XYREM users please update us

Discussion in 'Fibromyalgia Main Forum' started by KimDC, Aug 18, 2006.

  1. KimDC

    KimDC New Member

    My doc and I are discussing Xyrem as a treatment for my fatigue. I've had a sleep study done and get zero stage 3 & 4. It's very helpful for me to continue reading your experiences with Xyrem. Thank you!!!
  2. KimDC

    KimDC New Member

  3. UnicornK

    UnicornK New Member

  4. place

    place New Member

    I think it had Daisy's and a little about Delia.

    The last I read, Delia had to stop due to side effects that got worse. She stoped on her 11th day of treatment.

    Dasiy is doing great.

    Bioman has not been around so I don't know how his treatment has been going.

    If I read anything else, will post back!
  5. Daisys

    Daisys Member

    Yes, I'm still doing well with xyrem.

    I think I'm at my best dose now. I tried to get up to 8 hours a night, but I started feeling groggy all day, so I backed down on the second dose. So, I'm at 9ml and 7.5ml and am getting 7-7 1/2 hours of sleep a night.

    I've been taking it for 2 1/2 months now. I understand that some did well for a couple of months or more, and then started having anxiety. So far, so good for me. :)

    I have less pain (tho I'm still sore) and less fibrofog, but am still waiting for more energy.

    KimDC, hope you do well on xyrem, and I'm certainly willing to answer any questions, if I can.

    Oh, I just thought of something that's been happening. I break out into a sweat a few times a day. It could be menopause related. Or, something to do with the human growth hormone kicking in due to finally getting deep wave sleep. I do feel better if I drink a LOT of water. I also take more magnesium and potassium because of the increase in water.

    Place, are you starting on it soon?

    [This Message was Edited on 08/18/2006]
  6. ritatheresa

    ritatheresa New Member

    Hi, last night was my second night taking Xyrem, so far it seems ok, I was really nervous about starting it.

    It's just me and my 10 year old daughter. Well, I slept at my sister's for two nights and it seems like I'm not having any problems getting up if I need to.

    I also have 0 stage 3 and 4 sleep. I'm really praying this will help.

    I'm taking 6 mlx2. I don't notice any side effects but I did have some trouble falling asleep (I've been taking Trazodone for a long time and didn't take it). This morning when I woke up I felt pretty good.

    I'll definately keep you guys posted, Ritatheresa
  7. marmayer

    marmayer Member

    Kim-I`ve been taking xyrem off and on for about 9 months. I definitely feel better on it-no pain, not much fog and so much more energy! I have been adjusting my doses also-now on 8 ml and 7 ml-this is what works now. On occaison I am alone at night and it is an uneasy feeling.
  8. place

    place New Member

    I am so glad it’s going so well for you, you must be so pleased! What are you doing these days that you were not doing before?

    I have been trying to get on it for several months! Have had some set backs, but I am a little more nervous now after Delia's experience.

    I am mainly fibro (at least that is my DX), with some mild cf (more sinus infections).

    My FFC/Cleveland doc, has prescribed it, also was a sleep doc for a while, but had some people really freak out on it and does not prescribe it as much any more.

    Those two reports make me really nervous. I am high anxiety as a person so it concerns me that this is one of the side effects.

    That’s all I need to do is worry more! I wonder if one could take anti-anxiety pill during the day to counter act the side effects?

    I see Dr. J in a week, I am really interested in her opinion on Xyrem, what her experiences have been and if she thinks I would be a good candidate for it.

    I will keep everyone posted for sure, from what everyone says, if you ride out the symptoms for a month or so, you will have better success.

    I have more questions than I think they have answers.
  9. Daisys

    Daisys Member

    I'm sure you've read Julie(is free)'s posts. She had anxiety and took something for it. Maybe you could use her experience in your discussion with the doctor.

    I have CFIDS and FM. The xyrem is definitely benefiting me, but I still have some problems that seem viral. My doctor is convinced that when I get enough good sleep, my immune system will take care of the viruses.

    The difference from before xyrem and now:
    The past few months of a bad relapse I'd been cancelling out on most of my routine, my 'bottom line' important stuff. I was basically almost bedridden, my only accomplishment for each day was cooking, and very minimal cleaning.
    Now:
    I'm back to my basic schedule: cleaning the house, some yard work, walking between 1/2 and 1 mile a day, and leaving my house for several hours 3 times a week (not a paid job, but something I'm committed to).
    A few times, I've had 'marathon' days--gone all day either running errands, or social things. Last weekend, I walked a couple of miles up the mountain. I think I'm still sore from that, but I'm glad I can do active things like that again.
    I've also started making jewelry, and painting again(watercolors).
    The next things I'll add:
    Pilates, longer walks, more yard work.
  10. place

    place New Member

    Dasiy, that is fantastic! I am so glad for you, I'm sure you are finally glad to get some repreave from it.

    My testing comes back from Dr. J next Monday. I will ask her if one can take anit-virals and Xyrem without drug interactions.

    Have a good week and I will post back when I make some progress on this issue!
  11. gramaT

    gramaT New Member


    I was soo excited about starting xyrem late Aug and was worried about going off pain meds (its a study)

    Now, my husband is selling our house and says we will be traveling for a while.

    If I tell my Dr that, she probably won't let me be in the study.
    I wondered what kind of Dr usually prescribes this and mabe

    should I look for one when in TX or wherever?? Boy this was

    something I was hanging all my hopes on for so long now.

    I have so much pain and fatigue and now the stress of moving packing etc.

    thanks for any and all help or suggestions. I love you all

    Carolyn in Illinois

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