Narcolepsy

What is narcolepsy?

Narcolepsy is a sleep disorder. It's a lifelong disease of the central nervous system.

Narcolepsy causes excessive and overwhelming daytime sleepiness, even after getting plenty of nighttime sleep. If you have narcolepsy, you are likely to become drowsy or to fall asleep at inappropriate times and places. These sleep attacks may happen with or without warning.

You may have repeated attacks in a single day. The drowsiness may last a long time. Nighttime sleep may be split up, and you may wake up often.

What causes narcolepsy?

The exact cause of narcolepsy is not known, but it's usually related to abnormally low levels of hypocretin in the brain. Hypocretin is a chemical that regulates the sleep/wake cycle. Exactly why some people have low hypocretin levels and narcolepsy isn't known. Narcolepsy can also be related to genetic factors, inflammatory disorders, and tumors.

What are the symptoms of narcolepsy?

These are the most common symptoms of narcolepsy. But symptoms may differ a bit in each person. Symptoms may include:

• Excessive daytime sleepiness (EDS). An overwhelming desire to sleep at inappropriate times.

• Cataplexy. A sudden loss of muscle control ranging from slight weakness to total collapse. This most often occurs during times of strong emotion.

• Sleep paralysis. Being unable to talk or move for about a minute when falling asleep or waking up.

• Hypnagogic hallucinations. Vivid and often scary dreams and sounds reported when falling asleep.

• Disrupted sleep.

Other symptoms include:

• Automatic behavior. Doing routine tasks without conscious awareness of doing so, and often without memory of it.

• Waking up often

You may have other problems as you cope with this condition. These include:

• Feelings of intense fatigue and continual lack of energy

• Depression

• Trouble concentrating and memorizing

• Vision (focusing) problems

• Eating binges

• Weak limbs

• Trouble handling alcohol

How is narcolepsy diagnosed?

Your healthcare provider will ask about your health history and do a physical exam. Lab tests to confirm diagnosis and plan treatment may include:

• Overnight polysomnogram (PSG). A sleep specialist will monitor you during an entire night of sleep.

• Multiple sleep latency test (MSLT). This test, done during the day, after a full night's sleep, measures when you fall asleep and how quickly rapid eye movement (REM) sleep occurs.

How is narcolepsy treated?

The goal of treatment of narcolepsy is to help you remain as alert as possible during the day. It’s also important to reduce times when you lose muscle control. Ideally, this can be done using a minimal amount of medicine.

• Medicines. Central nervous system stimulants are usually prescribed for extra sleepiness. Antidepressants may help with muscle control. Sodium oxybate is a medicine that may improve sleepiness and cataplexy.

• Nap therapy. Having 2 or 3 short naps during the day may help control sleepiness and maintain alertness.

• Healthy diet

• Regular exercise. Exercising every day for at least 20 minutes and at least 4 to 5 hours before bed. This improves sleep quality and helps people maintain a healthy weight.

• Behavioral therapy

A number of lifestyle changes may help manage narcolepsy. Some of these include:

• Sticking to the same sleep schedule 7 days a week. This can help you sleep better.

• Not having caffeine or alcohol for at least 3 hours before bed

• Not smoking

• Not having a large meal just before bed. A large meal can make it hard to sleep.

• Sleeping in a cool, comfortable room

• Doing relaxing activities such as a warm bath before bedtime

• Following safety precautions, especially when driving

• Sticking to a prescribed medicine schedule. If you aren’t getting treatment or consistently taking your medicines as prescribed, you are more likely to suffer serious injuries or death. Suddenly losing muscle control or falling asleep while walking down a flight of stairs can be deadly.

• Educating family members and close friends about narcolepsy. This will help them understand your condition and support you.

• Joining a support group to feel less isolated and develop better coping strategies

People with narcolepsy can use the Americans with Disabilities Act (ADA) to protect their rights in the workplace. ADA protection applies to everyone who has a disability. The ADA requires schools to accommodate students who have special needs such as taking medicines and modifying a class schedule to fit in a nap.

Key points about narcolepsy

• Narcolepsy is a chronic sleep disorder. The main symptom of narcolepsy is extra and overwhelming daytime sleepiness, even after a good night's sleep.

• The goal of treatment of narcolepsy is to help you remain as alert as possible during the day.

• Treatment of narcolepsy may include medicines, nap therapy, and lifestyle changes.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your provider if you have questions.