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Patient education: Narcolepsy (The Basics)

Patient education: Narcolepsy (The Basics)

What is narcolepsy? — Narcolepsy is a brain disorder that makes you feel sleepy most of the time. People with narcolepsy sometimes fall asleep all of a sudden, even when they don't expect to. They can even fall asleep while they are in the middle of activities, such as eating, talking, or driving.

People usually develop narcolepsy during their teens or early 20s. Some people get it earlier and others later. Once it starts, the disorder can make it hard to work, do schoolwork, or do other normal activities.

What are the symptoms of narcolepsy? — The symptoms can include:

Feeling sleepy during the day

Falling asleep all of a sudden, often at inappropriate times – Some people call these "sleep attacks."

Suddenly falling down, going limp, or feeling weak, especially when excited, angry, or laughing – The medical term for this is "cataplexy."

Being unable to move or speak in the few moments right after waking or just before falling asleep

Seeing, feeling, or hearing things that are not really there in the few moments before falling asleep or right after waking up – This can be scary and feel very real.

Some people with narcolepsy also have problems with depression or anxiety. Symptoms of depression include feeling sad most of the time, or losing interest in things you used to like to do. Symptoms of anxiety include feeling worried most of the time.

Should I see a doctor or nurse? — Yes, if you have symptoms of narcolepsy, see your doctor or nurse. The symptoms can be dangerous if they happen while you are driving or doing something that could lead to a fall or injury.

You should also talk to your doctor or nurse if you think you might have depression or anxiety. There are treatments that can help.

Will I need tests? — Yes. If your doctor or nurse suspects you have narcolepsy, they might send you for a "sleep study." For the study, you go to a sleep lab where you are hooked up to different machines that monitor your heart rate, breathing, brain activity, and movements while you sleep at night. Several hours after the sleep study is done, another test is done in which the lights are dimmed and you are given privacy and asked to try napping several times.

People with narcolepsy have abnormal sleep patterns during naps and at night. These abnormal patterns can be detected during the studies.

How is narcolepsy treated? — Narcolepsy is usually treated with behavior changes and medicines. People with the disorder should:

Avoid medicines that can make people sleepy, such as some allergy medicines

Take naps just before important events and at scheduled times during the day

Keep a regular sleep schedule

Make sure they get enough sleep at night

People who are still very sleepy even if they make these changes can be treated with medicines to help them stay awake. These medicines can help, but even with treatment, people can still feel sleepy. That's why even people who are being treated have to be careful about the activities they do. Driving, for example, can be dangerous for people with narcolepsy.

The medicines used to help people stay awake can sometimes cause high blood pressure, decreased appetite, and other problems. If your doctor prescribes one of these medicines, make sure you understand the risks.

People who have muscle weakness or go limp when they feel strong emotions can get medicines to help with that problem, too.

Is there anything I can do on my own to deal with narcolepsy? — If you have narcolepsy, think about seeing a counselor and try to find support at work or school. This condition can make you feel sad, frustrated, and embarrassed. Plus, other people who do not understand the condition can sometimes treat you like you are lazy or accuse you of avoiding things. All of this can be hard to deal with, so it can help to have someone to talk to.

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This topic retrieved from UpToDate on: Mar 03, 2022.
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