After a bazillion drugs the last 13 years, I thought Mirapex and Klonopine were the cure for me. Now, the Mirapex is rebounding (it even caused my hand to "claw" which is really scary). I'm trying to get off Mirapex and am down to 1 1/2 of those .125 pills every day, not very significant I'm told.
My doctor has offered Methadone, but I want to be sure I've tried everything else first and also because I've heard Methadone is for the hardest cases. One thing I've never tried are those sleep drugs, Ambian and Lunesta. I asked my doc, he said Kaiser doesn't prescribe them, but suggested I might try Tramazepan.
Any successs with that? I am not having RLS during the day, most of the time now. It's like cutting back on the Mirapex has reduced those symptoms. And, I'm retired, so I can walk around when I'm feeling uneasy.
BUT the nights are hideous and I may be getting four hours of sleep. I know you'all understand how awful that is.
So many drugs have backfired that I want to be cautious.
Any adivce, experience, would be appreciated.
Tramazepan ....before trying Methadone?
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ViewsAskew
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Your experience sounds much like mine, all the way to cutting down the Mirapex, which reduced the augmentation. I got down to 1/2 of a .125 and still had problems with it and other drugs working, though. I tried temazapam. It's better than clonazepam in the sense that it has a much shorter half-life, so gets out of your system more quickly. It didn't solve my problems, though.
None of the sleeping drugs helped me, either.
Truly? In my opinion, only stopping the Mirapex completely will tell you what symptoms you actually have. Use the Methadone to stop it, then stop the Methadone in three weeks. Take nothing for a week. See what happens.
That really seems the best way to determine it, to me. Then, try the temazapam if you want. Or another opioid, or Ultram. But, I am pretty confident from my experience and that of many others I've read that until you dump the Mirapex, the other drugs will not work as well and you won't know the true level of your RLS.
None of the sleeping drugs helped me, either.
Truly? In my opinion, only stopping the Mirapex completely will tell you what symptoms you actually have. Use the Methadone to stop it, then stop the Methadone in three weeks. Take nothing for a week. See what happens.
That really seems the best way to determine it, to me. Then, try the temazapam if you want. Or another opioid, or Ultram. But, I am pretty confident from my experience and that of many others I've read that until you dump the Mirapex, the other drugs will not work as well and you won't know the true level of your RLS.
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.
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ViewsAskew
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Nope - as soon as the Methadone worked, I dumped the K - but very slowly as I was one that became terribly dependent. Took me 6 or 7 months, but I got off and only take the Methadone now. You can consider other things once you stop the Mirapex, though. See what works. You don't have to stay on 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.
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.
Doety,
While I've never taken methadone (yet), I understand it works for most people who try it. I have taken Klonopin for nearly 3 years at an average daily dose of 1.25mg. My experiences with Mirapex and Requip are unfortunately very similar to yours...augmentation and rebound galore. I looked at notes I wrote over the past 3 years in which I mentioned the medications I was taking, and also listed any abnormal symptoms I experienced. I did that this morning, and the two medications which consistently led to augmentation, rebound, painful symptoms and insomnia were Mirapex and Requip. I know that these meds work for many people with RLS, but the stuff is poison to me, and I'll never take them again. I'm certain that the pain in my right leg, which has been worse today than it's ever been, is a result of trying Requip one more time (to try to avoid taking any more new medications). Like Ann said, very GRADUALLY reducing the quantity of Klonopin you're taking as methadone begins to control your symptoms is the best way to do that...I'll eventually wean myself off Klonopin as soon as I find a medication or combination that works without it. I've been using it to help me with sleep, but whenever I try to reduce the quantity I'm taking, the first withdrawal symptoms that appear are those of RLS. So, like I mentioned earlier, until I find medications that cover my RLS symptoms and insomnia, I'm not going to rock my boat too much by adding and subtracting too many meds at one time. Since I've been taking Klonopin, I've noticed that the sleeping meds: Ambien, Lunesta, estazolam and temezapam just don't work very well for me...they put me to sleep OK, but only give me about 2-3 hours of sleep. I know that you're gonna succeed in finding the right medication combination that works for YOU, and after all, that's what's most important...my experiences, or those of anyone else may not apply to you, so keep an open mind about trying new things. Take other people's ideas and experiences that help you, and discard those that don't. Hope you have a good night. ---Andy
While I've never taken methadone (yet), I understand it works for most people who try it. I have taken Klonopin for nearly 3 years at an average daily dose of 1.25mg. My experiences with Mirapex and Requip are unfortunately very similar to yours...augmentation and rebound galore. I looked at notes I wrote over the past 3 years in which I mentioned the medications I was taking, and also listed any abnormal symptoms I experienced. I did that this morning, and the two medications which consistently led to augmentation, rebound, painful symptoms and insomnia were Mirapex and Requip. I know that these meds work for many people with RLS, but the stuff is poison to me, and I'll never take them again. I'm certain that the pain in my right leg, which has been worse today than it's ever been, is a result of trying Requip one more time (to try to avoid taking any more new medications). Like Ann said, very GRADUALLY reducing the quantity of Klonopin you're taking as methadone begins to control your symptoms is the best way to do that...I'll eventually wean myself off Klonopin as soon as I find a medication or combination that works without it. I've been using it to help me with sleep, but whenever I try to reduce the quantity I'm taking, the first withdrawal symptoms that appear are those of RLS. So, like I mentioned earlier, until I find medications that cover my RLS symptoms and insomnia, I'm not going to rock my boat too much by adding and subtracting too many meds at one time. Since I've been taking Klonopin, I've noticed that the sleeping meds: Ambien, Lunesta, estazolam and temezapam just don't work very well for me...they put me to sleep OK, but only give me about 2-3 hours of sleep. I know that you're gonna succeed in finding the right medication combination that works for YOU, and after all, that's what's most important...my experiences, or those of anyone else may not apply to you, so keep an open mind about trying new things. Take other people's ideas and experiences that help you, and discard those that don't. Hope you have a good night. ---Andy
Thanks for all the support. This is the most insidious "disorder." I shudder to think what trying all the range of medications has done to my body -- I think the worst was Sinemet. One fantastic thing is that the docs at the Denver Kaiser now E-MAIL and will let you e-mail them - I love it. I'll let you know what happens and will go easy on withdrawal from the K, etc.
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ViewsAskew
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Yeah, Sinemet can be devastating. I get so upset, sad, angry, and resigned each time I see someone new sign on and say their doc just gave them that. It does have a place, but not for everyday use. Getting the docs educated is just very, very hard.
Let us know what happens.
FYI, how are you? I haven't been to the We Move board in ages - just too busy. I used to read five boards - now I'm lucky just to get here.
I guess that's good - I'm functional enough to keep busy, but it feels a little TOO busy right now, lol.
Let us know what happens.
FYI, how are you? I haven't been to the We Move board in ages - just too busy. I used to read five boards - now I'm lucky just to get here.
I guess that's good - I'm functional enough to keep busy, but it feels a little TOO busy right now, lol.
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.