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Narcolepsy ­ The MetroHealth System
Narcolepsy
1. What is Narcolepsy?
2. What Causes Narcolepsy?
3. What are the Effects of Narcolepsy?
4. Who is at Risk for Narcolepsy?
5. What are the Symptoms of Narcolepsy?
6. How is Narcolepsy Diagnosed?
7. Do I Need a Sleep Specialist?
8. What is a Sleep Test?
9. How is Narcolepsy Treated?
10. Where Can I Find Support?
What is Narcolepsy?
Narcolepsy (NAR­ko­lep­see) is a disorder that causes a person to have difficulty staying awake. In extreme cases, narcolepsy
can cause a person to suddenly fall asleep during the day. These “sleep attacks” occur even after getting enough sleep at
night. The unusual sleep pattern that people with narcolepsy have can affect school, work, and social life. There are two main
types of sleep:
Non­Rapid Eye Movement (NREM) sleep
Rapid Eye Movement (REM) sleep
During REM sleep, your eyes move rapidly even though your eyelids stay shut. Dreaming mainly happens during REM sleep,
when your body becomes limp and you are unable to move your muscles. This temporary inability to move prevents you from
acting out any dreams that you may be having.
Normally, when people fall asleep they go into NREM sleep for the first 60­90 minutes before going through a period of REM
sleep.
People with narcolepsy have a different sleep pattern. They often fall directly into REM sleep before the usual block of NREM
sleep. In addition, the fine line between being asleep and being awake can be blurred. Narcoleptics often find that certain
aspects of REM sleep can happen while they are awake or during transitions between sleep and wakefulness. This causes
them to:
Suddenly lose muscle tone and muscle control when awake (cataplexy); this can appear to be muscle weakness and
sometimes can trigger the body to collapse
Not be able to move or speak while waking up (sleep paralysis)
Have vivid dreams while falling asleep or waking up (hallucinations)
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What Causes Narcolepsy?
While the cause of narcolepsy is not clearly known, recent research suggests that in many cases there is a link between
narcolepsy symptoms and a lack of the chemical in the brain called hypocretin. This chemical stimulates brain cells and helps
promote wakefulness. It is not known why hypocretin is missing in people who have narcolepsy. One out of 10 people with
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narcolepsy and cataplexy has a close relative with the same symptoms. This suggests that some people may inherit the
tendency to develop narcolepsy. [BACK TO TOP]
What are the Effects of Narcolepsy?
People with narcolepsy often fall asleep without warning at inappropriate times. Sleep attacks don’t just happen during quiet
times but can occur during driving, eating, or other activities and can cause:
Accidents and injuries
Problems at work or at school
Social problems
Impaired memory, thinking, or ability to concentrate
Depression
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Who is at Risk for Narcolepsy?
Narcolepsy may affect more than 150,000 people in the United States. Typically, it first occurs between the ages of 15 and 30
and affects both men and women. The symptoms can start suddenly or appear gradually. The condition is difficult to diagnose
without medical tests. Often people live with mild symptoms, such as daytime sleepiness and muscle weakness, for several
years before narcolepsy is diagnosed. Narcolepsy can also develop later in life or in children, but it is rare before age five.
Factors that may increase the risk of developing narcolepsy include having:
Having a sibling or parent with narcolepsy
Certain thyroid disorders
Diabetes
Having an autoimmune disorder, any type of disease in which the body’s infection­fighting system mistakenly attacks the
body’s own organs and tissues
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What are the Symptoms of Narcolepsy?
Excessive Daytime Sleepiness (EDS)
The major symptom of narcolepsy is excessive daytime sleepiness (EDS) with sleep attacks. All people with narcolepsy have
EDS, which is usually the first symptom of the condition. Patients also may have sudden, irresistible urges to sleep during the
day (sleep attacks). They usually fall asleep for just a few seconds or minutes. Rarely, they may fall asleep for as long as an
hour or more.
Muscle Weakness
Attacks of muscle weakness and tone over parts or all of the body while awake (cataplexy) are sometimes the first symptom of
narcolepsy that is noticed. Usually this symptom occurs weeks or months after people who have narcolepsy first start to
experience excessive sleepiness during the day. Nearly 3 our of 4 (or 75%) of people with narcolepsy experience cataplexy.
Mild attacks of muscle weakness can cause:
Head nodding
Drooping eyelids
Difficulty speaking
Difficulty moving arms or hands or a weakened grip
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Buckling of the knees
Severe attacks of narcolepsy may cause complete paralysis and falls. Attacks often last less than 2 minutes, and they
may only last a few seconds. During both mild and severe attacks, the person stays fully conscious. The sudden attacks of
muscle weakness in narcolepsy can happen at any time.
These attacks are often triggered by strong emotions, including, but not limited to:
Laughter
Anger
Fear
Excitement
Sleep Paralysis
People with narcolepsy may suddenly not be able to move or speak while waking up. They are fully conscious during these
periods of sleep paralysis. The paralysis usually lasts just a few seconds or minutes, but it can be quite scary. Sleep paralysis
is similar to the paralysis that happens in rapid eye movement (REM) sleep. Not all people with narcolepsy have sleep
paralysis.
Hallucinations
Some people with narcolepsy have vivid dreams while they are falling asleep, waking up, or dozing. These hallucinations differ
from normal dreams because they seem very real and include sights, sounds, smells, tastes, and touch. People with
narcolepsy may say these hallucinations are scary like a nightmare. The hallucinations can occur with sleep paralysis.
Difficulty Staying Asleep
Some people with narcolepsy have difficulty staying asleep through the night. These frequent awakenings may start years after
experiencing the first symptoms of narcolepsy.
Automatic Behavior
Another symptom of narcolepsy is to carry out certain actions without awareness. This is called automatic behavior. For
example, if people with this symptom are writing, they may scribble rather than form words. People usually do not remember
such automatic behavior.
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How is Narcolepsy Diagnosed?
Doctors will base a diagnosis of narcolepsy on the patient’s symptoms, family history of narcolepsy, physical exam, and test
results. Specific sleep tests may require the patient to visit a sleep disorders center for an overnight evaluation. [BACK TO TOP]
Do I Need a Sleep Specialist?
If your doctor suspects you have narcolepsy, he or she will likely suggest you see a sleep specialist who may recommend
special sleep tests. Sleep tests should be done at a comprehensive sleep center, like MetroHealth. For some sleep tests, you
may need to sleep overnight at the center. Other sleep tests can be done during the day.
The sleep specialist will confirm a diagnosis of narcolepsy, diagnose another sleep disorder, or rule out a specific sleep disorder
based on:
Your symptoms
Your sleep habits as recorded in a sleep diary
The results of your sleep tests
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What is a Sleep Test?
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What is a Sleep Test?
The three tests most often used to diagnose narcolepsy are Polysomnogram (PSG), Multiple Sleep Latency Test (MSLT), and
Hypocretin test.
Polysomnogram (PSG)
For this study, you sleep overnight at a sleep center. While you are sleeping, the staff at the center uses various devices to
measure your brain activity, breathing, and movements. The signs of narcolepsy this test can reveal include:
Falling asleep quickly
Entering rapid eye movement (REM) sleep soon after falling asleep
Waking up often during the night
Multiple Sleep Latency Test (MSLT)
Multiple Sleep Latency Test (MSLT
This test is usually done during the day after an overnight PSG. Also called a nap study, the MSLT measures how easy it is for
you to fall asleep during the day. You are asked to take short naps about every two hours. The test records eye movements,
muscle tone, and brain activity with small monitors attached to the head. The signs of narcolepsy this test can reveal are
quickly falling asleep during the day (after a full night’s sleep) and entering REM sleep soon after falling asleep.
Hypocretin Test
This test measures the levels of hypocretin in the fluid that bathes your spinal cord. Low levels of hypocretin make it likely that
you have narcolepsy. Currently, this study is used primarily in research settings. [BACK TO TOP]
How is Narcolepsy Treated?
There is no cure for narcolepsy, but many of the symptoms of this disorder can be relieved with medicines and lifestyle
changes. Treatment for narcolepsy is based on the type and severity of symptoms. Some medicines help relieve daytime
sleepiness, while other medicines may help prevent the sudden loss of muscle tone (cataplexy) or vivid dreams while falling
asleep or waking up (hallucinations) that some people with narcolepsy have. Not all medicines work for everyone. It may take
weeks to months for your doctor to find the best treatment for you.
Medicines to Relieve Daytime Sleepiness
Doctors may prescribe stimulants to increase daytime alertness in narcolepsy patients, including:
Modafinil
Methylphenidate
Amphetamines
Medicines to relieve other symptoms
The only currently used FDA­approved treatment for cataplexy is gamma hydroxyl butyrate (or Xyrem). This medication is
taken twice nightly and is carefully regulated. Several different antidepressant medicines have also been used to treat
cataplexy, hallucinations, and sleep paralysis that affects some people with narcolepsy. These medicines affect the chemicals
in the brain that seem to play a role in narcolepsy. People with cataplexy need to check with their doctor to find which treatment
will work best for them.
Lifestyle Changes
If you have narcolepsy, it is important to combine any drug treatments with lifestyle changes that help lessen symptoms. By
taking regular naps during the day when you are feeling the sleepiest, you may need less medicine to treat daytime sleepiness.
You should also try to go to sleep and wake up at the same time each day, and give yourself at least eight hours to sleep each
night.
To make it easier to fall asleep at night, you can:
Do something relaxing before bedtime, such as taking a warm bath.
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Keep your bedroom or sleep area quiet, comfortable, and free of light and distractions, such as a TV or computer.
Exercise regularly, but not within 3 hours of bedtime.
A few hours before bedtime, you should also try to avoid substances that can make it hard to fall or stay asleep. These
substances include:
Caffeine (in coffee, chocolate, and certain soft drinks and teas)
Tobacco
Alcohol
Living With Narcolepsy
Narcolepsy is a lifelong condition. Although there is no cure for this condition, symptoms often improve with ongoing treatment.
Most people with narcolepsy can live near­normal lives. The condition can be dangerous if sleep attacks or sudden loss of
muscle tone occur while driving or using machinery. Even when these episodes occur at other times, they can cause injury or
impair performance in school and on the job. To help avoid harm, try to:
Avoid being alone when you are likely to have a sleep attack
Take a nap before those times during the day when an attack is likely
Safeguard your home and workspace
Seek help from family, friends, coworkers, and your doctor
Take your narcolepsy medicine as recommended
Take special care when driving to help prevent crashes:
Take medicines as prescribed
Ask your doctor if you can drive safely
Plan to drive when you are least likely to have a sleep attack or other narcoleptic symptoms that could be dangerous
Take naps before driving
Stop regularly during a long drive and exercise during the stops
Consider driving with family, friends, or coworkers or getting rides from them
People with narcolepsy can work in almost all types of jobs. It may be best if you have a flexible work schedule so you can
take naps when needed. It also helps to have a job where you interact with your coworkers. Try to avoid jobs that require you to
drive or have long commutes to work. Furthermore, night shift work should be avoided by narcoleptics.
The Americans with Disabilities Act (ADA) protects the employment rights of people who have disabilities, including
narcolepsy. The ADA requires employers to reasonably accommodate the needs of their workers with disabilities.
For workers with narcolepsy, these accommodations may include:
Allowing short naps during the workday
Adjusting work schedules around sleepy periods
Alterations to the workspace or job duties
Workers must tell their employer that they have narcolepsy to get these accommodations.
The Family and Medical Leave Act also covers employers with more than 50 workers. This law allows pre­approved leave
without pay to care for yourself or a family member with narcolepsy. The Social Security Disability Insurance or Supplemental
Security Income programs may also help you if you cannot work due to your narcolepsy.
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Where Can I Find Support?
Sudden sleep attacks or loss of muscle tone can be embarrassing. This can make you avoid getting together with friends,
schoolmates, or fellow workers, and it can cause low self­esteem. People with narcolepsy may also feel they have no control
over their behavior and may become depressed. To get emotional support for narcolepsy, you can:
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Work with your doctor to better manage your symptoms and emotional problems if you have any
Change your lifestyle to minimize symptoms
Learn about narcolepsy, and tell your family and friends about the condition
Seek professional counseling for you and your family
Get involved with patient support groups such as the Narcolepsy Network (http://www.narcolepsynetwork.org/)
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