 21];8(2):1-20. http://consensus.nih.gov/cons/077/077_statement.htm. 328 Seizures and Epilepsy Abstract The National Institutes of Health Consensus Development Conference on Surgery for Epilepsy brought together neurologists, neurosurgeons, psychologists, other health care providers, and the public to address issues regarding epilepsy surgery including patient selection and management, localization of seizure site onset, appropriate diagnostic techniques, and postoperative outcome assessment. The panel concluded that brain surgery is an alternative treatment when medication fails. Seizure frequency, severity type, possible brain damage or injury from frequent seizures, and effect on quality of life all must be considered in deciding to evaluate for surgery. An appropriate medication trial must have been conducted, using the correct drugs for the patient’s seizure type at adequate doses and blood levels. Nonepileptic attacks must be ruled out, and diagnostic tests to detect any underlying cause should be performed. If surgery is considered, patients should be evaluated by a team including neurologists, neurosurgeons, neuropsychologists, social workers, and, if needed, psychiatrists. Assessment of outcome should include standardized methods of information collection. Measures assessing quality of life and overall health status can compare epilepsy to other chronic conditions. Assessment of economic and social impact on the patient’s family should be included. The full text of the panel’s statement follows. What Is Epilepsy? Epilepsy is common. About 10 percent of all Americans will have at least one seizure at some time. Many people have one or a few attacks and then never have another one. For those with recurrent seizures, about 70 percent are satisfactorily controlled with antiepileptic drugs. Of the 150,000 people who develop epilepsy each year, 10 to 20 percent prove to have “medically intractable epilepsy.” Many of these patients and their families have to deal with a chronic disorder that impairs the quality of life for all concerned. Brain surgery may be an alternative treatment if antiepileptic drugs fail, and it is being used more often. Several centers have reported success, and increasing numbers of patients are being referred for surgery, including NIH Consensus Statement on Surgery for Epilepsy 329 many children. Improved technology has made it possible to identify more accurately where seizures originate in the brain (epileptic regions), and advances in surgery have made operative management safer. As a result, investigators have estimated that 2,000 to 5,000 new patients in the United States might be suitable for operations each year, compared with the present annual rate of about 500. Nevertheless, controlled trials have not been done, and there is disagreement among investigators about the choices and application of methods to evaluate patients for surgery, which procedures should be done, and how best to assess outcome. For these reasons, this consensus conference was organized. There is no precise definition of intractable epilepsy. Among the considerations are seizure frequency, seizure type, severity of attacks, and impact on quality of life. Before seizures are deemed intractable it is necessary to be certain that the correct drugs have been used in the correct amounts. Complex partial seizures are more likely to be intractable than tonic-clonic or other common forms of epilepsy. In uncontrolled complex partial seizures, the frequency of seizures varies from fewer than one a week to five or more each day. The clinical manifestations also vary in different patients. Some are not apparent to anyone but the patient; others disrupt daily activities and are socially embarrassing. If a patient falls during seizures that occur only a few times a year, repeated injuries and trips to emergency rooms can make life miserable. Even one seizure a year may disqualify a person from having a driver’s license. Disability is also influenced by the reaction of the patient’s family, friends, teachers, or employers. All of these factors have an impact on what is judged severe enough to warrant consideration of surgical therapy. There are other reasons to consider surgical therapy. For instance, repeated seizures may have adverse effects on the brain, leading to progressive cerebral degeneration and more severe clinical handicaps. Chronic use of antiepileptic drugs may cause toxic syndromes and may also have adverse effects on learning, scholastic achievement, development, and job performance. On the other hand, surgery has risks and costs that have to be considered. Before a patient is accepted for surgery, it is necessary to be certain of the diagnosis and the adequacy of previous drug therapy. Evaluation for surgery includes several methods: video-monitoring, brain imaging, different kinds of electroencephalography, and neuropsychological tests. The best combination of these studies has yet to be defined. Investigators do not 330 Seizures and Epilepsy agree about the preoperative need to identify areas of the brain that control speech. Similarly, there are differences of opinion about the specific surgical procedures that produce the best outcomes for different kinds of attacks. Anterior temporal lobe operations and other cortical resections involve the removal of epileptic regions from the temporal lobe and other areas of the brain and are done for complex partial seizures. Corpus callosotomy involves the severing of connections between the right and left sides of the brain and is used for some types of generalized attacks; corpus callosotomy and hemispherectomy can be used for seizures with childhood hemiplegia. This consensus conference was designed to address the following questions: · How should patients be selected? · What evaluation is necessary to localize epileptic regions? · What procedures are appropriate for specific epilepsies? · How should outcome be assessed? · Directions for future research--should a controlled trial be done? If so, for what seizure types? To address these questions, the National Institute of Neurological Disorders and Stroke and the Office of Medical Applications of Research of the National Institutes of Health convened a Consensus Development Conference on Surgery for Epilepsy on March 19-21, 1990. After a day and a half of presentations by experts and discussion by the audience, a consensus panel drawn from specialists and generalists from the medical profession and related scientific disciplines, clinical investigators, and public representatives considered the evidence and came to the following conclusions. How Should Patients Be Selected? Patients with unsatisfactory seizure control often seek alternative care. The number or severity of the seizures may be unacceptable to the patient, family, or treating physician. Other reasons for referral include the results of diagnostic tests that may show a structural focal brain lesion, unsatisfactory psychosocial adaptation due to poor seizure control, unacceptable sedation, or other drug side effects. Such patients, especially those with persistent complex partial seizures and some types of generalized seizures, may be candidates for surgical treatment. First, however, these patients should be referred to an adult or pediatric neurologist for further evaluation of diagnosis and treatment. NIH Consensus Statement on Surgery for Epilepsy 331 Evaluation and medical treatment of these patients may take place under the supervision of a neurologist or in an epilepsy center that provides comprehensive diagnostic and treatment services designed for patients with intractable epilepsy. By “intractable” we mean that seizures have not been brought under acceptable control with the resources available to the primary care physician or neurologist. To be effective and comprehensive, the staff of a center should include the following: neurologists with special training and experience in epilepsy; neurosurgeons with experience in epilepsy surgery; neuropsychologists; and personnel trained to deal with social, psychological, and psychiatric problems and rehabilitation for school and work. Personnel to perform ancillary neurodiagnostic assessment must also be available, including closed-circuit TV and electroencephalography (EEG) monitoring telemetry; modern neurophysiological and EEG equipment; neuroimaging capabilities, including magnetic resonance imaging (MRI); and neuropsychological testing. Some centers also have positron emission tomography (PET), single photon emission computed tomography (SPECT), or other methods of evaluating cerebral blood flow and metabolism. Before a patient is considered for surgery, evaluation should be sufficient to ensure the following: · Nonepileptic attacks have been excluded and epilepsy is, in fact, present. Cardiogenic syncope, psychogenic seizures, and other nonepileptic states can closely mimic epileptic attacks. · The epileptic seizure type and syndrome have been clarified. Primary and secondary epilepsies, partial seizures, and tonic-clonic seizures respond to different antiepileptic drugs and different surgical procedures. · Diagnostic tests have been performed to define a metabolic or structural cause of the epileptic attacks. · The patient has had a reasonable trial of the appropriate antiepileptic drugs, with adequate monitoring of compliance and the effects of the treatment. · The patient and family have received detailed information about the specific seizure disorder, available drug treatments and side effects, and alternative treatments such as surgery. If, after this evaluation, seizures prove to be intractable or drug treatment is unsatisfactory, appropriate patients should be referred to an epilepsy center to be evaluated for surgery. Referrals should be made as soon as it is clear that medical 332 Seizures and Epilepsy treatment is unlikely to result in further benefit. Early referrals may prevent the development of chronic psychosocial and physical problems that result from uncontrolled seizures. Coexisting disorders may affect the decision to operate; they may include severe psychiatric disorders, profound developmental retardation, or progressive neurodegenerative diseases. After the initial evaluation and a full unsuccessful trial of medical therapy, surgery may be considered. Patients with partial seizures and secondarily generalized seizures (attacks that begin locally and spread to both sides of the brain) are potential candidates. Secondarily generalized seizures may take the form of atonic, tonic, or tonic-clonic attacks. Patients with seizures and childhood hemiplegia may also benefit from surgery. Patients with the following seizure types are potential candidates: complex partial seizures of temporal lobe origin or other focal seizures; generalized, atonic, akinetic, or myoclonic seizures; and partial seizures with childhood hemiplegia. What Evaluation Is Necessary to Localize Epileptic Foci? Precise clinical, electrophysiologic, and imaging data are necessary to carry out surgical therapy. Neurological assessment is necessary to identify and exclude other forms of neurological disease. In all cases, EEG and MRI are used. Additional tests are often necessary for precise localization. The following electrophysiological techniques are used in establishing the diagnosis and focality of an epileptic disorder: · EEG is essential, sometimes with sleep deprivation or other activation techniques. · EEG monitoring with video (video-EEG) is used widely in the evaluation of potential surgical candidates to exclude nonepileptic seizures and to define the electroclinical characteristics of the seizures. It is often used to establish and localize consistency and validity of the epileptogenic region. · For precise cerebral localization, other more or less invasive techniques are used in some cases to establish a high degree of confidence in the electrical localization. These methods include sphenoidal leads, subdural and epidural electrodes and grids, and depth electrodes placed stereotaxically. Decisions about the need for these procedures must be individualized. NIH Consensus Statement on Surgery for Epilepsy 333 Brain Imaging Techniques Imaging techniques include x-ray computed tomography (CT), MRI, PET, and SPECT. CT has a limited role in the investigation of partial epilepsy because MRI is superior to CT in demonstrating brain tumors, vascular malformations, and focal brain atrophy. The diagnostic value of MRI in visualizing mesial temporal sclerosis and atrophy is under study. MRI is useful postoperatively to assess the extent of surgical resection. PET measures regional cerebral metabolism and blood flow. PET imaging has been quite successful in identifying the focus as an area of hypometabolism between attacks. This observation may be used in selecting patients with partial and secondarily generalized seizures for resective surgery. Because of the high costs and complexities of PET, this technology has been confined to a limited number of centers. SPECT can also be used for functional imaging of the brain because it demonstrates regional cerebral blood flow, which is linked to cerebral metabolism and can therefore be used to identify the epileptic focus. SPECT uses conventional and readily available equipment and radiopharmaceuticals. These compounds can be used to study both ictal and interictal states. In the past decade, this relatively affordable technology has become widely available. More work is needed to determine whether SPECT is as sensitive as PET in localizing the epileptic regions. Psychological tests are essential for the evaluation of varied cerebral functions, including memory and language. The intra-arterial amobarbital test is used to localize language function and to assess memory preoperatively. These diagnostic methods should be available at specialized epileptic centers. However, the data are insufficient to determine which particular patients require the more invasive and detailed techniques. Combining data from the major epilepsy centers would allow the development of a data bank or registry that should clarify many unanswered questions about the use of these diagnostic techniques. 334 Seizures and Epilepsy What Procedures Are Appropriate for Specific Epilepsies? For 60 years, there has been continuous development of the surgical management of epilepsy. There have been many advances in the scientific understanding of epilepsy, in new technologies for localizing epileptic foci, and in methods for reducing operative risk. Neither randomized controlled trials nor large community-based clinical trials have been undertaken; nevertheless, several surgical approaches have been reported to be successful and rational in managing some types of intractable epilepsy. The data are not definitive and are primarily derived from single-institution studies. Surgery for epilepsy in patients with preoperatively detected neoplasms or vascular malformations depends as much on the nature and site of the lesion as on the seizure disorder. The following discussion relates specifically to surgical procedures performed with the primary goal of alleviating a seizure disorder rather than removing a specific brain lesion. Data collected to date suggest that patients in three general categories are suitable candidates for epilepsy surgery: partial seizures of temporal or extratemporal origin, secondarily generalized seizures, or unilateral, multifocal epilepsy associated with infantile hemiplegia. Patients with Partial Seizures The largest group of surgical candidates comprises patients with complex partial seizures of temporal lobe origin. Preoperative evaluation identifies those patients with tumors or vascular malformations and can determine whether the epileptic focus is deep (in the amygdala or hippocampus) or superficial (cortical). Appropriately directed, surgical resection of epileptogenic tissue has resulted in success rates of 55 to 70 percent of patients, when success was defined as no seizures (some auras may be present) for 5 years after surgery sometimes with some patients still taking anticonvulsant medication. In some patients, surgery also results in an improved psychosocial outcome, but this has not been studied adequately. Combined morbidity and mortality rates for surgery are below 5 percent. The charges for diagnostic evaluation and surgery vary from $25,000 in uncomplicated cases to over $100,000 in those who require extensive preoperative testing, with a median charge of $40-60,000. NIH Consensus Statement on Surgery for Epilepsy 335 Partial seizures of frontal origin and from other extratemporal sites may also be treated surgically when the clinical manifestations and diagnostic studies indicate an epileptic region in a resectable area. Appropriately directed surgical resection of epileptogenic tissue may result in improvement (as defined above) in 30-50 percent of cases. The mortality rates are less than 2 percent, and the charges are slightly more than the cost of temporal lobe resection. Patients with Secondarily Generalized Seizures Some patients with generalized seizures may be candidates for surgical management. Specifically, patients with the Lennox-Gastaut syndrome or drop-attacks may be helped by section of the corpus callosum, a procedure designed to prevent rapid bilateral generalization of epileptic discharges. The procedure is most frequently recommended in patients who are prone to violent falls that often result in head injury. The seizure disorder usually persists postoperatively but seizures may become less frequent, less disabling, and less violent. Evaluation and selection of candidates have not been standardized. There is also variability of surgical technique, particularly how completely the corpus callosum is sectioned. Postoperative mortality is low, but significant complications may occur in as many as 20 percent. The charge for the surgery is often higher than for lobectomy because the procedure as done in some centers requires two operations, but the charge for the preoperative evaluation is often less. Seizures Associated with Infantile Hemiplegia In patients with intractable unilateral, multifocal epilepsy associated with infantile hemiplegia, hemispherectomy or callosotomy may be beneficial. These cases are rare, accounting for about 2 percent of all patients treated surgically for epilepsy. Success is measured not only by improvement in seizure frequency and type but also by improvement in behavior. Avoidance of complications (superficial cortical hemosiderosis and hydrocephalus) is a major consideration in the selection of surgical technique and has led to a current consensus for a “functional” hemispherectomy rather than one that is “anatomically complete.” Success rates of 50 to 70 percent are balanced by combined mortality and morbidity rates that, in the past, reached 50 percent with anatomical hemispherectomy. Initial charges are similar to those for callosotomy but are increased by subsequent charges of dealing with late complications. 336 Seizures and Epilepsy How Should Outcome Be Assessed? Most studies that have assessed the outcome of either medical or surgical treatment of epilepsy have emphasized a single measure: seizure elimination or reduction in frequency. This measurement of seizure frequency needs to be clarified. For example, is a 50-percent reduction in a person who has two complex partial seizures a week equivalent to a 50-percent reduction in a person who has two seizures a year? We recommend the use of standardized methods to collect information about the frequency and kinds of seizures the patients are having. Although we recognize the importance of seizure frequency, we recommend that future studies should use “general measures” of outcome that would take advantage of validated and quantitative methods to assess the quality of life and health status of individuals. This could be achieved by a standardized survey to assess the following: short-term surgical mortality and morbidity or complications (e.g., death, paralysis, or infection in the postoperative period); physical health (symptoms, functioning, role activities, sleep-wake cycle, and mobility); mental health (psychiatric diagnoses as well as symptoms such as anxiety or depression); neuropsychological assessment, including cognitive functioning and memory, both verbal and nonverbal; social health (personal interactions, employment, sexuality, driver’s license, and community interactions); and general health (health perceptions, including fear of death and pain, life satisfactions, and energy). Evaluation of children should include assessment of developmental progress and school performance. To evaluate each of the above, we recommend using general measures of health status and quality of life so that patients with epilepsy can be compared to patients with other chronic conditions. Epilepsy is a unique condition and we also recommend that, in addition to the general measures, supplemental information should be collected about the specific aspects of the quality of life of patients with seizures, as discussed above. This information should be gathered from family members in addition to the patients themselves. Because epilepsy affects the whole family, the family’s well-being should be part of the assessment. The assessment of any treatment of epilepsy must include analysis of the economic impact on patients, families, and society. Economic impact includes expenditures on medical care directly (surgical and hospitalization costs, medication costs, costs of allied health personnel) as well as indirect costs such as contributed care by family members and whether a patient’s income and productivity are affected positively or negatively in the future. NIH Consensus Statement on Surgery for Epilepsy 337 Assessment must be done repeatedly for several years. Data from treatment centers should be pooled to achieve statistical power sufficient to test the efficacy of treatment, as assessed by the multiple outcome measures. We recognize that individuals will emphasize different outcomes. Some may be more concerned with the reduction in seizure frequency; others may be more concerned with the effect of treatment on memory or social function. Evaluation of any therapy for intractable epilepsy must explicitly consider these patient preferences. For all of these considerations, there is a need for a standardized method of data collection so that results from different treatment centers can be combined and compared. Directions for Future Research Should a controlled trial be done? If so, for what seizure types? · The panel is impressed that surgery is beneficial for selected patients, but the optimal timing of surgery is not known. Because of current referral patterns, patients considered for temporal lobe resection tend to have had uncontrolled (intractable) epilepsy for 10 to 20 years. We therefore recommend a controlled trial of early versus late surgery to determine whether early surgery or optimal medical treatment followed by later surgery of patients with complex partial seizures will result in better health status and quality of life and may prevent additional brain damage or chronic social disability. · Investigators differ in the selection of tests for preoperative evaluation. In particular, it is not known when more extensive diagnostic tests are needed, including ictal surface EEG recording, invasive intracranial electrode recording, PET, or SPECT. A program should be developed to assess the value of these tests, and should include the development and evaluation of algorithms. This would require standardization of definitions, data collection, and central analysis of the data. · We recommend development of an outcome assessment method that combines validated measures already used to assess general health status and function in a population of patients with other chronic conditions, with special items that are sensitive to the unique characteristics of people with epilepsy and those close to them, as described in the answer to question 4. 338 Seizures and Epilepsy · We recommend that psychiatric and behavioral functions be systematically assessed before surgery and during followup to determine whether there are specific contraindications to any particular surgical procedure and whether these procedures subsequently affect behavior. · In temporal lobe surgery for partial seizures, standard and “tailored” resections are used by different groups but the results are apparently similar. The circumstances in which each technique is maximally effective should be clarified by standardized data collection including documentation of extent of surgical resection and multivariate analysis so that an appropriate trial may ultimately be planned, if needed. · Because epilepsy surgery now may be used more often in children than in the past, we recommend additional studies to determine the effects of uncontrolled seizures and antiepileptic drug therapy on the developing brain. These studies might include, but not be limited to, evaluation of sequential neurodevelopmental assessment, anatomic and metabolic imaging procedures, cognitive-linguistic-academic achievement in school, and psychosocial adaptation of the child and family. · Surgical treatment of epilepsy might not be needed if we knew more about ways to prevent brain injury or if we had more effective and less toxic anticonvulsant drugs. It is therefore necessary to support fundamental research in the basic sciences of epilepsy: developmental neurobiology, neural science, cellular pathology, neuropharmacology, and preventive epidemiology. Conclusions and Recommendations · Most epilepsy surgery is performed by teams of committed physicians at sophisticated medical centers. The number of operations is increasing rapidly. · As currently used, surgery for intractable epilepsy is capable of stopping seizures or reducing their frequency. Effects on overall health status and quality of life have not been adequately studied. · Several different diagnostic studies and surgical techniques have been used but do not clearly differ in effectiveness. · Before surgery is performed, there are three absolute requirements. First, the diagnosis of epilepsy must be ascertained. Second, there must have been an adequate trial of drug therapy; that is, the correct drugs used in the correct dosage, carefully monitored for an appropriate time. Finally, the electroclinical syndrome must be defined. NIH Consensus Statement on Surgery for Epilepsy 339 · As demand for surgery grows and it becomes available at more hospitals, quality of care must be maintained. Surgery should be performed at hospitals equipped with modern technology and staffed by multidisciplinary teams capable of preoperative diagnosis, selection of medical and surgical treatments, comprehensive postoperative evaluation, and ambulatory rehabilitative care. Rehabilitation should include the transition of patients to a seizure-free or almost seizure-free lifestyle with respect to psychological and social adjustment, education, and vocational training. · Physicians in any center or independent hospital that offers surgery for epilepsy should agree to use standardized data collection for all patients. The data should be maintained in a central registry, with respect for confidentiality. The data should include demographic information, diagnosis, clinical history, results of preoperative evaluation, and outcome assessment of quality of life and health status for at least 5 years. Outcome information should be provided to patients considering surgery so that expectations about the benefits and risks can be discussed and assessed. Online Glossaries 341 ONLINE GLOSSARIES The Internet provides access to a number of free-to-use medical dictionaries and glossaries. The National Library of Medicine has compiled the following list of online dictionaries: · ADAM Medical Encyclopedia (A.D.A.M., Inc.), comprehensive medical reference: http://www.nlm.nih.gov/medlineplus/encyclopedia.html · MedicineNet.com Medical Dictionary (MedicineNet, Inc.): http://www.medterms.com/Script/Main/hp.asp · Merriam-Webster Medical Dictionary (Inteli-Health, Inc.): http://www.intelihealth.com/IH/ · Multilingual Glossary of Technical and Popular Medical Terms in Eight European Languages (European Commission) - Danish, Dutch, English, French, German, Italian, Portuguese, and Spanish: http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html · On-line Medical Dictionary (CancerWEB): http://www.graylab.ac.uk/omd/ · Technology Glossary (National Library of Medicine) - Health Care Technology: http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm · Terms and Definitions (Office of Rare Diseases): http://rarediseases.info.nih.gov/ord/glossary_a-e.html Beyond these, MEDLINEplus contains a very user-friendly encyclopedia covering every aspect of medicine (licensed from A.D.A.M., Inc.). The ADAM Medical Encyclopedia Web site address is http://www.nlm.nih.gov/medlineplus/encyclopedia.html. ADAM is also available on commercial Web sites such as Web MD (http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a) and drkoop.com (http://www.drkoop.com/). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions and concepts will be useful in more advanced areas of research. You may choose to print various pages specifically relating to seizures and epilepsy and keep them on file. The NIH, in particular, suggests that patients with seizures and epilepsy visit the following Web sites in the ADAM Medical Encyclopedia: 342 Seizures and Epilepsy · Basic Guidelines for Seizures and Epilepsy Seizures Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003200.htm · Signs & Symptoms for Seizures and Epilepsy Amnesia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003257.htm Anosmia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003052.htm Drooling Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003048.htm Dysgeusia Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003050.htm Fever Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003090.htm Hyperventilation Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003071.htm Impairment of taste Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003050.htm Loss of bladder or bowel control Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003142.htm Online Glossaries 343 Loss of smell Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003052.htm Memory loss Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003257.htm Muscle Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm Muscle contraction Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm Muscle contractions Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003193.htm Nausea Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm Rapid breathing Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003071.htm Vomiting Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003117.htm · Diagnostics and Tests for Seizures and Epilepsy Blood pressure Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003398.htm Blood sugar level Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003482.htm 344 Seizures and Epilepsy CT scan of the head Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003786.htm EEG Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003931.htm Pulse Web site: http://www.nlm.nih.gov/medlineplus/ency/article/003399.htm · Background Topics for Seizures and Epilepsy Chronic Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002312.htm Head injury Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000028.htm Heatstroke Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000056.htm Injury or trauma to the head Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000028.htm Physical examination Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002274.htm Seizure-first aid Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000021.htm Unconscious Web site: http://www.nlm.nih.gov/medlineplus/ency/article/000022.htm Online Glossaries 345 Vital signs Web site: http://www.nlm.nih.gov/medlineplus/ency/article/002341.htm Online Dictionary Directories The following are additional online directories compiled by the National Library of Medicine, including a number of specialized medical dictionaries and glossaries: · Medical Dictionaries: Medical & Biological (World Health Organization): http://www.who.int/hlt/virtuallibrary/English/diction.htm#Medical · MEL-Michigan Electronic Library List of Online Health and Medical Dictionaries (Michigan Electronic Library): http://mel.lib.mi.us/health/health-dictionaries.html · Patient Education: Glossaries (DMOZ Open Directory Project): http://dmoz.org/Health/Education/Patient_Education/Glossaries/ · Web of Online Dictionaries (Bucknell University): http://www.yourdictionary.com/diction5.html#medicine Glossary 347 SEIZURES AND EPILEPSY GLOSSARY The following is a complete glossary of terms used in this sourcebook. The definitions are derived from official public sources including the National Institutes of Health [NIH] and the European Union [EU]. After this glossary, we list a number of additional hardbound and electronic glossaries and dictionaries that you may wish to consult. Abdomen: That portion of the body that lies between the thorax and the pelvis. [NIH] Accommodation: distances. [EU] Adjustment, especially that of the eye for various Acetylcholine: A neurotransmitter. Acetylcholine in vertebrates is the major transmitter at neuromuscular junctions, autonomic ganglia, parasympathetic effector junctions, a subset of sympathetic effector junctions, and at many sites in the central nervous system. It is generally not used as an administered drug because it is broken down very rapidly by cholinesterases, but it is useful in some ophthalmological applications. [NIH] Acidosis: A pathologic condition resulting from accumulation of acid or depletion of the alkaline reserve (bicarbonate content) in the blood and body tissues, and characterized by an increase in hydrogen ion concentration. [EU] ACTH: Adrenocorticotropic hormone. [EU] Adenosine: A nucleoside that is composed of adenine and d-ribose. Adenosine or adenosine derivatives play many important biological roles in addition to being components of DNA and RNA. Adenosine itself is a neurotransmitter. [NIH] Adolescence: The period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth. The years usually referred to as adolescence lie between 13 and 18 years of age. [NIH] Alendronate: A nonhormonal medication for the treatment of postmenopausal osteoporosis in women. This drug builds healthy bone, restoring some of the bone loss as a result of osteoporosis. [NIH] Algorithms: A procedure consisting of a sequence of algebraic formulas and/or logical steps to calculate or determine a given task. [NIH] Alopecia: Baldness; absence of the hair from skin areas where it normally is present. [EU] Aluminum: A metallic element that has the atomic number 13, atomic symbol Al, and atomic weight 26.98. [NIH] 348 Seizures and Epilepsy Amnesia: Lack or loss of memory; inability to remember past experiences. [EU] Amniocentesis: Percutaneous transabdominal puncture of the uterus during pregnancy to obtain amniotic fluid. It is commonly used for fetal karyotype determination in order to diagnose abnormal fetal conditions. [NIH] Amphetamine: A powerful central nervous system stimulant and sympathomimetic. Amphetamine has multiple mechanisms of action including blocking uptake of adrenergics and dopamine, stimulation of release of monamines, and inhibiting monoamine oxidase. Amphetamine is also a drug of abuse and a psychotomimetic. The l- and the d,l-forms are included here. The l-form has less central nervous system activity but stronger cardiovascular effects. The d-form is dextroamphetamine. [NIH] Amygdala: Almond-shaped group of basal nuclei anterior to the inferior horn of the lateral ventricle of the brain, within the temporal lobe. The amygdala is part of the limbic system. [NIH] Anaesthesia: Loss of feeling or sensation. Although the term is used for loss of tactile sensibility, or of any of the other senses, it is applied especially to loss of the sensation of pain, as it is induced to permit performance of surgery or other painful procedures. [EU] Anaphylaxis: An acute hypersensitivity reaction due to exposure to a previously encountered antigen. The reaction may include rapidly progressing urticaria, respiratory distress, vascular collapse, systemic shock, and death. [NIH] Anatomical: Pertaining to anatomy, or to the structure of the organism. [EU] Anemia: A reduction in the number of circulating erythrocytes or in the quantity of hemoglobin. [NIH] Anesthesia: A state characterized by loss of feeling or sensation. This depression of nerve function is usually the result of pharmacologic action and is induced to allow performance of surgery or other painful procedures. [NIH] Anesthesiology: A specialty concerned with the study of anesthetics and anesthesia. [NIH] Anorexia: Lack or loss of the appetite for food. [EU] Anosmia: Absence of the sense of smell; called also anosphrasia and olfactory anaesthesia. [EU] Antibiotic: A chemical substance produced by a microorganism which has the capacity, in dilute solutions, to inhibit the growth of or to kill other microorganisms. Antibiotics that are sufficiently nontoxic to the host are used as chemotherapeutic agents in the treatment of infectious diseases of man, animals and plants. [EU] Glossary 349 Anticonvulsant: An agent that prevents or relieves convulsions. [EU] Antidepressant: An agent that stimulates the mood of a depressed patient, including tricyclic antidepressants and monoamine oxidase inhibitors. [EU] Antiepileptic: An agent that combats epilepsy. [EU] Anxiety: The unpleasant emotional state consisting of psychophysiological responses to anticipation of unreal or imagined danger, ostensibly resulting from unrecognized intrapsychic conflict. Physiological concomitants include increased heart rate, altered respiration rate, sweating, trembling, weakness, and fatigue; psychological concomitants include feelings of impending danger, powerlessness, apprehension, and tension. [EU] Aphasia: Defect or loss of the power of expression by speech, writing, or signs, or of comprehending spoken or written language, due to injury or disease of the brain centres. [EU] Apnea: A transient absence of spontaneous respiration. [NIH] Arrhythmia: Any variation from the normal rhythm of the heart beat, including sinus arrhythmia, premature beat, heart block, atrial fibrillation, atrial flutter, pulsus alternans, and paroxysmal tachycardia. [EU] Arterial: Pertaining to an artery or to the arteries. [EU] Asphyxia: A pathological condition caused by lack of oxygen, manifested in impending or actual cessation of life. [NIH] Auditory: Pertaining to the sense of hearing. [EU] Aura: A subjective sensation or motor phenomenon that precedes and marks the of a paroxysmal attack, such as an epileptic attack on set. [EU] Autoimmunity: Process whereby the immune system reacts against the body's own tissues. Autoimmunity may produce or be caused by autoimmune diseases. [NIH] Automatism: Aimless and apparently undirected behaviour that is not under conscious control and is performed without conscious knowledge; seen in psychomotor epilepsy, catatonic schizophrenia, psychogenic fugue, and other conditions. Called also automatic behaviour. [EU] Autonomic: Self-controlling; functionally independent. [EU] Bacteria: Unicellular prokaryotic microorganisms which generally possess rigid cell walls, multiply by cell division, and exhibit three principal forms: round or coccal, rodlike or bacillary, and spiral or spirochetal. [NIH] Benign: Not malignant; not recurrent; favourable for recovery. [EU] Benzodiazepines: A two-ring heterocyclic compound consisting of a benzene ring fused to a diazepine ring. Permitted is any degree of hydrogenation, any substituents and any H-isomer. [NIH] 350 Seizures and Epilepsy Bilateral: Having two sides, or pertaining to both sides. [EU] Biochemical: Relating to biochemistry; characterized by, produced by, or involving chemical reactions in living organisms. [EU] Biopsy: The removal and examination, usually microscopic, of tissue from the living body, performed to establish precise diagnosis. [EU] Blinking: Brief closing of the eyelids by involuntary normal periodic closing, as a protective measure, or by voluntary action. [NIH] Boron: Boron. A trace element with the atomic symbol B, atomic number 5, and atomic weight 10.81. Boron-10, an isotope of boron, is used as a neutron absorber in boron neutron capture therapy. [NIH] Calmodulin: A heat-stable, low-molecular-weight activator protein found mainly in the brain and heart. The binding of calcium ions to this protein allows this protein to bind to cyclic nucleotide phosphodiesterases and to adenyl cyclase with subsequent activation. Thereby this protein modulates cyclic AMP and cyclic GMP levels. [NIH] Camping: Living outdoors as a recreational activity. [NIH] Cannabinoids: Compounds extracted from Cannabis sativa L. and metabolites having the cannabinoid structure. The most active constituents are tetrahydrocannabinol, cannabinol, and cannabidiol. [NIH] Capsules: Hard or soft soluble containers used for the oral administration of medicine. [NIH] Carbamazepine: An anticonvulsant used to control grand mal and psychomotor or focal seizures. Its mode of action is not fully understood, but some of its actions resemble those of phenytoin; although there is little chemical resemblance between the two compounds, their three-dimensional structure is similar. [NIH] Carbohydrate: An aldehyde or ketone derivative of a polyhydric alcohol, particularly of the pentahydric and hexahydric alcohols. They are so named because the hydrogen and oxygen are usually in the proportion to form water, (CH2O)n. The most important carbohydrates are the starches, sugars, celluloses, and gums. They are classified into mono-, di-, tri-, poly- and heterosaccharides. [EU] Cardiac: Pertaining to the heart. [EU] Cardiogenic: Originating in the heart; caused by abnormal function of the heart. [EU] Cardiovascular: Pertaining to the heart and blood vessels. [EU] Caspases: A family of intracellular cysteine endopeptidases. They play a key role in inflammation and mammalian APOPTOSIS. They are specific for aspartic acid at the P1 position. They are divided into two classes based on Glossary 351 the lengths of their N-terminal prodomains. Caspases-1,-2,-4,-5,-8, and -10 have long prodomains and -3,-6,-7,-9 have short prodomains. EC 3.4.22.-. [NIH] Catalase: An oxidoreductase that catalyzes the conversion of hydrogen peroxide to water and oxygen. It is present in many animal cells. A deficiency of this enzyme results in acatalasia. EC 1.11.1.6. [NIH] Catheter: A tubular, flexible, surgical instrument for withdrawing fluids from (or introducing fluids into) a cavity of the body, especially one for introduction into the bladder through the urethra for the withdraw of urine. [EU] Caudal: Denoting a position more toward the cauda, or tail, than some specified point of reference; same as inferior, in human anatomy. [EU] Cerebellar: Pertaining to the cerebellum. [EU] Cerebellum: Part of the metencephalon that lies in the posterior cranial fossa behind the brain stem. It is concerned with the coordination of movement. [NIH] Cerebral: Of or pertaining of the cerebrum or the brain. [EU] Cerebrospinal: Pertaining to the brain and spinal cord. [EU] Cerebrovascular: Pertaining to the blood vessels of the cerebrum, or brain. [EU] Ceroid: A naturally occurring lipid pigment with histochemical characteristics similar to lipofuscin. It accumulates in various tissues in certain experimental and pathological conditions. [NIH] Chemotherapy: The treatment of disease by means of chemicals that have a specific toxic effect upon the disease - producing microorganisms or that selectively destroy cancerous tissue. [EU] Cholesterol: The principal sterol of all higher animals, distributed in body tissues, especially the brain and spinal cord, and in animal fats and oils. [NIH] Chronic: Persisting over a long period of time. [EU] Chronobiology: The study of biological systems as affected by time. Aging, biological rhythms, and cyclic phenomena are included. Statistical, computer-aided mathematical procedures are used to describe, in mathematical terminology, various biological functions over time. [NIH] Cisplatin: An inorganic and water-soluble platinum complex. After undergoing hydrolysis, it reacts with DNA to produce both intra and interstrand crosslinks. These crosslinks appear to impair replication and transcription of DNA. The cytotoxicity of cisplatin correlates with cellular arrest in the G2 phase of the cell cycle. [NIH] Citrus: Any tree or shrub of the rue family or the fruit of these plants. [NIH] Clonazepam: An anticonvulsant used for several types of seizures, 352 Seizures and Epilepsy including myotonic or atonic seizures, photosensitive epilepsy, and absence seizures, although tolerance may develop. It is seldom effective in generalized tonic-clonic or partial seizures. The mechanism of action appears to involve the enhancement of GABA receptor responses. [NIH] Clonic: Pertaining to or of the nature of clonus. [EU] Cocaine: An alkaloid ester extracted from the leaves of plants including coca. It is a local anesthetic and vasoconstrictor and is clinically used for that purpose, particularly in the eye, ear, nose, and throat. It also has powerful central nervous system effects similar to the amphetamines and is a drug of abuse. Cocaine, like amphetamines, acts by multiple mechanisms on brain catecholaminergic neurons; the mechanism of its reinforcing effects is thought to involve inhibition of dopamine uptake. [NIH] Comorbidity: The presence of co-existing or additional diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study. Comorbidity may affect the ability of affected individuals to function and also their survival; it may be used as a prognostic indicator for length of hospital stay, cost factors, and outcome or survival. [NIH] Conception: The onset of pregnancy, marked by implantation of the blastocyst; the formation of a viable zygote. [EU] Conduction: The transfer of sound waves, heat, nervous impulses, or electricity. [EU] Confusion: Disturbed orientation in regard to time, place, or person, sometimes accompanied by disordered consciousness. [EU] Consciousness: Sense of awareness of self and of the environment. [NIH] Contraceptive: conception. [EU] An agent that diminishes the likelihood of or prevents Convulsion: A violent involuntary contraction or series of contractions of the voluntary muscles. [EU] Cortex: The outer layer of an organ or other body structure, as distinguished from the internal substance. [EU] Curative: Tending to overcome disease and promote recovery. [EU] Cutaneous: Pertaining to the skin; dermal; dermic. [EU] Cyclic: Pertaining to or occurring in a cycle or cycles; the term is applied to chemical compounds that contain a ring of atoms in the nucleus. [EU] Cysteine: A thiol-containing non-essential amino acid that is oxidized to form cystine. [NIH] Cytokines: Non-antibody proteins secreted by inflammatory leukocytes and some non-leukocytic cells, that act as intercellular mediators. They differ Glossary 353 from classical hormones in that they are produced by a number of tissue or cell types rather than by specialized glands. They generally act locally in a paracrine or autocrine rather than endocrine manner. [NIH] Dehydration: The condition that results from excessive loss of body water. Called also anhydration, deaquation and hypohydration. [EU] Dementia: An acquired organic mental disorder with loss of intellectual abilities of sufficient severity to interfere with social or occupational functioning. The dysfunction is multifaceted and involves memory, behavior, personality, judgment, attention, spatial relations, language, abstract thought, and other executive functions. The intellectual decline is usually progressive, and initially spares the level of consciousness. [NIH] Dendrites: Extensions of the nerve cell body. They are short and branched and receive stimuli from other neurons. [NIH] Dendritic: 1. Branched like a tree. 2. Pertaining to or possessing dendrites. [EU] Deprivation: Loss or absence of parts, organs, powers, or things that are needed. [EU] Diarrhea: Passage of excessively liquid or excessively frequent stools. [NIH] Disorientation: The loss of proper bearings, or a state of mental confusion as to time, place, or identity. [EU] Dizziness: An imprecise term which may refer to a sense of spatial disorientation, motion of the environment, or lightheadedness. [NIH] Dorsal: 1. Pertaining to the back or to any dorsum. 2. Denoting a position more toward the back surface than some other object of reference; same as posterior in human anatomy; superior in the anatomy of quadrupeds. [EU] Dysgeusia: Distortion of the sense of taste. [EU] Dyskinesia: Impairment of the power of voluntary movement, resulting in fragmentary or incomplete movements. [EU] Dysphagia: Difficulty in swallowing. [EU] Dysplasia: Abnormality of development; in pathology, alteration in size, shape, and organization of adult cells. [EU] Dystrophy: Any disorder arising from defective or faulty nutrition, especially the muscular dystrophies. [EU] Eclampsia: Convulsions and coma occurring in a pregnant or puerperal woman, associated with preeclampsia, i.e., with hypertension, edema, and/or proteinuria. [EU] Edema: Excessive amount of watery fluid accumulated in the intercellular spaces, most commonly present in subcutaneous tissue. [NIH] Electroacupuncture: A form of acupuncture using low frequency electrically 354 Seizures and Epilepsy stimulated needles to produce analgesia and anesthesia and to treat disease. [NIH] Electroencephalography: The recording of the electric currents developed in the brain, by means of electrodes applied to the scalp, to the surface of the brain (intracranial e.) or placed within the substance of the brain (depth e.). [EU] Electrophysiological: Pertaining to electrophysiology, that is a branch of physiology that is concerned with the electric phenomena associated with living bodies and involved in their functional activity. [EU] Electroshock: Induction of a stress reaction in experimental subjects by means of an electrical shock; applies to either convulsive or non-convulsive states. [NIH] Encephalitis: Inflammation of the brain. [EU] Encephalopathy: Any degenerative disease of the brain. [EU] Endocarditis: Exudative and proliferative inflammatory alterations of the endocardium, characterized by the presence of vegetations on the surface of the endocardium or in the endocardium itself, and most commonly involving a heart valve, but sometimes affecting the inner lining of the cardiac chambers or the endocardium elsewhere. It may occur as a primary disorder or as a complication of or in association with another disease. [EU] Endogenous: Developing or originating within the organisms or arising from causes within the organism. [EU] Enzyme: A protein molecule that catalyses chemical reactions of other substances without itself being destroyed or altered upon completion of the reactions. Enzymes are classified according to the recommendations of the Nomenclature Committee of the International Union of Biochemistry. Each enzyme is assigned a recommended name and an Enzyme Commission (EC) number. They are divided into six main groups; oxidoreductases, transferases, hydrolases, lyases, isomerases, and ligases. [EU] Epidemiological: Relating to, or involving epidemiology. [EU] Epidural: Situated upon or outside the dura mater. [EU] Estradiol: The most potent mammalian estrogenic hormone. It is produced in the ovary, placenta, testis, and possibly the adrenal cortex. [NIH] Ethanol: A clear, colorless liquid rapidly absorbed from the gastrointestinal tract and distributed throughout the body. It has bactericidal activity and is used often as a topical disinfectant. It is widely used as a solvent and preservative in pharmaceutical preparations as well as serving as the primary ingredient in alcoholic beverages. [NIH] Ethosuximide: An anticonvulsant especially useful in the treatment of absence seizures unaccompanied by other types of seizures. [NIH] Glossary 355 Exanthema: Exanthem; an eruptive disease or its symptomatic eruption. [EU] Excitation: An act of irritation or stimulation or of responding to a stimulus; the addition of energy, as the excitation of a molecule by absorption of photons. [EU] Fatigue: The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced efficiency to respond to stimuli. [NIH] Febrile: Pertaining to or characterized by fever. [EU] Fibrosis: The formation of fibrous tissue; fibroid or fibrous degeneration [EU] Fluoxetine: The first highly specific serotonin uptake inhibitor. It is used as an antidepressant and often has a more acceptable side-effects profile than traditional antidepressants. [NIH] Flurothyl: A convulsant primarily used in experimental animals. It was formerly used to induce convulsions as a alternative to electroshock therapy. [NIH] GABA: The most common inhibitory neurotransmitter in the central nervous system. [NIH] Ganglia: Clusters of multipolar neurons surrounded by a capsule of loosely organized connective tissue located outside the central nervous system. [NIH] Gastroenteritis: An acute inflammation of the lining of the stomach and intestines, characterized by anorexia, nausea, diarrhoea, abdominal pain, and weakness, which has various causes, including food poisoning due to infection with such organisms as Escherichia coli, Staphylococcus aureus, and Salmonella species; consumption of irritating food or drink; or psychological factors such as anger, stress, and fear. Called also enterogastritis. [EU] Gestation: The period of development of the young in viviparous animals, from the time of fertilization of the ovum until birth. [EU] Gestures: Movement of a part of the body for the purpose of communication. [NIH] Glucose: D-glucose, a monosaccharide (hexose), C6H12O6, also known as dextrose (q.v.), found in certain foodstuffs, especially fruits, and in the normal blood of all animals. It is the end product of carbohydrate metabolism and is the chief source of energy for living organisms, its utilization being controlled by insulin. Excess glucose is converted to glycogen and stored in the liver and muscles for use as needed and, beyond that, is converted to fat and stored as adipose tissue. Glucose appears in the urine in diabetes mellitus. [EU] Gluten: The protein of wheat and other grains which gives to the dough its tough elastic character. [EU] 356 Seizures and Epilepsy Gonadal: Pertaining to a gonad. [EU] Gout: Hereditary metabolic disorder characterized by recurrent acute arthritis, hyperuricemia and deposition of sodium urate in and around the joints, sometimes with formation of uric acid calculi. [NIH] Gynecology: A medical-surgical specialty concerned with the physiology and disorders primarily of the female genital tract, as well as female endocrinology and reproductive physiology. [NIH] Hemiplegia: Paralysis of one side of the body. [EU] Hemorrhage: Bleeding or escape of blood from a vessel. [NIH] Hemosiderosis: Conditions in which there is a generalized increase in the iron stores of body tissues, particularly of liver and the reticuloendothelial system, without demonstrable tissue damage. The name refers to the presence of stainable iron in the tissue in the form of hemosiderin. [NIH] Heredity: 1. The genetic transmission of a particular quality or trait from parent to offspring. 2. The genetic constitution of an individual. [EU] Hormonal: Pertaining to or of the nature of a hormone. [EU] Hormones: Chemical substances having a specific regulatory effect on the activity of a certain organ or organs. The term was originally applied to substances secreted by various endocrine glands and transported in the bloodstream to the target organs. It is sometimes extended to include those substances that are not produced by the endocrine glands but that have similar effects. [NIH] Hydrocephalus: A condition marked by dilatation of the cerebral ventricles, most often occurring secondarily to obstruction of the cerebrospinal fluid pathways, and accompanied by an accumulation of cerebrospinal fluid within the skull; the fluid is usually under increased pressure, but occasionally may be normal or nearly so. It is typically characterized by enlargement of the head, prominence of the forehead, brain atrophy, mental deterioration, and convulsions; may be congenital or acquired; and may be of sudden onset (acute h.) or be slowly progressive (chronic or primary b.). [EU] Hyperbaric: Characterized by greater than normal pressure or weight; applied to gases under greater than atmospheric pressure, as hyperbaric oxygen, or to a solution of greater specific gravity than another taken as a standard of reference. [EU] Hypnotic: A drug that acts to induce sleep. [EU] Hypogonadism: A condition resulting from or characterized by abnormally decreased functional activity of the gonads, with retardation of growth and sexual development. [EU] Hypothalamus: Ventral part of the diencephalon extending from the region Glossary 357 of the optic chiasm to the caudal border of the mammillary bodies and forming the inferior and lateral walls of the third ventricle. [NIH] Hysteria: Historical term for a chronic, but fluctuating, disorder beginning in early life and characterized by recurrent and multiple somatic complaints not apparently due to physical illness. This diagnosis is not used in contemporary practice. [NIH] Idiopathic: Of the nature of an idiopathy; self-originated; of unknown causation. [EU] Iloprost: An eicosanoid, derived from the cyclooxygenase pathway of arachidonic acid metabolism. It is a stable and synthetic analog of EPOPROSTENOL, but with a longer half-life than the parent compound. Its actions are similar to prostacyclin. Iloprost produces vasodilation and inhibits platelet aggregation. [NIH] Immunization: The induction of immunity. [EU] Indicative: That indicates; that points out more or less exactly; that reveals fairly clearly. [EU] Induction: The act or process of inducing or causing to occur, especially the production of a specific morphogenetic effect in the developing embryo through the influence of evocators or organizers, or the production of anaesthesia or unconsciousness by use of appropriate agents. [EU] Infantile: Pertaining to an infant or to infancy. [EU] Inflammation: A pathological process characterized by injury or destruction of tissues caused by a variety of cytologic and chemical reactions. It is usually manifested by typical signs of pain, heat, redness, swelling, and loss of function. [NIH] Infusion: The therapeutic introduction of a fluid other than blood, as saline solution, solution, into a vein. [EU] Ingestion: The act of taking food, medicines, etc., into the body, by mouth. [EU] Insulin: A protein hormone secreted by beta cells of the pancreas. Insulin plays a major role in the regulation of glucose metabolism, generally promoting the cellular utilization of glucose. It is also an important regulator of protein and lipid metabolism. Insulin is used as a drug to control insulindependent diabetes mellitus. [NIH] Intrinsic: Situated entirely within or pertaining exclusively to a part. [EU] Intubation: The insertion of a tube into a body canal or hollow organ, as into the trachea or stomach. [EU] Invasive: 1. Having the quality of invasiveness. 2. Involving puncture or incision of the skin or insertion of an instrument or foreign material into the body; said of diagnostic techniques. [EU] 358 Seizures and Epilepsy Iodine: A nonmetallic element of the halogen group that is represented by the atomic symbol I, atomic number 53, and atomic weight of 126.90. It is a nutritionally essential element, especially important in thyroid hormone synthesis. In solution, it has anti-infective properties and is used topically. [NIH] Lesion: Any pathological or traumatic discontinuity of tissue or loss of function of a part. [EU] Libido: Sexual desire. [EU] Limbic: Pertaining to a limbus, or margin; forming a border around. [EU] Lithium: Lithium. An element in the alkali metals family. It has the atomic symbol Li, atomic number 3, and atomic weight 6.94. Salts of lithium are used in treating manic-depressive disorders. [NIH] Lobe: A more or less well-defined portion of any organ, especially of the brain, lungs, and glands. Lobes are demarcated by fissures, sulci, connective tissue, and by their shape. [EU] Localization: 1. the determination of the site or place of any process or lesion. 2. restriction to a circumscribed or limited area. 3. prelocalization. [EU] Lorazepam: An anti-anxiety agent with few side effects. It also has hypnotic, anticonvulsant, and considerable sedative properties and has been proposed as a preanesthetic agent. [NIH] Lumbar: Pertaining to the loins, the part of the back between the thorax and the pelvis. [EU] Lupus: A form of cutaneous tuberculosis. It is seen predominantly in women and typically involves the nasal, buccal, and conjunctival mucosa. [NIH] Lymphoma: Any neoplastic disorder of the lymphoid tissue, the term lymphoma often is used alone to denote malignant lymphoma. [EU] Magnetoencephalography: The measurement of magnetic fields over the head generated by electric currents in the brain. As in any electrical conductor, electric fields in the brain are accompanied by orthogonal magnetic fields. The measurement of these fields provides information about the localization of brain activity which is complementary to that provided by electroencephalography. Magnetoencephalography may be used alone or together with electroencephalography, for measurement of spontaneous or evoked activity, and for research or clinical purposes. [NIH] Malabsorption: Impaired intestinal absorption of nutrients. [EU] Malformation: A morphologic defect resulting from an intrinsically abnormal developmental process. [EU] Mastocytosis: A group of diseases resulting from proliferation of mast cells. [NIH] Glossary 359 Mediator: An object or substance by which something is mediated, such as (1) a structure of the nervous system that transmits impulses eliciting a specific response; (2) a chemical substance (transmitter substance) that induces activity in an excitable tissue, such as nerve or muscle; or (3) a substance released from cells as the result of the interaction of antigen with antibody or by the action of antigen with a sensitized lymphocyte. [EU] Membrane: A thin layer of tissue which covers a surface, lines a cavity or divides a space or organ. [EU] Meningitis: Inflammation of the meninges. When it affects the dura mater, the disease is termed pachymeningitis; when the arachnoid and pia mater are involved, it is called leptomeningitis, or meningitis proper. [EU] Menopause: Cessation of menstruation in the human female, occurring usually around the age of 50. [EU] Menstruation: The cyclic, physiologic discharge through the vagina of blood and mucosal tissues from the nonpregnant uterus; it is under hormonal control and normally recurs, usually at approximately four-week intervals, in the absence of pregnancy during the reproductive period (puberty through menopause) of the female of the human and a few species of primates. It is the culmination of the menstrual cycle. [EU] Mental: Pertaining to the mind; psychic. 2. (L. mentum chin) pertaining to the chin. [EU] Methylphenidate: A central nervous system stimulant used most commonly in the treatment of attention-deficit disorders in children and for narcolepsy. Its mechanisms appear to be similar to those of dextroamphetamine. [NIH] Microdialysis: A technique for measuring extracellular concentrations of substances in tissues, usually in vivo, by means of a small probe equipped with a semipermeable membrane. Substances may also be introduced into the extracellular space through the membrane. [NIH] Mobility: Capability of movement, of being moved, or of flowing freely. [EU] Monotherapy: A therapy which uses only one drug. [EU] Muscimol: Neurotoxic isoxazole isolated from Amanita muscaria and A. phalloides and also obtained by decarboxylation of ibotenic acid. It is a potent agonist at GABA-A receptors and is used mainly as an experimental tool in animal and tissue studies. [NIH] Muscle Contraction: A process leading to shortening and/or development of tension in muscle tissue. Muscle contraction occurs by a sliding filament mechanism whereby actin filaments slide inward among the myosin filaments. [NIH] Nadir: The lowest point; point of greatest adversity or despair. [EU] 360 Seizures and Epilepsy Nausea: An unpleasant sensation, vaguely referred to the epigastrium and abdomen, and often culminating in vomiting. [EU] Neocortex: The largest portion of the cerebral cortex. It is composed of neurons arranged in six layers. [NIH] Neonatal: Pertaining to the first four weeks after birth. [EU] Neoplasms: New abnormal growth of tissue. Malignant neoplasms show a greater degree of anaplasia and have the properties of invasion and metastasis, compared to benign neoplasms. [NIH] Nervousness: Excessive excitability and irritability, with mental and physical unrest. [EU] Neural: 1. Pertaining to a nerve or to the nerves. 2. Situated in the region of the spinal axis, as the neutral arch. [EU] Neuroanatomy: Study of the anatomy of the nervous system as a specialty or discipline. [NIH] Neurology: A medical specialty concerned with the study of the structures, functions, and diseases of the nervous system. [NIH] Neuronal: Pertaining to a neuron or neurons (= conducting cells of the nervous system). [EU] Neurons: The basic cellular units of nervous tissue. Each neuron consists of a body, an axon, and dendrites. Their purpose is to receive, conduct, and transmit impulses in the NERVOUS SYSTEM. [NIH] Neuropeptides: Peptides released by neurons as intercellular messengers. Many neuropeptides are also hormones released by non-neuronal cells. [NIH] Neuropharmacology: The branch of pharmacology dealing especially with the action of drugs upon various parts of the nervous system. [NIH] Neurophysiology: The scientific discipline concerned with the physiology of the nervous system. [NIH] Neuropsychology: A branch of psychology which investigates the correlation between experience or behavior and the basic neurophysiological processes. The term neuropsychology stresses the dominant role of the nervous system. It is a more narrowly defined field than physiological psychology or psychophysiology. [NIH] Neurosciences: The scientific disciplines concerned with the embryology, anatomy, physiology, biochemistry, pharmacology, etc., of the nervous sytem. [NIH] Neurosurgery: A surgical specialty concerned with the treatment of diseases and disorders of the brain, spinal cord, and peripheral and sympathetic nervous system. [NIH] Neurotransmitter: Any of a group of substances that are released on Glossary 361 excitation from the axon terminal of a presynaptic neuron of the central or peripheral nervous system and travel across the synaptic cleft to either excite or inhibit the target cell. Among the many substances that have the properties of a neurotransmitter are acetylcholine, norepinephrine, epinephrine, dopamine, glycine, y-aminobutyrate, glutamic acid, substance P, enkephalins, endorphins, and serotonin. [EU] Niacin: Water-soluble vitamin of the B complex occurring in various animal and plant tissues. Required by the body for the formation of coenzymes NAD and NADP. Has pellagra-curative, vasodilating, and antilipemic properties. [NIH] Nicotine: Nicotine is highly toxic alkaloid. It is the prototypical agonist at nicotinic cholinergic receptors where it dramatically stimulates neurons and ultimately blocks synaptic transmission. Nicotine is also important medically because of its presence in tobacco smoke. [NIH] Nimodipine: A calcium channel blockader with preferential cerebrovascular activity. It has marked cerebrovascular dilating effects and lowers blood pressure. [NIH] Obstetrics: A medical-surgical specialty concerned with management and care of women during pregnancy, parturition, and the puerperium. [NIH] Octreotide: A potent, long-acting somatostatin octapeptide analog which has a wide range of physiological actions. It inhibits growth hormone secretion, is effective in the treatment of hormone-secreting tumors from various organs, and has beneficial effects in the management of many pathological states including diabetes mellitus, orthostatic hypertension, hyperinsulinism, hypergastrinemia, and small bowel fistula. [NIH] Ophthalmology: A surgical specialty concerned with the structure and function of the eye and the medical and surgical treatment of its defects and diseases. [NIH] Orbital: Pertaining to the orbit (= the bony cavity that contains the eyeball). [EU] Overdose: 1. To administer an excessive dose. 2. An excessive dose. [EU] Pacemaker: An object or substance that influences the rate at which a certain phenomenon occurs; often used alone to indicate the natural cardiac pacemaker or an artificial cardiac pacemaker. In biochemistry, a substance whose rate of reaction sets the pace for a series of interrelated reactions. [EU] Paediatric: Of or relating to the care and medical treatment of children; belonging to or concerned with paediatrics. [EU] Parasitic: Pertaining to, of the nature of, or caused by a parasite. [EU] Parietal: 1. Of or pertaining to the walls of a cavity. 2. Pertaining to or located near the parietal bone, as the parietal lobe. [EU] 362 Seizures and Epilepsy Paroxysmal: Recurring in paroxysms (= spasms or seizures). [EU] Pediatrics: A medical specialty concerned with maintaining health and providing medical care to children from birth to adolescence. [NIH] Pentylenetetrazole: A pharmaceutical agent that displays activity as a central nervous system and respiratory stimulant. It is considered a noncompetitive GABA antagonist. Pentylenetetrazole has been used experimentally to study seizure phenomenon and to identify pharmaceuticals that may control seizure susceptibility. [NIH] Perinatal: Pertaining to or occurring in the period shortly before and after birth; variously defined as beginning with completion of the twentieth to twenty-eighth week of gestation and ending 7 to 28 days after birth. [EU] Perphenazine: An antipsychotic phenothiazine derivative with actions and uses similar to those of chlorpromazine. [NIH] Perspiration: Sweating; the functional secretion of sweat. [EU] Phenobarbital: A barbituric acid derivative that acts as a nonselective central nervous system depressant. It promotes binding to inhibitory GABA subtype receptors, and modulates chloride currents through receptor channels. It also inhibits glutamate induced depolarizations. [NIH] Phenotype: The outward appearance of the individual. It is the product of interactions between genes and between the genotype and the environment. This includes the killer phenotype, characteristic of yeasts. [NIH] Phenytoin: An anticonvulsant that is used in a wide variety of seizures. It is also an anti-arrhythmic and a muscle relaxant. The mechanism of therapeutic action is not clear, although several cellular actions have been described including effects on ion channels, active transport, and general membrane stabilization. The mechanism of its muscle relaxant effect appears to involve a reduction in the sensitivity of muscle spindles to stretch. Phenytoin has been proposed for several other therapeutic uses, but its use has been limited by its many adverse effects and interactions with other drugs. [NIH] Physostigmine: A cholinesterase inhibitor that is rapidly absorbed through membranes. It can be applied topically to the conjunctiva. It also can cross the blood-brain barrier and is used when central nervous system effects are desired, as in the treatment of severe anticholinergic toxicity. [NIH] Picrotoxin: A noncompetitive antagonist at GABA-A receptors and thus a convulsant. Picrotoxin blocks the GABA-activated chloride ionophore. Although it is most often used as a research tool, it has been used as a CNS stimulant and an antidote in poisoning by CNS depressants, especially the barbiturates. [NIH] Pilocarpine: A slowly hydrolyzed muscarinic agonist with no nicotinic Glossary 363 effects. Pilocarpine is used as a miotic and in the treatment of glaucoma. [NIH] Plantago: Three different species of Plantago or plantain, P. psyllium, P. ovata and P. indica. The seeds swell in water and are used as laxatives. [NIH] Poisoning: A condition or physical state produced by the ingestion, injection or inhalation of, or exposure to a deleterious agent. [NIH] Polytherapy: A therapy which uses more than one drug. [EU] Posterior: Situated in back of, or in the back part of, or affecting the back or dorsal surface of the body. In lower animals, it refers to the caudal end of the body. [EU] Postnatal: Occurring after birth, with reference to the newborn. [EU] Postoperative: Occurring after a surgical operation. [EU] Postural: Pertaining to posture or position. [EU] Potassium: An element that is in the alkali group of metals. It has an atomic symbol K, atomic number 19, and atomic weight 39.10. It is the chief cation in the intracellular fluid of muscle and other cells. Potassium ion is a strong electrolyte and it plays a significant role in the regulation of fluid volume and maintenance of the water-electrolyte balance. [NIH] Predisposition: A latent susceptibility to disease which may be activated under certain conditions, as by stress. [EU] Prednisone: A synthetic anti-inflammatory glucocorticoid derived from cortisone. It is biologically inert and converted to prednisolone in the liver. [NIH] Preeclampsia: A toxaemia of late pregnancy characterized by hypertension, edema, and proteinuria, when convulsions and coma are associated, it is called eclampsia. [EU] Prejudice: A preconceived judgment made without adequate evidence and not easily alterable by presentation of contrary evidence. [NIH] Prenatal: Existing or occurring before birth, with reference to the fetus. [EU] Preoperative: Preceding an operation. [EU] Presynaptic: Situated proximal to a synapse, or occurring before the synapse is crossed. [EU] Prevalence: The total number of cases of a given disease in a specified population at a designated time. It is differentiated from incidence, which refers to the number of new cases in the population at a given time. [NIH] Progesterone: Pregn-4-ene-3,20-dione. The principal progestational hormone of the body, secreted by the corpus luteum, adrenal cortex, and placenta. Its chief function is to prepare the uterus for the reception and development of the fertilized ovum. It acts as an antiovulatory agent when administered on days 5-25 of the menstrual cycle. [NIH] 364 Seizures and Epilepsy Progressive: Advancing; going forward; going from bad to worse; increasing in scope or severity. [EU] Prolactin: Pituitary lactogenic hormone. A polypeptide hormone with a molecular weight of about 23,000. It is essential in the induction of lactation in mammals at parturition and is synergistic with estrogen. The hormone also brings about the release of progesterone from lutein cells, which renders the uterine mucosa suited for the embedding of the ovum should fertilization occur. [NIH] Prophylaxis: The prevention of disease; preventive treatment. [EU] Proteins: Polymers of amino acids linked by peptide bonds. The specific sequence of amino acids determines the shape and function of the protein. [NIH] Psychiatric: Pertaining to or within the purview of psychiatry. [EU] Psychiatry: The medical science that deals with the origin, diagnosis, prevention, and treatment of mental disorders. [NIH] Psychic: Pertaining to the psyche or to the mind; mental. [EU] Psychogenic: Produced or caused by psychic or mental factors rather than organic factors. [EU] Psychomotor: Pertaining to motor effects of cerebral or psychic activity. [EU] Psychopharmacology: The study of the effects of drugs on mental and behavioral activity. [NIH] Psychosomatic: Pertaining to the mind-body relationship; having bodily symptoms of psychic, emotional, or mental origin; called also psychophysiologic. [EU] Psychotropic: Exerting an effect upon the mind; capable of modifying mental activity; usually applied to drugs that effect the mental state. [EU] Puberty: The period during which the secondary sex characteristics begin to develop and the capability of sexual reproduction is attained. [EU] Pulmonary: Pertaining to the lungs. [EU] Radiology: A specialty concerned with the use of x-ray and other forms of radiant energy in the diagnosis and treatment of disease. [NIH] Receptor: 1. A molecular structure within a cell or on the surface characterized by (1) selective binding of a specific substance and (2) a specific physiologic effect that accompanies the binding, e.g., cell-surface receptors for peptide hormones, neurotransmitters, antigens, complement fragments, and immunoglobulins and cytoplasmic receptors for steroid hormones. 2. A sensory nerve terminal that responds to stimuli of various kinds. [EU] Recuperation: The recovery of health and strength. [EU] Glossary 365 Recurrence: The return of a sign, symptom, or disease after a remission. [NIH] Refractory: Not readily yielding to treatment. [EU] Remission: A diminution or abatement of the symptoms of a disease; also the period during which such diminution occurs. [EU] Resection: Excision of a portion or all of an organ or other structure. [EU] Retina: The ten-layered nervous tissue membrane of the eye. It is continuous with the optic nerve and receives images of external objects and transmits visual impulses to the brain. Its outer surface is in contact with the choroid and the inner surface with the vitreous body. The outer-most layer is pigmented, whereas the inner nine layers are transparent. [NIH] Riboflavin: Nutritional factor found in milk, eggs, malted barley, liver, kidney, heart, and leafy vegetables. The richest natural source is yeast. It occurs in the free form only in the retina of the eye, in whey, and in urine; its principal forms in tissues and cells are as FMN and FAD. [NIH] Rickets: A condition caused by deficiency of vitamin D, especially in infancy and childhood, with disturbance of normal ossification. The disease is marked by bending and distortion of the bones under muscular action, by the formation of nodular enlargements on the ends and sides of the bones, by delayed closure of the fontanelles, pain in the muscles, and sweating of the head. Vitamin D and sunlight together with an adequate diet are curative, provided that the parathyroid glands are functioning properly. [EU] Rubella: An acute, usually benign, infectious disease caused by a togavirus and most often affecting children and nonimmune young adults, in which the virus enters the respiratory tract via droplet nuclei and spreads to the lymphatic system. It is characterized by a slight cold, sore throat, and fever, followed by enlargement of the postauricular, suboccipital, and cervical lymph nodes, and the appearances of a fine pink rash that begins on the head and spreads to become generalized. Called also German measles, roetln, röteln, and three-day measles, and rubeola in French and Spanish. [EU] Saline: Salty; of the nature of a salt; containing a salt or salts. [EU] Salivation: 1. The secretion of saliva. 2. Ptyalism (= excessive flow of saliva). [EU] Sarcoidosis: An idiopathic systemic inflammatory granulomatous disorder comprised of epithelioid and multinucleated giant cells with little necrosis. It usually invades the lungs with fibrosis and may also involve lymph nodes, skin, liver, spleen, eyes, phalangeal bones, and parotid glands. [NIH] Schizophrenia: A severe emotional disorder of psychotic depth characteristically marked by a retreat from reality with delusion formation, hallucinations, emotional disharmony, and regressive behavior. [NIH] Sclerosis: A induration, or hardening; especially hardening of a part from 366 Seizures and Epilepsy inflammation and in diseases of the interstitial substance. The term is used chiefly for such a hardening of the nervous system due to hyperplasia of the connective tissue or to designate hardening of the blood vessels. [EU] Secretion: 1. The process of elaborating a specific product as a result of the activity of a gland; this activity may range from separating a specific substance of the blood to the elaboration of a new chemical substance. 2. Any substance produced by secretion. [EU] Sedative: 1. Allaying activity and excitement. 2. An agent that allays excitement. [EU] Seizures: Clinical or subclinical disturbances of cortical function due to a sudden, abnormal, excessive, and disorganized discharge of brain cells. Clinical manifestations include abnormal motor, sensory and psychic phenomena. Recurrent seizures are usually referred to as epilepsy or "seizure disorder." [NIH] Selenium: An element with the atomic symbol Se, atomic number 34, and atomic weight 78.96. It is an essential micronutrient for mammals and other animals but is toxic in large amounts. Selenium protects intracellular structures against oxidative damage. It is an essential component of glutathione peroxidase. [NIH] Serum: 1. The clear portion of any body fluid; the clear fluid moistening serous membranes. 2. Blood serum; the clear liquid that separates from blood on clotting. 3. Immune serum; blood serum from an immunized animal used for passive immunization; an antiserum; antitoxin, or antivenin. [EU] Skull: The skeleton of the head including the bones of the face and the bones enclosing the brain. [NIH] Somatostatin: A polypeptide hormone produced in the hypothalamus, and other tissues and organs. It inhibits the release of human growth hormone, and also modulates important physiological functions of the kidney, pancreas, and gastrointestinal tract. Somatostatin receptors are widely expressed throughout the body. Somatostatin also acts as a neurotransmitter in the central and peripheral nervous systems. [NIH] Spasticity: A state of hypertonicity, or increase over the normal tone of a muscle, with heightened deep tendon reflexes. [EU] Species: A taxonomic category subordinate to a genus (or subgenus) and superior to a subspecies or variety, composed of individuals possessing common characters distinguishing them from other categories of individuals of the same taxonomic level. In taxonomic nomenclature, species are designated by the genus name followed by a Latin or Latinized adjective or noun. [EU] Spectrum: A charted band of wavelengths of electromagnetic vibrations Glossary 367 obtained by refraction and diffraction. By extension, a measurable range of activity, such as the range of bacteria affected by an antibiotic (antibacterial s.) or the complete range of manifestations of a disease. [EU] Sporadic: Neither endemic nor epidemic; occurring occasionally in a random or isolated manner. [EU] Steroid: A group name for lipids that contain a hydrogenated cyclopentanoperhydrophenanthrene ring system. Some of the substances included in this group are progesterone, adrenocortical hormones, the gonadal hormones, cardiac aglycones, bile acids, sterols (such as cholesterol), toad poisons, saponins, and some of the carcinogenic hydrocarbons. [EU] Stomach: An organ of digestion situated in the left upper quadrant of the abdomen between the termination of the esophagus and the beginning of the duodenum. [NIH] Subarachnoid: Situated or occurring between the arachnoid and the pia mater. [EU] Substrate: A substance upon which an enzyme acts. [EU] Superstitions: A belief or practice which lacks adequate basis for proof; an embodiment of fear of the unknown, magic, and ignorance. [NIH] Symptomatic: 1. Pertaining to or of the nature of a symptom. 2. Indicative (of a particular disease or disorder). 3. Exhibiting the symptoms of a particular disease but having a different cause. 4. Directed at the allying of symptoms, as symptomatic treatment. [EU] Syncope: A temporary suspension of consciousness due to generalized cerebral schemia, a faint or swoon. [EU] Systemic: Pertaining to or affecting the body as a whole. [EU] Tacrine: A cholinesterase inhibitor that crosses the blood-brain barrier. Tacrine has been used to counter the effects of muscle relaxants, as a respiratory stimulant, and in the treatment of Alzheimer's disease and other central nervous system disorders. [NIH] Taenia: A genus of large tapeworms. [NIH] Telecommunications: electronic means. [NIH] Transmission of information over distances via Temperament: Predisposition to react to one's environment in a certain way; usually refers to mood changes. [NIH] Testicular: Pertaining to a testis. [EU] Tetanus: A disease caused by tetanospasmin, a powerful protein toxin produced by clostridium tetani. Tetanus usually occurs after an acute injury, such as a puncture wound or laceration. Generalized tetanus, the most common form, is characterized by tetanic muscular contractions and 368 Seizures and Epilepsy hyperreflexia. Localized tetanus presents itself as a mild condition with manifestations restricted to muscles near the wound. It may progress to the generalized form. [NIH] Thermoregulation: Heat regulation. [EU] Thyroxine: An amino acid of the thyroid gland which exerts a stimulating effect on thyroid metabolism. [NIH] Tick Paralysis: Paralysis caused by a neurotropic toxin secreted by the salivary glands of ticks. [NIH] Tomography: The recording of internal body images at a predetermined plane by means of the tomograph; called also body section roentgenography. [EU] Tone: 1. The normal degree of vigour and tension; in muscle, the resistance to passive elongation or stretch; tonus. 2. A particular quality of sound or of voice. 3. To make permanent, or to change, the colour of silver stain by chemical treatment, usually with a heavy metal. [EU] Tonic: 1. Producing and restoring the normal tone. 2. Characterized by continuous tension. 3. A term formerly used for a class of medicinal preparations believed to have the power of restoring normal tone to tissue. [EU] Toxicity: The quality of being poisonous, especially the degree of virulence of a toxic microbe or of a poison. [EU] Toxin: A poison; frequently used to refer specifically to a protein produced by some higher plants, certain animals, and pathogenic bacteria, which is highly toxic for other living organisms. Such substances are differentiated from the simple chemical poisons and the vegetable alkaloids by their high molecular weight and antigenicity. [EU] Toxoids: Preparations of pathogenic organisms or their derivatives made nontoxic and intended for active immunologic prophylaxis. They include deactivated toxins. [NIH] Uricosuric: 1. Pertaining to, characterized by, or promoting uricosuria (= the excretion of uric acid in the urine). 2. An agent that promotes uricosuria. [EU] Urinalysis: Examination of urine by chemical, physical, or microscopic means. Routine urinalysis usually includes performing chemical screening tests, determining specific gravity, observing any unusual color or odor, screening for bacteriuria, and examining the sediment microscopically. [NIH] Valerian: Valeriana officinale, an ancient, sedative herb of the large family Valerianaceae. The roots were formerly used to treat hysterias and other neurotic states and are presently used to treat sleep disorders. [NIH] Vegetative: 1. Concerned with growth and with nutrition. 2. Functioning involuntarily or unconsciously, as the vegetative nervous system. 3. Resting; Glossary 369 denoting the portion of a cell cycle during which the cell is not involved in replication. 4. Of, pertaining to, or characteristic of plants. [EU] Veins: The vessels carrying blood toward the heart. [NIH] Ventral: 1. Pertaining to the belly or to any venter. 2. Denoting a position more toward the belly surface than some other object of reference; same as anterior in human anatomy. [EU] Viral: Pertaining to, caused by, or of the nature of virus. [EU] Withdrawal: 1. A pathological retreat from interpersonal contact and social involvement, as may occur in schizophrenia, depression, or schizoid avoidant and schizotypal personality disorders. 2. (DSM III-R) A substancespecific organic brain syndrome that follows the cessation of use or reduction in intake of a psychoactive substance that had been regularly used to induce a state of intoxication. [EU] General Dictionaries and Glossaries While the above glossary is essentially complete, the dictionaries listed here cover virtually all aspects of medicine, from basic words and phrases to more advanced terms (sorted alphabetically by title; hyperlinks provide rankings, information and reviews at Amazon.com): · Dictionary of Medical Acronymns & Abbreviations by Stanley Jablonski (Editor), Paperback, 4th edition (2001), Lippincott Williams & Wilkins Publishers, ISBN: 1560534605, http://www.amazon.com/exec/obidos/ASIN/1560534605/icongroupinterna · Dictionary of Medical Terms : For the Nonmedical Person (Dictionary of Medical Terms for the Nonmedical Person, Ed 4) by Mikel A. Rothenberg, M.D, et al, Paperback - 544 pages, 4th edition (2000), Barrons Educational Series, ISBN: 0764112015, http://www.amazon.com/exec/obidos/ASIN/0764112015/icongroupinterna · A Dictionary of the History of Medicine by A. Sebastian, CD-Rom edition (2001), CRC Press-Parthenon Publishers, ISBN: 185070368X, http://www.amazon.com/exec/obidos/ASIN/185070368X/icongroupintern a · Dorland’s Illustrated Medical Dictionary (Standard Version) by Dorland, et al, Hardcover - 2088 pages, 29th edition (2000), W B Saunders Co, ISBN: 0721662544, http://www.amazon.com/exec/obidos/ASIN/0721662544/icongroupinterna · Dorland’s Electronic Medical Dictionary by Dorland, et al, Software, 29th Book & CD-Rom edition (2000), Harcourt Health Sciences, ISBN: 370 Seizures and Epilepsy 0721694934, http://www.amazon.com/exec/obidos/ASIN/0721694934/icongroupinterna · Dorland’s Pocket Medical Dictionary (Dorland’s Pocket Medical Dictionary, 26th Ed) Hardcover - 912 pages, 26th edition (2001), W B Saunders Co, ISBN: 0721682812, http://www.amazon.com/exec/obidos/ASIN/0721682812/icongroupinterna /103-4193558-7304618 · Melloni’s Illustrated Medical Dictionary (Melloni’s Illustrated Medical Dictionary, 4th Ed) by Melloni, Hardcover, 4th edition (2001), CRC PressParthenon Publishers, ISBN: 85070094X, http://www.amazon.com/exec/obidos/ASIN/85070094X/icongroupinterna · Stedman’s Electronic Medical Dictionary Version 5.0 (CD-ROM for Windows and Macintosh, Individual) by Stedmans, CD-ROM edition (2000), Lippincott Williams & Wilkins Publishers, ISBN: 0781726328, http://www.amazon.com/exec/obidos/ASIN/0781726328/icongroupinterna · Stedman’s Medical Dictionary by Thomas Lathrop Stedman, Hardcover 2098 pages, 27th edition (2000), Lippincott, Williams & Wilkins, ISBN: 068340007X, http://www.amazon.com/exec/obidos/ASIN/068340007X/icongroupintern a · Tabers Cyclopedic Medical Dictionary (Thumb Index) by Donald Venes (Editor), et al, Hardcover - 2439 pages, 19th edition (2001), F A Davis Co, ISBN: 0803606540, http://www.amazon.com/exec/obidos/ASIN/0803606540/icongroupinterna Index 371 INDEX A Acetylcholine ...........................15, 63, 361 Acidosis ...............................................154 Adenosine....................119, 139, 155, 347 Adolescence ....... 18, 19, 55, 58, 63, 173, 347, 362 Alendronate .........................................152 Algorithms....................................124, 337 Amphetamine ......................................119 Amygdala.............134, 147, 156, 334, 348 Anaesthesia.................152, 158, 348, 357 Anatomical...........................128, 133, 335 Anemia ..................................................24 Anesthesia.............20, 156, 290, 348, 354 Anorexia ......................................158, 355 Antibiotic ........................................65, 367 Antidepressant.............................158, 355 Anxiety.........................185, 253, 336, 358 Aphasia................................116, 189, 192 Apnea ..................................................130 Arrhythmia .................21, 23, 59, 206, 349 Arterial .................................................333 Asphyxia ......................................119, 186 Autoimmunity.......................................120 Autonomic......................58, 121, 201, 347 B Bacteria .................65, 161, 294, 367, 368 Benign ......19, 72, 73, 116, 144, 153, 290, 360, 365 Bilateral................................132, 190, 335 Biochemical .............................23, 91, 146 Blinking ............................................18, 19 Boron ...........................................304, 350 C Camping ................................................70 Cannabinoids.......................................119 Capsules..............................................297 Carbamazepine .............................87, 206 Carbohydrate.................90, 110, 296, 355 Cardiac .....21, 23, 63, 112, 206, 290, 354, 361, 367 Cardiovascular.......................24, 156, 348 Caspases.............................................125 Catheter ...........................................85, 99 Caudal .........................158, 160, 357, 363 Cerebellar ............................................145 Cerebellum ..................................157, 351 Cerebral......14, 15, 61, 64, 104, 173, 176, 201, 212, 329, 331, 332, 333, 356, 364, 367 Cerebrospinal ................................61, 356 Cerebrovascular ........... 14, 111, 227, 361 Cholesterol.................. 112, 294, 296, 367 Cisplatin ...................................... 289, 351 Citrus..................................................... 26 Clonazepam.................................. 25, 206 Cocaine............................... 119, 150, 204 Comorbidity......................................... 176 Conception.............................. 36, 60, 352 Confusion................ 37, 52, 198, 221, 353 Cortex .... 30, 97, 100, 104, 110, 111, 134, 175, 187, 189, 191, 354, 363 Curative............... 121, 160, 304, 361, 365 Cutaneous................................... 221, 358 Cyclic .... 62, 136, 157, 289, 350, 351, 359 D Dehydration........................................... 33 Dendrites............... 62, 128, 157, 353, 360 Dendritic.............................................. 128 Deprivation...................... 15, 35, 130, 332 Diarrhea .............................................. 294 Disorientation ................................ 60, 353 Dizziness............................................... 26 Dorsal.................................. 145, 160, 363 Dyskinesia........................................... 261 Dysphagia ........................................... 116 Dysplasia ........................................ 14, 15 Dystrophy.................................... 226, 233 E Eclampsia ....................... 20, 35, 111, 363 Edema................... 60, 111, 189, 353, 363 Electroacupuncture............................. 262 Electrophysiological .... 125, 128, 138, 332 Electroshock ....................... 158, 261, 355 Encephalitis........... 14, 19, 28, 30, 71, 142 Endogenous........................................ 127 Enzyme ......... 61, 196, 304, 351, 354, 367 Epidemiological................................... 137 Epidural....................................... 192, 332 Estradiol ................................................ 93 Ethosuximide ................................ 25, 206 Exanthema.......................................... 146 Excitation ..... 62, 129, 132, 133, 157, 355, 361 F Fatigue .................................... 26, 59, 349 Febrile ...... 4, 20, 21, 24, 42, 49, 56, 141, 142, 144, 146, 148, 150, 175, 176, 228 Fibrosis ............................... 149, 291, 365 Fluoxetine ........................................... 146 Flurothyl .............................................. 145 372 Seizures and Epilepsy G Ganglia ..........................58, 152, 154, 347 Gastroenteritis .....................................144 Gestation ...............................63, 187, 362 Gestures ................................................42 Glucose ...95, 98, 101, 110, 237, 355, 357 Gluten ....................................................14 Gonadal .................................93, 112, 367 H Hemiplegia.............28, 330, 332, 334, 335 Hemorrhage...................................35, 187 Hemosiderosis.....................................335 Heredity .................................................55 Hormonal .........................15, 62, 137, 359 Hormones .......64, 93, 112, 221, 304, 353, 360, 364, 367 Hydrocephalus.........................14, 29, 335 Hyperbaric ...........................262, 290, 356 Hypnotic.......................................253, 358 I Idiopathic ......12, 121, 122, 135, 150, 151, 291, 365 Immunization .................................64, 366 Indicative .............................123, 161, 367 Induction ................61, 132, 160, 357, 364 Infantile .......4, 19, 20, 28, 102, 143, 145, 153, 206, 334, 335 Inflammation .......19, 64, 71, 86, 156, 158, 350, 355, 366 Infusion ..........................................84, 125 Ingestion ................................63, 297, 363 Insulin ..........................110, 237, 355, 357 Intestinal ..............................290, 294, 358 Intrinsic ........................................125, 189 Intubation.............................................186 Invasive .......104, 187, 190, 332, 333, 337 L Lesion ...28, 158, 187, 188, 190, 206, 330, 334, 358 Libido .....................................................55 Limbic .......126, 127, 134, 140, 149, 156, 174, 188, 348 Lithium .........................................158, 358 Localization....... 120, 136, 148, 159, 190, 192, 193, 328, 332, 358 Lumbar ..................................................86 Lymphoma...................................290, 358 M Magnetoencephalography...................148 Meningitis ..............................62, 150, 359 Menopause......................55, 62, 173, 359 Methylphenidate ..................................143 Mobility ................................................336 Molecular ......64, 124, 126, 160, 161, 224, 230, 232, 289, 350, 364, 368 Monotherapy....................................26, 92 Muscimol....................................... 84, 145 N Nausea............................ 16, 31, 158, 355 Neocortex.................... 188, 189, 190, 193 Neonatal.................. 19, 35, 118, 153, 186 Neoplasms .................................. 334, 360 Neural ............. 30, 55, 138, 177, 295, 338 Neurology...................................... 25, 176 Neurons .... 11, 12, 14, 23, 27, 38, 62, 63, 85, 138, 155, 157, 158, 189, 304, 352, 355, 360, 361 Neuropeptides ............................ 304, 360 Neuropharmacology ................... 124, 338 Neurophysiology ......................... 124, 179 Neuropsychology ................ 176, 195, 360 Neurosciences .................................... 179 Neurosurgery .............................. 173, 176 Neurotransmitter .. 12, 15, 58, 61, 63, 120, 132, 156, 305, 347, 355, 361, 366 Niacin .................................................. 294 Nicotine ................................................. 15 Nimodipine .......................................... 103 O Orbital ................................................. 192 Overdose ............................................ 295 P Pacemaker.............................. 30, 63, 361 Parasitic ................................................ 14 Parietal............................ 19, 63, 190, 361 Paroxysmal ........................... 59, 184, 349 Pentylenetetrazole .............................. 261 Perinatal................................................ 36 Phenobarbital.......... 25, 26, 137, 187, 206 Phenotype................... 133, 138, 159, 362 Phenytoin .......... 25, 26, 35, 137, 142, 206 Physostigmine .................................... 299 Pilocarpine .......................... 145, 146, 154 Poisoning .............. 24, 158, 160, 355, 362 Polytherapy ......................................... 116 Posterior.............. 154, 157, 237, 351, 353 Postnatal ............................................. 129 Postoperative .............. 178, 328, 336, 339 Postural............................................... 175 Potassium ........................................... 296 Predisposition ..................................... 133 Prednisone............................................ 20 Preeclampsia ........................ 60, 103, 353 Prenatal..................................... 24, 34, 35 Preoperative ....... 330, 334, 335, 337, 339 Presynaptic ........................... 62, 129, 361 Prevalence .................. 119, 121, 135, 228 Progesterone …..93, 112, 136, 160, 364, 367 Progressive ...... 13, 19, 61, 122, 128, 133, 137, 176, 290, 329, 332, 353, 356 Prophylaxis ................................. 253, 368 Index 373 Proteins ..13, 94, 125, 138, 220, 294, 296, 352 Psychiatry ..............................64, 176, 364 Psychic ....62, 64, 195, 201, 359, 364, 366 Psychogenic ............21, 59, 263, 331, 349 Psychomotor............18, 59, 110, 349, 350 Psychosomatic ....................................178 Puberty ..............................18, 55, 62, 359 Pulmonary ...........................................135 R Receptor ...60, 63, 95, 119, 125, 129, 132, 140, 144, 352, 362 Recuperation .......................................202 Recurrence ..................128, 153, 206, 227 Refractory ...102, 116, 120, 122, 124, 130, 137, 145, 193 Remission................19, 27, 122, 160, 365 Resection......29, 102, 130, 188, 189, 333, 334, 335, 337, 338 Retina ..............................72, 73, 305, 365 Riboflavin.............................................294 Rickets.................................................154 S Saline.....................................85, 111, 357 Salivation .............................................192 Schizophrenia..................59, 65, 349, 369 Sclerosis ...... 14, 72, 148, 174, 193, 233, 333 Secretion ....159, 161, 195, 238, 361, 362, 365, 366 Sedative.................25, 253, 291, 358, 368 Selenium..............................................296 Serum ......................................34, 64, 366 Skull .......................... 61, 85, 97, 100, 356 Somatostatin ............................... 159, 361 Spasticity............................................. 182 Spectrum............................................... 40 Steroid........................................... 64, 364 Stomach.............. 158, 195, 208, 355, 357 Subarachnoid...................................... 189 Substrate............................................. 194 Superstitions ......................................... 11 Symptomatic ...... 135, 137, 144, 151, 157, 161, 201, 355, 367 Syncope ...................................... 206, 331 Systemic ..................... 289, 291, 348, 365 T Tacrine ................................................ 299 Telecommunications............................. 53 Temperament ..................................... 126 Tetanus ............................... 128, 161, 367 Thermoregulation................................ 294 Thyroxine ............................................ 295 Tomography....... 23, 85, 86, 89, 98, 193, 207, 208, 331, 333 Tone........................ 17, 65, 195, 366, 368 Toxicity.......................... 90, 206, 305, 362 Toxin ........................... 128, 161, 367, 368 U Urinalysis .................................... 112, 368 V Vegetative ........................... 174, 196, 368 Ventral................................................. 145 Viral................................................. 14, 71 W Withdrawal ...................... 35, 93, 137, 153 374 Seizures and Epilepsy