What is narcolepsy?

Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience fleeting urges to sleep. If the urge becomes overwhelming, individuals will fall asleep for periods lasting from a few seconds to several minutes. In some cases, people may remain asleep for an hour or longer.

What causes narcolepsy?

The cause of narcolepsy is not known. It involves the body's central nervous system, which includes the brain and spinal cord. Narcolepsy is a genetic disorder. It is caused by a deficiency in the production of a brain chemical that helps neurons talk to each other.

What are the symptoms of narcolepsy?

The following are the most common symptoms of narcolepsy. However, people may experience symptoms differently. 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.

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

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

Other symptoms include:

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

• Disrupted nighttime sleep and waking up often

You may have other difficulties as you cope with this condition including:

• Feelings of intense fatigue and continual lack of energy

• Depression

• Difficulty in concentrating and memorizing

• Vision (focusing) problems

• Eating binges

• Weak limbs

• Difficulties in handling alcohol

Whatever the age of onset, patients find that the symptoms tend to get worse over the two to three decades after the first symptoms appear. Many older patients find that some daytime symptoms decrease in severity after age 60.

How is narcolepsy diagnosed?

In addition to a complete medical history and 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 measures when you fall asleep and how quickly rapid eye movement (REM) sleep occurs.

• Genetic blood test. To test for a genetic mutation often found in people who tend to have narcolepsy.

Narcolepsy is not definitively diagnosed in most patients until 10 to 15 years after the first symptoms appear.

How is narcolepsy treated?

Specific treatment will be determined by your healthcare provider based on:

• Your age, overall health, and medical history

• Severity of the disease

• Your tolerance for specific medicines, procedures, or therapies

• Expectations for the course of the disease

• Your opinion or preference

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 excessive sleepiness. Antidepressants may help with muscle control.

• Nap therapy. Two or three short naps during the day may help control sleepiness and maintain alertness.

• Proper diet

• Regular exercise

• Behavioral therapy

There is no cure for narcolepsy. The U.S. Food and Drug Administration has approved a drug called modafinil for the treatment of excessive daytime sleepiness. Two classes of antidepressant drugs — tricyclic antidepressants and selective serotonin reuptake inhibitors — have proved effective in controlling cataplexy in many patients. Drug therapy should be supplemented by behavioral strategies. Many people with narcolepsy take short, regularly scheduled naps at times when they tend to feel sleepiest. Improving the quality of nighttime sleep can combat excessive daytime sleepiness and help relieve persistent feelings of fatigue.

None of the currently available medications enable people with narcolepsy to consistently maintain a fully normal state of alertness. But excessive daytime sleepiness and cataplexy, the most disabling symptoms of the disorder, can be controlled in most patients with drug treatment. Often the treatment regimen is modified as symptoms change.

Key points about narcolepsy

Narcolepsy is a chronic, neurological sleep disorder with no known cause. The main characteristic of narcolepsy is excessive and overwhelming daytime sleepiness, even after adequate nighttime sleep:

• In addition to a complete medical history and physical exam, there are several lab tests to confirm the diagnosis.

• 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

  • Proper diet

  • Regular exercise

  • Behavioral therapy

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.