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Old 04-08-2012, 11:28 AM   #1
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oliver88 HB User
nonrestorative sleep

I will attemp to make this as brief as possible in an outline form.

1.) 1997 I became ill suddenly. Bad headaces, shingles, word finding issues/math, sore throat or feeling just on the verge of having a cold etc. My worst symptom that occurred about the same time was waking each morning feeling as though I had never slept even though I was indeed asleep.

2.) Work up for other medical problems yielded nothing. Over time, with persistance, exercise and a fish oil, beta carotene I did get better EXCEPT FOR THE AWFUL SLEEP PROBLEM.

3.) I finally saw a sleep specialist who said my sleep was severely fragmented but did not know why. He put me on Klonopin and it was like a miracle at 1st. Then it wore off and he upped the dose 3 times. Finally, he put me on 800 mg of neurontin but never took me of the klonopin so I unknowingly became hooked on klonopin and still am.

4.) Over the last 12 yrs or so I have done pretty well but have had some severe issues with my sleep at times. I am physically fit, exercise, fish, hike etc. Very active lifestyle so this sleep problem is very debilitating at times.

5.) As I said I am better and do not care if I had CFS or whatever. I have a life to live and just want to feel better so I need some help with this sleep problem.

6.) I recently have had some very long bouts of nonrestorative sleep. I honestly do not know what triggers them. I am still on just klonopin and neurontin. This has happened in the past on occasion and the only way I have found to feel better is to suddenly stop both of them for 2 days. While miserable it seems to "reset things".

Over the past year I have had to do this about 5 times and not with the success I used to have for unknown reasons but still somewhat successful at making my sleep normal again.

I am basically going through a two month stint here where nothing I do seems to work. My sleep has been awful ( no I am not sitting up in bed counting sheep. I sleep but the quality is terrible and I feel like a bus hit me in the a.m. )

My questions are:

1.) Does anyone have experience with Penn University sleep center for this problem or in general?? It is in Philadelphia,PA.

2.) My sleep doc where I live gave me various meds to try in the past including xyrem and gabitril.

I have been reluctant to try xyrem except on 3 occasions due to me being on klonopin. The times I did take it, I did so on a really bad day after poor sleep, eyes hurting ( that is common and miserable for me ). I will say the xyrem seemed to help me awake feeling refreshed.

Any opinion about taking with klonopin. I want to wean off klonopin but cannot do that yet as I already feel terrible. Can xyrem be taken safely with klonopin or not. My sleep doc told me to take half the klonopin. So that is 2 mg. Issue is about day 3 I will have withdrawl so that is not the answer.

Also, is one dose at night possible. I am not sure how me and my wife will work this out if I have to wake up to take a dose of xyrem. But if it works and I feel well I will make it happen.

3.) Gabitril made me spacey and drugged feeling although I did start at 8 mg. Has this med helped anyone with nonrestorative sleep. I know this is a stiff dose. Perhaps 2mg and advance upward? Just any thoughts on this. My job is technical and I cannot be a zombie.

I do not have sleep apnea or other sleep problems nor anxiety nor any other medical issues or problems . So I would only like some answers from someone who has what I have ( I have never met anyone! ) or that may have some good advice on nonrestorative sleep... meds, doctors to see etc.

Thanks and look forward to your thoughts. I have never had such a miserable disorder as this nonrestorative sleep. I have kept my job, married, and keep active but when I have issues for days/wks on end its hard to cope with it. I have no solutions that seem great once my sleep quality takes a nose dive. So again thank you for your insight into this.

Last edited by oliver88; 04-08-2012 at 11:34 AM. Reason: content forgot

 
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Old 04-09-2012, 03:08 PM   #2
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copingandhoping HB User
Re: nonrestorative sleep

Oliver, I have had hypersomnia since about year 2000.
The only thing that helps me is a med called Provigil.
It is outrageously expensive. It just went generic April 1, 2012 and now the generic is way too expensive.
Anyway, that's what helps me.
Best of luck and I hope you find something that works for you. If you do... please come back and share.

 
Old 04-09-2012, 03:26 PM   #3
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oliver88 HB User
Re: nonrestorative sleep

Thanks. I actually did try that medication once to see if it made me feel any better but no luck.

I am seriously thinking about the use of xyrem but am concerned being that I am stuck on 4 mg of klonopin. I can taper off that but it may take almost a year.

Thanks again though!

 
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