Hello all...haven't been on in a bit. Sooo...I'm tottering at the very brink of maxing out my Xyrem. And still not getting that elusive dreamless sleep that I've been told is the mark of deep, restorative sleep. Last night was my first night at 4.5 & 4.25 so there is a chance that in a week or two it will all be good and granted I can bump that 2nd dose up. Who knows why 4.5 x 2 is the max allowed? I'm sure there are some reasons that I haven't stumbled across.
Meantime...after finally coming out of some pretty intense side effects like crazy dizziness, numb tongue, and that surreal sensation that another spoke of....I was starting to feel like me again...except...then...I lost all motivation. I mean, like that I don't want to even move that I've only ever felt when I had pneumonia. And sometimes taking three naps a day - though interestingly my naps are now shorter than they used to be. When I have made it into work I still feel like I'm going to go to sleep at my desk, and well, I'm sure you all know the tricks - let me put my hand near the mouse...turn my body so anyone walking by won't see that my eyes are actually close...those tricks. And I'm still taking six stimulants a day (4 15 mg Dexidrine and 2 100 mg Provigil). Since I don't sleep for more than two minutes without my CPAP machine I haven't even attempted taking a nap at work (I did receive approval from my boss).
I'm hoping the severe lethargy is just the latest of the side effects and will fizzle out in a few weeks like the other side effects did. However, and now I move into a vent...I asked the Dr overseeing my Xyrem for a leave of absence til I can get through the side effects and (through the nurse) he just says, Well, the narcolepsy diagnosis may not be approved for a leave of absence. And I say, I get that, but it's for the SIDE EFFECTS and I've taken leaves before for side effects and they've been approved. But then the nurse, like she's a recording, keeps repeating the same thing. And I repeat my response and finally I say - I'm hanging up now.
Now, in an odd twist I have TWO sleep specialists. Mainly because the first never found the narcolepsy and when I couldn't reach him in a moment of desperation I sought out the second opinion which uncovered narcolepsy. So, first specialist still handles my stimulants and second my Xyrem. I actually think I can get the first to write the leave of absence because he knows how to word things so the insurance companies accept the requests.
But enough of that part - I've not heard anyone else say that they've had this lethargy, brain not functioning while on Xyrem. Have any of you heard of this at all? I do think it will pass because all the other side effects have.
And as far as stimulants - what else is there? I've seen folks talking about ritalin - I initially tried adderall before the dexidrine and it worked great except it made me super itchy - didn't go into hives but within a few weeks my shins were covered in scabs from scratching myself so much. But the dexidrine is a pain in the tuchas to get as none of the local pharmacies carry it in house and it can only be mail ordered and because it's class 2 it typically takes a solid 3 weeks sometimes even a month to get it. Is there really any increased benefit from nuvigil vs provigil or is that just a marketing strategy to get more money? And finally last year the provigil went generic but am I correct in my understanding that the nuvigil doesn't have a generic yet?
Has anyone on this site taken Xyrem with success?