Xyrem Question

Discussion in 'Fibromyalgia Main Forum' started by gatorlass, Feb 27, 2007.

  1. gatorlass

    gatorlass New Member

    I've been taking xyrem for almost a week now and just wanted to let everyone know that I believe it is really improving my sleep. I find that I still dream but they are not as long or as intense. What would be "NORMAL" dreaming?? I'm also wondering about my dosages. I'm still taking 4.5ml to 2oz. water. I usually take my 1st dose at 10:00pm and my 2nd dose at 1:00am. I feel like I'm getting about 3 hrs of good sleep per dose. I'm wondering how an increased dose will work. Will it last longer or provide a deeper sleep or both? It would be nice to get a good 8 hrs. of sleep. The wierd thing is though, I'm feeling so much more rested in the morning and am experiencing much less early am stiffness that I'm very satisfied with the sleep I'm getting now. There's no telling how I'd feel if I got a good 8 hours of sleep!:) Plus, I'm not taking 3 advil every morning like I used to. We went to a wedding last weekend and I was very rushed to get ready at the last minute which I try to avoid. If I get too stressed out I will almost always get a bad headache and I hate the side effects of the migraine med's I take (Zomig). Well, I didn't get a headache at all!! I'm also feeling more relaxed. I think a lot of my stress revolves around my inability to be perfect. I'm always feeling overwhelmed because I just didn't have the energy or feel good (lots of pain) enough to get everything done. It's very frustrating for me not to have a clean house, all the laundry done, get my "House" projects done, cook on the weekends, etc., etc. I feel less overwhelmed because I feel like doing more or at least feeling good enough to do more!:)

  2. Daisys

    Daisys Member

    Good, it's working for you. I always heard that if you stay asleep when you dream, you won't remember that one. So, I know I dream on xyrem, because I'll wake up in the middle of one every once in awhile.

    I called the central pharmacy about the water. It's not meant to be an exact amount, and it's important to rinse your mouth and swallow after drinking it, to clear your mouth and esophagus from the solution. So, I drink it with a little water, and then drink 2-3 swallows after that.
  3. pat460

    pat460 New Member


    I hope you don't consider this too dumb a question but, what is Xyrem? Is it just for sleep? Is it a supplement or a prescription med? Do you still feel groggy or sleepy (like a having a hangover) the next day? Insomnia is killing me! I am so very tired! I would appreciate any advice and info on anything that makes you feel better.

    Thankyou, pat460
  4. Daisys

    Daisys Member

    If you google xyrem, you'll find the official website with all the information.

    It's totally different from any other kind of sleep med. It used to be sold in health food stores, but then was discovered to be used as a date rape drug. Now it's a controlled substance.

    It's very effective for the kind of sleep disorder that comes with CFIDS/FM. Our central nervous system is so revved up, we don't get the deep, slow wave sleep we need to wake up refreshed. Xyrem is a central nervous system depressant that has a half life of 45 minutes. So, after taking it in 2 doses, it's out of your system by morning.

    The challenge is finding a doctor who will prescribe it, because they have to fill out a lot of paperwork. It's mainly been used with people with narcolepsy, and now, more and more with FM are using it. It may be approved for use 'on label' with FM soon, since the trials are very favorable.
  5. Juloo

    Juloo Member

    I've been on Xyrem before, and after many months away, I'm back on it again. My problems involved the second dose. The short story is that it upset my stomach something awful. (And that second dose is supposed to help you go deeper than the first.)

    Now I'm only doing the first dose and taking a miniscule dose of Ambien and some melatonin at bedtime. Also, I am using a CPAP for mild apnea -- and I like that I don't have that "compressed chest" feeling I used to have when I took Xyrem before.

    So I started (this second time) at 6 mL and went up to 6.25 and 6.5, where I stayed for about a week. I have been feeling terrible -- probably mostly because of a new medicine (not Xyrem) that has me herxing -- and my sleep was just NOT what I would have expected. And I kept waking up earlier and earlier. Yesterday morning, I woke up at 4:15 a.m. and was miserable all day long at work.

    Last night I jumped up to 7 mL. I woke up at 5:15, and was pretty mad at being awake so early. So I decided to get up and do some housework. Right after, I got a burst of energy and ended up folding about 4 loads of laundry and starting a couple more before DH and son got up.

    I was actually AWAKE when I got to work today.

    With a clearer mind, I was able to remember that my dose the first time I took Xyrem was 7.5 mL. So it makes sense that I'm getting close to the dose I need, and I know that I will start seeing the benefits.

    So that's what I meant when I wrote that you may not end up needing 8 hours of sleep in the long run. I've found that a proper dose of Xyrem makes my sleep much more efficient.

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