Narcolepsy: What it is, how to treat it

Narcolepsy is a fairly rare disorder—about 1 in 2,000 people has this condition—and so I hardly ever see patients with this problem. However, I know that narcolepsy can have a serious impact on a person's life. The sleep patterns of people with narcolepsy are profoundly disrupted, which can make it hard to stay awake when you need to, and cause other symptoms. Here's an article that describes the condition in detail, from Harvard Medical School's Special Health Report called Improving Sleep: A guide to a good night's rest.

Narcolepsy is a disorder of sleep/wake regulation whose hallmark is daytime sleepiness. A variety of other symptoms may also be present, but abnormalities of rapid eye movement (REM) sleep seem to underlie each one. Instead of occurring after a steady progression through the other stages of sleep, this deep sleep intrudes at unusual and unwelcome times, such as immediately after sleep begins, as soon as a person lies down, or even in the midst of daytime activities.

Narcolepsy usually becomes apparent during adolescence or young adulthood, although symptoms sometimes appear in early childhood or middle age. On average, it takes five years of symptoms and visits to five physicians before a diagnosis of narcolepsy is made. This is because sleepiness may be the only symptom, or cataplectic attacks (see "Cataplexy, below") may be misdiagnosed as epilepsy or fainting.

Narcolepsy may manifest in any of several ways:

• Excessive sleepiness. People with narcolepsy often feel extremely tired and struggle to stay awake during the daytime.
• Sleep attacks. A person may suddenly fall asleep for 5 to 10 minutes when relaxing or even while carrying on a conversation. If REM sleep and dreaming occur immediately, the individual sometimes makes conversation that is appropriate to the dream instead of the actual situation.
• Cataplexy. In cataplexy, the brain mechanism that paralyzes muscles during REM sleep becomes activated during the day. Thus, you may be fully alert but suffer partial paralysis or a complete muscle collapse, often brought on by laughter, anger, or other strong emotions. You are usually fully awake and aware of what's going on, but unable to talk. Although a few people then fall asleep, most recover spontaneously after several seconds or minutes.
• Sleep paralysis. A terrifying feeling of paralysis may occur during the transition between wakefulness and sleep if the REM stage begins before a person is fully asleep. Although muscle control usually returns within a few minutes, such episodes can cause great anxiety.
• Hypnagogic hallucinations. When REM dreaming occurs during wakefulness, the vivid and often frightening images, known as hypnagogic hallucinations, are difficult to distinguish from reality. A person may see prowlers or believe that his or her house is on fire. This usually happens just at sleep onset or upon awakening. This condition can be confused with mental illness.
• Disturbed nighttime sleep. Just as sleep intrudes during the day, unwelcome awakenings can occur at night, depriving narcoleptics of restorative rest and exacerbating daytime drowsiness. Some feel as if they have hardly slept at all.
• Automatic behavior. Because of their profound sleepiness, people with narcolepsy perform many routine tasks without being fully aware of what they are doing. For example, one man washed and dried the dishes and then stacked them in the refrigerator but had no recollection of doing so.

Treatment for narcolepsy is geared toward improving wakefulness during the day and preventing REM-related symptoms.

Most people require stimulant medications such as methylphenidate (Ritalin) and dextroamphetamine (Dexedrine) to counter sleep attacks and drowsiness. Even with medication, however, people are never as alert as they would be if they didn't have this condition. Modafinil (Provigil), a once-a-day medication to promote wakefulness, is less potent than methylphenidate (Ritalin) and dextroamphetamine (Dexedrine).

In most people, antidepressants that suppress REM sleep — such as fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), clomipramine (Anafranil), or venlafaxine (Effexor) — can also prevent cataplexy and other REM-related symptoms.

Another medication for cataplexy is sodium oxybate (Xyrem), also known as gamma hydroxybutyrate (GHB). This medication helps decrease the number of cataplexy episodes and may improve nighttime sleep and reduce daytime sleepiness as well. Because of its chemical properties, it must be taken at bedtime and again during the middle of the night.

Do you have narcolepsy? What treatments have worked for you?

Julie K. Silver, M.D., is an assistant professor in the Department of Physical Medicine and Rehabilitation at Harvard Medical School. She is also the Chief Editor of Books for Harvard Health Publications.

Sleep
Need better sleep? Learn how to get it with Improving Sleep: A Guide to a Good Night's Rest. This special report from Harvard Medical School describes the factors that can disturb sleep, the latest in sleep research, and, most importantly, what you can do to get a good night's sleep. It also includes in-depth information on sleep disorders, including restless legs syndrome, narcolepsy, and sleep apnea.

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