Narcolepsy

People who have narcolepsy often fall into REM sleep quickly and wake up directly from it. This is linked to vivid dreams while waking up and falling asleep. It also may cause muscle weakness. Rarely, people who have this disorder fall asleep suddenly, even if they're in the middle of talking, eating, or another activity.

This page contains

1. Narcolepsy overview
2. Narcolepsy causes
3. Narcolepsy Signs and Symptoms
4. Narcolepsy Diagnose test
5. Narcolepsy Treatments
6. Lifestyle Changes for Narcolepsy
7. Living With Narcolepsy

Narcolepsy 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.

People who have narcolepsy often fall into REM sleep quickly and wake up directly from it. This is linked to vivid dreams while waking up and falling asleep.

Hypocretin, a chemical in the brain, helps control levels of 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. Examples include heredity; brain injuries; contact with toxins, such as pesticides; and autoimmune disorders. (Autoimmune disorders occur when the body's immune system attacks the body's healthy cells.)

Narcolepsy affects between 50,000 and 2.4 million people in the United States. Symptoms usually begin during the teen or young adult years. Due to extreme tiredness, people who have narcolepsy may find it hard to function at school, work, home, and in social situations.

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

Narcolepsy causes

Most people who have narcolepsy have low levels of hypocretin. This is a chemical in the brain that helps control levels of 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:

1. Heredity. Some people may inherit a gene that affects hypocretin. Up to 10 percent of people who have narcolepsy report having a relative with the same symptoms.
2. Infections.
3. Brain injuries due to conditions such as brain tumors or strokes.
4. Contact with toxins, such as pesticides.
5. Autoimmune disorders. These are conditions in which the body's immune system attacks the body's healthy cells. An example of an autoimmune disorder is rheumatoid arthritis.

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.

Narcolepsy Signs and Symptoms

1. extreme daytime sleepiness - Strong emotions, such as laughter, anger, fear, or excitement, can bring on this sleepiness,
2. Mental cloudiness or "fog", Memory problems or problems focusing, Lack of energy or extreme exhaustion and Depression.
3. cataplexy (muscle weakness) while awake - 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, and
4. hallucinations during sleep - 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.
5. Sleep paralysis during sleep - 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.
6. Rarely, people who have narcolepsy have sleep 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.
7. However, sleep episodes also may occur in the middle of talking, eating, or another activity. Cataplexy also may occur at the same time.

If you have narcolepsy, you may have one or more of these symptoms. They can range from mild to severe.

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.

Narcolepsy Diagnose test

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

1. signs and symptoms,
2. medical and family histories - infections, brain injuries, contact with toxins (pesticides), or autoimmune disorder,
3. a physical exam - infections, certain thyroid diseases, drug and alcohol use, and other medical or sleep disorders may cause symptoms similar to those of narcolepsy, and
4. results from tests.

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. The results of two tests�a polysomnogram (PSG) and a multiple sleep latency test (MSLT)�are used to diagnose narcolepsy.

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. This test can help find out whether you:

1. Fall asleep quickly
2. Go into rapid eye movement (REM) sleep soon after falling asleep
3. 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 relax in a quiet room for about 30 minutes. A technician checks your brain activity during this time. The test is repeated three or four times throughout the day.

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 levels of hypocretin in the fluid that surrounds your spinal cord. Most people who have narcolepsy have low levels of hypocretin.

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.

Narcolepsy Treatments

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:

1. Stimulants to ease daytime sleepiness and raise your alertness.
2. A medicine that helps make up for the low levels of hypocretin in your brain. (Hypocretin is a chemical that helps control levels of 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.
3. Medicines that help you sleep at night.
4. 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.

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

Lifestyle Changes for Narcolepsy

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.

1. Follow a regular sleep schedule. Go to bed and wake up at the same time every day.
2. Do something relaxing before bedtime, such as taking a warm bath.
3. Keep your bedroom or sleep area quiet, comfortable, dark, and free from distractions, such as a TV or computer.
4. 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.
5. Certain activities, foods, and drinks before bedtime can keep you awake. Try to follow these guidelines:
6. Exercise regularly, but not within 3 hours of bedtime.
7. Avoid tobacco, alcohol, chocolate, and drinks that contain caffeine for several hours before bedtime.
8. Avoid large meals and beverages just before bedtime.
9. Avoid bright lights before bedtime.

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 satisfying life.

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:

1. Take naps before driving. This helps some people who have periods of extreme daytime sleepiness.
2. Stop often during long drives. Stretch and walk around during the stops.
3. 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 all types 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 be better.

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 with an illness, such as narcolepsy. It also 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.

Getting Emotional Support

Getting support from others�friends, family, and coworkers�may help you cope with your disorder. Learn more about narcolepsy, and tell your family and friends about the disorder. Ask them for help.

Seek professional counseling for yourself and your family. Ask your doctor about narcolepsy or sleep disorder support groups in your area.

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 to your child's teachers and school administrators 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 to 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, talk to your doctor about whether you should continue taking your narcolepsy medicines. Certain medicines may interfere with your pregnancy.

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 Last modified date 28th April 2009

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