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narcolepsy suspected

Posted by agp on May 12, 1998 at 03:59:39:

I was diagnosed with sleep apnea and hypopnea in November/December of '97. I have been using a CPAP machine and in spite of various increases in pressure and switching from nose pillows to mask and back again I still lf fall asleep at inappropriate times. I am experiencing bouts of extreme sleepiness, even after 9+ hours of sleep and can fall asleep for a minute to 30 minutes up to a dozen times a day. My doctor now suspects I have narcolepsy and will be tested in the next several weeks.

I have read a number of websites and other literature about narcolepsy and it sure sounds like this is what is going on with me. I believe I began having narcoleptic episodes starting back around 1982-85 and it seems to coincide with the onset of Hashimoto's (auto immune) disease. I do not have full blown cataleptic (rag doll) episodes, but do experience jaw dropping, eyelids dropping, wobbly head and general muscle weakness at times of sleepiness. I certainly do have vivid "dreams" immediately prior to having a sleep attack. (Often this is my only clue as to what is happening.) The need to sleep comes upon me very suddenly, even after sleeping a full night and it seems that the need to sleep, even for a few minutes is totally unavoidable. I also find I will try to continue to write or read through these episodes -- almost like being in a trance.

I am interested in hearing from anyone who is being treated for narcolepsy and hearing your comments on medication, and coping strategies. Can you really have a "normal" life, especially at work? I spend 8-10 hours a day at work seated trying to read and write. For me, this has just been deadly. Do I have any hope of being more productive and regaining the "sharpness" I had before getting sick? I have had this problem all of my adult life and am not sure what is even normal anymore.

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  • Sleep Deprivation due to Sleep Apnea and insufficient sleep are common and can present as insomnia, narcolepsy, or idiopathic hypersomnia. In infants and children sleep problems commonly present themselves as ADD or ADHD.


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