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Sleep Disorders

Narcolepsy

05/10/2004

Question:

I just found out that I have Narcolepsy. My doctor said that it was in the early stages, and will worsen over time. What should I expect in the future? He also said that we can treat it. What is the treatment, or what type of medicines are given?

Answer:

Narcolepsy is a condition receiving a lot of media attention lately due to progress being made in better understanding why some individuals develop this condition. Narcolepsy is characterized by excessive sleepiness and abnormal intrusions of rapid eye movement (REM) sleep phenomena into awake time. Typically, during REM sleep, our muscles are inactive (except for our breathing muscles and eye muscles) and unable to move. In individuals with Narcolepsy, this "paralysis" of muscles may occur during wakefulness (known as cataplexy, usually brought on by strong emotions) or during transitions between sleep and wakefulness (sleep paralysis). In addition, dreams may intrude upon these times as well (known as hypnagogic or hypnapompic hallucinations). Other symptoms of Narcolepsy may include poor nighttime sleep and automatic behaviors (performing tasks without being aware of what you are doing or having recall of having done it).

While true cataplexy is considered very stronger evidence of Narcolepsy, the other symptoms listed may be seen in individuals without Narcolepsy. Furthermore, individuals diagnosed with Narcolepsy may not have any or have only some of the other associated symptoms. The diagnosis of this condition is usually determined by a Sleep Physician after taking a thorough history, performing an examination, and obtaining objective testing - a sleep study and a daytime nap study (known as a Multiple Sleep Latency Study).

Narcolepsy affects about 1 in 2000 people. The cause of this condition is not completely clear, but recent data suggests some individuals with Narcolepsy, especially those with cataplexy, may be lacking in a specific group of brain chemicals (called hypocretinins or orexins). Why this happens and how this causes the symptoms of Narcolepsy is not clear at this time, but further research in this area may well provide some answers. The symptoms of Narcolepsy are somewhat variable. While some individuals may experience progressive sleepiness that eventually stabilizes, others may notice a gradual improvement in their sleepiness over time. However, all individuals with Narcolepsy will have some degree of sleepiness for the duration of their lifetime. The other associated symptoms mentioned above also may vary over time, but many notice a gradual improvement the passing of years.

At present, Narcolepsy cannot be cured, though it can be controlled. The available treatments focus on symptom relief and improving one`s quality of life. Simple maneuvers, such as good sleep hygiene (please see the website for details) and scheduled regular naps may help tremendously. Along these lines, it is important for those with Narcolepsy to avoid situations that may worsen their symptoms - such as doing shift work, having a job that requires night-time calls, or any job that requires continuous attention for long periods of time without breaks.

Specific treatment for Narcolepsy is usually geared towards symptom relief. For the problem of excessive sleepiness, stimulant therapy is typically recommended. There are a variety of medications available for this and which one is right for you is best determined after consultation with your Sleep Specialist. Treatment for cataplexy had been problematic in the past, with antidepressants being used with variable success. Recently, gamma hydroxy butyrate (trade name of Xyrem) has been FDA approved for the treatment of cataplexy and seems quite effective at relieving this symptom.

To learn more about Narcolepsy or other sleep disorders, please visit the American Academy of Sleep Medicine`s website at www.aasmnet.org . In addition to information, the website contains a list of Sleep Centers across the country so that you may locate one near you. The Narcolepsy Network`s website, www.narcolepsynetwork.org, also provides information and links to support groups for those with this condition. Good luck and here`s to good sleep!

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Response by:

Case Western Reserve University Dennis Auckley, MD
Associate Professor of Medicine
Department of Medicine
School of Medicine
Case Western Reserve University
Dennis Auckley, MD