http://www.wakeupnarcolepsy.org Narcolepsy Facts and Symptoms from Wake Up Narcolepsy, Inc. What is narcolepsy? Narcolepsy is an autoimmune neurological sleep disorder affecting 1 in 2,000 people. Over 200,000 Americans and 3 million people worldwide have narcolepsy. Sadly, narcolepsy is severely under-recognized and misdiagnosed. It is not uncommon for 10 years to pass between initial onset and proper diagnosis. It most often presents itself in childhood, adolescence, or young adulthood, and lasts a lifetime. Narcolepsy’s effect on quality of life compares to Parkinson’s disease and epilepsy. There is currently no cure. Narcolepsy is a serious medical condition. It offers researchers a unique opportunity to learn about the central mechanisms of REM/dream sleep and alertness. - See more at: http://www.wakeupnarcolepsy.org/about-narcolepsy/what-is-narcolepsy/#sthash.eK1Sn9FS.dpuf What are the symptoms? The four major symptoms associated with narcolepsy are: Excessive daytime sleepiness (EDS) – episodes of overwhelming sleepiness experienced throughout the day, comparable to how one would feel after staying awake for 48-72 hours straight. Cataplexy – about 60% of people with narcolepsy also experience cataplexy, the sudden episode of muscle weakness triggered by strong emotion, resulting in the inability to move while awake. The weakness may be a buckling in the knees, the head dropping, or jaw slackening. Often, emotions such as humor, elation, surprise, or anger trigger the weakness. In severe cases, an individual might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack. Considered the pathological equivalent of REM/dream sleep atonia unique to narcolepsy. Hypnagogic and hypnopompic hallucinations – auditory, visual or tactile hallucinations, while falling asleep or waking up. These vivid dream-like experiences can be very frightening, life-like and confused as reality. Sleep paralysis – the inability to move upon falling asleep or waking up. The paralysis may last a few seconds to a few minutes during which time one is unable to move. A frightening symptom considered to be an abnormal episode of REM/dream sleep atonia. Other symptoms may include: Most people who have narcolepsy don’t sleep well at night. They may have trouble falling and staying asleep. Vivid, scary dreams may disturb sleep. Not sleeping well at night worsens daytime sleepiness. Automatic Behavior – when you’re not aware of your actions, so you don’t do them well. For example, if you’re writing before falling asleep, you may scribble rather than form words. Most people who have this symptom don’t remember what happened while it was going on. Children who have undiagnosed narcolepsy often have trouble studying, focusing, and remembering things. Also, they may seem hyperactive. Some children who have narcolepsy speed up their activities rather than slow them

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Narcolepsy Fast Facts
What is Narcolepsy?
Narcolepsy is a life-long disorder of the central nervous system characterized by the
brain's inability to control sleep-wake cycles. At various times throughout the day, people
with narcolepsy experience irresistible and sudden bouts of sleep, which can last from a
few seconds to several minutes. This sleepiness is similar to how non-narcoleptics feel
when going without sleep for 48-72 hours.
Sleep episodes can occur at any time: at work or school, during a conversation, playing a
game, eating a meal, or, most dangerously, when driving an automobile or operating
other types of machinery.
Other major symptoms may include:
• Cataplexy, a sudden loss of voluntary muscle tone, usually triggered by strong
emotions, often laughter.
• Vivid dream-like images or hallucinations during sleep onset or when waking.
• Brief episodes of total paralysis, also during sleep onset or when waking.
• Some individuals with narcolepsy have no difficulties falling asleep at night. Most,
however, experience difficulties staying asleep.
Narcolepsy often affects sufferers’ quality of life. Social, career, and other choices may
be compromised. Especially for young people, the condition can cause embarrassment,
anxiety, and depression, particularly if peers and loved ones are not supportive.
Who Gets Narcolepsy?
Narcolepsy affects both males and female equally and appears throughout the world. It
most often starts in childhood or adolescence. Narcolepsy is not rare, but it is an under-
recognized and under-diagnosed condition. More than 200,000 Americans and 3 million
people worldwide are living with narcolepsy.
Causes
Narcolepsy may have several causes. Narcolepsy is almost always caused by the lack of
a neurotransmitter called hypocretin, or orexin. Neurotransmitters are brain chemicals
that neurons produce to communicate with each other and to regulate biological
processes. Loss of hypocretin results in the inability to regulate sleep.

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Research has shown that narcolepsy is caused by the loss of brain cells that produce
hypocretin. The reason for such cell loss remains unknown but appears to be
autoimmune in nature. That is, the body’s immune system selectively attacks hypocretin-
containing brain cells. In rare cases, narcolepsy is caused by a genetic defect that
prevents normal production of hypocretin molecules.
Recent research points to two infectious agents that may be involved in triggering the
condition. Frequently, narcolepsy onset follows a seasonal pattern of higher rates in
spring and early summer, following winter upper airway infection season. Researchers
are investigating a possible link between narcolepsy onset and streptococcus infection,
such as strep throat.
Diagnosis
Unfortunately, many physicians are unfamiliar with the symptoms of narcolepsy.
Likewise teachers and athletic coaches, individuals who often can observe symptoms
most directly.
Many people experience symptoms for three to five years before getting an accurate
diagnosis. Delays of 10-15 years are not uncommon.
Treatment
Currently, narcolepsy cannot be cured, and intensive research to find a cure continues.
The loss of hypocretin is believed to be irreversible and lifelong. But the condition can
be controlled in most individuals with drug treatment. The leading medications are
Xyrem®, Provigil® and Nuvigil®.
Drug therapy should accompany various behavioral strategies according to the needs of
the affected individual, such as:
• Take short, regularly scheduled naps at times when sufferers tend to feel sleepiest.
• Maintain a regular sleep schedule.
• Avoid alcohol and caffeine-containing beverages for several hours before bedtime.
• Avoid smoking, especially at night.
• Maintain a comfortable, adequately warmed bedroom
• Engage in relaxing activities such as a warm bath before bedtime.
• Exercising for at least 20 minutes per day no closer than four to five hours before
bedtime.
Source: National Institutes of Health
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