Narcolepsy is a chronic neurological condition characterized by excessive sleepiness. Sleepiness is often present during the day, but at times, the urgency to sleep is overwhelming (sleep attacks).
Other symptoms of narcolepsy include:
- vivid dreams or hallucinations upon falling asleep (hypnogogic hallucinations)
- feeling paralyzed momentarily in sleep (sleep paralysis)
- interrupted nighttime sleep
- sudden attacks of muscle weakness in the daytime (cataplexy)
Cataplexy is the least common symptom of these, and many people with narcolepsy never experience it. Narcolepsy with cataplexy is called narcolepsy type 1, while narcolepsy without cataplexy is called narcolepsy type 2.
Narcolepsy type 1 is thought to be triggered by a loss of hypocretin in the brain. Hypocretin, also known as orexin, is a naturally occurring brain chemical that’s important for wakefulness, REM sleep regulation, feeding, and other functions.
Researchers are exploring genetic factors, infection, trauma, and autoimmunity as possible underlying causes. The cause of narcolepsy type 2 is not known.
Feelings of overwhelming sleepiness tend to occur most often in boring monotonous situations, but they may occur suddenly and without warning.
You may fall asleep in conversation, at your desk at work, or even while driving. You may also fall asleep for a few seconds (microsleeps) or a few minutes, but you often feel refreshed (at least temporarily) after a short nap. These episodes occur more frequently when sleep deprived or when medications aren’t optimized.
Episodes of cataplexy may be triggered by laughter, surprise, or other strong emotion and usually last only a few moments.
During sleep attacks, you’re asleep and unaware of your environment. When you awaken, you often feel less sleepy for a while.
During cataplexy, you lose muscle tone but are awake and aware of your environment. Episodes may be mild, only affecting a few muscles. For example, blurry vision, slurred speech, weak handgrip, or buckling of the knees may occur.
Occasionally, episodes may involve multiple muscles. Individuals may fall to the ground and seem transiently unresponsive even though they are awake.
In addition to the recommended nightly amount of sleep, many experts suggest brief daytime naps (15 to 20 minutes) for those with narcolepsy. Naps should be timed strategically for when you’re at your sleepiest. A single daytime nap in the mid-afternoon can be helpful to minimize sleep attacks.
In one small 2010 study, anxiety symptoms were reported in more than 50 percent of individuals with narcolepsy. However, this area is not well studied.
Sometimes, the anxiety is specific to narcolepsy. It may occur in the setting of a frightening dream with sleep paralysis during sleep. You may also have anxiety about having a cataplexy attack or sleep attack in a social situation.
In each of these situations, knowledge about the disorder and its treatments may be helpful. For more pervasive anxiety, seeing a therapist or psychologist may be helpful.
Since narcolepsy is rare, other people may not consider that you have a disorder and misinterpret sleep attacks as laziness or not caring. This can lead to embarrassment and social isolation.
Educating family and trusted friends about narcolepsy and its symptoms may increase support and help with feelings of isolation.
It may be helpful to inform employers or school administrators of the diagnosis and request accommodations, such as time for naps or rest breaks. Under the Americans with Disabilities Act, employers should make reasonable accommodations if possible.
Reaching out to a therapist, psychologist, or local support groups can be very helpful in developing coping strategies.
Narcolepsy is generally treated with medication. Some medications are effective for sleepiness, some are effective for cataplexy, some are effective for other associated symptoms, and some are effective for multiple symptoms.
Sometimes, combinations of medications are used. The American Academy of Sleep Medicine periodically reviews and updates the recommendations for pharmacologic management.
Behavioral measures may be helpful. These are some recommendations:
- Get the recommended amount of nighttime sleep.
- Keep a consistent sleep schedule.
- Avoid caffeine, stimulants, and alcohol too close to bedtime.
- Keep active during the day.
- Avoid sedating medications.
- Use daytime naps strategically.
Narcolepsy is a lifelong condition. Symptoms may vary, but the disease doesn’t typically worsen over time.
Some narcolepsy resources I recommend are:
- American Academy of Sleep Medicine
- Sleep Education
National Heart, Lung, and Blood Institute
- National Institute of Neurological Disorders and Stroke
- National Organization for Rare Disorders
- National Sleep Foundation
Narcolepsy support groups:
Dr. Janet Hilbert is an assistant professor of clinical medicine at Yale University, in the section of pulmonary, critical care, and sleep medicine. She’s board-certified in internal medicine, pulmonary medicine, critical care medicine, and sleep medicine. Hilbert serves as medical director for the Yale Noninvasive Ventilation Program. She’s an active clinician and educator, with a strong commitment to community and patient education.