Xyrem Update, Third month now.

Discussion in 'Fibromyalgia Main Forum' started by Meghanne, May 11, 2006.

  1. Meghanne

    Meghanne New Member

    I'm nearing the end of my third shipment, and doing well at 9ml. Sometimes I have a hard time getting to sleep still, and if I'm still awake 2.5 hours later (the earliest you can take the second dose) I can always count on the second dose to make sure I get to sleep.

    I'm also using Pro Energy and Fibro Freedom from Pro Health, and am about two-three weeks into it, and starting to feel some improvement there.
  2. place

    place New Member

    How long to you think you will need to take it?

    Thanks for keeping us posted!
  3. Juloo

    Juloo Member

    I'm completely jealous! I wish it worked that way for me, too, because it was the only thing that gave me that deep sleep that we're all missing.

    Re: getting to sleep. Have you tried melatonin? I know many, many have. But I was going to suggest going to a natural foods store, that has a wide range of supplements also, and finding the 0.5 mg (as opposed to the 3 mg most drugstores have) and using only HALF. I've found that less melatonin helps better than more. Also, an article in a health magazine said that for a bio-similar dose (to what our bodies really need), the 3 mg tablets widely available are *10 times* too much (so you really only need about 3 micrograms, or 0.3 mg, close to the 0.25 you get by halving the 0.5).

    Anyhow -- I'm glad you're doing so well!
  4. Meghanne

    Meghanne New Member

    Indefinitely. I don't even have to see the doc for a year. He a said just come back in for a check after 6 - 12 months. Unless there was something that couldn't be resolved by phone. This will be a long term drug for me.
  5. place

    place New Member

    ONe more question!!

    What are the signs that you have notieced that you are getting better?
  6. Meghanne

    Meghanne New Member

    The obvious is that I'm actually sleeping, and not terrified of my bed anymore. I had a pretty complicated three year bout with insomnia that ended me in the hospital twice for sleep deprivation, on top of the fibro.

    I also have more energy during the day, am not as drowsy. I'm thinking more clearly, and the pain is decreasing.

    Trish
  7. MaryCecelia

    MaryCecelia New Member

    I'd been wondering about you and am glad to hear your news. My dr. told me to stick with 6.5 mL X 2 for a month because I was feeling anxious in the a.m. when I went up to 7; however, a very low dose of Klonopin has helped that, so he may have me increase when I see him on 5/22. Overall, I'm not as tired, but I still have room for much improvement. (I started in early March.) I go to sleep in about 30 mins. and sleep for 3 to 3 1/2 hrs. on each dose.

    It's good to hear from you!
  8. Meghanne

    Meghanne New Member

    I've been lucky and haven't had any agitation or anxiety with it. Just sweet sleep. Oh, and that occasional munchy binge that's REALLY hard to fight off if you don't happen to fall asleep right away. But I'm getting better at it. LOL!

    Trish
  9. bunnyrabs

    bunnyrabs New Member

    I wonder why some people get aggitation and some don't? I wonder if it is just the body's reaction to years of bad sleep being suddenly corrected? Like some sort of reverse healing process that can't take place without repercussions in some Xyrem users, so to speak. Maybe some correction of hormones and/or neurotransmitters that have been out of balance for so long.[This Message was Edited on 05/13/2006]
  10. julieisfree05

    julieisfree05 New Member

    I've spoken to the people at "Advocates for Sleep" (the support group for anyone taking Xyrem) and although they've heard of the aggitation problem, they didn't have any answers as to why it happens.

    I know that as I got better, the aggitation did decrease, so maybe it has to do with your CNS being messed up...?

    I just don't know..

    julie (is free!)

    It’s a little too late
    I’m a little too gone,
    A little too tired of this hangin’ on..

    - Toby Keith
  11. rinaldo

    rinaldo New Member

    hi my doctor was going to put me on xyrem. First he tried ambien cr and 1/2 dose of klonopin. I am sleeping a full 7 hrs. im going to stay on this as long as it works. The only problem my insurance doses not cover the ambien cr and it very expensive