Narcolepsy

Narcolepsy is a rare condition that affects approximately 0.05% of the population, with symptoms peaking between the ages of 15 and 20. Narcolepsy is marked by excessive daytime sleepiness which can be so severe that it interferes with functioning and sometimes results in unexpected “sleep attacks.” People with narcolepsy often report the associated symptoms of sleep paralysis, hypnogogic hallucinations, cataplexy, and automatic behavior.

 

Sleep paralysis usually occurs when the sleeper is lying in bed prior to sleep onset or after awakening. He or she is unable to move for a few seconds, minutes, or longer. Sometimes sleepers can move only their eyes. The episodes are generally harmless, although they can result in genuine distress for the sufferer.

 

Hypnogogic hallucinations also occur when the sleeper is lying in bed prior to sleep onset or after awakening. The sufferer may experience auditory, visual, tactile, or olfactory (smell) hallucinations for brief periods. People sometimes describe these as brief, dreamlike experiences. Although these experiences are not concerning to many, some people can have terrifying or disturbing hallucinations that cause them great distress.

 

Cataplexy is characterized by the sudden loss of muscle tone while awake. The sufferer may experience a mild, transient drop in muscle tone (e.g., a droopy arm or periods of clumsiness associated with dropping things), or may experience severe loss of muscle tone that literally results in falling to the floor, and speech can be affected during the attacks. Cataplexy is brought on by stress, fatigue, or the experience of intense emotion such as anger or joy.

 

Narcolepsy and cataplexy are so rare that healthcare providers often fail to accurately diagnose the problem. Automatic behavior refers to actions for which the person has no memory. Sometimes the sufferer reports that they are acting in a “fog.” For example, one woman with narcolepsy entered her dining room to find a beautiful vase on her table. She had no idea where it came from until she looked at her checkbook and realized that she had purchased it on a recent shopping trip. Both the vase and the shopping trip had been forgotten! Automatic behavior is due to severe sleepiness.

 

Narcolepsy is often diagnosed in a sleep laboratory facility. One diagnostic indicator of narcolepsy is the occurrence of rapid-eye-movement (REM) sleep on daytime nap testing. Narcolepsy is usually treated with stimulant medication to address daytime sleepiness, and tricyclic or other medications to address sleep paralysis, hypnogogic hallucinations, and cataplexy. These medications include stimulants such as methylphenidate (Ritalin®), and pemoline (Cylert®) for sleepiness and fluoxetine (Prozac®) and venlafaxine (Effexor®) for cataplexy and associated symptoms. However, effectiveness is not guaranteed and some people may experience unwanted adverse effects. Two newer medications include modafinil or armodafinil (Provigil® or Nuvigil), which have been approved by the FDA to treat sleepiness associated with narcolepsy, and gamma-hydroxybutyrate (Xyrem®), which relieves narcolepsy symptoms including cataplexy.

 

For information about narcolepsy, speak to your doctor. Additional information may be found at www.narcolepsynetwork.org, and patient information brochures may be obtained by calling 212-994-5100.