See also…
Sleep Disorders
What
is narcolepsy?
Narcolepsy
is a chronic, or long-lasting, sleep disorder with no known
cause. It affects the body's central nervous system, which
is made up of nerves that carry messages from the brain to
other parts of the body. When a person has narcolepsy, messages
about when to sleep and when to be awake can get mixed up.
This can cause a person to fall asleep when they do not want
to, and often without any warning like feeling drowsy.
The
desire to sleep can be overwhelming and hard to resist, and
can happen to a person several times during the day. Night
sleep may also be poor, broken up by waking up often during
the night. If not controlled with medication, narcolepsy can
cause serious problems in a person's personal, social, and
work life. It can also limit a person's activities, such as
driving a car, work, and exercising. Studies indicate that
narcolepsy may run in families.
What
are the symptoms of narcolepsy?
While it can happen at any age, symptoms of narcolepsy most
often begin between the ages of 15 and 30. The main symptoms
are cataplexy and being extremely sleepy during the day, even
after a good night's sleep. There are other symptoms of narcolepsy,
listed below, which may not occur in all people. These symptoms
often come and go. But being very sleepy during the day is
a symptom that can be chronic, or long lasting. Other symptoms
include waking up during the night, tossing and turning in
bed, leg jerks, and nightmares.
Cataplexy
-
sudden loss of muscle control, ranging from slight weakness
(such as limpness at the neck or knees, sagging facial muscles,
or slurred speech) to complete body collapse. Attacks can
be triggered by sudden and strong emotions such as laughter,
anger, or fear. Attacks can last from a few seconds to several
minutes.
Sleep
paralysis - not being able to talk or move when falling
asleep or waking up. This is temporary and may last from a
few seconds to several minutes.
Hypnagogic
hallucinations - seeing things that are not there. These
images can seem very vivid and dreamlike and sometimes scary.
They happen when a person is dozing or falling asleep.
Automatic
behavior - doing tasks that are familiar, routine, or
boring without knowing that you are doing them. Like getting
to work with no memory of actually driving there.
Should
I worry about getting narcolepsy?
Some
200,000 Americans are thought to have narcolepsy. It is sometimes
mistaken for depression, epilepsy, or the side effects of
medications. You should be checked by a sleep medicine specialist
for narcolepsy if:
You
often feel extremely sleepy during the day, even after having
had a full night's sleep.
You
fall asleep when you do not want to, such as while having
dinner, talking, driving, or working.
You
collapse suddenly or your neck muscles feel too weak to hold
up your head when you laugh or become angry, surprised, or
shocked.
You
are not able to talk or move for a short period of time when
falling asleep or waking up.
How
is narcolepsy diagnosed?
After
having a complete medical history and physical exam, a person's
doctor may order further tests. It is important to see a sleep
medicine specialist at a sleep center for evaluation, since
narcolepsy can be hard to diagnose and treat effectively.
It can be mistaken for other conditions like depression and
epilepsy, or the side effects of medications.
Two
common tests for narcolepsy are:
Polysomnogram
- records brain activity and body movements during nighttime
sleep, along with nerve and muscle function. This test is
done in an overnight sleep lab.
Multiple
Sleep Latency Test - a person is given a chance to sleep
every two hours during the day, when they are normally awake.
This test measures the time it takes to fall asleep and the
time it takes to go into rapid eye movement (REM) sleep (dreaming).
How
is narcolepsy treated?
There
is no cure for narcolepsy. It is a life-long condition, but
there is help for a person with this condition to have a good
and productive life. Symptoms can be controlled with medicine
and lifestyle changes. The extreme daytime sleepiness can
be treated with stimulant drugs (or drugs that keep you awake)
such as modafinil (Provigil). Caffeine and over-the-counter
stimulants do not work to reduce daytime sleepiness. Antidepressants
are sometimes used to treat cataplexy, hypnagogic hallucinations,
and sleep paralysis.
People
with narcolepsy who have other health conditions, such as
high blood pressure, diabetes, or heart disease, should talk
with their doctor about other medicines they are taking. Some
over-the-counter and prescription drugs may interact with
those drugs taken for narcolepsy.
Changes
in lifestyle can help to treat and control narcolepsy. Taking
daytime naps and developing good sleep habits are important.
Taking short naps (10 to 15 minutes) 2 to 3 times a day can
help control extreme daytime sleepiness and sleep attacks.
Having good sleep habits helps a person to get good quality
nighttime sleep. What helps is to: not have caffeine or alcohol
and not smoke in the late afternoon or evening; get regular
exercise, but don't exercise up to 3 hours before you go to
bed; don't use your bed for anything but sleeping; and get
enough sleep (around 8 hours) every night.
If
you have narcolepsy, it is important to talk on a regular
basis with your health care provider. This will help you to
get the best treatment possible for your symptoms.
What can
I do to cope with narcolepsy?
You
can manage your condition so you can enjoy life the way you
want to. Ways to manage narcolepsy include:
Learn
as much as you can about narcolepsy and your symptoms, including
knowing what causes you to have cataplexy. This can help you
make changes in your daily routine to better cope with whatever
symptoms you are having and avoid physical injury.
Talk
with your health care provider often. Tell her or him about
any changes in your symptoms or what you are experiencing
in daily life. Let her or him know about any side effects
you may be having from medications you are taking for narcolepsy
or other conditions.
Join
a support group of individuals who are going through the same
things you are. You can learn a lot about how others cope
with similar symptoms and get emotional support.
Build
a support system. This can include a support group, as well
as your family, friends, employer, and teachers. Talk with
them about your condition and what they can do to help you
manage it. This will help them to avoid wrong thinking that
you may be lazy, hostile, unmotivated, or not interested.
Talk with an employer or teacher about being able to plan
naps during the workday.
Don't
forget to schedule regular nap times during the day, exercise
regularly, and make sure you get enough sleep (around 8 hours)
every night.
Talk
to a counselor or mental health provider who works with people
with disabilities. Counseling can help you to better cope
with personal, family, and work-related issues.
Avoid
jobs that require driving long distances or handling hazardous
equipment, or that need you to be alert for long times.
For more information...
You can find out more about sleep and sleep disorders by contacting
the National Women's Health Information Center at (800) 994-9662
or the following organizations:
National Center on Sleep Disorders Research
(NCSDR) (NHLBI)
Phone Number(s): (301) 435-0199
Internet Address: http://www.nhlbi.nih.gov/sleep
National Heart, Lung, and Blood Institute
Phone Number(s): (301) 592-8573
Internet Address: http://www.nhlbi.nih.gov/index.htm
American Academy of Sleep Medicine
Phone Number(s): (708) 492-0930
Internet Address: http://www.aasmnet.org
Narcolepsy Network, Inc.
Phone Number(s): (513) 891-3522
Internet Address: http://www.narcolepsynetwork.org
National Sleep Foundation
Phone Number(s): (202) 347-3471
Internet Address: http://www.sleepfoundation.org
This information was abstracted from prepared
by the National Heart, Lung, and Blood Institute.
All material contained in the FAQ is free of
copyright restrictions, and may be copied, reproduced, or
duplicated without permission of the Office on Women's Health
in the Department of Health and Human Services; citation of
the sources is appreciated.
