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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)