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Narcolepsy- download this document in Microsoft Word format

Narcolepsy can be defined as excessive drowsiness during the day with a tendency to sleep at inappropriate times. The sleep episodes of narcolepsy are sometimes brought on by highly stressful situations and are not completely relieved by any amount of sleep. Although narcolepsy is a fairly uncommon condition, its impact on a person's life can be serious and-if not recognized and appropriately managed-disabling. Recent advances in medicine, technology and pharmacology (the study of the effects of drugs) are helping healthcare providers to recognize and treat this condition. A cure for narcolepsy has not yet been found, but most people with this disorder can lead nearly normal lives if the condition is properly treated.

What are the symptoms of narcolepsy?
The four most common symptoms of narcolepsy are excessive daytime sleepiness, cataplexy (sudden loss of strength in the muscles), sleep paralysis, and hallucinations (hallucinations that occur just before falling asleep, during naps and/or on waking up). In most cases, excessive daytime sleepiness is the most bothersome symptom. The symptoms of narcolepsy can appear all at once or develop gradually over many years.

Excessive Daytime Sleepiness (EDS): EDS is usually the first symptom of narcolepsy. People with narcolepsy often report feeling easily tired or sleepy all the time. They tend to fall asleep not only in situations in which many people normally feel sleepy (after meals or during a dull lecture), but also when most people would remain awake (while watching a movie, writing a letter, or driving).
Cataplexy: Attacks of cataplexy-sudden, brief losses of muscle control-are sometimes the first symptom of narcolepsy, but more often develop months or years after the onset of sleepiness. Cataplexy can be mild-such as a brief feeling of weakness in the knees-or it may cause a complete physical collapse, resulting in a fall. A person having such an attack is fully awake and knows what is happening. Cataplexy is usually triggered by strong emotion, such as laughter, anger or surprise.
Sleep Paralysis: Sleep paralysis is a brief loss of muscle control that occurs when a person is falling asleep or waking up. The person may be somewhat aware of the surroundings, but is unable to move or speak. Sleep paralysis, unlike cataplexy, usually disappears when the person is touched.
Hypnagogic Hallucinations: Hypnagogic hallucinations are vivid dreamlike experiences that occur when a person is drowsy. The hallucinations may involve disturbing images or sounds, such as of strange animals or prowlers. These can be frightening because the person is partly awake but has no control over the events. The dreams can also be upsetting if they are mistaken for the hallucinations or the delusions of mental illness.

Other symptoms of narcolepsy

Automatic Behaviors: Automatic behaviors are routine tasks performed by a person who is not consciously controlling the activity. Sometimes a person may actually fall asleep and continue an activity, but not remember it after waking up. Automatic behaviors can be dangerous if a person is involved in a potentially hazardous activity, such as driving or cooking.
Disturbed Nighttime Sleep: This symptom often occurs in people with narcolepsy. A person who has trouble staying awake during the day may also have trouble staying asleep at night. The problem of daytime sleepiness is made worse by the many nighttime awakenings. Other symptoms reported by people with narcolepsy include double vision, an inability to concentrate, and memory loss.

What causes narcolepsy?
Although the exact cause is not known, narcolepsy appears to be a disorder of the part of the central nervous system that controls sleep and wakefulness. Cataplexy and sleep paralysis are similar to the loss of muscle tone that accompanies normal dreaming in a stage of sleep called REM. In people with narcolepsy, however, these events (the lack of muscle tone and dream experiences) occur at inappropriate times.

How is narcolepsy diagnosed?
The first steep in the diagnosis of this disorder should be an evaluation by a healthcare provider to make sure that a medical illness is not the cause. For many, the next step is a visit to a sleep specialist. At the sleep disorders center, the specialist will thoroughly review the person's medical history and perform a complete physical examination. If the specialist suspects narcolepsy, the patient may be asked to undergo testing at the sleep center.

How is narcolepsy treated?
Although narcolepsy cannot yet be cured, its symptoms can usually be controlled or improved so that sufferers experience symptoms less frequently and lead fairly normal lives. Because the array of symptoms is different in each person, the patient and sleep specialist must work together to plan a course of treatment. A treatment plan can have several important parts: medication, behavior treatment, and management of the patient's environment.

Medication: Over-the-counter medications containing caffeine usually do not work well in narcolepsy. However, prescription medications are available and can be effective in controlling excessive daytime sleepiness, cataplexy, hallucinations, and sleep disruptions.
Behavior Treatment: Treatment for narcolepsy often requires not only medication, but also adjustments in lifestyle. The following suggestions can bring substantial improvement for some narcoleptics.
-Follow a regular sleep/wake schedule.
-Take short naps once or twice each day as needed.
-Be cautious during activities that can be dangerous, such as driving or cooking, try to plan your schedule so that you will be alert at these times.
-Carefully follow the healthcare provider's instructions regarding medications.
Management of the Environment: Narcolepsy can be difficult to manage if the patient's family, acquaintances, and co-workers do not understand the disorder. Daytime sleepiness may be mistaken for laziness, depression, or lack of ability. The signs of cataplexy and dreaming during wakefulness may be mistakenly seen as a psychiatric problem. People with narcolepsy, together with their doctors and counselors, can do the following:
-Educate the family members
-Let friends know about the disorder
-Educate employers about the disorder
-Find a narcolepsy support group
-If narcolepsy interferes with the ability to work, look into financial benefits that may be available
-If the person suffering from narcolepsy is a child, make sure his or her teachers know about the disorder.

When to see a healthcare provider
If the symptoms are affecting the person's ability to drive, hold a job, stay in school, perform normal daily activities, or if the symptoms are interfering with social activities and personal relationships, a visit with a healthcare provider is in order.

Further Reading

-Some Must Watch While Some Must Sleep by William C. Dement, MD, PhD (New York: Norton, 1978)
-Solve Your Child's Sleep Problems by Richard Ferber, MD (New York: Simon and Schuster, 1985)
-The American Medical Association Guide to Better Sleep by Lynne Lamberg (New York: Random House, 1984)
-The Encyclopedia of Sleep and Sleep Disorders by Michael J. Thorpy, MD, and Jan Yager (New York: Facts on File, 1991)
-Narcolepsy Primer by Meeta Goswami, MPH, PhD, and Michael J. Thorpy, MD (Bronx, NY: Montefiore Medical Center, 1991)
-Sleep Disorders: America's Hidden Nightmare by Roger Fritz, PhD (Grawn, MI: Publishers Distribution Service, 1993)
-Narcolepsy. A Funny Disorder That's No Laughing Matter by Marguerite J. Utley (DeSoto, TX, 1995)






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