1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

My trial with Xyrem

Discussion in 'General Treatment' started by alphahusky, May 2, 2010.

  1. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0
    And it was a trial. This was like a last resort drug for me, and as I'm pregnant, my PCP felt it was safer than Ambien CR (which I have to take at higher doses than normal) or Doxepin and Klonopin (which Pregnancy Med Hotline through UConn- a prestigious research unversity- says is safe, and especially in the second trimester). I had always held off on the thought of Xyrem, fearing it, and I must admit, when I have a gut feeling about a drug, it's usually correct. In this case, it was.

    This has been a nightmare. It takes an hour at least to fall asleep. I have to use headphones and CD's, and my ears are killing me (and I get chronic ear infections now, so having to use headphones is not helpful). Then, because I have Interstitial Cystitis (which I do believe it made worse), I was up after an hour and a half to two hours to pee, and then you can't fall back to sleep on Xyrem. Even the nurse admitted that. I tried taking the second dose at the 2 1/5 hour time, which you can, but since it only lasts 4 hours at the most, and it takes an hour again to fall back to sleep and then I wake up after about 2-3 hours, I was up at 3 am most mornings (because I go to bed with my daughter).

    Then there's the dizziness. I can't take care of a toddler when I can't walk a straight line. And the dizziness got worse the higher the dose. I don't have a lot of time to get used to a dose as they titrate up. I've had to have my husband watch the baby Friday night, all day Saturday, and all day today because I'm so dizzy I can't hold the baby. And mind you, this has been on the highest dose you can take, and on about 4-5 hours total of sleep.

    The migraines at the start also lasted 10 days. That's a long time to have a migraine, especially when you have to take care of a toddler.

    I'm going to take my chances with the other drugs. If my PCP won't prescribe them, and he won't (except the Ambien CR, but I have to take more than normal so I have to run out early), my Psych will because I'm bringing him the report from UConn if I have to drive up there myself to get it. I've been taking some of my husband's Klonopin anyway to offset the lack of sleep. Benzos are always considered safe in the second trimester, but Klonopin is considered safer at all times except the 7-9th weeks because of the possibility of cleft palate, because it is an anti-seizure drug and some women have to take it the whole time. I will stop at the third trimester because I don't want a floppy baby (my daughter was floppy due to Down syndrome, and that's hard to deal with). The Doxepin and Ambien I'm going to have to come off of in the third trimester before the baby's born. Don't ask how I'll sleep. Last time I took Ambien the night before she was born (she came early- I'm hoping that won't happen again, of course).

    Anyway, good luck to those who try it. If it works for you, all the best. But it did not work for me, and it looks like after the baby is born, I'm going to have to go to anti-psychotics or something. I don't want those side effects, so I will try to alternate as I'm going to do with the above meds, and I've done with Lunesta and Ambien CR (if Lunesta works at all for me anymore). I hate taking pills, at least these don't impair me if I need to wake with the baby. Xyrem made me so dizzy I was talking funny and could barely change her.

    Oh, and another un-fun side effect: I get panic attacks anyway when I wake up often times, but these were unreal. Two entire hours of adrenalin coursing through my body, while I was dizzy as sin, and it only wakes me enough to be awake, not to do anything. And it was starting to happen at the second dose, in the middle of the night. Panic attacks have in the past been literally incapacitating for me, and I've had to go on huge doses of Paxil to control them, and I do not want to be on that horrible drug again, and I can't during pregnancy. So I've had to go back on Zoloft to see if that will help. Xyrem was supposed to knock out my need for other drugs, instead, I was having to take more, and it also increased my pain. So, please don't pin all your hopes on it. If your sleep is bad and you can try it, do so. But be forewarned.

    And it's very, very, very expensive!!!!! I went into debt to pay for the refill. Not fun.
     
  2. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    934
    Likes:
    103
    London, UK
    Many thanks for that feedback alpha. I'm sure it will be invaluable to many here. Many of us look on xyrem as some kind of holy-grail of sleep drugs. Sure it can be that for some, but as your experience shows it might not work and also have horrible side effects.

    Sleep meds are also on my current list of things to try. Good luck finding something that helps.
     
  3. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0
    So last night I threw other drugs at my sleep, didn't fall asleep until around 2 am, woke around 7:30, groggy but still feel better than I did on Xyrem. I'm going to beg and plead and go to all the docs I see and ask for other meds if that's what I have to do. I think if I even see Xyrem again, I'll spit.

    I am of course disappointed, Garcia. I thought of it as my holy grail, too. But my sleep disorder is obviously too complex even for that. I'd rather sleep 5 hours and wake up a little groggy than be too dizzy to walk, crash for an hour and a half and then be awake forever. And I'd much rather fall asleep very late and wake up from sleep, instead of wake up very, very early with major panic attacks. Geez, I'm even drinking a pepsi right now (I'm probably going to go back to my morning soda with caffeine because it usually wakes me). And no anxiety, nothing. It was the xyrem.
     
  4. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US
    alphahusky,

    Sorry for your problems. Have you tried seraquel (sp?), trazadone, or remeron? These are some big-hitters in the sleep world.

    Good luck,

    BE G
     
  5. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0
    Tried them all. None safe during pregnancy. None worked.
     
  6. BEG

    BEG Senior Member

    Messages:
    941
    Likes:
    162
    Southeast US

    Yes, absolutely, forgot about the pregnancy. I do wish you well in finding the right treatment.

    BE G
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,085
    Likes:
    909
    Concord, NH
    Have you tried Mitrazapine or is this a no-no with pregnancy? No Idea, male here. Trying to help.
     
  8. alphahusky

    alphahusky

    Messages:
    71
    Likes:
    0


    It's just Remeron, I tried it years ago, it was horrible for me.


    There really isn't anything out there I haven't tried.
     
  9. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    405
    Upstate SC, USA
    Sorry to hear about your Xyrem mightmares. I took it for a long time and the thing that I found that was it is was imperative that I didn't anything within 2 hours of going to bed and if I happen to have a larger supper with a high fat content I had to wait 3 hours. I went all the way up to 4.5 grams 2x / night and did pretty good with it other than my legs swelling up from all the sodium (that was a stupid idea to put that much sodium in it just so people couldn't use it as a date rape drug. Hell, it takes an act of congress to get it. I had the dizziness with the high dose for about 2 - 3 weeks, but very little after that. What ultimately ended up being my best scenerio was 4.5 grams at bedtime with 12.5 mg Ambien CR at same time (this was doctors orders too). Didn't have to get up and didn't wake up till 6 am and had no dizziness and no leg swelling. It really worked pretty good.

    The trazadone is very good, but you have to take it 2 - 3 hours before you go to bed or it does not work well at all when it comes to the correct rythem of your sleep. I had a neurologist that fought me tooth and nail about this because I didn't use him for sleep. I used a "sleep specialist" instead and I strongly recommend them over neurologist. My neurologist went to a "conference" on sleep and sleep medicine and said he have something for me when he got back. Come to find out that "sleep doctor" was the guest speaker at their conference.

    It sure sounds like you have been through everything. The only thing that seemed odd was Xyrem taking that long to work. It takes my Ambien 30 - 45 minutes to work, but Xyrem will have me a asleep in 5 minutes. Unless I eat something before I take it then it doesn't work at all. I wish you the best on the sleep and the new addition!!!
     

See more popular forum discussions.

Share This Page