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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.
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.
