Narcolepsy

GENERAL INFORMATION:

What is narcolepsy? Narcolepsy (NAHR-koh-lep-see) is a sleep disorder where you do not get enough REM sleep. REM (rapid eye movement) sleep is the stage of sleep where you dream. Not getting enough REM sleep at night causes you to be sleepy during the day. You can fall asleep at any time, even when you do not want to. With this disorder, you may have no control over when you fall asleep. You may not sleep well at night, and do not get enough sleep in a 24-hour period. Narcolepsy may cause you to have relationship problems and problems at work. Narcolepsy can affect how you feel about yourself and your life.

What causes narcolepsy? The causes of narcolepsy are not known. Narcolepsy may be genetic (je-NET-ik). This means you may be more likely to have narcolepsy if someone in your family has it.

What are the signs and symptoms of narcolepsy? The signs and symptoms of narcolepsy usually begin between 15 and 30 years of age, but they can begin at any age. The problems of narcolepsy may continue through life. You may have one or more of the following symptoms:

• Restless sleep at night. You may toss and turn in bed, have leg jerks and nightmares, and wake up often.
  
  
• Sleepiness during the day that you cannot control. Sleep attacks may happen up to ten times each day. These sleep attacks usually happen after meals, but may even happen while you are talking or working.
  
  
• Sudden loss of muscle strength, which feels like you are paralyzed (PER-e-liz-ed) for a short time. This is called cataplexy (KAT-ah-plek-see). This often happens when you are stressed or tired. It can also happen when you suddenly feel emotions like anger, fear, or joy. Cataplexy can last for a few seconds, or up to 30 minutes.
  
  
• Feeling paralyzed as you wake up.
  
  
• Very real or scary dreams, sounds, or hallucinations (hah-loo-si-NAY-shuns) at the beginning of a sleep attack, or upon awaking. Hallucinations are seeing or hearing things that are not really there.

What tests may be done when treating narcolepsy? Narcolepsy is a life-long condition, but you can live a near-normal life with treatment and support. You will probably be treated in a clinic or your caregiver's office. You may need to see your caregiver between one and four times each month. People who have narcolepsy often also feel depressed (sad most or all of the time). You and your family may see a trained caregiver to help you deal with depression. You may be given medicine to treat the depression and the narcolepsy. You may be given a physical exam by your caregiver. You may need x-rays, blood tests and other tests. Special tests might include:

• 12-lead ECG: This test, also called an EKG, helps caregivers look for damage or problems in different areas of the heart. Caregivers may need to prepare your skin by shaving off some hair, or cleaning it with a gritty lotion. Sticky pads are placed on your chest, arms, and legs. Each sticky pad has a wire that is hooked to a machine or TV-type screen. A short period of electrical activity in your heart muscle is recorded. Caregivers will look closely for certain problems or changes in how your heart is working. This test takes about 5 to 10 minutes. It is important that you lie as still as possible during the test. You may need this test more than once.
  
  
• CT scan: This test is also called a "CAT" scan. A special x-ray machine uses a computer to take pictures of your body. Before taking the pictures, you may be given dye through an IV in your vein. The dye helps the body part show up better in the pictures. People who are allergic to shellfish (lobster, crab, or shrimp) may be allergic to this dye. Tell your caregiver if you are allergic to any of these.
  
  
• MRI: This test is also called magnetic resonance (REZ-oh-nans) imaging. During the MRI, 3-D (three dimensional) pictures are taken of your body parts. Caregivers use these pictures to look for any problems.
  
  
• Sleep clinic studies: Studies in a sleep clinic may help caregivers find another cause of your sleepiness. Your sleeping area at home may be checked to make sure you can get quiet restful sleep.
  
  
• Sleep log: You may be asked to keep a record of your sleep pattern. Caregivers may watch you sleeping to record REM sleep. REM sleep is when dreaming occurs.

How is narcolepsy treated?

• Psychostimulants (seye-koh-STIM-u-lants): This is medicine to help keep you awake during the day. It may cause you to feel more excited, restless, or less hungry than usual.
  
  
• Antidepressants (an-tee-dee-PRES-ants): This medicine may be given if narcolepsy causes you to feel depressed. It may help your other medicines work better. It may take some time before you start to feel better while using this medicine.
  
  
• Daily naps: Taking naps can help control your narcolepsy. If you can, take several short (20 to 40 minutes) naps every day. Nap at the same time every day. Sometimes one long nap in the afternoon may also help you.
  
  
• Sleep hygiene: Sleep hygiene trains your body to sleep well at night. This may help you feel less sleepy during the day. If your caregiver wants you to try sleep hygiene, try the following:
  
  
  • Avoid drinking fluids that contain alcohol or caffeine, and avoid nicotine (smoking) in the late afternoon or evening. Caffeine can be found in some coffee, tea, soda, and sports drinks and foods.
    
    
  • Get some exercise every day, in bright sunlight if possible. Complete your exercise at least three hours before you go to bed.
    
    
  • Use your bed for relaxing activities. Try not to eat, read, work, or watch television in bed. Keep bedroom and bathroom lights dim. Keep the temperature in your bedroom cool.
    
    
  • Go to bed at the same time, and get up at the same time every day.
    
    
  • Get a good amount of sleep every night. Most people need six to eight hours. Ask your caregiver how many hours you need, and make a plan to get them.

What are my patient rights?

• Release of information form: This is a legal paper that lets caregivers share information with those listed on this form. You have to sign this form before any information can be released to persons outside the hospital.
  
  
• Right to privacy: Information that you share with your caregivers is kept private among caregivers. They will not share information with others without your permission.

Risks: Your narcolepsy could get worse if it is not treated. You may get depressed, feel fatigued (tired) a lot of the time, and have trouble concentrating. Narcolepsy can make it hard to work and get along with others. It may also cause a car accident during a sudden sleep attack. If you think about hurting yourself or committing suicide (killing yourself), call your caregiver right away.

Where can I go for support?

• Accepting that you have narcolepsy is hard. You and those close to you may feel angry, sad, or frightened. These are normal feelings. Talk to your caregivers, family, and friends about your feelings. Write down questions you have about narcolepsy and how it is treated. This way you will be able to ask them during your next visit to the caregiver. Your family may also want to join a support group. This is a group of people who have relatives with narcolepsy. Ask your caregiver for the names and numbers of support groups in your town. Ask your health care provider if they know about books that you can read. Reading about your illness might help you better understand it. You can also call or write one of the following national organizations for more information:
  • National Sleep Foundation
    1522 K Street NW, Suite 500
    Washington, DC 20005
    Phone: 1-202-347-347
    Web Address: http://www.sleepfoundation.org
    
  • Narcolepsy Network
    PO Box 294
    Pleasantville, NY 10570
    Phone: 1-401-667-2523
    Phone: 1-888-292-6522
    Web Address: http://www.narcolepsynetwork.org
    
  
  
  
• Wear a medical alert bracelet that says you have narcolepsy. You may get one from the MedicAlert Foundation. Call or write them at:
  • MedicAlert Foundation
    2323 Colorado Avenue
    Turlock, CA 95382
    Phone: 1-888-633-4298
    Web Address: http://www.medicalert.org
    

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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