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Idiopathic Hypersomnia
So, I know this group is primarily for Sleep Apnea, but along the same lines of sleep disorders, just wondering if anyone out there has Idiopathic Hypersomnia... or narcolepsy. The fun is having both... IH and OSA. Anyone???
Views: 778
Replies to This Discussion
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Permalink Reply by Melodie on
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Leslie,
Hi! This is Melodie, and I have both Central Sleep Apnea AND Narcolepsy! I literally fall asleep during the day without warning and have been put on a medication called "Provigil", which was designed just for patients with Narcolepsy. But one drawback to the Provigil is that whenever I take a whole tablet in the morning, it keeps me from being able to sleep that night and sometimes for 2 nights. Ironically the physicians are also giving me Seroquel 150 mg at bedtime for SLEEP! This is keeping me and my body in a very weird place and I am having severe sleep disorders!
My pain doc changed my dosage of the Provigil just this week from 200mg per day to 100 mg per day in hopes that it will keep me awake during the day - or whenever I KNOW I have to be fully alert, but yet allow me and my body to calm down enough to be able to sleep at night. I am still having problems, but last night I did sleep for about 6.5 hours.
I had to take a Provigil 100mg, whole tablet, this morning - as I have to finish up some Social Security Disability (SSD) paperwork to appeal my disability case. I also have numerous illnesses besides the narcolepsy and central sleep apnea that now prevent me from working at all.
Yes - it is such a fun life!!!!!!!!!!!! LOLOLOL - I hope you know I am kidding................But seriously, it is very difficult having both the narcolepsy and Central Sleep Apnea (where your brain does NOT tell your body to breathe), among other illnesses and fighting between staying awake and being able to sleep at night. Taking medications for both is very frustrating to say the least - you feel like you are in a constant battle trying to rest and trying to stay awake.
Hope this doesn't sound too nutty - but this is what I am dealing with personally. Also, please do post again and let me know what YOUR physician is doing for YOUR treatment.
Thanks,
Melodie (Mel) Aultman-Morris
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Permalink Reply by RockRpsgt on
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Dement writes in his book on how the alien abduction stories could be related to the hallucinations that go along with narcolepsy.
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Permalink Reply by Lauren Major on
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Hi Melodie,
I don't have apnea but I think Narcolepsy, EDS, IH? I don't know what to call it anymore. I also take Provigil and Nuvigil, both twice a day. By noon I have to take it again or I'm too tired to function. I understand about the nighttime! I have been taking Clonzapan at night to go to sleep and still wake up exausted.
Melodie said:Leslie,
Hi! This is Melodie, and I have both Central Sleep Apnea AND Narcolepsy! I literally fall asleep during the day without warning and have been put on a medication called "Provigil", which was designed just for patients with Narcolepsy. But one drawback to the Provigil is that whenever I take a whole tablet in the morning, it keeps me from being able to sleep that night and sometimes for 2 nights. Ironically the physicians are also giving me Seroquel 150 mg at bedtime for SLEEP! This is keeping me and my body in a very weird place and I am having severe sleep disorders!
My pain doc changed my dosage of the Provigil just this week from 200mg per day to 100 mg per day in hopes that it will keep me awake during the day - or whenever I KNOW I have to be fully alert, but yet allow me and my body to calm down enough to be able to sleep at night. I am still having problems, but last night I did sleep for about 6.5 hours.
I had to take a Provigil 100mg, whole tablet, this morning - as I have to finish up some Social Security Disability (SSD) paperwork to appeal my disability case. I also have numerous illnesses besides the narcolepsy and central sleep apnea that now prevent me from working at all.
Yes - it is such a fun life!!!!!!!!!!!! LOLOLOL - I hope you know I am kidding................But seriously, it is very difficult having both the narcolepsy and Central Sleep Apnea (where your brain does NOT tell your body to breathe), among other illnesses and fighting between staying awake and being able to sleep at night. Taking medications for both is very frustrating to say the least - you feel like you are in a constant battle trying to rest and trying to stay awake.
Hope this doesn't sound too nutty - but this is what I am dealing with personally. Also, please do post again and let me know what YOUR physician is doing for YOUR treatment.
Thanks,
Melodie (Mel) Aultman-Morris
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Thanks for the links and all the info on here, I"m glad I found this site! Sounds like IH for me since I don't have cataplexy. I'm a teacher, have a side business, 3 kids, I have to work, I just want help. You are very appreciated!
Rock Hinkle said:
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Permalink Reply by D. W. Conn on
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I have a difficult time with that combination of diagnosis. When one has OSA it mimics Narcolepsy. When we have a patient that continues to have Idiopathic hypersomnia following CPAP treatment after 90 full days of treatment they come back for a full polysomnogram with their current CPAP setting followed by an MSLT. This is rarely done. Now I have had a patient that Central Sleep Apnea that the MD gave a diagnosis of Idiopathic Hypersomnia.
I can imagine what a nightmare it would be to have these two disorders.
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Permalink Reply by Leslie Scott on
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I was on cpap for 6 years without improved fatigue. We tried everything. Changing meds. I finally had just thrown in the towel and blamed the fact that I have Fibromyalgia. (and yes, I have alpha intrusion too)
It wasn't until they decided to treat my ADD that they figured out about the Idopathic hypersomnia. (it was almost 4 months after I started the meds when my dd's psychiatrist realized what it was, she actually thought narcolepsy at first) I was started on Adderall. I went from sleeping 15-18 hours a day to being awake 15-18 hours a day. (and it didn't do a thing for my ADD) I have since switch to Vyvance, but to this day, if I don't take my medication, I will sleep 15-18 hours. (today is the perfect example, I have been off the last 2 nights because of weather, and I have slept all day and then slept all night as well). I had to take my meds when I got to work tonight or I would have been out. (and I was only awake about 2 hours through out the day) I did have an MSLT done. My problem was not ever going into REM. I would fall asleep in less than 2 minutes, but never went into REM (during the MSLT or the PSG). The doctor scoring my study actually said to me 'I don't have any idea what to do with you'
Les in CO
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Permalink Reply by Judy on
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Ow, Leslie!!! That had to be the LAST thing you wanted to hear! My sympathies w/your struggle. You're a tough cookie to make it thru all this!
Leslie Scott said:... The doctor scoring my study actually said to me 'I don't have any idea what to do with you'
Les in CO
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From 2 MSLTs, no one knew what to call it. I also did not hit REM, but fell asleep all 4 times in less than 2 min. No doctor here knows anything anout Narcolepsy or IH. I was told I had Narcolepsy from a blood test, although I know find out that isn't the only way to tell. I don't care what they call it, I just want help. I"m on Provigil and Nuvigil, both twice a day. Adderal and Ritalin did nothing for me. Has anyone tried Xyrem? (sp?)
Leslie Scott said:I was on cpap for 6 years without improved fatigue. We tried everything. Changing meds. I finally had just thrown in the towel and blamed the fact that I have Fibromyalgia. (and yes, I have alpha intrusion too)
It wasn't until they decided to treat my ADD that they figured out about the Idopathic hypersomnia. (it was almost 4 months after I started the meds when my dd's psychiatrist realized what it was, she actually thought narcolepsy at first) I was started on Adderall. I went from sleeping 15-18 hours a day to being awake 15-18 hours a day. (and it didn't do a thing for my ADD) I have since switch to Vyvance, but to this day, if I don't take my medication, I will sleep 15-18 hours. (today is the perfect example, I have been off the last 2 nights because of weather, and I have slept all day and then slept all night as well). I had to take my meds when I got to work tonight or I would have been out. (and I was only awake about 2 hours through out the day) I did have an MSLT done. My problem was not ever going into REM. I would fall asleep in less than 2 minutes, but never went into REM (during the MSLT or the PSG). The doctor scoring my study actually said to me 'I don't have any idea what to do with you'
Les in CO
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I have been going to my local sleep center since 2007, I have been on CPAP for mild to moderate apnea. It doesn't seem to help me stay awake during the day. I do not have Narcolepsy. But I have tried every CPAP mask available but I still find that I am trying to adjust them all night long, I use CPAP every night in spite of the discomfort and still I cant stay awake. To complicate the sleep disorder I have chronic back pain after having a spinal fusion from T4- L5, and chronic back pain that keeps me awake often at night. I also have had surgery UPPP and it did not help. I am miserable. I do take Providual 200 mg daily, on a higher dose I feel aggitated, and shakey and really do not accomplish more. I am so tired I just wish I could sleep when I need to , but I work full time so that is not a possible. I am 57 years old and have been told by my supervisor that I should be looking into disability, but I really don't want to. But I really am just there in body at times, not productive at all, I fall asleep at my computor, and type gibberish. Any suggestions from any one?
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