XYREM
XYREM
Frustration is setting in...after being sick and being off xyrem for a bit my knees were better, now been back on xyrem and at a lower dose and the tendonitis is back full force. I really don't want to call the neuro, he had been a little frustrated that everything seemed to not work or side effects were too much for me.
Randy
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I am glad to hear you know that cause. . .sorry that it's the drug. How frustrating for you. Randy, I can't remember your history - sounds like you've tried the DAs, benzos, etc. and none work or cause problems. Em is having the same problem and her RLS is very severe. How severe is yours? It might be interesting for the two of you to compare notes. Who knows? Might not help but it could...
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.
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.
Strange enough the painfull daytime symptoms very mild and random now...I wonder if getting off all the narcotics and benzo's helped mediate those symptoms. I assume it's back to narcotics if I cannot tolerate the xyrem. Or maybe alternate them and let the knees recover for a month before going back to xyrem. Sometimes it does feel like the end of the rope after you've done the DA's, benzo's, narcotics and seizure meds...I did not take it last night though and even though I am tired I generally feel better today.
Randy
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So far, I only recall one or two people (on three different RLS boards) saying that xyrem worked well for them. When Randy mentioned it, I was excited about it. But it sounds like it was tough to get to a good dose and had lots of side effects. Maybe, like a lot of things, it works better in smaller doses.
I'd also love for anyone else it's worked for to chime in!
I'd also love for anyone else it's worked for to chime in!
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.
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.
Since september of last year I think. It actually does real well for the sleep but I get this tendonitis. I called xyrem and according to them 5 percent of the people taking it get some sort of localised pain or tendonitis. If I alternate one month off and one on I do well. Thats probably why I have not posted in a while. For most I have talked to it is hard to find the right dose, to little and your stoned for 4 or 5 hours, to much and there are many side effects, including the tendonitis. Others for me have included waking wiht my nervous system so reved up I can barely drive straight....Interesting stuff to say the least.
Randy
Randy, Guess I don't remember but did you try Lyrica as one of the "seizure" drugs you tried? Is there anything that worked in the past that you can try to cycle throught again? Sorry, things are not clicking just now. Will pray that the future will bring better success.
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