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Idiopathic Hypersomnia
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crisberube posted:
Hi,,,,I am 24 and have just finally went to the doctor about two months ago about my daytime sleepness. I have been falling asleep more and more often during the day and while driving which scared me. I had a sleep study done to rule out sleep apena and narcalepsy. No sleep apena which is good news. My MSLT though was not normal. I had an avarge time to fall asleep as a 2.7. No REM sleep was entered which is also good news.
I have been looking back and reliaze that I have been having problems for a while now. They say I have idiopathic hypersomnia. The doc is putting me on riddlin to see how that helps me. Not really sure what else to expect. Anyone know if this gets worse or better> Any thing I can do to help with the symptoms? Any personal stories.....any infor would be great!
Thanks
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flufflover responded:
I read your story and can empathize with you. I have a similar problem. What I didn't understand,was that you said having no REM sleep was good. It was my impression that was not good. At any rate, with your diagnosis, if the ritalin doesn't work, your insurance company should pay for Provigil which works beautifully for me. It's very expensive (over $1,000. a month) so you must have insurance. Idiopathic Hypersomnia is the exact ICD code they want and need. Good Luck. We're in that gray area, but I know the provigil will work!
 
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crisberube replied to flufflover's response:
So i guess i need to clear some things up. My night study was good. I sleep well and went into normal REM sleep. During my daytime sleep latency test whereI took 5 naps is where there were some abnormal findings. A normal perosn should not eneter REM sleep in 20min. 20min is all that is given to fall asleep during these daytime test. So thats why its good. If i fell asleep and went into REM during 2 of the 5 naps i would be considered narcoleptic. Hope thise clears things up a little.
And I go to the doc. on wend. the ritlain was messing with my heart havining chest pain, shortness of breth and racing heart. Stoped taking it abd an starting to feel better in that sence but still really tired. So maybe we will try the Provigil. Thanks
 
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Noansweryet replied to crisberube's response:
I am a 52 year old female with a similar problem but with sleep apnea. I didn't go into REM fast enough during the MSLT study to rule as narcolepsy, so I had the lumbar puncture to retrieve brain fluid to test for narcolepsy...still inclusive. I've tried Provigil and Nuvigil as well as Wellbutrin (slight stimulant). I'm currently on1/2 of a 50mg Nuvigil daily. It does help me stay awake more though I'm still exhausted/fatigued. I've slept a lot my whole life but it has progressively gotten much worse in the last couple of years. I've worked with several doctors, had about eight sleep studies, two daytime studies, UPPP surgery along with my tonsils removed, tried an oral appliance for sleep apnea, now back on CPAP. I feel your pain. Just wish we could find some answers for this idiopathic hypersomnia.
 
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used2bethin responded:
I just posted to the Resources section here with a link to the Living with Hypersomnia website and an awesome, active group on Facebook that has offered me great info, help and support. I highly recommend you join and pose any questions there if you are struggling with daytime sleepiness or have a diagnosis of Idiopathic Hypersomnia. https://www.facebook.com/groups/MajorSomnolenceDisorder/


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