What is narcolepsy?

Narcolepsy is a chronic brain disorder that causes severe daytime sleepiness. People with narcolepsy easily go into rapid eye movement (REM) sleep, a sleep stage in which the eyes may appear to be moving and dreams typically occur.

There are two types of narcolepsy, type 1 (narcolepsy and cataplexy) and type 2 (narcolepsy without cataplexy). The symptoms of both are very similar, but they may have different causes.

There is no cure for narcolepsy, but lifestyle changes and medications can help treat symptoms.

What are the symptoms of narcolepsy?

The most common symptom of narcolepsy is excessive daytime sleepiness, especially when the person isn't active. Some people with narcolepsy may also have sleep attacks that last about 15 to 30 minutes, and that can happen at any time.

About 60 percent of people with narcolepsy have a symptom called cataplexy — a sudden episode of muscle weakness while awake. Cataplexy is triggered by emotions, most often positive emotions, such as laughter. But it can also be triggered by negative emotions, such as anger and frustration. Cataplexy usually begins with muscle weakness in the face and neck and spreads to muscles of the body and limbs. In mild cases, it can cause a sagging face or slurred speech. In severe cases, it can cause the child to collapse to the ground, unable to move for a few minutes. Cataplexy usually only occurs in people with type 1 narcolepsy.

Other symptoms of narcolepsy can include:

  • visual hallucinations when falling asleep or waking up
  • sleep paralysis (feeling like the body is paralyzed or heavy when waking from sleep)
  • waking often during the night
  • attention problems, memory issues, hyperactivity, or behavior problems
  • vivid dreams or nightmares
  • walking, talking, or yelling in sleep
  • kicking or restless movement while sleeping
  • obesity
  • early puberty

Generally, people with type 1 narcolepsy (narcolepsy and cataplexy) have more severe symptoms.

The symptoms of narcolepsy most often start between ages 10 and 19. However, it’s becoming more common for children to be diagnosed before 10.

What are the causes of narcolepsy?

Type 1 narcolepsy is caused by a severe loss of a certain cluster of neurons (brain cells) that produce a neurochemical in the brain that helps maintain wakefulness. Less is known about the cause of narcolepsy type 2 (narcolepsy without cataplexy), but it may be caused by a less severe loss of these same neurons.

There is also a link between type 1 narcolepsy and certain infections, such as the flu, and vaccinations. This has led experts to believe that narcolepsy may be caused by an autoimmune process. Researchers are still learning more about the causes of narcolepsy.

How we care for narcolepsy

At Boston Children’s Hospital, our team of specialists is experienced in diagnosing and treating narcolepsy in children and adolescents. Our Pediatric Sleep Disorders Center brings together clinicians from pediatric neurology, developmental medicine, psychology, and pulmonology to care for this disorder.

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