2015 Hypersomnia Foundation Brochure

About the
Hypersomnia
Foundation
Let’s Fill the Seats
The Hypersomnia Foundation’s
conference provides opportunities to
learn about the latest in hypersomnia
research and treatments. In addition,
our conference offers a forum for
professionals and others interested in
hypersomnia to interact and connect.
To find out more about past and
upcoming conferences, please visit the
Hypersomnia Foundation’s web site at
www.hypersomniafoundation.org
To receive the latest information from the
Hypersomnia Foundation, sign up for our free
electronic newsletter SomnusNooze at
www.hypersomniafoundation.org. Like us on
Facebook or follow us on Twitter
@HypersomniaNews. We can also be reached at
info@hypersomniafoundation.org or 5885
Cumming Hwy Suite 108-255, Sugar Hill,
GA, 30518.
In 2014, the Hypersomnia Foundation was
incorporated as a 501(c)(3) nonprofit
organization to improve the lives of people
with hypersomnia. The Foundation
advocates on people’s behalf, provides
support, educates the public and healthcare
professionals, raises awareness, and funds
research into effective treatments, better
diagnostic tools, and, ultimately, cures for the
debilitating conditions that comprise central
disorders of hypersomnolence—idiopathic
hypersomnia, Kleine-Levin syndrome, and
narcolepsy. The Foundation will fulfill this
mission by
•
Providing education for people with
hypersomnia and their supporters,
medical professionals, and scientists.
•
Representing people with hypersomnia at
medical meetings, pharmaceutical
companies, sleep-related organizations,
and extramural funding agencies.
•
Establishing a patient registry.
•
Funding research to identify the cause of
and effective treatments for hypersomnia.
Do you sleep
too much or
have difficulty
waking up or
staying awake?
Won’t you help? Your donation to the
Hypersomnia Foundation will help to
achieve these goals and ensure a better life for
people with hypersomnia. Please donate
online at www.hypersomniafoundation.org.
© 2015 Hypersomnia Foundation
It Could Be
Hypersomnia
3
1
2
About
Hypersomnia
Waking up is the hardest thing I do
every day. After I finally do wake up, I
feel as if I am walking around in a fog.
Some people with hypersomnia set several
alarms, hoping to hear even one. Still others
rely on someone to drag them out of bed.
When finally “awake,” many stumble
through the first minutes or hours of their
day in a state of “sleep drunkenness” and
rely on caffeine or stimulant medication to
function when they are awake.
HYPERSOMNIA SYMPTOMS
•
Sleep that is unrefreshing, even when
the sleep period is long
•
CENTRAL DISORDERS OF
HYPERSOMNOLENCE
•
Idiopathic hypersomnia/
hypersomnolence disorder
•
Kleine-Levin syndrome
•
Narcolepsy
OTHER CONDITIONS IN WHICH
HYPERSOMNIA SYMPTOMS ARE THOUGHT
TO OCCUR
•
Adrenal insufficiency
Sleep drunkenness (or confusional
arousal) when trying to wake up
•
Attention deficit disorder
•
Carnitine deficiency
•
Excessive daytime sleepiness
•
•
Automatic behavior (talking or
moving without awareness or
recollection)
Chronic fatigue syndrome/myalgic
encephalomyelitis
•
Ehlers-Danlos syndrome
•
Iron deficiency
•
Hypothyroidism
•
Major depressive disorder
•
Sleep apnea
•
As a side effect of commonly prescribed
or over-the-counter medication
•
Mental dullness or “brain fog”
•
Trouble concentrating or cognitive
dysfunction
Hypersomnia and hypersomnolence
both refer to either an excess of
sleep or excessive daytime
sleepiness. The International
Classification of Sleep Disorders, 3rd
edition, classifies the associated
conditions as central disorders of
hypersomnolence, and, the
Diagnostic and Statistical Mannual
of Mental Disorders, 5th edition, as
sleep-wake disorders.
DIAGNOSIS
Overnight polysomnography, followed by a
Multiple Sleep Latency Test (MSLT), is useful
in diagnosing some potential causes of
hypersomnolence, such as sleep apnea and
narcolepsy. Actigraphy
and sleep diaries may be
Proper
helpful in documenting
diagnosis is
sleep over a longer
critical to
period of time.
Laboratory tests or brain
successful
imaging studies may be
treatment
necessary and are
determined on a case-by-case basis.
TREATMENT
The US Food and Drug Administration has
not approved any treatments for idiopathic
hypersomnia or Kleine-Levin syndrome. All
medications used for these conditions are
prescribed “off label.” Stimulants and wakepromoting agents are approved for the
treatment of hypersomnolence associated with
narcolepsy, and sodium oxybate is approved
for the treatment of hypersomnolence and
cataplexy associated with narcolepsy.