What is narcolepsy?
Narcolepsy is a chronic neurological disorder that involves your body's central nervous system. Recent discoveries indicate that people with narcolepsy lack a chemical in the brain called hypocretin, which normally stimulates arousal and helps regulate sleep. They also discovered that there is a reduction in the number of HCRT cells or neurons that secrete hypocretin. This may be due to a degenerative process or an immune response. How this occurs is unknown.

About one in two thousand people suffers from narcolepsy. It affects both men and women of any age, but its symptoms are usually noticed after puberty begins. For the majority of people with narcolepsy, the first symptoms appear between the ages of 15 and 30.

Major symptoms
Excessive daytime sleepiness is usually the first symptom to appear, and often the most troubling. It is an overwhelming and recurring need to sleep at times when you want to be awake. In addition to sleepiness, key symptoms of narcolepsy can include regular episodes of:

Cataplexy - a sudden loss of muscle control ranging from slight weakness to total collapse. It is commonly triggered by intense emotion or strenuous athletic activity. Most persons with narcolepsy have some degree of cataplexy.
Sleep paralysis - being unable to talk or move for a brief period when falling asleep or waking up. Many persons with narcolepsy suffer short-lasting partial or complete sleep paralysis.
Hypnagogic hallucinations - vivid and often scary dreams and sounds reported when falling asleep. People without narcolepsy may experience hypnagogic hallucinations and sleep paralysis as well.
Automatic behavior - familiar, routine or boring tasks performed without full awareness or later memory of them.
Diagnosing Narcolepsy
In addition to a medical history and physician examination, a diagnosis is made from polysomnogram tests in an overnight sleep laboratory to measure brain waves and body movements as well as nerve and muscle function. A diagnosis also includes the results of the Multiple Sleep Latency Test (MSLT), which measures the time it takes to fall asleep and to go into deep sleep while taking several naps over a period of time.

Many physicians are not familiar with identifying the symptoms and diagnostic procedures specific to narcolepsy. Often, these symptoms are associated with other disorders. Asking for a referral to a sleep specialist or sleep center will avoid the delay in both diagnosis and treatment so often experienced by those who suffer from this serious disorder.

Treatment options
Treatment with medications is the first line of defense. The goal in using medications should be to approach normal alertness while minimizing side effects and disruptions to daily activities. Changes in behavior combined with drug treatment have helped most persons with narcolepsy improve their alertness and enjoy an active lifestyle.

Common medications and side effects
Doctors generally prescribe stimulants to improve alertness and antidepressants to control cataplexy, hypnagogic hallucinations and sleep paralysis. Common stimulants include: dextroamphetamine sulfate (DexedrineTM), methylphenidate hydrochloride (RitalinTM), and pemoline (CylertTM). Methamphetamine hydrochloride (DesoxynTM) is prescribed less frequently for narcolepsy. Some of the most common side effects of stimulants are headache, irritability, nervousness, insomnia, irregular heart beat, and mood changes.

A wake-promoting drug, modafinil (ProvigilTM) was approved by the U.S. Food and Drug Administration (FDA) in 1999 for use in treating the excessive daytime sleepiness associated with narcolepsy. It does not act as a stimulant for other body systems and studies have shown that modafinil is effective in improving alertness with few side effects and low abuse potential.

Several classes of antidepressants are prescribed to treat cataplexy, hypnagogic hallucinations and sleep paralysis. One class, multicyclics, includes imipramine (Tofranil), desimpramine (Norpramin), clomipramine (Anafranil), and protriptyline (Vivactil). Another class are selective serotonin re-uptake inhibitors (SSRIs). These include fluoxetine (Prozac), paroxetine (Paxil), and sertraline (Zoloft).

Side effects vary from one class of antidepressants to another. Those most often reported are drowsiness, sexual dysfunction and lowered blood pressure. In a small percentage of patients, SSRIs cause overexcitement, anxiety, insomnia, nausea and reduced sexual drive.

Sodium oxybate (Xyrem) is the first and only FDA-approved medication for the treatment of cataplexy associated with narcolepsy. It produces consolidation of sleep and improvement of disturbed nighttime sleep characteristic of narcolepsy. It is sedating and should only be used at night. Xyrem is a Schedule III controlled drug substance with abuse potential that is available by prescription.

Narcolepsy patients who have other health conditions (like high blood pressure, heart disease or diabetes) should ask their doctor or pharmacist how medications for those conditions may interact with those taken for narcolepsy. If you take over-the-counter cold and allergy medications, keep in mind that they may make you sleepy.

Other methods of treatment
Drug treatment is only one element of narcolepsy symptom management. Changes in behavior to encourage good nighttime sleep are important too.

Avoid caffeine, nicotine and alcohol in the late afternoon and evening
Exercise regularly, but at least three hours before bedtime
Not use your bed for any daytime activities
Establish a routine time for sleeping and waking
Get eight hours of sleep nightly
Some sleep specialists recommend several short daily naps along with drug treatment to help control excessive sleepiness and sleep attacks. Others report that a single, long afternoon nap works well to improve a patient's alertness. If naps help you, set aside at least 20-40 minutes for sleep. Be sure you have time to wake up fully.

Living with narcolepsy
The symptoms of narcolepsy can often be effectively managed so that you do not miss the normal activities of life.

Discuss any changes in your symptoms and possible side effects of medications with your doctor
Develop your own ways to cope with symptoms and cataplexy triggers. Looking for safe situations, places and supportive people when cataplexy is likely may prove helpful to avoid injury from falls
Schedule regular nap times
Join a well-informed support group where you can share experiences and coping strategies
Seek out counseling, alone or with your family. A mental health professional, familiar with disabilities, can be helpful when you need to discuss personal, family and employment matters