What is Narcolepsy?
Information Courtesy of Narcolepsy Network
www.narcolepsynetwork.org
Narcolepsy is a medical disorder that impacts approximately 1 in 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. Globally, narcolepsy’s impact ranges from .2 per thousand to as high as 1.6 per thousand according to Stanford’s Center for Narcolepsy. The disease is a sleep disorder, involving irregular patterns in REM 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 most people with narcolepsy, the primary symptom is excessive daytime sleepiness (EDS). Essentially, people with excessive daytime sleepiness feel an overwhelming sense of tiredness and fatigue throughout each day; often regardless of the amount of “sleep” that she or he has had the night before. Because the REM patterns are disrupted, most people with narcolepsy rarely get a “restful” 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 excessive daytime sleepiness is often 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, “tired,” “tiredness,” “sleepy,” or “sleepiness”. A great tool for someone who believes that she or he might have a sleep disorder is the Epworth Sleepiness Scale (ESS). This simple test, developed by Dr. Murray Johns at Epworth Hospital, allows a person experiencing excessive daytime sleepiness to get an idea of the severity of her or his condition.
Beyond excessive daytime sleepiness, most people with narcolepsy experience abnormal REM sleep. These unusual patterns are again the cause of the EDS and narcolepsy’s other symptoms. It is also impossible to recognize abnormal REM without the sleep lab tests that are used to diagnosis narcolepsy. While abnormal REM and excessive daytime sleepiness are the most common symptoms, many people with narcolepsy experience at least one of the other three recognized symptoms: cataplexy, hypnagogic/hypnopompic hallucinations, and sleep paralysis. Some even have all of the symptoms. All of the other narcolepsy symptoms are a result of the person’s body trying to get REM sleep.
The most common of these three is cataplexy. Often, a patient 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 attack the person with narcolepsy has no reflex responses. The attacks 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 hurt themselves or others while dreaming. Unfortunately, with the disrupted REM of narcolepsy, the body is confused and triggers cataplexy attacks during the daytime.
Another symptom tied to “dreaming” is the hypnagogic/hypnopompic hallucination. These events are vivid audio and visual that a person with narcolepsy experiences while falling asleep, or while awakening. Often the hypnagogic/hypnopompic hallucinations are highly realistic and terrifying. Because the REM is intruding into a time period when the body is leaving consciousness (hypnagogic hallucinations) or is entering consciousness (hypnopompic hallucinations), the brain tends to treat these images as real, rather than recognizing them as dreams. Hypnagogic/hypnopompic 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 is 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. 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 are also a common medication used to control cataplexy. Narcolepsy can only be diagnosed definitively with a set of sleep studies. A patient would need to do 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 excessive daytime sleepiness and other symptoms even for diagnosed and treated people with narcolepsy make it nearly impossible to do even simple tasks.
This information is provided courtesy of the Narcolepsy Network in hopes that the support, information, resources, conferences and events and provided by Narcolepsy Network, and your local support group will provide people with narcolepsy and their family and friends both hope and a voice.
Click link to view or print as a PDF
What is Narcolepsy