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What is Narcolepsy?

Narcolepsy is a medical disorder that impacts 1 in approximately 2,000 people in the United States of America. While that frequency is similar to Multiple Sclerosis, many people with narcolepsy are unaware of the condition and go undiagnosed. According to Stanford=s Center for Narcolepsy, globally, narcolepsy=s impact ranges from .2 per thousand to as high as 1.6 per thousand. The disease is a sleep disorder, involving irregular patterns in Rapid Eye Movement (REM) Sleep and significant disruptions of the normal sleep/wake cycle. While the cause of narcolepsy is not completely understood, current research points to a combination of genetic and environmental factors that influence the immune system. An ongoing study at Stanford=s Center for Narcolepsy may give even further insight into the factors that lead to narcolepsy.

The sleep disorder itself, though, often takes years to recognize in patients. For people with narcolepsy, the primary symptom is Excessive Daytime Sleepiness (EDS). People experiencing EDS feel an overwhelming sense of tiredness and fatigue throughout each day regardless of the amount of sleep that she or he has had the night before. Because the sleep wake patterns are disrupted, most people with narcolepsy rarely get a Arestful@ sleep. Often, a person with narcolepsy will experience micro-naps. The individual will literally fall asleep for a few seconds. Another common occurrence is a sleep attack, an overwhelming urge to sleep. Because EDS is the most common symptom, it is also extremely frustrating. Many medical conditions result in fatigue, thus physicians might not consider narcolepsy unless the patient uses the words, Atired,@ Atiredness,@ Asleepy,@ or Asleepiness.@ A great tool for someone who believes that she or he might have a sleep disorder is the Epworth Sleepiness Scale. This simple test, developed by Dr. Murray Johns at Epworth Hospital in Australia, allows a person experiencing excessive daytime sleepiness to get an idea of the severity of her or his condition.

Beyond EDS, most people with narcolepsy experience abnormal REM Sleep. These unusual patterns are the cause of narcolepsy=s other symptoms. It is also impossible to recognize abnormal REM without the sleep lab tests that are used to diagnosis narcolepsy. REM intrusion into daytime wakefulness is the cause of the other three recognized symptoms: cataplexy, hypnogogic hallucinations, and sleep paralysis. Some people have all of the symptoms while others have only one or two.

The most common and serious of these three is cataplexy. A person with cataplexy will have her or his knees buckle and even give way when experiencing a strong emotion – laughter, joy, surprise, anger. Others with cataplexy might have their heads drop or jaws go slack from the same kind of stimuli. In the most severe types of cataplexy, a patient literally falls to the ground in a state of complete paralysis which might last a few seconds or a few minutes. During a cataplexy event a person has no reflex or voluntary muscle control. The episodes are triggered because the individual=s body thinks that the emotional stimuli are the beginnings of REM Sleep. During REM the human body goes limp so people do not act out their dreams and hurt themselves or others.

Another symptom tied to Adreaming@ is hypnogogic hallucinations. These events are vivid audio and visual events that a person with narcolepsy experiences while falling asleep, or while awakening. Often the hypnogogic hallucinations are highly realistic and terrifying. Because the REM is intruding into a time period when the body is leaving or entering wakefulness, the brain tends to treat these images as real, rather than recognizing them as dreams. Hypnogogic hallucinations can also happen when a person with narcolepsy is dozing during a sleep attack or a micro-nap.

The final symptom that people with narcolepsy can experience also bridges the normal sleep/wake boundary. Sleep paralysis also usually takes place when the individual is falling asleep, or awakening. Although the person is still conscious, the body triggers the limpness associated with REM Sleep. As a result, the individual is completely unable to move. She or he is literally paralyzed for a brief period of time. While the experience is completely unnerving, it rarely presents a true danger to the person with narcolepsy. This can be particularly terrifying when it is accompanied by hypnogogic hallucinations. Nonetheless, it is one more example of how difficult it can be for a person with narcolepsy to function.

The primary treatments for narcolepsy are stimulant drugs to aid in wakefulness and sleep aids to assist at night. Anti-depressants and Sodium Oxybate are common medications used to control cataplexy and other REM Sleep Intrusion symptoms.

Narcolepsy can only be diagnosed definitively with a set of sleep studies. A patient would need to have an overnight Polysomnogram (PSG) and then stay the next day for a Multiple Sleep Latency Test (MSLT).

While new discoveries are being made about narcolepsy and other sleep disorders, life with narcolepsy remains difficult for many people with the condition. In many ways narcolepsy is an invisible disability. The person with narcolepsy appears to have nothing wrong with her or him, but the EDS and other symptoms, even for diagnosed and treated people with narcolepsy, can make it nearly impossible to do even simple tasks. Narcolepsy Network hopes that the information, resources, and support provided here on our site and elsewhere through conferences and events will provide people with narcolepsy both hope and a voice.