NARCOLEPSY

is a serious, lifelong, potentially disabling disorder estimated to afflict one of every 1000 people (27,000 Canadians), most of whom are undiagnosed! Narcolepsy can strike anyone at any age although symptoms are usually first noticed during the early teen years. There is no known cure for narcolepsy, and no completely adequate treatment is available. The cause of narcolepsy is suspected to be a central nervous system defect, as yet unidentified. There is no evidence of a psychological cause. There is evidence that narcolepsy (or predisposition to develop narcolepsy) may be an inherited characteristic which can be passed from an afflicted parent to the children, and/or to the grandchildren, great-grandchildren, etc. The first generation of off-spring of a narcoleptic parent appears to have about a one-in-twenty chance of being afflicted with narcolepsy. Different individuals experience wide variations in both the development and the severity of the symptoms of narcolepsy. The symptoms usually appear independently of one another (sometimes years apart). In addition, the sequence in which symptoms appear is not uniform. Typically, the symptoms are rather mild at the start, increasing in severity at a gradual rate over a period of years. Sometimes no change in severity can be perceived for months or years; at other times, a change may occur very rapidly. Excessive Daytime Sleepiness (EDS) and cataplexy are the two most dangerous symptoms of narcolepsy. Either can become so severe as to completely disable. The other symptoms usually do not cause such serious problems, appear less frequently than the primary symptoms, and are often experienced by otherwise normal individuals.

WHAT PROBLEMS DO THOSE WITH NARCOLEPSY FACE ? There are many. Because the disorder is not yet widely recognized, many people go through long and difficult times before it is even diagnosed. Consequently, family, friends, educators and employers find it difficult to understand the whole problem. Even those with narcolepsy themselves have difficulty in understanding all of the facets of the disorder — just what is happening to them. People with narcolepsy are often perceived as lazy, and they may come to believe it. The result is low self-esteem, alienation from families, and immense problems in social, school and employment situations. Note: Narcolepsy should be diagnosed by a sleep disorders specialist. In addition to a case history, a patient may be asked to undergo overnight tests in a sleep lab and/or "nap tests" (Multiple Sleep Latency Tests).

TREATMENT? YES! A CURE? NO! The symptoms of narcolepsy can be controlled with the help of medication. Strategies for coping with daily problems of staying awake can be learned, and through better understanding of the disorder, the person with narcolepsy can continue to function in society. Funds for research are needed to advance further understanding of this condition by medical science, and to bring about more satisfactory and effective methods of treatment and management.

SLEEP /WAKE DISORDERS C ANADA Sleep/Wake Disorders Canada, is a national voluntary organization dedicated to helping people suffering from sleep/wake disorders by distributing information, encouraging research, establishing local self-help groups, and acting as an advocate when necessary. SWDC is a registered charity for income tax purposes. For more information, contact:

S LEEP/WAKE DISORDERS CANADA 3080 Yonge Street, Suite 5055 Toronto, Ontario M4N 3NJ Tel: (416) 483-9654 Fax: (416) 483-7081

(reformatted from 1997 version)

THE SYMPTOMS OF NARCOLEPSY

SLEEP PARALYSIS refers to an awareness of one's

E XCESSIVE DAYTIME SLEEPINESS (EDS)

inability to move despite the desire to do so. It occurs as a person is falling asleep or waking up. If it occurs in conjunction with a frightening hypnagogic hallucination, it can add to the terror of the experience.

is usually the first symptom noted. It is sometimes expressed as sleepiness, tiredness, lack of energy, sleep attacks, irresistible sleepiness, and/or unusual susceptibility to becoming sleepy or falling asleep. Although this pathological sleepiness is present every day, the intensity varies throughout each day, and the afflicted individual may only be troubled by, or even aware of, the more severe episodes. Total sleep time per 24 hours is usually within the normal range; it is the continuous susceptibility to sleepiness or falling asleep, and the circumstances under which these occur, that is unusual. The individual suffering from narcolepsy has as much difficulty resisting sleepiness or failing asleep as do normal individuals deprived of the amount of sleep they need. Unfortunately, the person with narcolepsy still has this problem, regardless of the number of hours he or she sleeps. EDS becomes most obvious when, as is often the case, the person becomes sleepy or fails asleep at inappropriate times, e.g. in the middle of a conversation, while sitting in a class, attending a business meeting, or eating a meal.

CATAPLEXY is a rapidly occurring loss of voluntary muscle tone usually triggered by emotions such as those associated with laughter, anger, elation, or surprise. A "cataplectic attack" can range from a brief experience of partial muscle weakness to an almost complete loss of muscle control. It can last for up to several minutes. Some cataplectic attacks entail a total physical collapse, during which the victim is unable to move or speak, although he or she is still conscious and at least partially aware of what is happening.

H YPNAGOGIC H ALLUCINATIONS are intense, vivid experiences which occur at the beginning or end of a sleep period. Any or all of the normal senses may be involved, and the experience is frequently extremely difficult to distinguish from reality. Hypnagogic hallucinations are sometimes quite terrifying.

NARCOLEPSY: the facts

AUTOMATIC BEHAVIOUR refers to doing things (usually of a somewhat routine nature) with greatly reduced awareness of, and reduced control over, the activities involved. Generally, one is unable to recall the specific details of activities and one usually regards the periods of time involved as a "blackout".

DISRUPTED NIGHTTIME SLEEP refers to multiple awakenings which occur during each sleep period. The cause may be frightening dreams, the need to relieve one's bladder, and/or temporary suspensions of breathing (see Sleep Apnea, below). Awakenings sometimes occur with no known cause. Often, awakenings are accompanied by a craving for something to eat (especially sweets), and mid-night raids on the refrigerator are common.

SLEEP APNEA is not a symptom of narcolepsy. However, it is experienced more frequently by those who are also afflicted with narcolepsy than by other members of the general population. Sleep apnea involves frequent cessations of breathing during each sleep period. Usually, loud snoring accompanies each resumption of breathing. While asleep, the sufferer is not aware of any breathing irregularities and, while awake, respiration is completely normal.

SLEEP/WAKE DISORDERS CANADA