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.
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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Narcolepsy | Symptoms & Causes
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
- 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.
Narcolepsy | Diagnosis & Treatments
How is narcolepsy diagnosed?
To diagnose narcolepsy, your clinician will ask for your child's detailed medical history and perform a neurological exam. The clinician will review your child’s symptoms and sleep habits. He or she will also ask specific questions about your child’s sleepiness, such as what situations bring out sleepiness, how often it occurs, and if it is affecting your child’s ability to pay attention in class.
If the clinician suspects that your child may have narcolepsy or another type of sleep disorder, he or she may suggest a sleep study.
- An overnight sleep study (polysomnogram) is done in a sleep lab to monitor and record brain waves, eye movements, muscle tone, breathing, oxygen levels, heart rate and rhythm, and leg movements.
- A daytime-nap study or mean sleep latency test records your child’s brain and body activity throughout the day to measure sleepiness.
What are the treatment options for narcolepsy?
Treatment for narcolepsy usually involves a combination of lifestyle changes and medication to reduce sleepiness and treat cataplexy. Medications typically include drugs to help your child stay awake, such as stimulants.
You may need to work with your child’s school to make some of the lifestyle changes needed. These may include:
- taking one or two 15- to 20-minute naps during the day. Naps at mid-morning and after lunch may be especially helpful.
- taking frequent breaks from sitting or other sedentary activities to take short walks
- avoiding heavy meals and medications that cause sleepiness