Xyrem, it works!

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
coaster
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Joined: Fri Jul 14, 2006 12:56 am
Location: Wisconsin

Post by coaster »

Thanks, found it. I haven't been in that section because I don't see myself as "New to RLS" :lol:
~ Tim ~
hot topics & current events: The Bill Sebastian Forum

rfishburn
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Post by rfishburn »

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.....
Randy

rfishburn
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Post by rfishburn »

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.
Randy

ViewsAskew
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Post by ViewsAskew »

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?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rfishburn
Posts: 117
Joined: Fri Jul 21, 2006 10:27 pm
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Post by rfishburn »

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.
Randy

ViewsAskew
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Post by ViewsAskew »

LUCK!!!!!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rfishburn
Posts: 117
Joined: Fri Jul 21, 2006 10:27 pm
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Post by rfishburn »

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.
Randy

ctravel12
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xyrem, it works

Post by ctravel12 »

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.
Charlene
Taking one day at a time

rfishburn
Posts: 117
Joined: Fri Jul 21, 2006 10:27 pm
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Post by rfishburn »

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.
Randy

rfishburn
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Post by rfishburn »

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.
Randy

ViewsAskew
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Post by ViewsAskew »

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.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

FidgetBoy
Posts: 317
Joined: Thu Mar 16, 2006 8:07 pm
Location: Minnesota

Post by FidgetBoy »

moooooo.
Josh

rfishburn
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Post by rfishburn »

I have had the moo myself.
Randy

rfishburn
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Post by rfishburn »

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.
Randy

rfishburn
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Post by rfishburn »

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.
Randy

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