Xyrem Poll?

Discussion in 'Fibromyalgia Main Forum' started by AquariusGirl, Mar 13, 2007.

  1. AquariusGirl

    AquariusGirl New Member

    How many are currently using this and liking the results?

    I'm seriously thinking of asking to try this at my next FFC appt. Waiting on my sleep result tests to find out if still not getting deep sleep levels. I highly suggest the sleep lab test for those with Chronic Fatigue. You need all the data to support you as much as possible.

    Anyway--would appreciate Xyrem updates from current users.

    Thanks.
    Kelli
  2. llama

    llama New Member



    I'd like some input too....
  3. wildflowers2

    wildflowers2 New Member

    xyrem

    I tried it..and it made me vomit. it is SO salty...
    it was the former 'date rape drug' ....

    it made me so groggy in the morning I dint know who I was..was stumbling around the place.

    the stuff is expensive too..$$$$
    I think my co pay was 50.00 or 100.00

    I did not like it....

    good luck

    wildflowers2
  4. ask2266

    ask2266 Member

    I had wierd feeling of floatiness the next day, so I cut down to just taking it at bedtime, and then taking an Ambien. That worked much better for the side effects. Now, I take it every now and then just to fall asleep, and when i wake up, i take something else.
  5. HRgirl

    HRgirl New Member

    I was on it for 6 months because they thought I had Narcolepsy. Turns out it helped me sleep better than I ever had and totally relaxed my FM. I am on a path to get back on it. Totally worth the Non-Formulary money. Side effects go away in a few days
  6. Daisys

    Daisys Member

    I've been on xyrem for 9 months now, and I'm real happy with it.

    It's key to my improving from ~20% up to now about 50% activity-wise--and with summer coming, I always get more active.

    I still have some congnitive symptoms but NOTHING compared to the stupor I existed in when I was getting very little deep sleep. I used to even have dream waves trying to emerge when I was walking, I was so sleep deprived! Now I'm mainly forgetful, and easily overwhelmed by too much incoming data.

    I lost weight after going on it, and had less achiness. Infection issues have marred these last two benefits, but I'm working back to previous levels now.

    Kelli, some people just can't tolerate it, but to maximise your chances, be sure to start low and titrate up very slowly. Make sure your body is used to each dose before going up to the next higher dose (small increments). This means you won't be getting enough good sleep on it for a few weeks, but the investment is worth it, because it really gives the best, refreshing sleep of any of the sleep meds. Also, be sure you're taking enough good quality magnesium. If you're deficient, taking xyrem will show it up, and it looks like side effects from the xyrem.

    Hope it works out for you.
  7. gatorlass

    gatorlass New Member

    I've only been taking it for 3 weeks and am still "tweaking" it but it seems to be working. I upped my dose by 1ml last night and had much better sleep. For those of you who don't like the taste, I invented a real good way to drink it - with a straw!! I cut 1/3 off the straw to make it shorter and put it all the way at the bottom of the cup. Then I put the straw all the way to the back of my tongue as far as I can and still be able to suck. It works great and I discovered that xyrem is heavier than water and kind of sinks to the bottom of the cup. The last little sip is usually mostly water so I don't have a strong salty taste left in my mouth. My only side effect I have/had was pain and cramps in my legs. I solved that w/Mag. supplements. I'll keep you posted!!
    Gatorlass
  8. marmayer

    marmayer Member

    Kelli, I`ve been on xyrem for 16 months now and believe that it is the main reason I have very little pain. I truly "turned the corner" after I started taking xyrem.
    I too got the rx from the FFC-although reluctant at first-I would hate to be without it now!!!

    Good Luck with it, just titrate up as the directions state and give it time.

    Marmar