Health Library

Narcolepsy

Narcolepsy (nahr-kuh-lep-see) is a fairly common sleep disorder involving abnormal sleep and wake cycles. It is a lifelong condition and can affect all aspects of your child’s life.

The first symptoms usually appear between ages 10 and 20, or early adulthood, and may include:

• Excessive daytime sleepiness
• Ongoing struggles to stay awake
• Falling asleep at unusual times and locations — sometimes unexpectedly and suddenly

What are Symptoms of Narcolepsy?

Symptoms of narcolepsy can appear all at once or develop slowly over time. The most common symptoms are:

• Excessive daytime sleepiness (EDS): EDS is usually the first symptom of narcolepsy and may be the only symptom. With EDS, a person may fall asleep when most people would remain awake or when others would normally just feel sleepy. They may also have a "sleep attack" at a very unusual and sometimes dangerous time (while talking, swimming or riding a bike).
• Cataplexy: Cataplexy [kat-uh-plek-see] is a sudden, brief loss of muscle control. It is sometimes the first symptom of narcolepsy. Cataplexy may be mild — such as weakness in the knees — or it may cause a complete collapse or fall. The person is fully awake and knows what is happening. Stress or strong emotions can cause cataplexy.
• Sleep paralysis: Sleep paralysis also causes a brief loss of muscle control. Sleep paralysis occurs when waking up or falling asleep. It is the feeling of not being able to move or speak, while aware. Unlike cataplexy, touching your child usually stops it.
• Hypnagogic hallucinations: Hypnagogic (hip-nuh-goj-ik) hallucinations are dreamlike experiences that are difficult for the child to tell apart from reality. The dream is often like a nightmare and can be mistaken by others for hallucinations or mental illness.
• Automatic behavior: Automatic behavior occurs when a person does a task without knowingly controlling it. Sometimes a person may actually fall asleep while continuing an activity, but not remember having done it when they awaken.
• Disturbed nighttime sleep: Disturbed nighttime sleep happens a lot in people with narcolepsy. Although they have trouble staying awake during the day, they may also have trouble sleeping at night.
• Other symptoms: Other symptoms include low energy, low motivation, trouble concentrating and memory loss. Children can have difficulty keeping up with their friends or school work. Some also experience blurred or double vision, headaches, dizziness and excessive weight gain — all because of a lack of enough quality sleep.

What Causes Narcolepsy?

Most people with narcolepsy don't have a chemical in the brain called hypocretin that controls alertness. It often, but not always, runs in families. Some researchers suggest that both genes and other factors play a role in its cause.

How is Narcolepsy Diagnosed?

It is difficult to diagnose narcolepsy in the beginning stages, even by doctors. Many people are never diagnosed. If there is any concern about having narcolepsy, your child should see a pediatric sleep specialist who is trained to evaluate narcolepsy.

1. First, a complete physical exam and medical history is done to rule out any other possible medical conditions that may be causing the sleep symptoms.
2. Next, your child will do an overnight sleep study in a sleep lab to where a sleep specialist will monitor your child and see if anything else is causing the child's difficulties.
3. Following the sleep study, another test focuses on daytime sleepiness and sleep patterns during a series of scheduled naps taken every two hours during the day.
4. In some difficult cases, hypocretin (a chemical in the brain) is measured to help diagnose.

How is Narcolepsy Treated?

Narcolepsy cannot be cured, but its symptoms can be controlled so that people with it can lead fairly normal lives. Treatment depends on the child. Different children have different symptoms and respond differently to treatment. A combination of a variety of treatments is usually used, including:

• Medication: Sleep specialists can write prescriptions for medications that help control excessive daytime sleepiness, cataplexy and sleep disruption. Over-the-counter medications are not recommended.
• Lifestyle: Changes in lifestyle can improve symptoms. Your sleep specialist may recommend that your child:
• Follow a strict sleep-wake schedule each day
• Take short naps once or twice a day
• Increase exercise; avoid boring or repetitive tasks
• Be careful doing activities such as riding a bike, driving a car, or swimming
• Create an individual health plan with teachers and school staff to provide academic support
• Environment: Narcolepsy can be difficult when family, friends and teachers do not understand it. Daytime sleepiness may be mistaken for laziness, boredom or lack of ability. Cataplexy and hypnagogic hallucinations may be wrongly viewed as a mental illness. We recommend teaching family members and your child's friends and their parents about the disorder, what to expect and how to help your child. Most importantly, your child's teachers should understand it. Small adjustments in the classroom can make a big difference in your child's self-esteem and ability to get a good education.