Narcolepsy Support Group

The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime naps may occur with or without warning and may be irresistible. These naps can occur several times a day. They are typically refreshing, but only for up to a couple hours. Drowsiness may persist for prolonged periods of time. In addition, night-time sleep may be fragmented with frequent wakenings.

It is estimated that there are as many as 3 million people worldwide affected by narcolepsy. In the United States it is estimated that narcolepsy afflicts as many as 200,000 Americans, but fewer than 50,000 are diagnosed. It is as widespread as Parkinson's disease or multiple sclerosis and more prevalent than cystic fibrosis, but it is less well known. Narcolepsy is often mistaken for depression, epilepsy, or the side effects of medications.

Narcolepsy can occur in both men and women at any age, although its symptoms are usually first noticed in teenagers or young adults. There is strong evidence that narcolepsy may run in families; 8 to 12 percent of people with narcolepsy have a close relative with the disease.

Narcolepsy has its typical onset in adolescence and young adulthood. There is an average 15-year delay between onset and correct diagnosis, that may contribute substantially to the disabling features of the disorder. Cognitive, educational, occupational, and psychosocial problems associated with the excessive daytime sleepiness of narcolepsy have been documented. For these to occur in the crucial teen years when education, development of self-image, and development of occupational choice are taking place is especially damaging. While cognitive impairment does occur; it may only be a reflection of the excessive daytime somnolence.

Narcolepsy is much more common among men than among women. It is an underdiagnosed condition in the general population. This is partly because its severity varies from obvious down to barely noticeable. Some narcoleptics do not suffer from loss of muscle control. Others may only feel sleepy in the evenings.

Several treatments are available for narcolepsy. These treat the symptoms, not the underlying cause. The drowsiness is normally treated using stimulants such as methylphenidate (Ritalin®), amphetamines (Adderall®), dextroamphetamine (Dexedrine®), methamphetamine (Desoxyn®), modafinil (Provigil®), etc. Other medications used are codeine (see references to clinical studies) and selegiline. In many cases, planned regular short naps can reduce the need for pharmacological treatment of the EDS to a low or non-existent level. The cataplexy is treated using clomipramine, imipramine, or protriptyline but this need only be done in severe cases. A new medication is gamma-hydroxybutyrate (GHB) (Xyrem®), recently approved in the USA by the Food and Drug Administration. It is thought to be effective because it increases the quality of nocturnal sleep.