Discussion in 'Fibromyalgia Main Forum' started by caroleye, May 20, 2011.

  1. caroleye

    caroleye New Member

    I'm a disabled senior who has dealt with 5 different auto-immune illnesses since the 80's.

    Over time I had to increase what sleeping aids worked; now I've tried every single one out there. I'm totally exhausted and desperate to find one that will give me some sleep.

    Has anyone used this one? And if so, how did it work for you.

    Thanks for your feedback..................carole
  2. heapsreal

    heapsreal New Member

    The thing is we get a tolerance to sleep meds if we use the same med all the time. I would consider trying something u have used in the past that helped but u havent used in awhile and maybe have 2-3 different meds to alternate between every few days. This is what i do. Also a drug called baclofen which is a muscle relaxer is suppose to be the poor mans version of xyrem, that is it can help improve sleep quality. Personally i have found on its own not that good but when combined with a normal sleep med, my sleep quality improves.

    Also maybe need a sleep initiator like one of the benzo's or z-drugs and a sleep sustainer together like doxepin or mirtazapine. When im having a real bad run of sleep i just use seroquel and this will bomb 99% of people out, but i only use it once a week as i get tolerant of this med too if used too much but some people can keep using seroquel every night with no tolerance problems.

  3. heapsreal

    heapsreal New Member

    maybe if used everynight but i have lost ten kilo of late while using seroquel one to two nights week
  4. sleepyinlalaland

    sleepyinlalaland New Member

    using Xyrem, and I'll try to tell you what it was like for me.

    I had first heard about Xyrem over 10 years ago, about the remarkable results that were reported about its experimental use in a study on FM patients. The volunteers took it for several weeks, were able to get restorative sleep and at the end of study almost all participants were greatly relieved of their symptoms.

    About 5 years ago, I was able to try for myself. I went to one of the few clinics in L.A. (Hortoff) where I knew they were prescribing it, and I got an Rx for a month's trial. I've had very severe insomnia nearly my whole life, so I was very motivated and felt this held the best chance of my being able to finally able to not only sleep......but to have deep, restorative sleep. sigh.

    It was an interesting month and in the end I decided it wasn't for me. I'll say this, it is not an EASY solution as it can take a long time to get your individual dose right. You are supposed to take it in twice during the night; once before bed, then set an alarm and take it again 4 hours later. I never needed the alarm because although I WOULD go to sleep (hard!) initially, I was always awake by 3-4 hours later. The second dose NEVER quite put me back to sleep, so I'd lie there semi-conscious and aware of the weird (dopey, strange) effects it was having on my consciousness.

    I learned during this time (from sleep forums, and Xyrem's support help) that it can take months to find one's own unique dosage and there may be undesirable side-effects (which supposedly are temporary). One weird one for me is that it really diminished my appetite, in fact I had to make myself eat at first. This actually resulted in depression, and I realized how eating had been a highlight of my day (for better or worse!). My appetite DID go back to normal (for better or worse!) before my month was out, but I read that for many that continued to be a problem.

    I know I've read of at least a couple others on this board who've had positive experiences, so maybe they'll weigh in. I think for sure it is a God-send for narcoleptics because when Xyrem helps them to consolidate and deepen their sleep, they are less likely to have sudden (and maybe dangerous) sleep attacks during the day.

    The final reason I stopped is that I could not afford to pay for the next few months (first was a free trial), for it to see if I could work through all the adjustments and let my body get used to it. Also, by this time I was in my late 50's, had won my SSDI case and because I no longer had the urgency to conform to a schedule, my shabby sleep was less devastating than it was when I tried to work full-time. I am back to .5 mg of clonazapam (Klonopin) which continues to be as helpful now as it was when I first started taking it about 12 years ago. Certainly not perfect, but makes life bearable. I get my BEST sleep from Klonopin PLUS Ambien, but I can add the Ambien only a couple times a week, or it's becomes ineffective. I seem to quickly build up a tolerance to the Ambien, but not the Klonopin. I still count myself lucky to get 5 (tops at 6) hours sleep a night; I'm still sleep-deprived, but not nearly so bad as nearly the first 40 years of my life.

    Good luck with your pursuit of good sleep; too bad there are no totally good answers!

    **one more thing. I never thought sleeping TOO DEEP would be a concern for me, but during my "first dose" sleep I was so stone-cold out, I worried that I might not be able to rouse myself in case of emergency. Sometimes I actually did wake up to pee, and navigating to the bathroom was really hazardous as I was so dizzy during those 4 hours of its effect.
  5. heapsreal

    heapsreal New Member

    I found no matter what supps i tried they were just too inconsistent for sleep, but i do take some with sleep meds that help alittle. tryptophan helps, phosphatidyleserine helps with high night time cortisol. kava and withania help to chill me out but dont put me to sleep. I think when it comes to sleep dysfunction, i think we may all be at a different level, for me its one of my worst symptoms.

    My main sleep meds are zopiclone and valium which i alternate between and when i get into a real insomnia type cycle or just not getting enough quality sleep i use seroquel which is good for atleast 8hours sleep and sometimes more,, its good quality sleep and the only side effect is abit of a hangover which initially is quite strong but i think its worth it after not sleeping or only getting 2 hrs sleep a night for a couple of nights. Good for catch up sleep on weekends, especially until u work out how it effects u.

    Personally i would love to try xyrem but being in aistralia, there will be no chance it will get approved for anything here.

  6. earthdog2000

    earthdog2000 Member

    Hi, I just wanted to jump in to tell you what meds have worked on my insomnia. I take Clonopin and Lyrica for sleep and they work really good and have not had side effects from them! I do take a muscle relaxer once in a while if I know I'm not going to sleep from too much stress or bad fibro pain. It's called Zanaflex and I only take a half of one and it really helps when the others are not enough! It is in the same family as Baclophen but works better as I don't feel groggy in the morning. I think it's a relatively newer muscle relaxer. I had never even heard of Xyrem until I read this post but luckily I don't have to change meds because mine are working really well.

    I hope this helped you some and I'm sure you will get a lot more replies on this subject! I hope that you are able to sleep better by the time you read my reply. Good luck and keep us posted! Did you read up on the XYREM at all? I would love to hear about it.

    Faith, Love and Peaceful sleep,

    Julie :)

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