Fibromyalgia xyrem
Common Questions and Answers about Fibromyalgia xyrem
fibromyalgia
I've had fibromyalgia for 5 years now and the insomnia part is out of control. Saw a new sleep doc, and I don't know how I can do what he wants me to do! I did a sleep study - I had, as they put it, extremely light apnea only when I had nightmares. But since my doc wants to try me on xyrem, he said I have to use a bipap - and just found out yesterday that he needs what he calls "full compliance" - which in his words is having it on 7 hours straight, every night, no matter what.
This is not a question, but a comment. My husband has been on Xyrem since the fall of 2005. He now has a considerable amount of central sleep apnea and is being removed from Xyrem to prove that the apnea is indeed coming from the drug. He was diagnosed with narcolepsy, but I have never been real convinced of that because he has always been sleep deprived and depressed. The depression he would not admit until just the last year, and with him it is an "off-limits" subject.
I'm here! Xyrem--ghb same thing. Yes tried to get clean I just want more and more and more and more how do i stop!!!!!!!!!!!!!!!!!!!!!!
BUT, I have had SO many medical problems during the last couple years with these stimulants, that I am literally TERRIFIED to take this Xyrem! A lady called me from Xyrem letting me know the process before shipping this medicine, and I mentioned to her that I have an EXTENSIVE family background of heart related problems. I have not had them myself but it follows both sides of my family (both my grandparents, both my parents, and my brother who is only 28 (and a year and a half older than me)).
ve been incredibly stupid and smoked a joint earlier, without putting any thought to the effect it would have on my xyrem intake prescribed for narcolepsy). I had quite a bad reaction (couldn't walk at one point), so it won't be doing it again. I'm now concerned about how long I'll have to wait until I can use xyrem again. I'm guessing the within 24 hours s a massive no no, but how about the next night (48 hours)?
but now when im off the xyrem i have insomnia. which i dont understand if i am narcoleptic? Please give me some advise on what i need to do concerning this med and what i can do if i stop it where my sleep is concerned. When i'm on xyrenm i can stay awake all day, but when i'm off i can not sleep at night and sleep all day and totally exhausted. PLEASE HELP!
About a year and a half ago I did a sleep study and was diagnosed with narcolepsy. First, they advised me to try several different stimulants, but each one made me go insane. I shook constantly, I went from smoking a little less than a pack a day to 2 full packs a day, I talked constantly, I was panicky, etc. Then, my doctor suggested Xyrem. Here's where things got bad. I took it as prescribed, slowly building up my dosage, until I got addicted to the feeling it gave me before I fell asleep.
maybe i'll have to try those. i take xyrem. It throws me for one heck of a loop i feel so stoned when i'm on it its the same as GHB. But i still cant sleep. I have such a hard time but then i'm tired all day. i need something that will make me sleep. I think i need some heavy meds that will wORK!!!!
My only suggestion is please don't mess with Xyrem they say its a mircile drug I am telling u its the devil make sure you really research it i promise your symptoms will become worse. Even the long term effect are horrible please watch what they want to put you one ask for a week to research what ever they decide to put you on.
ve been diagnosed with narcolpsy. same symptomd as you now i take xyrem and i still cant sleep at night this *****.
However, no one has been able to answer the question about improving the stages I need to. I take Xyrem at night now so that I have two four hours blocks of solid sleep. The first 2 weeks I took it, I felt better than I had in over 10 years. (I was on Xyrem during the last two sleep studies.) After that, I returned to the unrefreshed sleep.
I don't drink alcohol and I make sure that I don't eat at least 2 hours before I go to bed.
I do appreciate your respose.
It *****, plus i was in accident about month ago, and back was messed but went away, i think the codeine and done was masking it, now i switch to suboxone and neck is killing me and headache behind eyes, as i turned head sharply to avoid airbag, that they said would have broken my nose, also i have fibromyalgia, back pain (scoliosis)! nerve pain in general! The oxys blocked the pain, lol! yet again i was never this bad! IT *****!!!!! Thank you so much everyone, godbless and namaste.
The doctor at the sleep disorders center tried me on Xyrem. My insurance company paid for the Xyrem, so I tried it. For about two months I awoke refreshed and felt fantastic; then the Xyrem became less and less effective, until it did not work at all. During a productive night's sleep, growth hormone is being made.
I take Xyrem for narcolepsy - my sleep issues are controlled. The cold feeling can happen anywhere it is less than 75 degrees. So it is more a going out thing since our house is 75 degrees and I am comfortable here
Leaving the house and going places is the issue, in the summer everyone has their Air Conditioning cranking, and in winter no one has their thermostat set to 75.
i had always heaard that xyrem was the best thing for sleep for fibro, but it is really hard to get---then i read that if you can't get xyrem, baclofen is the next best thing.
i still don't sleep fantastic, i wake up way too early, but i don't wake up feeling like i have been run over by a truck anymore, either, except on a rare occasion.
i also take vyvanse, which is an add medication. it has done wonders for me as far as my energy goes.
When we seen her pulmonologist they put her on a medicine called xyrem and I can honestly say that has been a blessing. Her cataplexy is controlled as well as her sleep she still has to take provigil during the day for a stimulant. But the best thing about the drug is u take it at night in 2 doses then by morning the medicine is out of your system so no unwanted side effects. You might want to check with your doctor about it and you can go to their website for more info it is www.xyrem.com...
Current treatment involves Adderall and Effexor to try and eliminate Excessive Daytime Sleepiness, and Xyrem at night for disturbed sleep pattern and cataplexy. I was a research patient in the clinical trials of both Provigil and Xyrem. Hope I might be able to help some other People With Narcolepsy through sharing my experiences.
To supplement the modofanil, you might want to discuss adding a shorter acting stimulant like aderall (not XR) or maybe Xyrem for deeper sleep at night?
i am so depressed and cant get out of it im on adivan, vyvancs, welbutern, triliptal and celeax and its not helping not to mention all the other meds im on crestor, hctz, xyrem.
Have they prescribed anything to help you sleep? I have auto-immune disease, thyroid disease, fibromyalgia, Reynaud's .Phenomenon and back and neck injuries and I don't sleep at all pwithout meds. I have a lot of chronic pain and I take 1000 mg of hydrocodone, plus neurontin, plus temazepam and I am lucky to get 3-4 hours of sleep. I don't get REM sleep, don't dream vey often. It is very debilitating.
The doctor, that changed my life or I should say saved my life during the daytime hours when he started me on provigil, is suggesting I try Xyrem. He gave me some literature on it and wants me to call him next week. You are right about taking a long time to diagnosis the pneumonia. I went to the em emergency room three times; early Saturday morning, again Saturday evening then on Sunday evening all with 103 to 104 fever.
i have fibromyalgia amongst other complaints.fro about 2 years i have had a swollen abdomen-lumpy and tender which progressed to sore and protruding ribs.have had ct and mri scans which gave no clues.doctors seem to ignore symptons,now i have a feeling of tightness around my ribs and am sore all around them.it feels like ribs are digging in me.
I have fibromyalgia and so does my mother. From what I have learned it can stay the way it is now for the rest of your life or it can get worse. Try to stay on a daily routine sleep when your tired and don't overdue yourself, the best you can do is take good care of yourself hoping to help it not get worse. Very true, as bad as it gets for you.
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