Jump to content


Photo

Narcolepsy To Idiopathic Hypersomnia????


  • Please log in to reply
2 replies to this topic

#1 corey91386

corey91386

    Member

  • Members
  • 59 posts
  • Gender:Male
  • Location:Central Ohio
  • Interests:Sports, Family, Feeling Better!

Posted 26 November 2012 - 07:37 PM

My situation is very confusing. I have had 3 psg and mslt studies. My first study was a year and a half ago.I was on pristiq for the study and was diagnosed with narcolepsy. At thtat time I could not except this diagnosis. So I went to the Cleveland clinic for a 2nd study. They made me get off the pristiq for two weeks prior to the study. I was again diagnosed with narcolepsy. So I now started to except it. Well the Cleveland clinic was to far away to drive for checkups so switched to a closer doctor who is very well respected in sleep medicine. He wanted to a study fir his own reference, so iagreed to do a third one. This one on pristiq an antidepressant. I was diagnosed with idiopathic hypersomnia. I fell asleep in all 5 naps but did not enter rem. In previous studies I entered rem on every nap. I do not have cataplexy. He said I could very well have narcolepsy but he can't say that at this time. He said idiopathic hypersomnia is an optimistic approach. Now I am confused! I understand the pristiq can suppress rem but also when you come off antidepressants you can have rem rebound. So. Now I'm clueless. He also said I don't fall asleep as quickly at night as a narcoleptic typically would. 23 minutes it took me.

#2 Hank

Hank

    Member

  • Members
  • 1,573 posts
  • Gender:Male

Posted 26 November 2012 - 08:14 PM

My situation is very confusing. I have had 3 psg and mslt studies. My first study was a year and a half ago.I was on pristiq for the study and was diagnosed with narcolepsy. At thtat time I could not except this diagnosis. So I went to the Cleveland clinic for a 2nd study. They made me get off the pristiq for two weeks prior to the study. I was again diagnosed with narcolepsy. So I now started to except it. Well the Cleveland clinic was to far away to drive for checkups so switched to a closer doctor who is very well respected in sleep medicine. He wanted to a study fir his own reference, so iagreed to do a third one. This one on pristiq an antidepressant. I was diagnosed with idiopathic hypersomnia. I fell asleep in all 5 naps but did not enter rem. In previous studies I entered rem on every nap. I do not have cataplexy. He said I could very well have narcolepsy but he can't say that at this time. He said idiopathic hypersomnia is an optimistic approach. Now I am confused! I understand the pristiq can suppress rem but also when you come off antidepressants you can have rem rebound. So. Now I'm clueless. He also said I don't fall asleep as quickly at night as a narcoleptic typically would. 23 minutes it took me.



My vote is with the Cleveland Clinic- they certainly have a good reputation. If you were off Pristiq for 2 weeks, that would likely be sufficient time to get past the REM rebound. I have Narcolepsy with Cataplexy and some nights I struggle with insomnia- so 23 minutes sounds great to me.

You have 3 studies- 2 votes for Narcolepsy, 1 maybe for IH. You will need to decide which opinion to trust. The treatment options are similar, if not the same. You may just want to focus on treatment and living your life while you get comfortable with which diagnosis seems most accurate to you.

#3 corey91386

corey91386

    Member

  • Members
  • 59 posts
  • Gender:Male
  • Location:Central Ohio
  • Interests:Sports, Family, Feeling Better!

Posted 28 November 2012 - 12:02 PM

Thanks Hank! Yea the doctor I see now studied at the Cleveland Clinic. Idiopathic Hypersomnia and Narcolepsy have the exact same treatment options.