Narcolepsy

What is narcolepsy?
Narcolepsy (NAR-ko-lep-se) is a disorder that causes periods of extreme daytime sleepiness. This disorder also may cause muscle weakness.

Most people who have narcolepsy have trouble sleeping at night. Some people who have the disorder fall asleep suddenly, even if they're in the middle of talking, eating, or another activity.

Narcolepsy also can cause:
• Cataplexy (KAT-a-plek-se). This condition causes a sudden loss of muscle tone while you're awake. Muscle weakness can affect certain parts of your body or in your whole body. For example, if cataplexy affects your hand, you may drop what you're holding. Strong emotions often trigger this weakness. It may last seconds or minutes.
• Hallucinations (ha-lu-sih-NA-shuns). These vivid dreams occur while falling asleep or waking up.
• Sleep paralysis (pah-RAL-ih-sis). This condition prevents you from moving or speaking while waking up and sometimes while falling asleep. Sleep paralysis usually goes away within a few minutes.

Overview. The two main phases of sleep are nonrapid eye movement (NREM) and rapid eye movement (REM). Most people are in the NREM phase when they first fall asleep. After about 90 minutes of sleep, most people go from NREM to REM sleep.

Dreaming occurs during the REM phase of sleep. During REM, your muscles normally become limp. This prevents you from acting out your dreams. (For more information about sleep cycles, go to the National Heart, Lung, and Blood Institute's "Your Guide to Healthy Sleep.")

People who have narcolepsy often fall into REM sleep quickly and wake up directly from it. As a result, they may have vivid dreams while falling asleep and waking up.

Hypocretin (hi-po-KREET-in), a chemical in the brain, helps promote wakefulness. Most people who have narcolepsy have low levels of this chemical. What causes these low levels isn't well understood.

Researchers think that certain factors may work together to cause a lack of hypocretin. These factors may include heredity, infections, brain injuries, and autoimmune disorders. (Autoimmune disorders occur if the body's immune system mistakenly attacks the body's cells and tissues.)

Outlook. Narcolepsy symptoms usually begin during the teen or young adult years. People who have narcolepsy may find it hard to function at school, work, home, and in social situations because of extreme tiredness.

Narcolepsy has no cure, but medicines, lifestyle changes, and other therapies can improve symptoms. Research is ongoing on the causes of narcolepsy and new ways to treat it.

Effects of narcolepsy
People with narcolepsy often fall asleep without warning at inappropriate times. Sleep attacks don’t just happen during quiet times, such as when reading or watching TV. These attacks 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

What causes narcolepsy?
Most people who have narcolepsy have low levels of hypocretin. This is a chemical in the brain that helps promote wakefulness. What causes these low hypocretin levels isn't well understood.

Researchers think that certain factors may work together to cause a lack of hypocretin. These factors may include:

• Heredity. Some people may inherit a gene that affects hypocretin. Up to 10 percent of people who have narcolepsy report having a relative who has the same symptoms.
• Infections.
• Brain injuries caused by conditions such as brain tumors, strokes, or trauma (for example, car accidents or military-related wounds).
• Autoimmune disorders. With these disorders, the body's immune system mistakenly attacks the body's cells and tissues. An example of an autoimmune disorder is rheumatoid arthritis.
• Low levels of histamine, a substance in the blood that promotes wakefulness.

Some research suggests that environmental toxins may play a role in triggering narcolepsy. Toxins may include heavy metals, pesticides and weed killers, and secondhand smoke.

Heredity alone doesn't cause narcolepsy. You also must have at least one other factor, such as one of those listed above, to develop narcolepsy.

Who is at risk for narcolepsy?
Narcolepsy affects men and women. Symptoms usually begin during the teen or young adult years. The disorder also can develop later in life or in children, but it's rare before age 5.

Researchers think that certain factors may work together to cause narcolepsy. If these factors affect you, you may be at higher risk for the disorder. (For more information, go to "What causes narcolepsy?")

What are the signs and symptoms of narcolepsy?
The four major signs and symptoms of narcolepsy are extreme daytime sleepiness, cataplexy (muscle weakness) while awake, and hallucinations and sleep paralysis during sleep.

If you have narcolepsy, you may have one or more of these symptoms. They can range from mild to severe. Less than one-third of people who have narcolepsy have all four symptoms.

Extreme daytime sleepiness. All people who have narcolepsy have extreme daytime sleepiness. This often is the most obvious symptom of the disorder.

During the day, you may have few or many periods of sleepiness. Each period usually lasts 30 minutes or less. Strong emotions—such as anger, fear, laughter, or excitement—can trigger this sleepiness.

People who have daytime sleepiness often complain of:
• Mental cloudiness or “fog”
• Memory problems or problems focusing
• Lack of energy or E\extreme exhaustion
• Depression

Some people who have narcolepsy have episodes in which they fall asleep suddenly. This is more likely to happen when they're not active—for example, while reading, watching TV, or sitting in a meeting.

However, sleep episodes also may occur in the middle of talking, eating, or another activity. Cataplexy also may occur at the same time.

Cataplexy. This condition causes loss of muscle tone while you're awake. Muscle weakness affects part or all of your body. Cataplexy may make your head nod or make it hard for you to speak. Muscle weakness also may make your knees weak or cause you to drop things you're holding. Some people lose all muscle control and fall.

Strong emotions, such as anger, surprise, fear, or laughter, often trigger cataplexy. It usually lasts a few seconds or minutes. During this time, you're usually awake.

Cataplexy may occur weeks to years after you first start to have extreme daytime sleepiness.

Hallucinations. If you have narcolepsy, you may have vivid dreams while falling asleep, waking up, or dozing. These dreams can feel very real. You may feel like you can see, hear, smell, and taste things.

Sleep paralysis. This condition prevents you from moving or speaking while falling asleep or waking up. However, you're fully conscious (aware) during this time. Sleep paralysis usually lasts just a few seconds or minutes, but it can be scary.

Other symptoms. Most people who have narcolepsy also don't sleep well at night. They may have trouble falling and staying asleep. Vivid, scary dreams may disturb sleep. Not sleeping well at night worsens daytime sleepiness.

Rarely, people who fall asleep in the middle of an activity, such as eating, may continue that activity for a few seconds or minutes. This is called automatic behavior. During automatic behavior, you're not aware of your actions, so you don't perform them well. For example, if you're writing before falling asleep, you may scribble rather than form words. If you're driving, you may get lost or have an accident. Most people who have this symptom don't remember what happened while it was going on.

Children who have narcolepsy often have trouble studying, focusing, and remembering things. Also, they may seem hyperactive. Some children who have narcolepsy speed up their activities rather than slow them down.

Children who have narcolepsy may have severe sleepiness. They may fall asleep while talking or eating, or during sporting events and social activities.

How is narcolepsy diagnosed?
It can take as long as 10 to 15 years after the first symptoms appear before narcolepsy is recognized and diagnosed. This is because narcolepsy is fairly rare. Also, many of the symptoms of narcolepsy are like symptoms of other illnesses, such as infections, depression, and sleep disorders.

Narcolepsy is sometimes mistaken for learning problems, seizure disorders, or laziness, especially in school-aged children and teens. When narcolepsy symptoms are mild, it's even harder to diagnose.

Your doctor will diagnose narcolepsy based on your signs and symptoms, your medical and family histories, a physical exam, and test results.

Signs and symptoms. Tell your doctor about any signs and symptoms of narcolepsy that you have. This is important because your doctor may not ask about them during a routine checkup.

Your doctor will want to know when you first had signs and symptoms and whether they bother your sleep or daily routine. He or she also will want to know about your sleep habits and how you feel and act during the day.

To help answer these questions, you may want to keep a sleep diary for a few weeks. Keep a daily record of how easy it is to fall and stay asleep, how much sleep you get at night, and how alert you feel during the day.

Medical and family histories. Your doctor may ask whether:
• You're affected by certain factors that can lead to narcolepsy. Examples of these factors include infections, brain injuries, and autoimmune disorders. Some research suggests that environmental toxins may play a role in triggering narcolepsy.
• You take medicines and which ones you take. Some medicines can cause daytime sleepiness. Thus, your symptoms may be due to medicine, not narcolepsy.
• You have symptoms of other sleep disorders that cause daytime sleepiness.
• You have relatives who have narcolepsy or who have signs or symptoms of the disorder.

Physical exam. Your doctor will examine you to see whether another condition is causing your symptoms. For example, infections, certain thyroid diseases, drug and alcohol use, and other medical or sleep disorders may cause symptoms similar to those of narcolepsy.

Diagnostic tests:
Sleep studies.
If your doctor thinks you have narcolepsy, he or she will likely suggest that you see a sleep specialist. This specialist may advise you to have special sleep studies to find out more about your condition.

Sleep studies usually are done at a sleep center. Doctors use the results from two tests to diagnose narcolepsy. These tests are a polysomnogram (PSG) and a multiple sleep latency test (MSLT).

Polysomnogram. You usually stay overnight at a sleep center for a PSG. The test records brain activity, eye movements, breathing, heart rate, and blood pressure. A PSG can help find out whether you:
• Fall asleep quickly
• Go into rapid eye movement (REM) sleep soon after falling asleep
• Wake up often during the night

Multiple sleep latency test. This daytime sleep study measures how sleepy you are. It's often done the day after a PSG. During the test, you're asked to nap for 20 minutes every 2 hours throughout the day. (You will nap a total of four or five times.)

A technician checks your brain activity during this time. He or she notes how quickly you fall asleep and how long it takes you to reach various stages of sleep.

An MSLT finds out how quickly you fall asleep during the day (after a full night's sleep). It also shows whether you go into REM sleep soon after falling asleep.

Other tests:
Hypocretin test.
This test measures the level of hypocretin in the fluid that surrounds your spinal cord. Most people who have narcolepsy have low levels of hypocretin. Hypocretin is a chemical that helps promote wakefulness.

To get a sample of spinal cord fluid, a spinal tap (also called a lumbar puncture) is done. For this procedure, your doctor inserts a needle into your lower back area and then withdraws a sample of your spinal fluid.

How is narcolepsy treated?
Narcolepsy has no cure. However, medicines, lifestyle changes, and other therapies can relieve many of its symptoms. Treatment for narcolepsy is based on the type of symptoms you have and how severe they are.

Not all medicines and lifestyle changes work for everyone. It may take weeks to months for you and your doctor to find the best treatment.

Medicines. You may need one or more medicines to treat narcolepsy symptoms. These may include:

• Stimulants to ease daytime sleepiness and raise your alertness.
• A medicine that helps make up for the low levels of hypocretin in your brain. (Hypocretin is a chemical that helps promote wakefulness.) This medicine helps you stay awake during the day and sleep at night. It doesn't always completely relieve daytime sleepiness, so your doctor may tell you to take it with a stimulant.
• Medicines that help you sleep at night.
• Medicines used to treat depression. These medicines also help prevent cataplexy, hallucinations, and sleep paralysis.

Some prescription and over-the-counter medicines can interfere with your sleep. Ask your doctor about these medicines and how to avoid them, if possible. For example, your doctor may advise you to avoid antihistamines. These medicines suppress the action of histamine, a substance in the blood that promotes wakefulness.

If you take regular naps when you feel sleepy, you may need less medicine to stay awake.

Lifestyle changes. Lifestyle changes also may help relieve some narcolepsy symptoms. You can take steps to make it easier to fall asleep at night and stay asleep.

• Follow a regular sleep schedule. Go to bed and wake up at the same time every day.
• Do something relaxing before bedtime, such as taking a warm bath.
• Keep your bedroom or sleep area quiet, comfortable, dark, and free from distractions, such as a TV or computer.
• Allow yourself about 20 minutes to fall asleep or fall back asleep after waking up. After that, get up and do something relaxing (like reading) until you get sleepy.

Certain activities, foods, and drinks before bedtime can keep you awake. Try to follow these guidelines:

• Exercise regularly, but not within 3 hours of bedtime.
• Avoid tobacco, alcohol, chocolate, and drinks that contain caffeine for several hours before bedtime.
• Avoid large meals and beverages just before bedtime.
• Avoid bright lights before bedtime.

For more tips on sleeping better, go to the National Heart, Lung, and Blood Institute's "Your Guide to Healthy Sleep."

Other therapies. Light therapy may help you keep a regular sleep and wake schedule. For this type of therapy, you sit in front of a light box, which has special lights, for 10 to 30 minutes. This therapy can help you feel less sleepy in the morning.

Living with narcolepsy
Living with narcolepsy can be hard. It can affect your ability to drive, work, go to school, and have relationships. Besides taking medicine, you can do many things to live a safe and fulfilling life.

Driving. Driving can be dangerous for people who have narcolepsy. Ask your doctor whether you can drive safely. To help make it safer for you to drive:
• Take naps before driving. This helps some people who have periods of extreme daytime sleepiness.
• Stop often during long drives. Stretch and walk around during the stops.
• Try to have family, friends, or coworkers in the car to keep you aware and engaged, or get rides from them.

Working. People who have narcolepsy can work in almost any type of jobs, but some jobs may be better than others. For example, a job with a flexible work schedule can make it easier to take naps when needed. A job in which you interact with your coworkers can help keep you awake. Jobs that don't require you to drive or are closer to home also may better suit your needs.

Certain laws may apply to workers who have medical conditions, such as narcolepsy. These laws include the:
• Americans with Disabilities Act (ADA). This law requires employers to reasonably accommodate the needs of their workers who have disabilities. This includes people who have narcolepsy. For example, employers may allow workers to take short naps during the workday or adjust work schedules to avoid sleepy periods.
• Family and Medical Leave Act. This law requires employers who have 50 or more employees to provide unpaid leave to employees who have illness, such as narcolepsy. This law gives leave to family members who need time to care for a close relative who has a serious illness.
• Social Security Disability Insurance or Supplemental Security Income programs. These programs may offer financial help if you can't work because of your narcolepsy.

Emotional issues and support. Living with narcolepsy may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life.

Joining a patient support group may help you adjust to living with narcolepsy. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.

Narcolepsy in special groups
School-aged children.
Children who have narcolepsy may have trouble studying, focusing, and remembering things. To help your child in school:
• Talk with your child's teachers and school officials about your child's narcolepsy and the best ways to meet his or her needs. For example, your child may need to take naps or walks during the day or tape the teacher's lessons.
• Talk with the school nurse about your child's narcolepsy and medicines. Together you can work out a place to keep the medicines and a schedule for taking them at school.

Pregnant women. If you're pregnant or planning a pregnancy, ask your doctor about whether you should continue taking your narcolepsy medicines. Certain medicines may interfere with your pregnancy.

For more information
National Center on Sleep Disorders Research (NCSDR)

6701 Rockledge Drive
Bethesda, MD 20892
(301) 435-0199
http://www.nhlbi.nih.gov/about/ncsdr/

National Heart, Lung, and Blood Institute Information Center
NHLBI Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
http://www.nhlbi.nih.gov/

Narcolepsy Network, Inc.
79 Main Street
North Kingstown, RI 02852
(401) 667-2523 / Toll Free (888) 292-6522
http://www.narcolepsynetwork.org/

This information was developed by the National Institutes of Health, National Heart, Lung, and Blood Institute

National Institutes of Health, National Heart, Lung, and Blood Institute. Facts About Narcolepsy. Available at: http://www.nhlbi.nih.gov/health/dci/Diseases/nar/nar_what.html. Last accessed December 22, 2017.

The information in this document is for general educational purposes only. It is not intended to substitute for personalized professional advice. Although the information was obtained from sources believed to be reliable, MedLink Corporation, its representatives, and the providers of the information do not guarantee its accuracy and disclaim responsibility for adverse consequences resulting from its use. For further information, consult a physician and the organization referred to herein.