Hey guys, quick question for you. I am starting my Xyrem titration all over again and have been at the lowest dose for a month now, thinking it isn't quite effective at this point. Have you guys had crazy dreams and lots of them on the Xyrem? I have them normally so I can't tell if it is because of the Xyrem or because it is not effective at this dosage.
Yes, I had crazy dreams on the lower doses of Xyrem. Earlier in the thread I said Wes Craven on a bad acid trip couldn't come up with the bizarre things I dreamed. Everything I understand is that when the Xyrem is working right you'll have dreamless sleep. I think what BrownDog319 refers to as dreams just before waking is what the Xyrem experience SHOULD be. I actually seem to have a lot more vivid dreams in general even though I've been titrated all the way up to 4.75/4.50, but not as intense and strange and disturbing as on the lower doses. There was a Voodoo Heroin Africa Medicine godish thing in the weirdest one!! LOL Except it wasn't heroin - it was the Xyrem they were injecting and they were stealing all my Xyrem!! I can begin to giggle about it now. But seriously disturbing technicolor dreams!!
From everything I understand about Xyrem (and there are other more educated members than me) at the lower doses most people don't hit the dreamless sleep. From what I can figure the lower doses are simply to get our bodies accustomed to the medication so that we don't go from 0-200 mph so to speak and oh, well, I don't know, kill ourselves with too strong a dose!!
Another new one to report, as well. Last night, I woke up in between my 1st and 2nd doses as I've been doing. I still felt the drug really strong, so I tried to go back to sleep. As I was going back to sleep, I felt more nauseous than I have recently. But I was able to go back to sleep. My alarm went off for my second dose. I always need to go to the bathroom between doses so I get up before I take the 2nd dose so I don't have any of the waking up in the bathroom situations I've read about... coming back from the bathroom, I had to grab the wall because I nearly fainted. The room was spinning. I dropped to my knees and crawled to my bed. I was able to get back to bed. I'm not sure if I passed out or fell asleep. I never took my second dose.
Has anyone had this happen before? It's been going so well. It freaked me out. And I felt well all DAY... waaahhhh!
Between doses when I go to the bathroom I also have the SEVERE dizziness and like you have often had to hold on to something to not fall down. For me the Xyrem makes me super super dizzy always - it doesn't make me drowsy so much as it makes me so dizzy I can't lift my head off the pillow after taking the dose. I understand this was new for you and therefore frightening, but I don't think it's anything to be worried about as one of the biggest reported side affects is dizziness. Hopefully you can go back to not having it, but even if it remains between doses, it is just something to compensate for (i.e. clutching the wall all the way to the bathroom and back!!). I pretty much always have it between doses and just get super willful that I'm NOT gonna let myself fall over no matter how bad it is. At least so far that's worked for me.
Now I have a question if anyone has had an experience with the taste changing for them....as I've mentioned in this thread and others I mix Crystal Light liquid flavor with the medication, but, wow, the last few nights even with that, Oh My Goodness!! The saltiness is almost overwhelming...hmmm....thinking about it, it has been since I "opened" a new bottle...wonder if sometimes the salt mixure gets a little out of whack. Perhaps I'll try a different bottle and see if I notice a difference.
Another development for me is that for the loooongest time I couldn't get past an hour or two on the first dose and went with a stronger first dose to get me through a few hours til the second dose. The last three or four weeks, right after only being able to sleep three hours on each dose and still being EXHAUSTED (but completely unable to sleep more), I now am sleeping four to five hours EACH dose!! I've never even needed the alarm for the second dose cuz I always woke up way before the four hour mark (lots of times even before the 2.5 hour mark of being able to take the second dose), and last week after oversleeping a couple days (another first for me on the Xyrem!) I decided to set the alarm at the three hour mark and take the second dose. That morning, for the first time since starting Xyrem, I slept THROUGH both phone alarms!!! Woke up an hour late, shocked and befuddled. So now I'm afraid to take the second dose without waking up from the first dose naturally....problem is as I've been sleeping longer on the first dose I'm having nights where I don't have enough time to take the second dose!! And to allow enough time for a full night's sleep on both doses it feels like I have to back my bedtime out to a time when I'm just not sleepy yet!! Granted I still suffer horribly from that five year old syndrome of "I don't wanna go to sleep cuz I'm afraid I'll miss something!!" I'm terrible at it.
I had really bad experiences of taking the Xyrem early on when I wasn't sleepy and I'm nervous about taking it an hour or two before I feel sleepy and if I don't go to sleep on it, wowzas do I feel like crud!! Dizzy and miserable. Saw the dr today and I was surprised that he opted with lowering the second dose (over the first dose) for a month. But we'll see how that works. I am realizing that it can take longer to really settle into a sleep pattern on a dosage level than I had originally understood. I have been on this dose since mid-September and it took really til mid November to start getting maybe full efficacy. I'm just fine with lowering my dose as long it keeps getting me the sleep I need!! (And it's crazy to figure out from my monthly Xyrem "statement" how much the annual cost is - last count: $111k!!)