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YOUR HEALTH
New treatment for narcolepsy sickness
DEAR DR. DONOHUE: In the early 1960s, after seven years of seeing indifferent doctors, I was diagnosed with narcolepsy and was given Dexedrine, which I still take, and it helps me stay awake during the day. The real villain for me is cataplexy. It is very embarrassing and frustrating not to be able to control it. When it happens, I fall down like an accordion, with complete paralysis of all my muscles. I cannot speak or move. My eyelids close. The longest episodes have lasted 20 minutes. What brings on these attacks? -M.S. ANSWER: Narcolepsy is much more than the daytime drowsiness with which we're all familiar. It's daytime sleepiness so oppressive that people cannot fight off sleep. They nod off involuntarily and in inappropriate and potentially dangerous circumstances, like while driving a car or while busily engaged in manual labor, or in a meeting with only one or two others. Along with sleep attacks, cataplexy is another sign of narcolepsy. It's the sudden loss of muscle control. The jumbled sleep cycles of narcolepsy intrude on brain areas that control muscles. With cataplexy, people might have nothing more than a transient sagging of the jaw. Or the attack can be complete muscle paralysis, with people falling to the floor, unable to move or communicate but still aware of what's going on. Laughter, excitement, intense amusement, anger or some other powerful emotional reaction triggers cataplexy. Narcolepsy medicines, newer than yours, might ward off cataplexy for you as well as control sleepiness. Provigil is one such medicine. Xyrem is a drug whose specific target is cataplexy attacks. It's a restricted drug, and to obtain it, the doctor has to make arrangements with the manufacturer and the druggist. The Narcolepsy and Cataplexy Foundation, 444 E. 68th Street, New York, NY 10021 or the Narcolepsy Network, 888-292-6522, can provide you with the latest information and treatment of this illness. I'd like to alert readers to another association, NORD, the National Organization for Rare Disorders. It's the champion of all those with illnesses that get little attention because of their relative rarity. NORD can be reached at 800999-NORD and on the Web at www.rarediseases.org. Dr. Donohue regrets that he is unable to answer individual letters, but he will incorporate them in his column whenever possible. Readers may write him or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL32853-6475.
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