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Email Nicole: njeray@aol.com |
Narcolepsy
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Wondering why there is a whole section on Narcolepsy? |
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This is because Narcolepsy is a huge part of my life. It has taken me years to figure out how to handle this crazy disorder and yet each day is still a struggle. Narcolepsy is a sleep-wake disorder that affects me night and day. During the day I fight excessive sleepiness and cataplexy. Cataplexy is muscle paralysis triggered by strong emotion. Degrees of paralysis vary from muscle weakness to full body collapse. A cataplexy episode may last anywhere from seconds to minutes depending on the level of excitement and ones ability to control the emotion that triggered the attack. During the night my sleep is very interrupted because my sleep cycle tends to be in REM (rapid eye movement, dream state). Sometimes I experience sleep paralysis and hypnogogic hallucinations. I have a classic, text book case of Narcolepsy. Other people with Narcolepsy may not experience all of these symptoms and some may have other problems like sleep walking, sleep eating, or can't get out of bed. People with Narcolepsy have no or a small number of hypocretin cells in their hypothalamus. We don't know why this is or how these cells died. |
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Thankfully, there are medications that help treat the symptoms of narcolepsy. I take Xyrem (www.xyrem.com) to treat my narcolepsy. Xyrem has been approved for the treatment of cataplexy and excessive daytime sleepiness associated with narcolepsy. However, medicine is not enough. I have to follow certain "rules" for me to feel my best. Some days are better than others. Some of these rules are drink lots of water, limit my carbohydrates, stay away from sugar, eat small meals more often, schedule in a nap before important activities, don't over schedule myself, stay away from alcohol. It is also necessary for me to not have important discussions when I am sleepy or after 7pm because my brain doesn't work as well and my patience is nearly non-existent. I am lucky to have a supportive family and friends. You can read more about my life with narcolepsy in this recent WGN interview.  Donate $10.00 or more to the Narcolepsy Network and receive a sleep awareness bracelet along with personalized, autographed 4x6 picture of me. To find out more about this offer, please click here |
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For More Information on Narcolepsy |
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For more information on Narcolepsy visit www.narcolepsynetwork.org For information on importance of quality sleep visit www.sleepfoundation.org Questions for me. I know a lot about anything related to sleep. My email is njeray@aol.com In the subject line put SLEEP so you don't get deleted. Help others with Narcolepsy learn how to handle their illness, help others get diagnosed, help educate the world on the importance of quality sleep… |
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