What is narcolepsy?
Narcolepsy is a sleep disorder that causes symptoms such as excessive daytime sleepiness and, in some cases, "sleep attacks." These "attacks" cause people with narcolepsy to fall asleep at very unusual and sometimes dangerous times (while in the middle of a conversation or driving a car)..
While narcolepsy is relatively uncommon, its impact on a child's life can be dramatic and, if not recognized, disabling. Although no "cure" for narcolepsy has been found, most children with narcolepsy can lead nearly normal lives if properly treated.
What causes narcolepsy? Although narcolepsy has been thoroughly studied, the exact cause is not known. However, narcolepsy appears to be a disorder of the part of the central nervous system that controls sleep and wakefulness. Cataplexy, sleep paralysis, and hypnagogic hallucinations are similar to the loss of muscle tone that accompanies normal dreaming in a stage of sleep called REM. In narcolepsy the lack of muscle tone and the dream experiences occur at inappropriate times. Narcolepsy is not caused by psychiatric or psychological problems.
Narcolepsy often runs in families, but many people with narcolepsy do not have relatives who are affected. Some researchers have suggested that a set of genes combines with additional unknown factors in a person's life to cause narcolepsy.
Narcolepsy symptoms can appear all at once or they can develop slowly over many years. The four most common symptoms are: excessive daytime sleepiness, cataplexy, sleep paralysis and hypnagogic hallucinations. In some cases, excessive daytime sleepiness is the only symptom.
Excessive daytime sleepiness (EDS)
EDS is usually the first symptom of narcolepsy. People with narcolepsy often report feeling easily tired or tired all the time. They tend to fall asleep not only in situations in which many normal people feel sleepy (after meals or during a dull lecture), but also when most people would remain awake (while watching a movie or writing a letter). People with narcolepsy may also have a "sleep attack" at a very unusual and sometimes dangerous time (while in the middle of a conversation or driving a car).
Cataplexy is sometimes the first symptom of narcolepsy, but usually it develops several years after EDS. Attacks of cataplexy are sudden, brief losses of muscle control. Cataplexy may be mild (such as a brief feeling of weakness in the knees) or it may cause complete physical collapse, resulting in a fall. A person having such an attack is fully awake and knows what is happening. Cataplexy is triggered by stress or a strong emotion such as laughter, anger or surprise. In some individuals, attacks can be caused by simply remembering or anticipating an emotional or anxiety-producing situation.
Sleep paralysis also causes a brief loss of muscle control. Sleep paralysis occurs upon waking up or falling asleep. It is the feeling of being unable to move or speak, even though totally aware of the surroundings. Unlike cataplexy, touching the person usually causes the paralysis to disappear.
Hypnagogic hallucinations are vivid dreamlike experiences that are difficult to distinguish from reality. The dream is often like a nightmare, involving images or sounds of strange animals or prowlers. These dreams are particularly frightening because the person is awake but has no control over the action. The dreams are also disturbing because they can be mistaken for the hallucinations or the delusions of mental illness. A person with narcolepsy may also have other symptoms.
Automatic behavior is the performance of routine tasks by a person who is not consciously controlling the activity. Sometimes a person may actually fall asleep and continue an activity, but not recall having done it when awakened. Automatic behavior can be very dangerous if a person is involved in a potentially dangerous activity such as driving or cooking.
Disturbed nighttime sleep
Disturbed nighttime sleep frequently occurs in people with narcolepsy. Although they have difficulty staying awake during the day, they may also have difficulty staying asleep at night. The many nighttime awakenings further increase the problem of sleepiness during the day.
Other symptoms of narcolepsy
Other symptoms reported by people with narcolepsy include lethargy, low motivation, inability to concentrate, and memory loss. Children are often unable to keep up with their friends or school work and adults are unable to fulfill normal obligations relating to work or family. Some people also experience blurred or double vision, headaches, dizziness, snoring and excess weight.
Narcolepsy cannot be cured, but its symptoms can usually be controlled so that a person with narcolepsy can lead a fairly normal life. Treatment needs to be individualized, as each person with narcolepsy is different. Each treatment plan will have several important aspects to it, including medication, behavioral treatment, and management of environment.
Many people with narcolepsy have tried over-the-counter medications which contain caffeine in an attempt to stay awake. These medications do not work well and can be dangerous. However, doctors can prescribe medications that can be effective in controlling excessive daytime sleepiness, cataplexy and sleep disruption. A balance between control of the symptoms and unwanted side effects of a drug will need to be worked out.
The effective treatment of narcolepsy requires not only medication, but also adjustments in lifestyle. The following suggestions can bring substantial improvement:
- Follow a strict sleep-wake schedule. Your child should go to bed and get up at the same time each day.
- Take short naps once or twice each day, as needed, if recommended.
- Increase physical activity; avoid boring or repetitive tasks.
- Avoid activities that can be dangerous, such as driving, swimming or cooking, except during times when you know your child will be alert.
- Follow doctor's instructions regarding medications very carefully. Inform doctors of changes and problems.
Management of the environment
Narcolepsy can be a devastating disease if family, acquaintances and teachers do not understand the disorder. Daytime sleepiness may be mistaken for laziness, boredom or lack of ability. The experiences of cataplexy and dreaming during wakefulness may be wrongly seen as a psychiatric problem. Be sure to educate family members and help your child's friends and their parents to understand narcolepsy. Most importantly, make sure your child's teachers understand the disorder. Small adjustments in the classroom can make a tremendous difference in your child's self-esteem and ability to obtain a good education.