Challenging Migraine
Transcription
Challenging Migraine
January 2013 Issue 17 Challenging Migraine The newsletter from Migraine Action Peripheral Nerve Stimulation Page 6 Clinical Research Trials Page 7 - 10 Common Types of Headache Page 11 www.migraine.org.uk www.migraine.org.uk/youngmigraineurs Migraine Action: your charity caring for you www.migain.org.uk Registered charity number: 207783 Challenging Migraine - The newsletter from Migraine Action PG2 Charity Information & Migraine Clinics Our mission statement is: To relieve the burden of headache by facilitating informed awareness and encouraging research. Migraine Action was founded in 1958 as the British Migraine Association by the late Peter Wilson MBE. Its objectives include: • the provision of understanding, reassurance and information to migraineurs, their families and friends; • raising general awareness of the condition; • the support of specialist migraine clinics; • research and investigation into migraine, its causes, diagnosis, prevention and treatment; • facilitating the exchange of information relating to migraine. President: Mary Ayres Committee: The Committee members are the trustees of the charity. They are responsible for the governance of MA and the management of its affairs. Association Chairman: Adrian Peasgood Trustee Members: Gary George, Jenny Hennah, Heather Lally, Michael Wakefield, Pam Watson. Office Team: Director: Joanna Hamilton-Colclough Marketing and PR Officer: Rachel Markham Membership & Helpline Officer: Fazila Patel Finance & Admin Officer: Stella Powell Please address all correspondence to the office. The views and opinions expressed by contributors are not necessarily those of MA or of the Editor. The right is reserved to edit items submitted. This publication provides information only. Unless otherwise stated, the authors have no medical qualifications whatsoever. Migraine Action and its officers can accept no responsibility for any loss, howsoever caused, to any person acting or refraining from action as a result of any material in the publication or any information given. Medical advice should be obtained on any specific matter. MIGRAINE CLINICS Patients must first obtain a referral letter from their GP before requesting an appointment for many of these clinics or hospitals. LONDON - CHELTENHAM - Cheltenham General Hospital Tel: 08454 222 222 CLACTON ON SEA - Ranworth Surgery (Primary Care Headache Clinic) Tel: 01255 421196 COLCHESTER - West Bergholt Surgery (Primary Care Headache Clinic) Tel: 01255 421196 CORSHAM - Box Surgery Tel: 01225 743 763 COVENTRY - University Hospital of Coventry and Warwickshire Tel: 02476 96 4000 DAGENHAM - Care UK Tel; 0208 596 4400 DERBY - Derby Nuffield Hospital Tel; 01332 254 890 EDINBURGH - Western General Hospital Tel: 0131 537 1000 EXETER - St. Thomas Health Centre Tel: 01392 676 678 GLASGOW Southern General Hospital Tel: 0141 201 1100 Glasgow Homeopathic Hospital Tel: 0141 211 1600 GLOUCESTER - Gloucestershire Royal Hospital Tel: 08454 222 222 GUILDFORD - Merrow Park Surgery (private clinic) Tel: 01483 450 755 HULL - Hull Royal Infirmary Tel: 01482 328541 LEICESTER - General Hospital Tel: 0116 249 0490 LIVERPOOL - The Walton Centre for Neurology and Neurosurgery Tel: 0151 525 3611 MANCHESTER - Greater Manchester Neuroscience Centre, Salford Royal Hospital Tel: 0161 206 4610 MARGATE - The East Kent PCT Headache Service Tel: 01843 209300 MIDDLESBROUGH - James Cook University Hospital Tel: 01642 854108 NEWCASTLE - Royal Victoria Infirmary Tel: 0191 256 3111 NORTHAMPTON - Northampton General Hospital Tel: 01604 545 850 NORWICH - Norfolk and Norwich University Hospital Tel: 01603 286286 OXFORD - John Radcliffe Hospital Tel: 01865 741166 PRESTON - Royal Preston Hospital Tel: 01772 716 565 PLYMOUTH - Derriford Hospital Tel: 0845 155 8155 SHEFFIELD - Park Health Centre Tel: 0114 279 5565 STOKE-ON-TRENT - North Staffordshire Hospital Tel: 01782 715 444 SUNDERLAND - Sunderland Royal Hospital Tel: 0191 565 6256 SURBITON - Surbiton Hospital Tel: 020 8399 711 YORK - York District Hospital Tel: 01904 631 313 Many neurology departments in NHS hospitals see migraine patients. We know that the following hospitals do so: BANBURY - Horton Hospital Tel: 01295 275 500 BASILDON - Basildon University Hospital Tel: 01268 533 911 BIRMINGHAM - The Queen Elizabeth Neurosciences Centre Tel: 0121 414 3943 CAMBRIDGE - Addenbrooke’s Hospital Tel: 01223 245 151 CHESTER - Countess of Chester Hospital Tel: 01244 365 000 COLCHESTER - Colchester General Hospital Tel: 01206 747 474 HALIFAX - Calderdale Royal Hospital Tel: 01422 357 171 LEEDS - St. James’s University Hospital Tel: 0113 243 3144 LONDON - Whipps Cross University Hospital Tel: 020 8539 5522 MANCHESTER - Manchester Royal Infirmary Tel: 0161 276 8671 NEWCASTLE-UPON-TYNE - Royal Victoria Infirmary Tel: 0191 232 6161 NOTTINGHAM - Nottingham University Hospital Tel: 0115 924 9924 ORPINGTON - Princess Royal University Hospital Tel: 01689 863 000 PORTSMOUTH - Queen Alexandra’s Hospital Tel: 023 9228 6000 REDDITCH - Alexandra Hospital Tel: 01527 503 030 ROMFORD - Queen’s Hospital Tel: 01708 435 000 STAFFORD - Stafford & Cannock Chase Hospitals Tel: 01785 230 238 SOUTHAMPTON - Southampton General Hospital Tel: 02380 796793 SURBITON - Surbiton Hospital Tel: 020 8399 7111 SURREY - Frimley Park Hospital Tel: 01276 604 604 SWANSEA - Morriston Hospital Tel: 01792 702222 WAKEFIELD - Pinderfields General Hospital Tel: 0844 811 8110 WORTHING - Worthing Hospital Tel: 01903 205 111 National Migraine Centre (referral not required) Tel: 020 7251 3322 Princess Margaret Migraine Clinic, Charing Cross Hospital Tel: 020 8846 1303 CHILDREN’S CLINICS: The National Hospital of Neurology and Neurosurgery Tel: 0845 155 5000 ESSEX - Goodmayes Hospital Tel: 0208 590 6060 Headache Services, King’s College Hospital Tel: 020 3299 8355 FALKIRK - Falkirk and District Royal Infirmary Tel: 01324 624 000 GLASGOW - Royal Hospital for Sick Children Tel: 0141 201 0000 LIVERPOOL - Alder Hey Children’s Hospital Tel: 0151 228 4811 The Headache Clinic, The Royal London Hospital Tel: 020 7377 7359 ABERDEEN - Aberdeen Royal Infirmary Tel: 0845 456 6000 BATH - Royal United Hospital Tel: 01225 821 907 BATH - Circle Bath Tel: 0808 188 1888 BRIGHTON - Royal Sussex County Hospital Tel: 01273 696955 BIRMINGHAM - Sandwell and West Birmingham Hospital Tel: 0121 5075956 CAMBRIDGE - Chesterton Medical Centre Tel: 01223 726050 CANNOCK - Hednesford Street Surgery Tel: 01543 503 121 CARDIFF - University Hospital of Wales Tel: 029 2074 7747 CHIPPENHAM - Chippenham Community Hospital Tel: 08454 222 222 LONDON City of London Migraine Clinic (a referral is not required at this clinic) Tel: 020 7251 3322 Great Ormond Street Hospital Tel: 020 7405 9200 NOTTINGHAM - Queen’s Medical Centre Tel: 0115 823 0850 PLYMOUTH - Derriford Hospital Tel: 0845 155 8155 STOKE-ON-TRENT - North Staffordshire Hospital Tel: 01782 715 444 STIRLING - Stirling Royal Infirmary Tel: 01786 434 000 YORK - York Hospital Tel: 01904 631 313 Please contact the office for details of clinics offering Botox for the treatment of migraine. Address: 4th Floor, 27 East Street, Leicester, LE1 6NB. Helpline: 0116 275 8317 Fax: 0116 254 2023 Email: info@migraine.org.uk Web: www.migraine.org.uk Children’s web: www.migraine.org.uk/youngmigraineurs Issue 17 - January 2013 www.migraine.org.uk Issue 17 - January 2013 www.migraine.org.uk PG3 From the Director The Financial Future for Migraine Action Here at Migraine Action, I am pleased to report that we move into 2013 with added optimism. We have been overwhelmed by the financial support given to us during a very difficult financial period. The generosity, support and financial kindness received from our membership brought us into 2013 on a financial even keel. We have managed to stabilise our finances and we now have in place a staff structure we believe we can afford on an annual basis as long as our annual income remains at the levels of 2011 and 2012. None of this would have been possible without your individual help and kindness for which I am most thankful. However, I will keep you all informed as this is your charity and we are here to serve you. I want to ensure that the charity continues to thrive in these uncertain times and as such I wanted to share the findings of a report published by the Charities Aid Foundation in autumn 2012. This report tells us that younger generations are failing to give as much to charities as the over 60s, which could lead to a "long-term giving crisis". This reflects the trend in our charitable giving here at Migraine Action. More than half of all donations that now come to Migraine Action come from the over 60s. It would appear from the report that it is the over 60s who are now more than twice as likely to give to charity as the under 30s. The study, conducted by Professor Sarah Smith of the University of Bristol, warns that charities face a "donation deficit" in the years to come if action is not taken to ensure that younger generations match the generosity of those born between 1925 and 1945 and in the post-war baby boom between 1945 and 1966. The research found that the gap between the donations made by the over 60s and under 30s has widened sharply during the past 30 years, raising fears that donations will fall when the older generations start to die and members of Generation X (1965-1981) and Generation Y (1982-1999) reach retirement. In 1980, 29 per cent of the over 60s had given to charity, compared with 23 per cent of those under 30. But 30 years later, 32 per cent of people over 60 said they had given to charities in the past fortnight, compared with only 16 per cent of the under 30s. So how can Migraine Action tackle the potential long-term donation deficit when the majority of our membership is over the age of 55 years? I would welcome any ideas from members, so I can start to put into practice longer term initiatives in this time of greater austerity in our country, to help manage this problem, which according to this report will increase. As you will all know, Migraine Action receives no Government or health funds. We are reliant on the generosity of our members through subscriptions, donations and legacies for our future. We have in our new staff structure allowed for the post of a part-time Income Generation Officer and I am sure, once in post, like me they would wish to hear from you. Of course we continue to seek funds from grant making trusts, however, like all charities we are finding this income stream increasingly competitive to secure. We would love to encourage our younger members to become more involved with the charity at all levels of interaction, from volunteering to establishing local support groups to help support our increasing membership, as well as perhaps joining our Trustees board, or helping to open new commercial avenues. I personally would be very happy if members from all decades felt that they could contribute, not only to support MA financially but also help in our PR, Marketing and Fundraising areas. Please do drop me a line, or call the office if you feel that you would be able to offer any support or even to discuss your views on the enclosed. Joanna Hamilton - Colclough Director Contents Page 3: From the Director Page 7 - 10: Clinical Research Page 4 - 5: Fundraising is Fun Page 11: Types of Headache Page 6: Treatment News Page 12 & 13: Current Research Challenging Migraine - The newsletter from Migraine Action Page 14: Living with Migraine Page 15: MA’s Shop & Services Page 16 : Migraine in the Media PG4 Challenging Migraine - The newsletter from Migraine Action Fundraising is Fun My day out of the office “Originally, I was going to title this article ‘How to Sky dive’, but what was I thinking? I don't really know how to skydive. I decided however to take the plunge on Sunday 2nd September 2012 as having asked our members to raise money for us, I thought I should lead by example! Below is my experience of that day and I hope a light hearted attempt to encourage you to consider possible fundraising opportunities you might like to undertake on behalf of Migraine Action. I had done some things prior to skydiving for charity that some people would consider scary: white water rafting in Val d'Isère in France, a solo parachute jump and a triathlon against the local police force, to name a few. At 6.30am on Sunday 2nd September it felt like a long ride to the skydiving location, especially as I live out in the sticks and the airfield was an hour and a half away. I got there in plenty of time and was the first to arrive. I knew I would not be waiting around all day and most likely would be one of the first to jump. Knowing this made my anxiety go away as I hate crowds and waiting around! I did however feel the first fingers of anxiety creeping their way onto my shoulder when the instructor handed me a contract to sign, which basically says you can't sue the skydiving company if you die (while skydiving). When you arrive and realise how high the sky is (I did wonder why I had never noticed before), you might reconsider but I'm just a big fan of big thrills. After you put on the harness, shake hands with your tandem instructor (if it's your first time, a tandem instructor will be attached to you on the jump), and get on the plane, you're almost there. If you're still not scared, congratulations, you're just about as fearless (and foolish) as me. The instructor I was going to be attached to claimed that skydiving is safer than getting on a bus or in a car: "You should have to sign one of these (the contract that says you can't sue in the event of your death) every time you get in a car”, he told me. Amongst the six pairs (including Joanna, another Migraine Action member) onboard the very little plane I went up in, my instructor and I were the first to jump. I had seen a video of skydiving while waiting for the instructors to walk us out to the plane. I had been thinking about skydiving for about 15 years as I had really enjoyed my previous solo parachute jump. I had also seen many pretty crazy videos of skydiving on TV, on YouTube, and on Google the day before the jump shown to me by my very caring children! I wasn’t scared witless, my heart wasn’t threatening to hammer its way through my muscle, sinew, and skin. I do wonder though if I would've been scared had I not been the first to go out of the plane. Call me naive but I gave it absolutely no thought. All my life my friends and family have told me that I am impulsive! I thought they meant when I go shopping! My tandem instructor decided that it would be fun to try and scare me before the jump. He told me that we were going to jump across the flight path used by East Midlands airport and it was only when I jumped out, that I realised I was looking out for a aircraft!! How silly can one be? As we got to the open door, the wind blasting toward us, my tandem instructor told me to bend my knees, lean back, sit on his lap, and leave everything to him. I leapt out of the plane, with him attached close behind me. If you ask me, skydiving is not about the view, it's about the sensation: the wind howling in your face and ears, the full force of gravity acting on you, being that far up in the sky without being in a flying vehicle, knowing how birds probably feel. It's a freedom that you can only feel a few thousand feet in the air. Somewhere in the back of your mind, you suspect that something could go wrong, and you're right, but you don't care. Now you finally know what R Kelly's talking about in his song "I Believe I Can Fly" (literally). “It was great, absolutely amazing”. I must've said something like that when my tandem instructor yelled in my ear to ask me what I thought about skydiving now that I was actually doing it. I meant every word. Throughout the fall, he navigated our direction with some wing-things attached to our gear. Sometime during the fall, probably near the end, he opened the parachute (I couldn't exactly turn my head back, and my ears were too shot to hear anything less than two millimeters away from them). He told me that upon landing I would have to run with him, going with the momentum. No problem, I thought and I was right - I landed on my feet, dead on! “Stay where you are”, I was told, as he went over to collect the parachute. I saw six others coming in around me and all of us managed not to break any bones! It was only when I had been given permission to go over and meet my family that I realised my head was still spinning! Taking £1500 off my friends and family alongside the £700.00 raised by our member meant it was not a bad day out of the office for Migraine Action!! Now I have to think about what to do for Migraine Awareness Week 2013 - all “sensible” suggestions will be considered! Issue 17 - January 2013 www.migraine.org.uk Issue 17 - January 2013 www.migraine.org.uk PG5 Fundraising Activities Walking, not singing in the rain! Thank you to all those who supported Mary Ayres (MA’s President) and her daughter Catherine who took part in the British 10k London 2012 run on the 8th July 2012, on behalf of Migraine Action, raising over a £1000. They were amongst 25,000 runners who swept through the London route on a grey, wet day, cheered on by the crowds lining the roads and the bridges. Walking at a steady pace Catherine and Mary completed the race in 1hr 59 minutes (just within their time limit of two hours) and there was plenty of rain to keep them cool. Mary came in to the finish a fraction of a second ahead of her daughter, a nice “win” for the more mature competitor. Captain’s Day A big thank you to Alice, one of our young migraineurs, for organising a Captain’s Day at her local golf club with the support of her friends, raising almost £300.00. If you are interested in taking part in a fundraising activity, or event, please contact us for more information on how you can get involved! There are various things you can do that can really help make a difference to the lives of migraineurs and raise awareness of this much misunderstood condition at the same time. Derek Robinson's Migraine Art Concept In the 1970s, the Migraine Art concept was developed by the late Derek Robinson (1928-2001) as the rationale for a number of public competitions in the 1980s which encouraged artists, both amateur and professional, to illustrate the pain, the visual disturbances and the effect migraine had on their lives. According to Derek, Migraine Art denotes the idea that techniques of pictorial representational art may provide an adequate and sometimes the best suited medium to express and communicate those experiences which occur as signs and symptoms of migraine or as reactions of the migraine sufferer to the said manifestations of the disease. If you Google Derek Robinson - Migraine Art, you will see masses of art work, (much of which Migraine Action owns the copyright to) painted by migraineurs. We have recently tried to use some of the artwork from this competition on the front page of ‘Challenging Migraine’. Derek was an important part of British Migraine Association’s progress in raising awareness of the condition through the use of art. We, as an organisation, need to do more at some point to publicise this and would love to be able to host another art competition. However, as always, funds are not always readily available. If any member is interested in sponsoring or starting to plan for such an event please do let us know. MA Lottery The last draw for share scheme period 2 took place on the 17th December 2012 (winning numbers can be found online). 1st prize 2nd prize 3rd prize Congratulations to all our winners so far. If you’ve bought shares July 148 39 69 for 2013 you still have the chance of winning a cash prize. Draws September 180 86 198 for the current period (January - June 2013) will be taking place on 30th January, 27th March and 26th June 2013. The winning share numbers will be posted on the website shortly after the draw and will also be printed in the next newsletter. Along with making first prize winners for this period over £200 richer, so far the MA lottery has raised over £2000 for Migraine Action. These funds are much needed and we would like to thank everyone who has supported us by purchasing shares so far. Don’t miss out on your chance to win! Purchase your shares for the MA lottery 2013 period 1 (January - June 2013) and 2 (July - December 2013) now! Each £10 share gives you entry into the three prize draws to win first, second and third prizes in each draw for that share period. The more people who buy shares the greater the cash prizes that are up for grabs - so join the MA lottery today by calling the office on 0116 275 8317 or by visiting our online shop www.migraine.org.uk/shop. Full details of lottery are available at www.migraine.org.uk/malottery Draw month Winning share numbers period 2 Challenging Migraine - The newsletter from Migraine Action PG6 Challenging Migraine - The newsletter from Migraine Action Treatment News Can magnesium help relieve migraine? Magnesium plays a vital role in the human body as magnesium deficiency can cause a multitude of symptoms including migraine, irritability, anxiety, fatigue, insomnia, poor memory and lack of concentration. Studies have shown that oral magnesium supplementation can be effective as a preventative treatment for migraine. A study by Dr Alexander Mauskop, Director of the New York Headache Centre, found that in a group of 3,000 patients given 200mg of magnesium daily, 80 per cent had a reduction in their migraine symptoms*. Studies indicate that magnesium is deficient in people with migraine and other types of headache, and that treating the deficiency alleviates the headache. The recommended dose varies with the brand of the magnesium, it is suggested 400mg - 600mg daily can be effective in migraine prevention. It is best to start at 400mg daily and work up to find the best tolerated dose. Certain types of magnesium are not well absorbed by the body. If your body isn’t absorbing magnesium well, try and avoid the following types of magnesium: oxide, hydroxide, and chloride. Instead, look for magnesium types that end in “ate”, particularly glycinate, but also gluconate, lactate and orotate. Chelated (firmly attached to an amino acid or compound) versions tend to be the best for migraineurs. Sometimes two or more types of magnesium are combined, such as oxide and citrate. The best thing is to simply talk to your doctor and then try one kind and see how your body handles it. Sea-Band® can help to relieve migraine-related nausea A recent study conducted on the use of Acupressure in controlling migraine-associated nausea that was published in the May 2012 issue of Neurological Sciences showed that continuous stimulation of the acupoint PC6 Neiguan on the inner wrist, as provided by Sea-Band® wristbands, showed significant improvement in migraine-related nausea. Stimulation of the acupoint PC6 Neiguan, is an approach for controlling nausea that has been adopted by traditional Chinese medicine for years, with previous studies having demonstrated the efficacy of Sea-Band and its continual stimulation of the acupressure point PC6 for nausea relief due to motion sickness, postoperative nausea and chemotherapy-induced nausea. This is the first time that research has been published verifying that the pressure applied to the acupoint PC6 with Sea-Band® is effective at relieving nausea during migraine. According to medical journals it is the gentle, continous stimulation of the acupressure points that causes the nervous system to release chemicals that help trigger the body’s natural healing abilities, helping to control nausea. SeaBand® is said to work within five minutes after being applied and can be worn prior to or at the onset of nausea and for as long as needed. You can find out more about Sea-Band® by visiting www.sea-band. com or www.Facebook.com/seaband. *The Magnesium Mineral, Dr Carolyn Dean, Chapter Four, Migraines and Pain. Peripheral Nerve Stimulation benefits chronic migraineurs Peripheral Nerve Stimulation (PNS) of the occipital nerves, also sometimes referred to as Occipital Nerve Stimulation (ONS) is a potentially promising therapy for chronic migraine patients. The first large-scale study of PNS of the occipital nerves in patients suffering from chronic migraine was recently conducted. Results published online by Cephalalgia showed a significant reduction in pain, headache days and migraine-related disability for those who received PNS. PNS involves the delivery of mild electrical pulses to the occipital nerves that are located just beneath the skin at the back of the head. A small electrical lead or leads are placed under the skin and connected to a neurostimulator, which produces pulses of stimulation. In this randomised, controlled study, participants were implanted with the St. Jude Medical Genesis™ neurostimulator and randomly assigned to an active or control group for 12 weeks. The active group received stimulation immediately upon implantation, while patients in the control group did not receive stimulation until after the first 12 weeks. Patients in the active group were more likely than control patients to experience 30 per cent or greater pain reduction, which is considered clinically meaningful. More recently, St. Jude Medical Inc. (a global medical device company) who make the implant device, have received regulatory approval for their Eon range of rechargeable implantable pulse generators for the management of severe chronic refractory migraine. This approval supplements an earlier approval for their Genesis non-rechargeable pulse generator. The Eon family of pulse generators are currently available within NHS hospitals that offer or are going to start to offer this treatment option, a list of these are below: • NHNN, London – Dr Manjit Matharu & Mr Laurence Watkins • Charing Cross, London – Dr Mark Weatherall & Mr Dipankar Nandi • Kings College, London – Dr Andrew Dowson, Dr Sam Chong & Mr Keyoumars Ashkan • Oxford John Radcliffe – Dr Paul Davies & Mr Alex Green • Norfolk & Norwich – Dr Paul Worth & Dr Mike Sidery (pain specialist) • Frenchay, Bristol – Mr Nik Patel • Royal Preston, Preston – Mr Nick Park • St. James’, Leeds – Dr Fayyaz Ahmed & Dr Barani (pain specialist) Availability of PNS under the NHS is still limited and the treatment itself is quite expensive. As a result you may need to try and persuade your local PCT to release funding for the procedure. The first step to take in accessing this treatment is to see your GP or specialist regarding its suitability for you. Issue 17 - January 2013 www.migraine.org.uk Clinical Research....helping to improve the health of future generations The information in this supplement has been provided by Clinical Research Phases of Clinical Trials Getting Involved www.migraine.org.uk www.migraine.org.uk/youngmigraineurs Clinical Research Clinical studies shouldn’t be a scary concept - direct involvement with medical research is a rewarding experience and your contribution could support others immensely and help shape the future of medicine and improve the health of future generations. The words ‘clinical research’ are commonplace in glossy adverts. Claims to reduce our wrinkles, turn back the years or make us look instantly younger are often taken as fact. We take comfort from the fact that beauty brands have put considerable time and effort into ensuring the products we choose for our beauty routine have been adequately tried and tested. However, when it comes to medicines, many of us have a negative perception or are simply complacent about clinical research or clinical trials. Do we give much consideration as to how a simple aspirin tablet has been made available to us? The history of clinical research Clinical research is far from a new concept, with the first recorded clinical trial being documented in the Old Testament. Between 605 and 562 BC, King Nebuchadnezzar II is reported to have ordered his followers to eat a strict diet of meat and wine. Four children then convinced Nebuchadnezzar to allow them to exchange this meal for a diet of pulses and water. After only 10 days, those who switched to pulses and water appeared more resplendent and well nourished than those who stuck to meat and wine. Physician James Lind was the first pioneer of clinical trials, as he was the first to introduce control groups into his experiments. He carried out trials while at sea, on board the ship Salisbury in 1747. Seamen with scurvy were given the same general diet, but this was supplemented with either cider, elixir vitriol (sulphuric acid), vinegar, seawater, nutmeg and, most importantly, oranges and lemons. In just six days, patients who ate oranges and lemons were fit for duty and thus it was concluded that scurvy could be prevented by citrus fruits as opposed to other supplements. It was not until 50 years later that the Navy made lemon juice a compulsory part of the seafarer’s diet, and this was soon replaced by lime juice because it was cheaper. This is why British sailors, and later the British in general, were referred to as ‘limeys’ by the Americans. Clinical research today While clinical studies have advanced since the times of Nebuchadnezzar and James Lind, their importance and the vital role they play in the future of medicine is no less significant. So why, despite their heritage, are clinical trials not high up on the agenda of most modern people? Is it because science is a dark and daunting place, or is it because such opportunities are rarely offered to us? Why do we hardly ever consider the role we could play in improving the health of generations to come? Essentially, clinical trials enable the development of all medical treatments for everyday ailments through to life-threatening conditions. Far from being a scary concept, clinical trials operate in a highly regulated industry. Prior to any clinical trial being undertaken, approval must be sought from the appropriate regulatory authorities and ethical committees. In the UK, this is the Medicines and Healthcare products Regulatory Agency (MHRA) and the Research Ethics Committee (REC). It’s after the relevant scientific, regulatory and ethical bodies have approved the protocol that clinical studies in the human population can go ahead. Different Phases of Clinical Trials Clinical trials are conducted in a series of steps, called phases, and each phase is designed to answer a separate research question. The different phases are as follows: Phase of clinical trials Description Phase I Phase I has the objective of ensuring the treatment is safe. The treatment is tested in small doses on a small pool of people, usually healthy volunteers, to check for any side effects. Phase II Phase II assesses the treatment in a larger number of people. This group of people has the condition for which the treatment is designed. The purpose of Phase II is to ensure that the treatment is safe, and that it is effective. Phase III Phase III involves many more patients, typically several thousands. Treatments only move on to Phase III once the objectives of Phase I and II have been achieved. During Phase III studies, the treatment under investigation is compared to a treatment currently in use or a placebo. The study participants will be unaware which treatment they are taking. These three stages of testing can take between ten and twelve years. Only at this point will the treatment be considered for licensing by the relevant authority. Phase IV Following licensing, some treatments undergo Phase IV testing. This phase is designed to find out more about the long-term risks, benefits and use of the product in different populations. Which sort of people choose to take part in such research? condition and wish to contribute to further research into its treatment and cure. Others may be related to or know someone in such a situation. Others may be driven purely by altruism and a commitment to extending human knowledge. How to get involved The first thing to say is that there are lots of them! Around 35,000 individuals approached Synexus, the world's largest multinational company dedicated to the successful recruitment and running of clinical studies, to express an interest last year alone. Some may have an existing medical Synexus has extensive experience in late stage (phases II and IV) clinical studies, having been involved in clinical research for over 20 years. Each year, thousands of patients take part in clinical studies at Synexus’ Dedicated Research Centres across the world, seven of which are in the UK. There are many studies running throughout the year that may be of interest including potential treatments for: • Migraine • Osteoporosis • Diabetes • High cholesterol • Prevention of heart disease and stroke • Insomnia • Bladder and bowel conditions (IBS and OAB) • Vaccine studies (shingles and flu) • Quitting smoking • Asthma • Alzheimer’s Not all studies are paid, but some do reimburse the patients for their time and all reimburse patients for out of pocket travelling expenses. Participating in a Synexus clinical study means patients receive increased medical attention and may benefit from medications that aren’t yet available to other sufferers of their condition, while making a positive contribution to the health of future generations. What to Expect...... Everyone who contacts Synexus and expresses an interest in a study is screened by phone to ensure the study is right for them. That is followed by a complimentary health check at a local Synexus centre, which also allows for face-to-face discussions with a nurse as well as a tour of the facilities. Would-be participants are then given time to discuss the matter with friends and their GP. A further, thorough health check is then carried out by a Synexus doctor before any study takes place. There is no obligation for people to participate in the study and they remain free to withdraw at any time. If they do decide to take part in a study, their GP will be kept fully informed of their involvement. What People Say...... “I would have no hesitation in taking part in a study with Synexus in the future. The staff are excellent and there is absolutely nothing to be afraid of. You get a thorough health examination from head to toe so, even if you don’t get accepted to take part in the study, you have peace of mind about your health”. Patricia McNeilage, Dunbartonshire “My experience has been positive from start to finish – everyone at Synexus was fantastic and I was really looked after at all times. I feel proud that I have helped make a contribution to medical research and wouldn’t hesitate to take part in a clinical study with Synexus again if there was one suitable for me“. Ann Haigh, Staffordshire For More Information...... Scotland Venture Building No 1 Kelvin Campus West of Scotland Science Park Maryhill Road Glasgow G20 0SP 0141 945 6850 Lancashire 24 Eaton Park Matrix Park Buckshaw Village Chorley PR7 1NY 01772 819600 Merseyside Burlington House Crosby Waterloo L22 0LG 0151 920 1555 Cardiff 1-2 Purbeck House Lambourne Crescent Cardiff Business Park Llanishen Cardiff CF14 5GJ 0292 076 4455 Manchester 1st Floor, Wiliams House Manchester Science Park Lloyd Street North Manchester M15 6SX 0161 608 7790 Midlands Birmingham Research Park Vincent Drive Edgbaston Birmingham B15 2SQ 0121 414 0303 Thames Valley Wellington House Worton Drive Worton Grange Reading RG2 0TG 0118 987 4088 To find out more about the studies that Synexus is currently running at its Dedicated Research Centres across the UK please call 0800 027 8383 and quote reference number 11033. Issue 17 - January 2013 www.migraine.org.uk PG11 Common Types of Headaches and How to Treat Them There are many different types of headaches, some more painful than others. Below is a list of common headache types and how to treat them: DOUBLE-SIDED HEAD SQUEEZER - Daily pain on both sides of the head, which feels as if it is being squeezed. Possible cause: Often termed “medication overuse headache” / “rebound headache” this type of headache can be caused due to overusing medication or abruptly withdrawing from them. Taking painkillers like paracetamol and aspirin more than two to three times a week or triptans for more than ten days a month can put you at risk of developing a daily headache. Treatment: Your doctor may prescribe preventative medication, such as anti-depressants or anti-epilepsy drugs to help you ease off the medication and raise your pain threshold. TOP OF THE SKULL HEAD SQUEEZER - Pain accompanied by sensations that the head is pushed from the top or sides. Possible cause: Stress or tension headaches can be triggered by poor posture or teeth grinding. Treatment: You can try wearing a mouth guard at night, getting some fresh air, taking painkillers or trying things that help you to relax like yoga, a hot bath or having a relaxing massage. HEAD EXPLODER - A dull throbbing pain in the front of your head, feeling of pressure, watery red eyes and fever. Possible cause: Can be caused by blocked or inflamed sinuses behind the eyes, nose and cheeks. Sinuses can swell up as a result of infection, particularly during a cold as the inflamed passages block the drainage of mucus. Treatment: Sinus headaches tend to subside within a few days. However, you can take over-the-counter medicine, such as ibuprofen or paracetamol to help reduce the inflammation. If symptoms continue beyond 10 to 14 days go and see your GP as you may need antibiotics. LIGHT-HEADED HEADACHE - Pain and light-headedness sometimes accompanied by nausea and nervousness. Possible cause: Often felt by people who drink lots of coffee or soft drinks as they may suffer from caffeine withdrawal headaches when they cut back. Treatment: Have no more than 300mg of caffeine each day - equivalent to three mugs of instant coffee or four cups of tea. Typical cola drinks contain less than 50mg of caffeine per can. HEADACHE BEHIND EYES - A constant dull ache behind the eye sockets. Possible cause: Strain on the eyes can trigger asthenopia headaches, which can be debilitating. It’s important to get an early diagnosis because it can sometimes be caused by more serious conditions, such as glaucoma or cancer. One of the main causes of eye strain is not wearing the correct glasses or any glasses at all when you need them and spending a lot of time looking at computer screens. Treatment: If you need to work looking at a screen, make sure you take short breaks every 20 minutes to allow the Challenging Migraine - The newsletter from Migraine Action muscles in your eyes to relax. CRIPPLING HEADACHE - Severe pain accompanied by sensitivity to light. Possible cause: Migraines can be triggered by factors including diet, changes in temperature and even artificial lighting. Intense pain is thought to stem from the trigeminal nerve, lasting for hours and even days if left untreated. Treatment: Triptans, such as Imigran, can help if taken at the onset of symptoms. If you’re getting weekly migraines and medication isn’t working, doctors can prescribe preventative medication, such as amitriptyline. BENDING DOWN HEADACHE - Pain on bending down or moving head side to side. Possible cause: Not drinking enough can lead to dehydration. Experts believe dehydration may cause blood vessels to narrow, reducing the brain’s supply of blood and oxygen. Treatment: Make sure you drink at least six to eight glasses of fluid a day, don’t wait until you feel thirsty. MONTHLY HEADACHE - Pain that strikes once a month. Possible cause: Women often experience headaches during and around the time of their period when levels of oestrogen are very low. Treatment: Over the counter pain relief may be effective. If these don’t work triptans can be prescribed by your GP. Frovatriptan has been recommended as the preferred therapy for menstrual migraine as it tends to stay in the body for longer (up to 26 hours). If treating each attack does not work your GP can prescribe medication to take around the time of your period, such as oestrogen supplements or non steroidal anti-inflammatory drugs (NSAIDS). ALARM CLOCK HEADACHES - Excruciating pain that is centred around one eye which can spread to the temples and cheeks. Lasts from 30 minutes to four hours and can occur one to eight times a day. Possible cause: Cluster headaches, also known as suicide headaches or alarm clock headaches tend to come in clusters over a month or so, and strike at the same time each day. One eye may go red and water and the lid may droop, possibly due to disruptions in the trigeminal nerve, the main nerve in the face. Treatment: Medication, such as sumatriptan injectable can help shrink the blood vessels. If an attack comes on without a warning people can take the steroid prednisolone every day for a week, which also helps narrow the vessels. PERFUME HEADACHE - Throbbing headache after using or smelling perfume / strong scents on someone else. Possible cause: Materials found in fragrances can affect blood circulation in the brain, triggering pain. Chemicals in perfumes and fragrances that can cause problems are benzyl alcohol and anisyl alcohol. Sometimes natural ingredients, such as clove or cinnamon oil, can also cause headaches. Treatment: It is best to use fragrance-free beauty products and try and stay away from strong smells. Challenging Migraine - The newsletter from Migraine Action PG12 Current Research Spring TMS Total Migraine System New research into The Spring TMS (Transcranial Magnetic Stimulation) Total Migraine System was presented at the European Headache and Migraine Trust International Congress in London in September 2012. Some doctors believe that this type of neurostimulation treatment which, involves magnetic pulses being delivered to the back of the head, may present the future of migraine management, particularly for those for whom traditional medications are not well tolerated. The device has been undergoing trials for the past several years. Initially it was thought that the pulse might interrupt the aura phase and prevent the development of headache and associated symptoms, but more recently reports have suggested that the device may also offer pain relief for up to 48 hours with no noticeable side effects. Latest study data suggests that 73% of migraineurs who were given the device at clinics in London, Hull, Bath, Exeter, Liverpool and Aberdeen, reported a reduction or alleviation of pain. Migraine symptoms improved or did not develop in 63% of patients and the number of headache days experienced declined for 53% of patients. The device - developed by American medical technology company eNeura Therapeutics is likely to be more suited to home use as it is quite bulky and not easily transportable, and this may prove an issue for potential users, especially those with infrequent attacks. Another issue for potential users is the cost; whilst those in the research trials have used the device on a complementary basis, going forward it is likely to have a considerable (approximately £120 per month) fee. Dr Andrew Dowson, Chairman of Migraine Action's Medical Advisory Board, comments: "Although the device is showing promising results and may offer a new and non-invasive treatment option in the future, I would like to see a larger clinical trial undertaken to more fully assess which particular group of the migraine population will benefit most and whether the benefit derived justifies any associated cost, in comparison to other management options available". Currently a pilot program of the device is underway in England with the device only being available through a select number of headache clinics on prescription (please contact us for the list of participating clinics). Those wishing to try the Spring TMS System should discuss it with their Headache Specialist. If you have already tried the system and would like to give feedback to other members we would love to hear from you; please email info@migraine.org.uk. with your comments. NICE Guidelines on painkillers New guidelines on painkillers were issued by The National Institute for Health and Clinical Excellence (NICE) on 19th September 2012, suggesting that people who regularly take medicines, such as aspirin, paracetamol and triptans, could be causing themselves more pain than relief. The new guidance advises GPs and other healthcare professionals to consider the possibility of "medication overuse" in patients who have been taking medicines for up to half of the days in a month, over three months. It urges GPs to consider whether the painkillers could be causing their patients' headaches and to be mindful of the fact that different headaches require different treatments. Dr Gillian Leng, Deputy Chief Executive of NICE says: "Although headache is the most common neurological problem seen by GPs and neurologists, many people are not receiving correct or timely diagnoses. The key features of medication overuse and the symptoms that distinguish the types of primary headache can be overlooked and concerns from patients about possible underlying causes can lead to unnecessary hospital investigations. These can mean people experience delays in receiving adequate pain relief from what can be an extremely disabling condition. Our guideline outlines the assessments and treatments that people should expect to receive for primary headaches and medication overuse. We hope that this will help GPs and other healthcare professionals to correctly diagnose the type of headache disorder and better recognise patients whose headaches could be caused by their overreliance on medications". Black mamba venom - a migraine cure? A team of French scientists have found that black mamba venom (one of nature’s most deadly toxins) to be a highly effective painkiller that does not cause the troublesome side effects of opiates. The journal Nature recently published research outlining how proteins in the venom called mambalgins tested as effectively as morphine in lab mice. “Mambalgins - are not toxic in mice but show a potent analgesic effect upon central and peripheral injection that can be as strong as morphine”, the report states. Black mamba venom isn’t the only toxin that’s being developed for managing pain. Toxins from snakes, spiders, and even scorpions are being evaluated as potential cure alls for our aches and pains. For example, companies like Johnson & Johnson and Australia’s University of Queensland are partnering on a drug that uses peptides found in spider venom to treat chronic pain and Israeli researchers are evaluating scorpions as a potential source for non opiate painkillers. It will be interesting to see how this develops. Issue 17 - January 2013 www.migraine.org.uk Issue 17 - January 2013 www.migraine.org.uk PG13 Current Research Acupuncture more effective than topiramate? The Consumer Justice Foundation recently published the results of a study conducted in Taiwan by Dr Hen-Hong Chang, of Chang Gung Memorial Hospital entitled, “Acupuncture Versus Topiramate in Chronic Migraine Prophylaxis: A Randomized Clinical Trial”. As part of the study people who suffered from regular migraine headaches were split into two groups: one group used topiramate to treat their migraine headaches and the other group was administered regular acupuncture treatments of 30 minutes each at twice per week over 12 weeks. The study concluded that the patients who were given acupuncture treatments saw a greater decrease in the number of migraine headaches suffered. Antidepressants, sleeping pills and anxiety drugs may increase driving risk According to a recent study published in the British Journal of Clinical Pharmacology, drugs prescribed to treat anxiety, depression and insomnia may increase patients' risk of being involved in motor vehicle accidents as psychotropic drugs, such as diazepam are said to affect the way the brain functions and can impair a driver's ability to control their vehicle. The researchers have suggested that doctors should consider advising patients not to drive while taking these drugs. Lead researcher, Hui-Ju Tsai, from National Health Research Institutes in Zhunan, Taiwan states, "Our findings underscore that people taking these psychotropic drugs should pay increased attention to their driving performance in order to prevent motor vehicle accidents. Doctors and pharmacists should choose safer treatments, provide their patients with accurate information and consider advising them not to drive while taking certain psychotropic medications". The research provides more evidence on the link between dose and driving performance, showing that higher doses are associated with a higher risk of an accident. "Our data demonstrated significant dose effects for antidepressants, benzodiazepine and Z-drugs (used to treat insomnia)," said Tsai. "This suggests that taking a higher dosage poses a greater danger to those intending to drive". The authors recommend that patients do not stop taking their medication, but if concerned should consult their doctor. Painful migraines do not affect how well you learn and remember According to a new study published online by the British Medical Journal, migraines may be painful but don't hurt your brain. Researchers found that women who suffered from severe headaches were no more likely to have trouble learning or remembering things than those unaffected by the condition. Now according to the research from Brigham and Women’s Hospital in Boston, migraines are not associated with cognitive decline. Cognitive decline is when the brain doesn't work as well as it used to. For instance, someone may have memory problems, or have trouble learning a new skill or with using language. Some decline is a normal part of ageing, however, when it is rapid and affects every day life it is classed as dementia. Lead researcher Pamela Rist comments: “Previous studies on migraines and cognitive decline were small and unable to identify a link between the two. Our study was large enough to draw the conclusion that migraines, while painful, are not strongly linked to cognitive decline. Compared with women with no history of migraine, those who experienced migraine with or without aura did not have significantly different rates of cognitive decline. This is an important finding for both physicians and patients. Patients with migraine and their treating doctors should be reassured that migraine may not have long term consequences on cognitive function”. Migraine in children may affect school performance Children with migraine are more likely to have below average school performance than kids who do not have headaches, according to new research published in Neurology. The study of 5,671 Brazilian children aged 5 to 12 found that those with migraine were 30% more likely to have below average school performance than those with no headaches. The link between migraine and poor performance in school was even stronger for children with migraines that were more severe, lasted longer, or for children with chronic migraine, as well as for those who also had emotional or behavioural problems. According to the study author Marcelo E. Bigal, MD, PhD, of Merck & Co "With approximately one-fourth of schoolage children having headaches with migraine features, this is a serious problem, especially for those with frequent, severe attacks that do not subside quickly. Parents and teachers need to take these headaches seriously and make sure children get appropriate medical attention and treatment". Challenging Migraine - The newsletter from Migraine Action PG14 Challenging Migraine - The newsletter from Migraine Action Living with Migraine One of our young migraineurs Millie shares her migraine story: “I started getting migraines when I was 11. We didn't know what it was at first and I got quite scared. I went to the doctors after having two attacks and told them what happened. The doctor diagnosed me with severe migraine and put me on pizotifen. This medication didn't work for me and I got referred to the hospital. I had just started secondary school and I found this really scary as I was only 11 and had been told that I had to see someone at the hospital regularly, I didn’t know what to think. The doctor confirmed that it was migraine and nothing else. He put me on a different medication called propranolol. I was taking this drug three times a day, this meant I had to take it at school and I didn't know what my friends would think about it. I had nothing to worry about, they all understood that if I didn't take the medication I would be ill. I only told my really close friends what it was really like to live with migraine. It was hard for me to get people to understand, as people think that I'm being dramatic and it's only a headache and that I should get over it. When I got the attack I had to take a nasal spray. I really didn't like doing this as it made me feel sick and I could feel the liquid running down my throat. To this day I can't look at the packet because it makes me heave. I went back to the hospital as the medication was making my blood pressure really low and I got dizzy spells all the time. The doctor took me off the medication and put me on another one to see if this would work. He also took me off the nasal spray and put me on an injection, for when I had the attack. I didn't like taking the injection but I got on with it, and people at school thought that it was quite impressive that I had the guts to inject myself. When I got into my second year at secondary school my migraines started to really get me down. I was getting really anxious about getting a migraine, that I stopped going to places on my own in case I got an attack, as I didn't want to be on my own. My year head at school suggested that I saw one of the youth workers at school; this helped me so much as I realised that I can’t keep thinking about ‘what if’ moments. Whilst I was seeing my youth worker my doctor suggested that it might be a good idea if I came off medication altogether. I didn't want to, but I talked to my youth worker about it and had a go. Unfortunately, my migraines didn’t disappear, instead they came back with a vengeance. I had to persuade my doctor to put me back on propanalol because that's what I felt happy on and safe. The doctor didn't want me to take propanalol as it made my blood pressure too low but being on a lower dose worked for me. With propanalol I had my life back. I'm 14 now and I am like any other teenage girl. I still have the constant fear of getting a migraine which I try and push to the back of my mind and concentrate on more important stuff like the latest fashion and the hottest new boy band. I love my life now. I'm still on propranolol and not getting the dizzy spells as often as I was. When I get a attack I have been prescribed the injection which I'm too scared to take, so I just put up with the migraine for a day or two and get on with it. The only down side to all this is, that I have to have lots of time off school and sometimes I get a bit behind but that's nothing to worry about, I'll soon catch up. Me and my friends have a little joke now to see if I can make a full week at school, with hospital appointments, orthodontic appointments etc. One time I got sent for an MRI scan to double check that I did only have migraines and that there wasn’t an underlying problem, the doctors couldn’t believe how chilled out I was about it. Luckily the results came back all fine. Something else that the doctor mentioned was I have patches on my skin that are darker then the rest of my skin. I've always thought that they were birthmarks but they can be linked with migraines so that's something that I'll be looking into because there’s always something new to discover”. Has anyone else experienced this? If so, we would love to hear from you. Rathke Cleft Cyst A member called the office to tell us that he is not a migraineur after all. After 15 years they have finally found he has a Rathke Cleft Cyst on his pituitary gland which they believe has caused all his neurological systems. He has had numerous scans and treatments for many years but the health professionals just kept missing it. He has been treated all these years for epilepsy, migraine etc. and taking all sorts of medication that he did not need. Feedback from member Nicola comments: “I just wanted to say a big thank you for your support yesterday on the helpline. I cannot believe this charity exists and I had never heard of it. Rebecca (Specialist Headache Nurse) gave me a call back and she was absolutely lovely. She was so kind and full of incredible knowledge. She has given me the confidence to ‘give it a go’ in terms of trying preventative treatments. She has also advised me on different triptans to try as I had previously ruled them out after a nasty experience with Imigran. Best £10 I have spent in a long time! I went to bed last night full of hope that I can begin to tackle my migraines again - obviously I am not under any illusion that things will disappear completely as they are so connected to my cycle just now, however if I can get them back under control again I might have my life back. Your information leaflets are fabulous too - packed full of useful information”. Issue 17 - January 2013 www.migraine.org.uk Issue 17 - January 2013 www.migraine.org.uk PG15 MA Shop Treat yourself or someone you know with great products from MA’s shop. Profits from all products help MA to Item continue its work. 1. Fleximan clock We have various products available to purchase, ranging from bags, to USB desk fans and pens. To place your order 2. Blue ballpen please complete and return the form opposite to Migraine 3. Flexible USB cooling Action, 27 East Street, Leicester, LE1 6NB, or visit our fan website at www.migraine.org.uk/shop to order online. 4. Scarves 1. 2. 4. 3. 5. Price £3.99 £0.99 £3.50 £2.99 5. Cotton shopper Postage and packaging (P&P) 1 - 3 items: £1.50 4 or more: £2.50 No of Items £2.99 Total goods £ P&P £ Donation £ Total £ I enclose a cheque for £........ payable to Migraine Action. Name: ............................................................................. Address: ......................................................................... Email: ............................................................................. Tel no: ............................................................................ Things you can do to help make a difference: • Recycle your empty inkjet cartridges and old mobile phones with Each One Counts. Visit our partner site by clicking the link www.eachonecounts.co.uk/migraineaction. • Do you own a banger that’s merely gathering dust in the garage? Recycle your scrap car and raise money for Migraine Action. To arrange collection of a car, visit www.giveacar.co.uk or call 020 0011 1664, and remember to quote Migraine Action as your preferred charity. • Donate any unwanted gold, silver, costume jewellery and watches, including any broken items. Please visit www.jewelleryrecycling.org for more information. • Use Everyclick.com as your home page - we receive a donation from them each time our supporters use their facilities to search the internet. • Do you like shopping? Sign up to shop online at www.giveasyoulive.com/migraine-action - various retailers will donate money to Migraine Action with every purchase you make at no extra cost to you. Update on availability of Feverfew As mentioned in the September 2012 issue of ‘Challenging Migraine’, since April 2011 all herbal products must have a licence called a Traditional Herbal Registration (THR) and only products with this licence can now be marketed in the UK. In regards to feverfew there are currently only two licensed feverfew products; Migraherb and Diamigraine/Diafeverfew (they have different THR numbers) that are available. What may be confusing is that companies are selling the same product (with the same THR number) but under different brand names. For example Higher Nature (www.highernature. co.uk) sells Migraherb. This is also sold by Healthspan and Boots – it’s the same product but sold under their own brands names. When buying herbal products look out for the THR number on the packet; if they have a THR number they are safe to use. Migraine Pen Pals We have a member who is looking for a pen pal. The member is extremely light sensitive and has particular problems with low energy light bulbs. She is not able to watch TV or spend time on a computer as this triggers her migraine. She would love to hear from anyone who has similar experiences. Code: PENPAL009. Other penpals can be found on our website or by contacting us. Writing to a pen pal can be a great way to share experiences and to beat the sense of isolation that can accompany migraine. lf you would like to communicate with a Migraine Action pen pal, please send us an email or a letter with a short biography about yourself with your contact details and Migraine Action membership number. If you could also write a brief letter or email directly to the pen pal you would like to correspond with (stating their pen pal code) and send it to us. We will then forward this onto them and the relevant pen pal will contact you directly if they wish. If you are communicating by post please also enclose a blank stamped envelope with the pen pal code written on the back of the envelope. All items then need to go into a separate envelope and sent to: Migraine Action, 4th Floor, 27 East Street, Leicester. LE1 6NB. Email requests need to be sent to info@migraine.org.uk. Challenging Migraine - The newsletter from Migraine Action PG16 Challenging Migraine - The newsletter from Migraine Action Migraine in the Media Coverage of migraine in the media over recent weeks includes: On 5th September 2012 Joanna Hamilton-Colclough, Director of MA, talked about migraine and Botox with Fayyaz Ahmed (neurologist at Hull Royal Infirmary) on BBC Look North. Also in September Joanna Hamilton-Colclough talked about migraine on Marlow FM and Radio Chester. In September migraine and painkillers was mentioned in - The Times, The Scotsman, Western Mail, The Independent, Metro (London), The Daily Telegraph, The Sun, The Guardian and Daily Express. In November 2012 Pick Me Up magazine featured our media volunteer Elaine Ransome, talking about how Botox has helped reduce the frequency of her migraines. Update on Ban of Incandescent Light Bulbs At the moment some incandescent light bulbs are still available but they are not meant to be sold to the public. Fireglow and other coloured incandescent lamps are specifically exempted from the ban; however, mainstream manufacturers are no longer supplying them. Golf ball and candle bulbs of 25W and 40W are now banned. However, it may be possible to still get 15W and 20W. The Spectrum Alliance met with Lord Taylor of Holbeach, former Environment Minister, on 21st August 2012. The UK says it will not ask for an exemption to allow people to obtain incandescent light bulbs in the review in 2014. They did so last time when the regulations were being negotiated and received no support from other countries. Recently MA and Spectrum have spoken to Struan Stevenson, a Scottish MEP who is helping to stop the total ban on incandescent bulbs in Europe. He is organising a meeting with us and the EU Health Minister/EU Environment Minister to discuss our request for a derogation (this seems to be the proper word rather than an exemption) soon - we will keep you informed of the progress. How you can help this ongoing battle? • Write to your MPs advising that you give your backing to Sheila Gilmore MP’s support for the Spectrum Alliance campaign in Westminster. • Write to your MEPs asking them to write to the Commission asking for an exemption from the ban for light sensitive people and raise the matter in the European Parliament. • Write to Commissioner Gunther Oettinger, EU Commissioner for the Environment, asking for an exemption to the ban for light sensitive people when the ban is reviewed in 2014. His address is as follows: Commissioner Gunther Oettinger, European Commission, B-1049, Brussels, Belgium. In 2016 the EU will look at the regulation again and may also ban energy-saving halogen incandescents. (These use 30% less energy than ordinary incandescent bulbs.) These bulbs are still a problem for people who have light sensitive Lupus and some others. Courses on Headache Disorders at the University of Edinburgh The department of Anaesthesia and Pain Medicine at the University of Edinburgh is developing a new, online suite of programmes that focus on the Clinical Management and Treatment of Headache Disorders. Only a very few live a life without headache and the majority of us experience headaches at least monthly. Despite the number of different headache disorders, such as migraine and chronic headache, and the impact they have on society at a global level, headache is poorly represented in both undergraduate and postgraduate medical education. A focus on providing education at the Primary Care level is likely to be the critical step in improving the fortunes of sufferers. The course options will consist of singular continuing professional development (CPD) units as well as options for Postgraduate Certificate, Postgraduate Diploma and Master of Science Degrees. This suite has been designed for qualified healthcare professionals of any discipline and is specifically relevant to those working in primary care in any country. It will appeal to doctors, nurses (nurse practitioners and practice nurses), physiotherapists, pharmacists, chiropractors / osteopaths, and other allied / complementary practitioners, provided they are accredited by the appropriate professional bodies. No specific knowledge is required to take any of the courses beyond that already gained by the above healthcare professionals. If you require any further information about any of these courses then please contact Dr Chris McKenzie at cmckenz4@staffmail.ed.ac.uk. Incorporation vs CIO (Charitable Incorporated Organisation) A letter was sent out to all members in October 2012 enclosing the resolutions required for incorporating the charity to become a company limited by guarantee. We thank all of you who responded to this letter and would like to advise that a decision was taken at our AGM in November 2012 to withdraw these draft resolutions. After having sent out the letter we learned that an alternative to becoming incorporated, becoming a CIO (which was our preferred option but was not available at the time) is going to be available in 2013. We will keep you updated as soon as we receive more information on this. Issue 17 - January 2013 www.migraine.org.uk
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