Xyrem, have you taken it

Discussion in 'Fibromyalgia Main Forum' started by place, Apr 24, 2006.

  1. place

    place New Member

    Just wodering what your dx is and did this drug work for you?
  2. julieisfree05

    julieisfree05 New Member

    Hi Place,

    I was dx'd in 1993 (got sick in '91) with FM/CFIDS and Multiple Chemical Sensitivities. I was also mis-diagnosed with Gulf War Syndrome because I work for the Navy and saw my specialist for the first time in '93 and he thought I was with a group of GW vets he was seeing under a federal grant.

    This drug has been like a miracle for me. I no longer have any FM pain, the other various "symptoms" have disappeared, and the fatigue is virtually gone.

    My neurologist says it's the closest thing he's ever seen to a cure.

    Let me know if you want more info on how it works, or see my other posts.

    God Bless,

    julie (is free!)

    it's a mighty big word
    for such a small man.. - Rebecca Lynn Howard
  3. sleepyinlalaland

    sleepyinlalaland New Member

    since December. It did enable VERY deep sleep, but the 2nd dose NEVER put me back to sleep...would just lie there agitated from effects of Xyrem WITHOUT benefit of sleep.

    Then I began to just use one dose. That was OK, as even tho I woke up after first 2 hours or so, I was surprised to be able to get a few more hours sleep on my own after that. Problem was I always still felt tired. Interestingly, even though there would be many days (even weeks) between usage, I did seem to get less side effects each time. However, I plateuaed at a level that was still more tired than I'd be without Xyrem.

    I now believe it is because I am a HEAVY snorer. My sleep study could not accurately appraise this because even tho they reported I was a "severe" snorer, it only lasted a little time (I was only ASLEEP a little time!) I should have had a sleep study WITH Xyrem instead of ambien which is real short-term for me.

    My next step is to try Xyrem with a cpap. I have only mild apnea, but the snoring itself could be wearing me out. So, I'm hoping that's a solution!
  4. place

    place New Member

    Thanks Julie, after I posted I remembered to search.

    BTW, I really love your quotes!
  5. place

    place New Member

    Did you get to take ambien when you did your first sleep study? I have been thinging about asking my GP to get a sleep study but I keep thinking "who the heck could sleep at a sleep clinic if they can't get it done in their own beds!"

    I don't know where I read this but it was my understanding that Ambien and otc sleep aids do not put you in deep sleep? What have you heard?
  6. julieisfree05

    julieisfree05 New Member

    The way it was explained to me, most PWFM have a central nervous system that ALWAYS idles high. No matter what kind of "sedating" stuff you take, medication, herbs, or whatever, if the CNS is not "depressed", you will not get level three/four sleep. (It also helps explain why we are so sensitive to outside stimuli.)

    Since these are the levels of sleep where the body makes repairs, produces neurochemicals, hormones, and other vital substances, just getting "knocked out" will not help us get these levels of sleep. The CNS must be depressed during normal sleep (even in NDAs - people "not diagnosed with anything") to stop the downward spiral that begins when you are not getting deep sleep.

    If the CNS is depressed properly during sleep, the long waves of level three/four sleep occur, and the body should begin to do what it "normally" does during these levels of sleep.

    Of course, nothing works for everyone, but that seems to be what's happened to me - and the other FM patients my neurologist is treating with Xyrem.

    (And glad you like the quotes..I love 'em!)

    julie (is free!)

    I really wanna care, I wanna feel something.
    Let me dig a little deeper. Nope nothin'..
    My give-a-damn's busted!

    - Jo Dee Messina
  7. sleepyinlalaland

    sleepyinlalaland New Member

    they did let (insist on) me using Ambien for study. Basically it was because the primary thing a study looks for is whether or not you have sleep apnea...because that's the only thing they can possibly FIX!!!...and they can only discover it if you get a little sleep, they don't care how you get it.

    Other than that, I really don't think sleep studies are very useful. Very few people with sleep problems are gonna sleep their "normal" sleep when all wired up like that!
  8. julieisfree05

    julieisfree05 New Member

    B'ing this message back to the front for anyone who might have missed it.

    julie (is free!)

    All I know is
    love can heal
    what nothin'
    else can heal.. - Radney Foster

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