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NINDS Narcolepsy Information Page

Condensed from Narcolepsy Fact Sheet

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What is Narcolepsy?

Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience irresistable bouts of sleep. If the urge becomes overwhelming, individuals will fall asleep for periods lasting from a few seconds to several minutes. In rare cases, some people may remain asleep for an hour or longer.  In addition to excessive daytime sleepiness (EDS), three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening; and brief episodes of total paralysis at the beginning or end of sleep.  Narcolepsy is not definitively diagnosed in most patients until 10 to 15 years after the first symptoms appear. The cause of narcolepsy remains unknown.  It is likely that narcolepsy involves multiple factors interacting to cause neurological dysfunction and sleep disturbances.

Is there any treatment?

There is no cure for narcolepsy.  In 1999, after successful clinical trial results, the U.S. Food and Drug Administration (FDA) approved a drug called modafinil for the treatment of EDS. Two classes of antidepressant drugs have proved effective in controlling cataplexy in many patients: tricyclics (including imipramine, desipramine, clomipramine, and protriptyline) and selective serotonin reuptake inhibitors (including fluoxetine and sertraline).  Drug therapy should be supplemented by behavioral strategies.  For example, many people with narcolepsy take short, regularly scheduled naps at times when they tend to feel sleepiest.  Improving the quality of nighttime sleep can combat EDS and help relieve persistent feelings of fatigue. Among the most important common-sense measures people with narcolepsy can take to enhance sleep quality are actions such as maintaining a regular sleep schedule, and avoiding alcohol and caffeine-containing beverages before bedtime.
 
The drug Xyrem (sodium oxybate or gamma hydroxybutyrate, also known as GHB) was approved in July 2002 for treating cataplexy and in November 2005 for EDS in people who have narcolepsy.  Due to safety concerns associated with the use of this drug, the distribution of Xyrem is tightly restricted.

What is the prognosis?

None of the currently available medications enables people with narcolepsy to consistently maintain a fully normal state of alertness.  But EDS and cataplexy, the most disabling symptoms of the disorder, can be controlled in most patients with drug treatment. Often the treatment regimen is modified as symptoms change. Whatever the age of onset, patients find that the symptoms tend to get worse over the two to three decades after the first symptoms appear. Many older patients find that some daytime symptoms decrease in severity after age 60.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other institutes of the National Institutes of Health (NIH) conduct research into narcolepsy and other sleep disorders in laboratories at the NIH and also support additional research through grants to major medical institutions across the country. The NINDS continues to support investigations into the basic biology of sleep, including the brain mechanisms involved in generating and regulating sleep.  Within the National Heart, Lung, and Blood Institute, also a component of the NIH, the National Center  on Sleep Disorders Research (NCSDR) coordinates Federal government sleep research activities and shares information with private and nonprofit groups.

NIH Patient Recruitment for Narcolepsy Clinical Trials

Organizations

Column1 Column2
Brain Resources and Information Network (BRAIN)
National Institute of Neurological Disorders & Stroke
P.O. Box 5801
Bethesda, MD   20824
braininfo@ninds.nih.gov
http://www.ninds.nih.gov
Tel: 800-352-9424
Fax: 301-402-2186

Narcolepsy Network, Inc.
129 Waterwheel
North Kingstown, RI   02852
narnet@narcolepsynetwork.org
http://www.narcolepsynetwork.org
Tel: 888-292-6522 401-667-2523
Fax: 401-633-6567

National Sleep Foundation
1010 N. Glebe Road
Suite 310
Arlington, VA   22201
nsf@sleepfoundation.org
http://www.sleepfoundation.org
Tel: 703-243-1697
Fax: 202-347-3472

National Heart, Lung, and Blood Institute (NHLBI)
National Institutes of Health, DHHS
31 Center Drive, Rm. 4A21 MSC 2480
Bethesda, MD   20892-2480
http://www.nhlbi.nih.gov
Tel: 301-592-8573/240-629-3255 (TTY) Recorded Info: 800-575-WELL (-9355)

Related NINDS Publications and Information
  • Narcolepsy Fact Sheet
    An information booklet on Narcolepsy compiled by the National Institute of Neurological Disorders and Stroke (NINDS).
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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last updated April 16, 2014