Narcolepsy Quick Facts

Definition: Narcolepsy is a neurological autoimmune sleep disorder in which the brain loses the ability to maintain normal sleep and wake states.  Affects 1 in every 2,000 Americans (200,000-250,000 Americans).
·      Periods of extreme sleepiness during the day, comparable to how someone without narcolepsy would feel after staying awake for 48-72 hours straight.
·      Cataplexy is a sudden loss of muscle tone while awake, resulting in the inability to move. Emotions, such as laughter or anger, will often bring on cataplexy. In severe cases, cataplexy may cause a person to collapse to ground and stay paralyzed for as long as several minutes.
·      Hallucinations while falling asleep or waking that are often frightening
·      Sleep paralysis upon waking or falling asleep, during which an individual is awake but cannot move
·      Narcolepsy is a nervous system disorder. Narcolepsy isn’t related to seizure disorders, fainting, simple lack of sleep or other conditions that may cause abnormal sleep patterns.
·      There are two forms of narcolepsy, Narcolepsy with Cataplexy (N+C) and Narcolepsy without Cataplexy (N-C).
o   In N+C, an autoimmune reaction destroys the brain’s 70,000 hypocretin-producing cells. Hypocretin neurotransmitters are essential to proper regulation of sleep and wakefulness.
o   The cause(s) of N-C are not well understood.
·      Many primary care doctors are unfamiliar with the basic symptoms of narcolepsy.
·      Individuals experience symptoms for an average of 3 -5 years before receiving an accurate diagnosis and 10 -15 year delays are not uncommon.
·      Narcolepsy is a chronic, lifelong condition. There is no cure for narcolepsy.
·      Leading FDA-approved treatments for narcolepsy: Provigil, Nuvigil and Xyrem. A variety of older medications are prescribed off-label as well.
·     Many patients manage their narcolepsy with multiple medications and diligent personal attention to their health.
Living with Narcolepsy
·      Narcolepsy can cause serious disruptions to daily routine and compromise education, employment, and family opportunities.
·      Studies indicate narcolepsy’s affect upon quality of life is comparable to epilepsy and Parkinson’s disease.