Narcolepsy: Care Instructions

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Your Care Instructions

Everybody gets a little sleepy once in a while, during a long car ride or other times when you want to be alert. But some people cannot control their sleepiness. It is no fun to be in the middle of your workday or driving your car down the street and have an overwhelming desire to sleep. This condition is called narcolepsy.

Doctors do not know what causes narcolepsy. Your doctor may ask you to keep a sleep diary for a couple of weeks. It will help you and your doctor decide on treatment.

It often helps to take limited naps during the day. And these things might help you sleep better at night: create a good place to sleep, do things that help your mood before you go to bed, and keep a consistent sleep schedule.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Try to take 2 or 3 short naps at regular times during the day. After a nap, always give yourself time to become alert before you drive a car or do anything that might cause a crash.
  • Take your medicines exactly as prescribed. Call your doctor or nurse call line if you think you are having a problem with your medicine. You may need to try several medicines before you find the one that works best for you.
  • Try to improve your nighttime sleep habits. Here are a few of the things you could do:
    • Go to bed only when you are sleepy, and get up at the same time every day, even if you do not feel rested. This might help you sleep well the next night and the night after that.
    • If you lie awake for longer than 15 minutes, get up, leave the bedroom, and do something quiet, such as read, until you feel sleepy again.
    • Avoid drinking or eating anything with caffeine after 3 p.m. This includes coffee, tea, cola drinks, and chocolate.
    • Make sure your bedroom is not too hot or too cold, and keep it quiet and dark.
    • Make sure your mattress provides good support.
  • Be kind to your body:
    • Relieve tension with exercise or a massage.
    • Learn and do relaxation techniques.
    • Avoid alcohol, caffeine, nicotine, and illegal drugs. They can increase your anxiety level and cause sleep problems.
  • Get light exercise daily. Gentle stretching, light aerobics, swimming, walking, and riding a bicycle can help to keep you going during the day and to sleep well at night.
  • Eat a healthy diet. You may feel better if you avoid heavy meals and eat more fruits and vegetables.
  • Do not use over-the-counter sleeping pills. They can make your sleep restless.
  • Ask your doctor if any medicines you take could cause sleepiness. For example, cold and allergy medicines can make you drowsy.
  • Consider joining a support group with people who have narcolepsy or other sleep problems. These groups can be a good source of tips for what to do. Also, it can be comforting to talk to people who face similar challenges. Your doctor can tell you how to contact a support group.

When should you call for help?

Call your doctor or nurse call line now or seek immediate medical care if:

  • You passed out (lost consciousness).
  • You cannot use your muscles. This may happen very briefly, sometimes after you laugh or are angry, and may only affect part of your body.

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • Your sleepiness continues to get worse.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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