Fibromyalgia xyrem

Common Questions and Answers about Fibromyalgia xyrem


Avatar n tn //
Avatar f tn 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.
Avatar n tn My question is about Fibro medications and wanting to hear from others' experiences during pregnancy w/fibromyalgia (or chronic pain issues). I also NEED encouragement how to taper off of valium (I am down to from 20 mg to 10 mg a day for anxiety & muscle pain, but feel stuck here) I am probably about 3weeks along and happy about it!!
Avatar n tn I have been diagnosed with Chronic Lyme (with no positive blood test) by a couple of doctors, I have been diagnosed with Fibromyalgia by a couple of doctors, and with Chronic Fatigue syndrome by another. I got considerably worse for 3 1/2 years. The worst symptom for me has always been insomnia. The difference in sleeping and not sleeping to me is like living and not living. The doctor's started me out on Xyrem 4.
Avatar f tn I was initially diagnosed with fibromyalgia and CFS. After trying lots of different sleep meds I was put on Xyrem several years back. Stayed on that for about a year or two but have been off of it for a year, almost a year and a half. Through strict, disciplined management, I no longer have many of the fibromyalgia and CFS symptoms, however, this thyroid issue remains. -Finally, I am a 28 year old female. If anybody has had any tips, I welcome your experience, advice, thoughts, etc.
Avatar n tn of ambien ,(the only sleep med i can take without serious side-effects i've tried everything else including xyrem an investigational drug with GHB. that was horrible), to start working as well as the first day i tried it? i'm taking 20 mg. now with the advice of a doctor but i would like to be able to cut down and still be able to get a full nights rest. is there some way to trick my body or "detox" it so it will act as it did in the beginning?
Avatar f tn but my neurologist wants to put me on an additive called Xyrem. you should ask about it. i havnt started it yet, but who knows, it just might help.
Avatar f tn 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!!!!!!!!!!!!!!!!!!!!!!
Avatar n tn I would like to learn as much about this as possible and desire to be a study participant to that end. Have read that controversial drug xyrem has been used for this esp in connection with fibromyalgia, itself in question as a diagnosis. I read only one mention of alpha delta intrusion correlating with anxiety. . I took one half mg ativan every morning for four years or so. Could this be enough to depress my rem sleep? I do not wake rested.
Avatar n tn Paxil, nexium, marinol as needed, klonipin as needed, Suboxone as needed, zelnorm, xyrem. I don't believe these symptoms are med related as they have continued through many changes in my meds. Of course I have tremedous musclular pain throughout my body. I am also very weak. My hands tremble at rest and in activity. My legs also tremble during action for instance when holding my foot on brake or eccelerator, when walking down stairs or if I bend at the waist to pick something up.
443434 tn?1255894833 The only medication our research shows might help more is Xyrem. It was trialed for Fibromyalgia and Narcolepsy but the gov. only approved for Narcolepsy. Studies showed over 80% of Fibromyalgia pts had dramatic improvement. Problem is it is regulated (unnecessarily IMHO) more than any drug we've ever seen. The fact that Fibromyalgia responded so dramatically makes sense because Fibromyalgia pts are KNOWN to have a sleep disorder.
Avatar f tn 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.
Avatar f tn 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.
Avatar n tn My sleep Doc is not much help, he just writes more meds. He has tried in the past to get a patient on xyrem but was unsuccessful and would not even try to procure it for me. I understand there is a new class of sleep drug that has been through all the clinical trials and will be submitted to the FDA this year for a NDA. It is said to work on a completely different GABA receptor than what is currently available. I sure am looking forward to trying this out.
393587 tn?1211056644 i'm on Cymbalta, Depakote, Xanax, Synthroid, Hydrocone (as needed) and Skelakin once a nite for my fibromyalgia. and toporol for my premature ventricular tacharcydia. i have followed up with a neurologist, cardiologist, endochriologist, rhumetologist, and now the neurologist reffered me to a psychaitrist. i see my primary car physician at least once a month. no one will stop concentrating on their specialty, and put the big picture together.
407149 tn?1211736107 Recently, my sleep specialist switched me from Ambien/Prosom to a very powerful drug, Xyrem. The reason for the switch was that my night time sleep had become greatly disturbed, and my day/night sleep cycle was completely out of whack. Like most posters here, I have been having this "fume-smell" problem for over a year now. It first began last summer, when, over a three-day period, it kept getting worse and worse.
Avatar f tn I suffered with painful joints all over my body which took hospitals 2 years to diagnose as Fibromyalgia. At the time I was still working full time and running a home with a family. In the end my body gave up, and I collapsed with total fatigue, followed by shingles and then anxiety and depression. The dreaming started at around the same time. Prescribed Effexor to control panic attacks which helped greatly, still taking them even now and probably will have to for ever.
620923 tn?1452919248 I have fibromyalgia and in my support group it has been found that 70% of FM suffer's have cord compression in their neck and many suffer from this chiari thing. I've expeirenced numbness and tingling and painful scalp as though my scalp is alive with pain. Not a headache, but in my scalp. I get daily horrid neck/headaches. I have weakness and a cerebral palsy type gait. I've had a cervical mri where it just states sumthin like my cfs space is partially effaced or sumthin like that.
Avatar n tn You may have fibromyalgia and it can disturb your sleep. A good Rhumatologist can help BUT he must be a specialist in Fibro. Dr Daniel Wallace in los angeles is a good choice. J) a hot bath or tub about 1 or 2 hours before bed time, ( and the sex!) will help relax you. I am free of fibro now but i had it before and a compounding factor was sleep apnea. That got resolved too.