Narcolepsy

Narcolepsy is an uncommon disorder that causes periods of extreme daytime sleepiness and sudden, brief episodes of deep sleep during the day.
Overview

Narcolepsy is usually caused by low levels of a neurotransmitter, called hypocretin, that helps you stay awake by keeping your brain from entering a deep state of sleep. Sometimes people have narcolepsy that is not caused by low hypocretin levels, but the reason for the condition is not known.

A combination of genetic, autoimmune, and environmental factors put some people at higher risk for narcolepsy. Narcolepsy may occur after an upper airway infection or, rarely, because of a head injury, sarcoidosis, a stroke, a tumor, or another medical condition.

Signs and symptoms include extreme daytime sleepiness; falling asleep without warning, called sleep attacks; difficulty focusing or staying awake; and waking often at night. Other common symptoms that occur when falling asleep or waking up are hallucinations and sleep paralysis, which is a feeling of being awake but unable to move for several minutes. Rarely, people who have narcolepsy may experience loss of muscle tone, called cataplexy, which occurs with strong emotions such as laughter. People who have narcolepsy usually feel refreshed after a brief nap or a full night’s sleep but become sleepy again soon after.

To diagnose narcolepsy, your doctor will consider your medical history, family history, physical exam, and test results. You may have an overnight sleep study, including a sleep test that looks at daytime naps to identify disturbed sleep or a quick onset of rapid eye movement (REM) sleep. Spinal fluid tests may show low levels of hypocretin. If your hypocretin levels are normal, your doctor may ask you to track your sleep habits in a sleep diary and may record information from special devices called actigraphs that track activity and rest periods throughout the day.

Treatment for narcolepsy combines medicines and behavior changes. Medicines used to treat narcolepsy include stimulants and modafinil to treat daytime sleepiness, sodium oxybate to treat daytime sleepiness and cataplexy, and sedatives to improve nighttime sleep. Daytime sleepiness often improves with enough good-quality sleep at night and scheduled naps during the day.

Even with treatment, people who have narcolepsy may still have daytime sleepiness and may experience depression. Talk to your doctor about safety issues, including the risk of car accidents. Therapy, education, and counseling may help you manage your symptoms.

Visit Narcolepsy for more information about this topic.

Research for Your Health

The NHLBI is part of the U.S. Department of Health and Human Services’ National Institutes of Health (NIH)—the Nation’s biomedical research agency that makes important scientific discoveries to improve health and save lives. We are committed to advancing science and translating discoveries into clinical practice to promote the prevention and treatment of heart, lung, blood, and sleep disorders, including narcolepsy. Learn about current and future NHLBI efforts to improve health through research and scientific discovery.

Improving health with current research
- Narcolepsy

Learn about the following ways the NHLBI continues to translate current research into improved health for people with narcolepsy and other sleep disorders. Research on this topic is part of the NHLBI’s broader commitment to advancing sleep science and sleep disorders scientific discovery.

  • NHLBI’s National Center on Sleep Disorders Research (NCSDR). For 25 years, the NCSDR has led foundational research on sleep and circadian biology across the NIH and has worked with federal and private organizations to disseminate sleep health information. The NCSDR administers sleep and circadian research projects, offers training and educational awareness programs, and serves as an NIH point-of-contact for federal agencies and public interest organizations. The Center also participates in research translation and dissemination of scientific sleep and circadian advances to healthcare professionals, public health officials, and the public.
  • Improving the Quality of Medical School Education on Sleep Disorders. As part of its efforts to ensure that research advances are utilized by healthcare providers, the NCSDR has supported the development of medical school curricula and durable educational materials on sleep disorders, including narcolepsy.
  • Sleep Disorders Research Advisory Board (SDRAB). The NHLBI has administered this specialty program advisory panel since 1993. Board members, including medical professionals, federal partners, and members of the public, meet regularly to provide feedback to NIH on sleep-related research needs and to discuss how to move sleep research forward. Visit the Sleep Disorders Research Advisory Board for more information.
  • National Sleep Research Resource (NSRR). This resource was established by the NHLBI to provide biomedical researchers a large, well-characterized data collection from NIH-funded sleep research studies. These data can be used in new research studies to advance sleep research. Visit the National Sleep Research Resource for more information.
  • Research Conference on Sleep and the Health of Women. This 2018 conference focused on the importance of sleep for women’s health. It showcased a decade of federally funded research advances that have helped in understanding the health risks, societal burden, and treatment options associated with sleep deficiency and sleep disorders in women. Learn more from the 2018 Research Conference on Sleep and the Health of Women.
  • Understanding How Sleep Problems Affect the Risk for Disease. The Cardiovascular Health Study, which ran from 1989 to 1999, found that older people with trouble sleeping are more likely to have poor health, depression, angina, and problems with the activities of daily living.

Advancing research for improved health
- Narcolepsy

In support of our mission, we are committed to advancing narcolepsy research, in part through the following ways.

Learn about exciting research areas the NHLBI is exploring that are related to narcolepsy and how sleep affects health.

    Participate in NHLBI Clinical Trials

    We lead or sponsor studies on narcolepsy. See if you or someone you know is eligible to participate in our clinical trials.

    Are you an adult who sleeps less than the recommended amount and has high blood pressure?

    This study is testing whether an eight-week coaching program to help participants get more sleep also helps lower their blood pressure. To participate in this study, you must be between 18 and 65 years old, typically sleep 6.5 hours a night or less, and have high blood pressure. This study is located in Rochester, Minnesota.

    Are you overweight and normally sleep 7-9 hours each night?

    This study is examining what happens when you do not sleep enough, and how this relates to obesity. To participate in this study, you must be between the ages of 20 and 40 and be overweight but not have obesity. This study is located in New York, New York.

    Are you pregnant, with a BMI of 30 or higher?

    This study is examining the connection between obesity, breathing problems associated with sleep, and pregnancy problems such as preeclampsia. To participate in this study, you must be 18 or older, pregnant, and have obesity. This study is located in Pittsburgh, Pennsylvania.

    More Information

    Non-NHLBI resources
    - Narcolepsy

    RELATED NEWS

    RELATED EVENT

    Illustration of woman of color using a mosaic of triangles
    October 16 - 17, 2018
    Natcher Conference Center, Ruth L. Kirschstein Auditorium
    45 Center Dr.
    National Institute of Health, Bethesda, MD 20894

    The 2018 Research Conference on Sleep and the Health of Women is intended to sound a wakeup call throughout society...