| What is narcolepsy? What are the symptoms of narcolepsy? How are these symptoms all related to narcolepsy? |
Is cataplexy
dangerous?
How is a diagnosis of narcolepsy determined? What research is being conducted?* What are the long-term problems of narcolepsy? *See News On Narcolepsy and Research for info on research conducted since the printing of these FAQs. |
Answer: Narcolepsy is a neurological sleep disorder that can begin at any age and continues throughout life. It frequently becomes noticeable during the teens or early twenties, but it can also appear later in life. Predisposition to it seems to be hereditary. It is believed to affect approximately 1:1000 people of both sexes and all races. It is not degenerative; people with narcolepsy can expect to live a normal life span.
Question: What are the symptoms?
Answer: There are four primary symptoms: Excessive Daytime Sleepiness (EDS) includes daytime sleep attacks, which may occur with or without warning (and for many are irresistible); persistent drowsiness, which may continue for prolonged periods of time; and "microsleeps," or fleeting moments of sleep intruding into the waking state. Cataplexy (the other hallmark symptom of narcolepsy) is a sudden loss of voluntary muscle control, usually triggered by emotions such as laughter, surprise, fear or anger. It occurs more frequently during times of stress or fatigue. The cataplectic attack may involve only a slight feeling of weakness and limp muscles (such as sagging facial muscles, a nodding head, buckling knees, loss of arm strength, garbled speech); but it may also result in immediate total body collapse, during which the person may appear unconscious, but remains awake and alert. These attacks may last from a few seconds up to thirty minutes. The two other symptoms are hypnagogic hallucinations - vivid, realistic, often frightening dreams; and sleep paralysis, or a temporary inability to move. Either one of these can occur during the process of going to sleep or waking up, while the brain is partially asleep and partially awake.
Question: Are there other symptoms?
Answer: The following secondary or auxiliary symptoms may appear: Automatic behavior, the performance of a routine task, without conscious awareness of doing it, and often without later memory of it; Disrupted nighttime sleep, involving multiple arousals. Other difficulties may be caused by the primary symptoms, appear as side effects of medication, or result from one's continuing struggle to cope. Feelings of intense fatigue and continual lack of energy are often reported, and depression is also common. The ability to concentrate and memorize may become more difficult. Vision (focusing) problems, eating "binges," weak limbs, and difficulties in handling alcohol may also occur.
Question: How are these symptoms all related to narcolepsy?
Answer: Narcolepsy is related to REM (rapid eye movement) sleep, the dreaming portion of sleep. As a protection against acting out dreams, the muscles become immobile or "paralyzed." For the normal person, a sleep period first progresses for about 90 minutes of non-REM sleep and then REM sleep begins. But for a person with narcolepsy, sleep begins almost immediately with REM sleep. Since the brain may not be totally asleep when dreaming begins, the dream is sometimes experienced far more vividly and is thought of as an hallucination. After waking, REM periods, or fragments of them, occur inappropriately throughout the day. This explains excessive daytime sleepiness. Cataplexy is related to the muscle "paralysis" of REM. When automatic behavior occurs, sleep has partially overtaken the brain, but the body continues to perform familiar tasks.
Question: Is narcolepsy a psychological or mental disorder?
Answer: No. Narcolepsy is a neurological disorder with an unknown physical cause. Nevertheless, psychological problems can develop from misunderstanding of and difficulty in coping with the symptoms. A very difficult fact for one with narcolepsy and those around him or her to understand is that sleepiness and sleep attacks are uncontrollable. Failure to accept this may seriously influence self-esteem or personal relationships. Health care counseling for persons and families with narcolepsy can help alleviate these secondary problems. And educating the public, especially school, health, and human resource personnel can help lessen or prevent many other problems.
Question: Does narcolepsy affect learning?
Answer: Although narcolepsy does not directly affect one's intelligence, learning and education cannot help but be affected by the symptoms. Study, concentration, memory, and attention span may be periodically impaired by sleep. Children with narcolepsy should be identified at the earliest possible age, to avoid lowered self-esteem and a pattern of failure. Adjustments in learning habits may be continually necessary. This can only be accomplished with the cooperation of school personnel.
Question: Is cataplexy dangerous?
Answer: Mild cataplexy, while perhaps embarrassing, is not dangerous. One can often find support for weakened head, neck, or arm muscles, so that others may not even be aware of the momentary loss of control. However, severe cataplexy, resulting in immediate and sudden body collapse, can be dangerous. Companions should be told in advance what to expect and how to help. They should always check for the person's safety and comfort, immediately relieving any unnatural bending of limbs or unusual body positions, assuring complete relaxation, and then allowing him or her to recover spontaneously. Cataplexy for others can be so instantaneous that there is no time to prepare for safety and serious injury can occur. Some deaths and near-deaths have been reported. Obviously, potentially life threatening situations should be avoided unless cataplexy is controlled.
Question: How is a diagnosis of narcolepsy determined?
Answer: Excessive daytime sleepiness (EDS) is often the first symptom to appear; and, for some, the only symptom of narcolepsy. However, it is also a symptom of various other medical conditions. Cataplexy, on the other hand, is almost unique to narcolepsy. The combination of EDS and cataplexy allow clinical diagnosis of narcolepsy. However, laboratory tests are still needed both to confirm diagnosis and plan treatment. The usual procedure is an overnight polysomnogram (PSG), to determine the presence of EDS and perhaps other underlying causes of this symptom. This is followed by the Multiple Sleep Latency Test (MSLT) which measures sleep onset and how quickly REM sleep occurs. The MSLT is the most widely accepted diagnostic test for narcolepsy. Finally, a genetic blood test has been developed which measures certain antigens often found in people who have a predisposition to narcolepsy. Positive results suggest (but do not prove) narcolepsy. This test is sometimes used when the diagnosis is in question.
Question: How is narcolepsy treated?
Answer: The goal of treatment should be to keep the patient as alert as possible during the day and to minimize any recurring episodes of cataplexy, using a minimal amount of medication. Excessive daytime sleepiness (EDS) is treated separately from cataplexy, hypnogogic hallucinations and sleep paralysis. Traditionally, central nervous system stimulants, such as Ritalin and Dexedrine, have been prescribed for EDS. In early 1999, modafinil (Provigil) was approved by the FDA, making it the first new, nonamphetamine, wake-promoting drug indicated to treat EDS associated with narcolepsy.
Cataplexy and other primary symptoms are usually treated with tricyclic antidepressants and serotinin reuptake inhibitors. A new medication known as Xyrem (gamma-hydroxybutyrate) continues to be studied in clinical trials at numerous sleep disorder locations under FDA sponsorship. Preliminary results after several years suggest that Xyrem is safe and effective in the treatment of cataplexy, hypnagogic hallucinations, and sleep paralysis. If these results remain positive, we hope that Xyrem will receive final FDA approval within a couple of years. In addition to drug therapy, nap therapy (2-3 short naps during the day) helps to control sleepiness and maintain alertness. Proper diet and regular exercise are always helpful. Finally, some individuals report benefits from "alternative remedies" such as herbs, phosphates, and acupuncture. Regardless of the type of treatment you select, continuing doctor-patient communication is recommended to successfully manage symptoms. Educating one's family and friends about narcolepsy is equally important, as is contact with a support group of others who have or who are familiar with narcolepsy.
Question: What research is being conducted?
Answer: Sleep scientists, at present, are focusing on genetics, neurotransmitters, and the autoimmune system. Researchers also believe that other factors (such as viral and bacterial agents, abrupt changes in wake-sleep cycles, illness, accidents, stress, drug usage and even hormonal changes) may act as "triggers" and determine whether or not someone with a genetic predisposition to narcolepsy will develop the disorder.
Question: What are the long-term problems of narcolepsy?
Answer: The consequences of narcolepsy may be many and far-reaching. Sleep attacks and cataplexy in public are embarrassing and can cause serious social and economic difficulties. Cataplexy may interfere with physical activities, and cause efforts to avoid emotions, which may lead to social withdrawal. Inability to work and/or drive may result in loss of independence, financial difficulties and a multitude of other problems. In these situations, a person can easily lose touch with others and become depressed.
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