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What is it?

The term narcolepsy is used to describe a group of people affected by excessive sleepiness. It also includes features of dreaming that occur while awake. Narcoleptics are often refreshed by short naps. However, after two or three hours, they feel sleepy again. At times, people with narcolepsy can fall asleep suddenly. These “sleep attacks” can happen while eating, walking or driving.

There are two main kinds of narcolepsy:

1. Narcolepsy with cataplexy
2. Narcolepsy without cataplexy

Cataplexy is when the leg, arm or face muscles suddenly become weak. It is normally caused by strong emotions. This is what people often experience while laughing or when they are surprised.

People with narcolepsy often experience the following:

• Sleep paralysis

You are unable to move for a few seconds or minutes as you are falling asleep or waking up.

• Hypnagogic hallucinations

You see things that aren’t there. You have the feeling that there is someone in the room with you as you are falling asleep.

• Disturbed night time sleep

You wake up frequently and have trouble falling back to sleep.

• Memory problems

You have trouble remembering things that people tell you. This is because you may not be fully awake when they are talking to you.

Who gets it?

About one out of every 2,000 people is known to have narcolepsy. There does seem to be a genetic link to it. There are more people in Japan who have it. Fewer people in Israel suffer from it. The chance that you have narcolepsy is higher when a relative also has it. It is very rare for more than two people in the same family to have this sleep disorder. It affects the same number of men and women.

How do I know if I have it?

1. Is it almost impossible for you to keep from falling asleep during the day?

2. Are you still sleepy even when you have had a full night of sleep?

3. Do you soon feel sleepy even after you have had a long nap?

If your answer to each of these questions is yes, then you might have narcolepsy. Narcolepsy can last for your entire life. It usually starts between the ages of 12 and 20. The symptoms do not get better without treatment. If you are unable to move when you first fall asleep or wake up, then you almost are sure to have narcolepsy.

It is also important to know if there is something else that is causing your sleep problems. They may be a result of one of the following:

• Another sleep disorder
• A medical condition
• Medication use
• A mental health disorder
• Substance abuse

Do I need to see a sleep specialist?

Yes. Many primary care doctors are not always sure how to figure out if you have narcolepsy. Since it is not a common sleep problem, doctors do not see many patients who have it. Sleep specialists deal with people who have narcolepsy all the time. They have the experience and skill to help you get better. They will need to know your full medical history. They will also be sure to give you a physical exam. Finally, you will need to do two sleep studies. These sleep studies will help them evaluate your problem.

What will the doctor need to know?

The doctor will need to know what symptoms you have and when they started. If you have sleep attacks, he or she will want to know how often you have them and what time of day they occur. It will be important to tell your doctor how old you were when you first started to have problems. He or she will need to know your full medical history. Find out if you have any family members with sleep problems. It will also be helpful if you fill out a sleep diary for two weeks.

Will I need to take any tests?

To know for sure if you have narcolepsy, you will need to do two sleep studies:

1. Overnight Sleep Study

Also called a polysomnogram, this study records a full night of sleep.

2. Multiple Sleep Latency Test (MSLT)

This is a daytime test that records at least four naps.

The polysomnogram will chart your brain waves, heart beat, and breathing as you sleep. It will also record how your arms and legs move. This will show if there are other problems that are causing your sleep attacks. Two examples of these problems are sleep apnea and periodic limb movement disorder.

People who have narcolepsy tend to fall asleep at unusual times during the day. The MSLT will measure how fast you fall asleep during the day. It will also show what kind of sleep you have when you take a nap.

Your doctor may ask that you take a test to screen for drugs before you have the MSLT. There are a number of drugs that can affect the results of the sleep study. The drug screen will help the doctor to know what the MSLT really says about your sleep problem.

How is it treated?

The most common way to treat narcolepsy is to use a medication. Your doctor will most likely want you to take a stimulant that helps you stay awake during the day. There are a variety of stimulants that can be used. It may take some time for your doctor to find the right medication for you. He or she will also need to find the right dosage to control your symptoms.

You may have narcolepsy with cataplexy. In this case, a doctor will use a different kind of drug to treat your muscle weakness.

Reviewed by David A. Kristo, MD
Updated May 16, 2006

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