Narcolepsy

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KEY POINTS

• Narcolepsy is thought to be a lifelong disorder that causes sudden, uncontrollable urges to sleep.
• Medicines may be used to reduce your daytime sleepiness, sleep paralysis, cataplectic attacks, or other symptoms.
• Follow the full course of treatment prescribed by your healthcare provider and ask your provider if there are activities you should avoid.

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What is narcolepsy?

Narcolepsy is a disorder that causes sudden, uncontrollable urges to sleep. You may fall asleep without any warning for a few seconds to several minutes at a time. You may have just a few sleep attacks or many sleep attacks in a single day. Sleep attacks may happen after meals or while talking, working, driving a vehicle, reading, or watching TV.

Narcolepsy usually starts between ages 7 and 30, but it can start at any age. Once it starts, this disorder is thought to be lifelong.

What is the cause?

The cause of this disorder is not completely known. It has been linked to a shortage of certain brain chemicals that control wakefulness, how long you sleep, and how much rapid-eye-movement (REM) sleep you get.

What are the symptoms?

Symptoms may include:

• Extreme daytime sleepiness, including sleep attacks. This is the most common symptom of narcolepsy. You cannot resist the urge to sleep. Sleepiness may interfere with your normal activities at home, school, or work. It may also affect your driving. The sleep attacks are involuntary and brief and last only minutes. The sleep attacks can happen many times a day.
• Cataplexy. A sudden loss of muscle tone may cause you to fall to the floor. You do not lose consciousness, but you cannot respond. It can be brought on by laughter, stress, anger, fear, or other intense emotions. Cataplexy can also cause blurred vision, eyelid drooping, inability to close your jaw, slurred speech, or knee buckling. Even though you cannot move your muscles, you are still awake.
• Hallucinations. You may see or hear things that are not real when you fall asleep or wake up.
• Sleep paralysis. You may be unable to move or speak for a short time when you are falling asleep or waking up.
• Disturbed nighttime sleep. You may wake up often and have trouble falling back to sleep.

How is it diagnosed?

Your healthcare provider will ask about your symptoms and medical history and examine you. You will have blood tests to check for other possible causes of your symptoms, such as medicines or medical conditions.

You may be asked to visit a sleep center to have tests such as:

• An overnight sleep study or polysomnogram. This test records brain waves, muscle activity and leg movement, heartbeat, and breathing while you sleep.
• Multiple sleep latency test (MSLT). This test is done during the day and shows how quickly you fall asleep during the daytime and if you reach REM (rapid eye movement) or dreaming sleep during naps. For the MSLT, you will be asked to take several short naps during the daytime test period.

In rare cases, you may need a lumbar puncture, also called a spinal tap, which uses a needle to get a sample of fluid from the area around your spinal cord. A lumbar puncture tests for the chemicals that have been linked to narcolepsy with cataplexy. Most people do not need a lumbar puncture for diagnosis.

How is it treated?

Medicines may be used to reduce daytime sleepiness, sleep paralysis, cataplectic attacks, or other symptoms.

How can I take care of myself?

Follow the full course of treatment prescribed by your healthcare provider. In addition:

• Keep regular sleep times, including scheduled naps.
• If you are sleepy, then you should not drive.
• Don’t smoke, especially at night.
• Do relaxing activities before bed, such as a warm bath or listening to music.
• Avoid medicines such as sedatives or some antihistamines that may cause sleepiness, including nonprescription and prescription sleeping pills.
• Avoid alcohol.

Ask your provider:

• How and when you will get your test results
• If there are activities you should avoid
• How to take care of yourself at home
• What symptoms or problems you should watch for and what to do if you have them

Make sure you know when you should come back for a checkup. Keep all appointments for provider visits or tests.

You can get more information from:

• National Sleep Foundation
  703-243-1697
  https://sleepfoundation.org/