Oh my God! This just may be our miracle, pls read!

Discussion in 'Fibromyalgia Main Forum' started by JaciBart, Apr 28, 2003.

  1. JaciBart

    JaciBart Member

    I was just researching xyrem, ended up at a message board

    talk about (Edited to remove URL)

    and everyone there has severe pain and many more problems due to the lack of sleep, we don't get stage 4 sleep and the xyrem seems to be the answer to that.

    Do a search in google for xyrem and read for yourself.

    PLease please Madwolf rx it for me.

    I am going to do my darndest to reach my doc (Madwolf) tomorrow and get it.

    Anyone else tried it??

    It sounds incredible to me and could just be the one thing that does it for us. Worth a try.

    Jaci
  2. Laura62

    Laura62 New Member

    Hi,

    I was just in recently to see a doctor who suggested to me that the latest theories (or at least one of them) was that sleep disorders may come before the FM/CFS, not the other way around...

    I, like one of the above posters, prefer not to use meds, due to bad tolerances...

    I was also trying to find some research to find out if sleep meds really give a person a true satisfying sleep...

    To find out if a "drug induced sleep" is the same as a natural deep sleep..

    But I can't seem to find anything...

    If anybody out there has ever found any answers to questions like this, I'd sure love to hear them!!!!

    Anyways...I'll go check out that site...Thanks

    Laura
  3. OhioGolfer

    OhioGolfer New Member

    Be aware that this drug is a Schedule III controlled substance, and formerly achieved notoriety as the "date rape" drug. It is approved only for treating certain complications of narcolepsy, including the muscle paralysis and weakness that accompany that condition.

    Note that the side effects can include trouble breathing while asleep, which could be disasterous if you have sleep apnea. Depression is also a side effect.

    For a brief, but informative summary of the drug, see
    (Edited to remove URL)
    Jeff
  4. Laura62

    Laura62 New Member

    Hi,

    Just read about the "drug"...sounds a little "heavy duty" to me...some pretty nasty side effects...

    Also, I could only find "narcolepsy" listed as it's prescribing treatment...

    Still interested in the "sleep disorders" issue though!!!

    Laura
  5. sofy

    sofy New Member

    This is not a new drug, just a new name. It is being reallowed under very strict guideline for narcoleptics but not all of them. It is approved only to treat cataplexy, which a lot of narcoleptics suffer from. That has to be in the diagnosis and then the md has to send off the scrip and it comes to you via mail. This is the kind of thing no doctor who cares about his job would prescribe without all the t crossed and I dotted cuz it could cause big problems if you fudged. You can also look it up under GHB.
    I was diagnosed with "possible narcolepsy" and see the sleep Dr. once every few months, so in the beginning I spent a lot of time on narcoleptic sites. No one involved in the trials said it was the pill from God and a lot of them had trouble finding the right dose. I suspect it is like all the golden pills of hope, once you get it you find out the gold was just paint on the outside. I so glad to read they are going to do trials on fibro.
    pasted from a narc site:
    In Reply to: Xyrem for insomnia? posted by Xev on January 27, 2003 at 14:34:43:

    Xev - Yes Zyrem can be approved to treat insomnia. My sleep specialist thought it might be the answer for me. It was a lot of trouble getting approved for the stuff but I did. I had it for several weeks before I tried it due to its reputation at the Date Rape Drug. You have to take one dose at the beginning of the night and then set your alarm for 2 1/2 - 4 hours later because it wears off quickly.

    My experiences have not been great with it. The first time I took it I started at the lower dose and nothing whatsoever happened. The next week we doubled the dose and I was knocked out cold. It was rather a scary feeling. At that point I thought that maybe the dose was too high so we lowered it. IThis time it took a good 45 minutes to kick in and then I was awake before the alarm went off at 3:00 am. I took the second dose and was awake a full hour before it kicked in again. I was positively wiped out the next day and haven't taken it since. This may be all dose related but somehow this med scares me. I've talked to the Zyrem pharmacist several times about my concerns. He says people can be on this med for years once they get the right dose and it doesn't have to be increased and you do not become tolerant. I am still very skeptical and will have to be very desperate to try it again. Sorry for the long winded reply. I had been wondering why Zyrem has not been brought up on this forum before even though it's approved for narcolepsey
    [This Message was Edited on 04/29/2003]
    [This Message was Edited on 04/29/2003]
  6. klutzo

    klutzo New Member

    I heard nothing but horror stories from people I talked to who participated, one who found herself on the floor and did not know how she got there, one who said she could not tell if she was awake or asleep, people complaining of being knocked out like under anesthesia, etc. I think I'd let someone else be the guinea pig on this one!
    Klutzo
  7. JaciBart

    JaciBart Member

    I see all of your point but I truly think that it would be worth a try.

    I get the same thing from ambien, it causes amnesia for me, if I do not get to bed right away it will kick in and I become like I am drunk.

    I make sure most of the time that I go to bed right away, I am not concerend about the date rape thing, it actually happened to me a few yrs ago and I was drugged with something like this, I am not afraid of the proper usage of any drug, it is the misuse in my opinion that is the problem, I called my pharmacist and he said he can order it in, it comes in liquid form, I would just make very sure to measure the dose, record it exactly and go right to bed. My hubby would be with me if I had any problems, I do not have the sleep apnea thing, in my opinion and for me I would love to try it, my sleep problems were created from yrs of taking benzo's prescribed to me for anxiety. I cannot any longer get to sleep without ambien, I know that ambien inhibits stage 4 sleep. I have thought of nothing else all day, "maybe there is hope for me".

    The past week I have been going thru the doxy herx thing and it is horrible, I am definitely open to all ideas that may give me more quality in my life.

    I will gladly be a guinea pig with this.

    Jaci