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.
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