Dear Alice,

My doctor thinks that I may have narcolepsy. What exactly is narcolepsy?

— wondering what narcolepsy is

Dear wondering what narcolepsy is,

It's not uncommon to leave a health care provider's office with questions. People are often left wanting more information after being hit with talk of a diagnosis. More to your question, narcolepsy is a relatively rare neurological disorder that is diagnosed in about one in every 2000 adults. Although its causes are unclear, narcolepsy is thought to impair the brain's ability to regulate rapid eye movement (REM) sleep in sleep-wake cycles.

Adults usually sleep about eight hours a night, and the brain regulates a series of four to six cycles a night. Each cycle lasts about 100 to 110 minutes and has a period of non-rapid eye movement sleep (NREM, usually lasting 80 to 100 minutes) followed by a period of REM sleep. For people with narcolepsy, REM sleep happens much more quickly, often within a few minutes of falling asleep.

There are four main symptoms of narcolepsy, which include:
  • Sudden and fleeting urges to sleep at random times during the day (a.k.a., excessive daytime sleepiness). These often lead narcoleptic people to fall asleep for seconds, minutes, or longer.
  • Sudden loss of voluntary muscle tone (cataplexy), which can cause a range of effects, from slurred speech to complete collapse.
  • Vivid hallucinations during sleep.
  • Brief, total paralysis at the start or end of sleep.
Diagnosis may be tricky for several reasons. First, its primary symptom, excessive daytime sleepiness, is also a symptom of depression, other sleep disorders, infections, etc. Second, symptoms may be present for quite some time before a diagnosis is given. This is because narcolepsy is so rare that many health care providers and patients are not familiar with it. Symptoms can start popping up between the ages of 10 and 25, but people of all ages can have signs and symptoms of narcolepsy. To confirm a diagnosis of narcolepsy, tests can be done at a sleep clinic to measure nerve activity in muscles, respiration, and electrical activity in the brain.

There is no cure for narcolepsy, so treatment focuses on managing its symptoms. It can be helpful to take regular, short naps. Health care providers also recommend creating a comfortable and relaxing nighttime sleeping place. It seems that unwinding and relaxing before bedtime also helps to improve sleep quality. Avoiding alcohol and caffeine before bed, and avoiding cigarette smoking, are also recommended.

Now that you know more about narcolepsy, what seems most relevant to you? What extra information would you like? Sometimes it helps to make a list of questions and concerns to take with you to your health care provider.

For more information and support, check out the Narcolepsy Network and the National Sleep Foundation.
Last updated Jun 10, 2015
Originally published Aug 25, 2006

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