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Re: Unusual narcolepsy...or just tired?

Posted by Snoozer on August 13, 2001 at 20:20:59:

In Reply to: Unusual narcolepsy...or just tired? posted by DozyGuy on August 13, 2001 at 11:23:51:

DozyGuy & Student,
Don't give up! Awake?InAlabama gave you good advice. I went through over 6 years of struggling to get my doctors to listen to me and to give me the right treatment. You sound a lot like me. I don't have Cataplexy or HH, but I have debilitating EDS. However, I do find I'm refreshed after short naps. Keep in mind that few people have ALL of the classic symptoms of Narcolepsy. I know a diagnosis of Idiopathic Hypersomnia can be even more frustrating, because it isn't as clear cut as Narcolepsy. I went through two sleep studies and was given that diagnosis. Since I don't immediately go into REM, my first neurologist dismissed my concerns and said I had nothing wrong. The second sleep study showed fragmented sleep and that I was borderline on my sleep latencies (I didn't always fall asleep under 5 minutes). My final diagnosis was, (according to the neurologist's records) "probably a variant of narcolepsy", but he wrote down Idiopathic Hypersomnia. My father and my brother both have narcolepsy and were diagnosed in their late teens. I was 40 before I started having severe symptoms. Fortunately, my doctor was willing to give me Provigil. I have tried dexadrine and ritalin and I didn't do well on them, but my other family members with Narcolepsy did fine most of their lives on these other meds.
Hang in there and be persistent in finding a board certified sleep doc.
Good luck and keep us posted.

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