Xyrem, it works!

coaster · Post by **coaster** » Fri Aug 04, 2006 1:18 pm

Thanks, found it. I haven't been in that section because I don't see myself as "New to RLS" :lol:

rfishburn · Post by **rfishburn** » Wed Aug 23, 2006 7:26 pm

The neuro faxed in my script for xyrem today...so we will see how long it takes to get it. Also the withdrawls (lyrica) according to him are pretty nasty, he gave me a bunch of lunesta and ultram till I get the script, as long as my insurance does not cause problems, they will pay for it but may reject based on off label use.....

rfishburn · Post by **rfishburn** » Mon Aug 28, 2006 2:50 pm

My xyrem was shipped and should be here today...I will not be trying lyrica again. Th withdrawls were not fun to put it mildly.

Post by **ViewsAskew** » Mon Aug 28, 2006 4:16 pm

I, for one, am intensely interested in the results - immediately, short and long term. So, thanks for keeping us posted. Thanks, also for the info on Lyrica.

There is a thread somewhere about effects of meds. If I find it and bump it up, would you be willing to post about the xyrem in it?

rfishburn · Post by **rfishburn** » Mon Aug 28, 2006 4:43 pm

Ann-

I will put out all the info I possibly can. I am starting a journal tonight and will share my experience with ya'al. Wish me luck.

Post by **ViewsAskew** » Tue Aug 29, 2006 4:03 am

LUCK!!!!!

rfishburn · Post by **rfishburn** » Tue Aug 29, 2006 1:52 pm

As luck would have it I came down with a nasty cold last night and could not sleep much anyways. Myabe tonight will be better.

ctravel12 · Post by **ctravel12** » Tue Aug 29, 2006 2:34 pm

Randy I am so sorry that you are not feeling good. I am sending good thoughts your way. Take care and have a good day.

rfishburn · Post by **rfishburn** » Wed Aug 30, 2006 2:32 pm

Better night last night, still on a low dose and just a few hours of good sleep is a welcome change of pace. The xyrem pharmacy said 5 days is enough to tell if you doctor should up the dose...so hopefully next week will be even better.

rfishburn · Post by **rfishburn** » Tue Sep 05, 2006 11:18 pm

Not much to report, sleeping a little under two hours per dose at 4.5ml per dose, asked the doc to up the dose and he is treating my like some junie seeking a fix(xyrem pharmacist said 5 days is enough to tell if an increase is needed)....oh well. However the little sleep I have been getting is goo and infact on a good day I wake up with energy and no cclue what to do.

Post by **ViewsAskew** » Wed Sep 06, 2006 12:47 am

Randy, that is great news. I really hope it continues. I'd LOVE to wake up with energy. To me, that is the biggest drawback of the opioids. They do make a person sluggish - sort of like a fat, contented cow. Just eat and snooze.

FidgetBoy · Post by **FidgetBoy** » Wed Sep 06, 2006 3:13 am

moooooo.

rfishburn · Post by **rfishburn** » Thu Sep 07, 2006 2:26 pm

I have had the moo myself.

rfishburn · Post by **rfishburn** » Thu Sep 07, 2006 2:28 pm

So my neuro has been deployed (mongolia) and he was the only one in his office qualifyed to up my dose so looks like I will be at the low dose for a few months.

rfishburn · Post by **rfishburn** » Mon Sep 11, 2006 11:14 pm

wow, last 3 posts are mine. Anyways, this is not turning out at all how I had planned. I wanted to write daily about my xyrem experience but it just has not happened. Still no up on the dose since my neuro is the only one in his office that can manage the stuff.
So every nigh I lay there and get really really sleepy but never make it into sleep, so I never take the second dose and down an ultram so i can get some sleep before work. Wierd thing is that I have had very little to no daytime symptoms. The sewing machine legs are just about gone unless I skip xyrem for a night alltogether like when I was sick then I get the daytime stuff back. Sorry this one was so long. Can anyone chime in with some advise...grrrr
Thanks everyone for listening to my rants on here.

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Xyrem, it works!

xyrem, it works