What is narcolepsy?

Narcolepsy is a condition of excessive sleepiness that may considerably impact all aspects of a child’s life including social and academic functioning.

Children with narcolepsy experience the following:

  • constant excessive daytime sleepiness
  • ongoing struggles to stay awake
  • falling asleep at unusual times and locations that may be unexpectedly sudden in the form of sleep attacks

What causes narcolepsy?

The exact cause of this disorder is still not known. Narcolepsy is thought to be related to a disruption in an area of the brain that controls sleep and wakefulness. In many cases, it is thought to be due to a loss of a particular chemical in the brain called hypocretin or orexin.

Narcolepsy affects an equal number of boys and girls. Initial symptoms are usually not reported until individuals are between the ages of 15 and 25 but they certainly have been seen in younger children. Sometimes narcolepsy is seen in more than one family member but in most cases is not inherited. Some viral infections have been implicated in precipitating this disorder in susceptible individuals.

What are the signs and symptoms of narcolepsy?

Symptoms of narcolepsy can develop over several years or can appear together all at once.

The four most common symptoms/signs of narcolepsy are:

  • Excessive daytime sleepiness: This is usually the first sign of narcolepsy. Individuals say they feel tired all the time. They can fall asleep at unusual times, such as while driving, in the middle of a conversation, or while eating.
  • Cataplexy: Cataplexy is a sudden, brief loss of muscle control triggered by stress or a strong emotion, such as laughter, anger, anxiety, or surprise. Cataplexy may be mild--like a brief feeling of weakness in the knees, or more significant such as a complete collapse to the ground from inability to maintain posture. Breathing is not affected but a sense of choking may be reported. Injury from falls is rare because the paralysis comes on over a few seconds. Cataplexy is sometimes the first symptom of narcolepsy but more often develops after months to years of having narcolepsy. It may not be seen in all cases of narcolepsy.
  • Sleep paralysis: Sleep paralysis is a brief loss of muscle control either when falling asleep or waking up. It is a feeling of being unable to move or speak, even though the person is totally aware of his or her surroundings. Being touched by another person usually causes the paralysis to disappear.
  • Hypnagogic hallucinations: These are vivid, dream-like/nightmare events that are difficult to distinguish from reality. They occur just prior to falling asleep or just after awakening. The "dreams" often involve images or sounds of strange animals or prowlers. The content is generally scary. These many times come in combination with the sleep paralysis episodes and are a part of the dream (REM) intrusion into wakefulness that occurs with narcolepsy.

Other symptoms of narcolepsy can include:

  • Disturbed sleep through the night--difficulty sleeping through the night with frequent awakenings. This is in contrast to excessive sleepiness in the daytime.
  • Automatic behaviors--continuing to perform routine tasks without any awareness or later memory of ever doing them (examples: writing a letter, doing homework, cooking, cleaning, driving)

Other symptoms reported by children and adolescents with narcolepsy include memory loss, lack of concentration, low motivation, sluggishness, difficulty keeping up with friends and with schoolwork. Substance abuse and depression may sometimes occur.

How is narcolepsy diagnosed?

  1. First, a thorough physical exam and medical history is conducted to rule out any other possible medical conditions that may be causing the sleep symptoms. It may be a good idea to consult a sleep specialist.
  2. Next, a sleep specialist conducts an overnight sleep study in a sleep laboratory. This test, called a polysomnogram, monitors sleep to help determine if any other sleep disorders are contributing to the child's sleeping difficulties.
  3. The next day following the sleep study, another test, called a multiple sleep latency test, is also done. This is a 5-nap test that evaluates daytime sleepiness and sleep patterns during a series of scheduled naps taken every 2 hours during the day. The results of these two tests are used to diagnose narcolepsy.
  4. Spinal fluid and genetic tests are reserved for very special cases.

How is narcolepsy treated?

There is no cure for narcolepsy at this time. However, there are treatments to help manage symptoms so that individuals experiencing the disorder can lead a near normal life. Treatment plans typically involve a three-pronged approach: medication, behavioral modification, and education.

Medication: Prescription medications are available to treat excessive daytime sleepiness, cataplexy, sleep disturbances, and hallucinations. Avoid caffeine in the late afternoon and evening so that nighttime sleep is not impacted. (Note: caffeine is contained in coffees, teas, colas and some non-cola pops, energy drinks, and chocolates.)

Behavior modification: Follow a strict daily sleep/wake time schedule that includes an adequate amount of sleep for your age. Take one or two short naps each day, as needed. Your doctor may be able to help you mix-and-match your nap and medication schedules to provide you with a plan that reduces your sleepiness effectively. Avoid activities that can be a danger to your health or life, such as driving, swimming, or cooking, except during times when you know you will be alert. Exercise regularly; decrease repetitive or boring tasks.

Education: Educate close friends, family members, co-workers, teachers, etc. (those who you have close contact with) about your disorder and how it may affect your functioning. For example, daytime sleepiness can be mistaken for laziness, or lack of interest or ability. Plan now for how your future (i.e., home, work, family) may be affected by narcolepsy. Seek out community support such as Narcolepsy Network, Inc. Narcolepsy support groups can provide valuable resources and reassurances.

Additional Sleep Information and Suggested Readings

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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 6/25/2013…#14307