Narcolepsy 

What is 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. Narcolepsy can be defined as excessive drowsiness during the day with a tendency to sleep at inappropriate times.

What causes Narcolepsy?  Although the exact cause is not known, narcolepsy is suspected to be a central nervous system defect. It is not caused by psychiatric or psychological problems. 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 offspring of a narcoleptic parent appears to have about a
one-in-twenty chance of being afflicted with narcolepsy. However, many people with narcolepsy do not have relatives who are affected.

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.

What are the Symptoms of 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)
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 (driving, or writing a letter). People with narcolepsy may become drowsy or feel
foggy at very unusual times or when drowsiness is dangerous.

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. 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.

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.

How is Narcolepsy Diagnosed? Narcolepsy should be diagnosed by a sleep specialist. In addition to case history, a patient may be asked to undergo overnight tests in a sleep clinic and/or "nap tests" (Multiple Sleep Latency Tests).

 
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.

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. Go to bed and get up at approximately the same time each day.

*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. Immediately inform him or her of any changes or problems with medications.

Management of the Environment
People with narcolepsy, together with their doctors and counselors, can let family members, employers, and friends know about the disorder and give them this booklet to read. Making certain accommodations at work can help a narcolepsy sufferer continue to be a productive employee.

If the person suffering from narcolepsy is a child, make sure his or her teachers know about the disorder. Small adjustments in the classroom can make a tremendous difference in terms of the child's self-esteem and ability to obtain a good education.