Wait Wait Wait, no poor Lynne thing here. This is just some of my lot in life. No poor Lynne. Heck, maybe I have it because a higer power knew I couldn't keep my mouth shout about it, after I got torked off and found out how hard it was to treat......And that so many of us had it and seeemingly no doctors knew about it. Cared to learn. Or just shut the door and called , Next!
Charlene, I know this will sound silly, I do have it hard with RLS, but the worse part was letting it take over my life and me not taking control of my own treatment, educating myself, and not having anyone to share my thoughts about it with, that understood.
I do have pain, but I am better. I do have choices to make that effect my RLS, some choices are not mine and effect my RLS. But never think Poor Lynne. I'm so blessed. I have a beloved and cherished family, strange and sorted as we may be. I have several awesome friends that God gave just to my heart, becuase I needed them. I smile, I laugh, I sing, I live.
I just did not do that well before this board. Yes, I have bads days, bet we all do, many more than once a month...lol but I'm not poor Lynne.
I'm living in my life and I have this board (a wanted family), I have so much to work for, so much to keep working for.
I'm not jumping you honey, but never poor Lynne. I'm a lucky girl with a crappy disorder by genetics. That is all. And honestly, I'm doing ok with the pain part and like the rest just trying to get some sleep. The acupuncture is still doing wonders for the pain. Yahoo.
My love and hugs to you all, never forget that moon.
Lynne
RLS and Klonopin
rls and klonopin
Hi Lynne I know that your were not jumping me and I understand. I just hope that I did not hurt your feelings as I would never do that. I guess that I just used a poor choice of words. Thanks for always being there for me. I am so glad that the acupuncture is doing well for you. Have a great day. Lots of hugs to you.
Charlene
Taking one day at a time
Taking one day at a time
No hurt feelings here, but I just don't want anyone here to see me as poor Lynne. I just don't feel that way about it.
I feel that way every so often just like any one of us does. Mad, this is not reasonable to live this way, this bites. But I just think it's those days we all have.
To be honest, there are others here that I feel are so much worse off than myself. Pain can be handled if tried hard enough. Having had those attacks of the bugs, locking up, not being able to walk, or to itch yourself to the point of injury......that would be so much harder I think than my silly pain. Ok, it is not silly pain, but I have more choices I think because of the pain, where others don't.
I love you to and right back attcha with the big hugs.
Lynne
I feel that way every so often just like any one of us does. Mad, this is not reasonable to live this way, this bites. But I just think it's those days we all have.
To be honest, there are others here that I feel are so much worse off than myself. Pain can be handled if tried hard enough. Having had those attacks of the bugs, locking up, not being able to walk, or to itch yourself to the point of injury......that would be so much harder I think than my silly pain. Ok, it is not silly pain, but I have more choices I think because of the pain, where others don't.
I love you to and right back attcha with the big hugs.
Lynne
RLS & klonopin
I have been on klonopin for years for MS and it is ver addictive. See benzo.org.uk.
I was a 2.5 mgs per day and 6 years after I'm at 0,625 mg abd believe me it was not all happy days.
So if you have RLS go to meds like Mirapex.
I was a 2.5 mgs per day and 6 years after I'm at 0,625 mg abd believe me it was not all happy days.
So if you have RLS go to meds like Mirapex.
Had multiple sclerosis for 35 years +
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sugbrendas
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Hi, i've been on Klonopin for at least 15 years. .I also used to worry about addiction but not anymore.
Nothing equals a good nights sleep in my honest opinion.
I personally won't ever go trough that time of no sleep again if i can help it.
good luck!
Nothing equals a good nights sleep in my honest opinion.
I personally won't ever go trough that time of no sleep again if i can help it.
good luck!
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
rls and klonopin
Hi sugbrendas I agree with you. I am on 1mg of clonazapem since the latter part of the year and know that it is additive, but I am certainly alot better and getter better sleep too. I used to be on Requip and that was a nightmare and will not go through that again. Have a good day and am glad that you are doing good too.
Charlene
Taking one day at a time
Taking one day at a time
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sugbrendas
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Good for you,i say whatever it takes.
I've had (according now to the experts) RLS,PLMD since i was a kid.
I didn't know all of my sleepwalking and running was b/c of this.
I also think that sometimes we think the medicine quits working when in reality we've hit this terrible episode in RLS,like a flare up. I thought a couple of times the Klonopin wasn't working but was only having a severe RLS episode. I know RLS is progressive but i have come to believe we go through these huge periods where we might need a extra something for just a little while.
This has happened to me a few times. I really didn't need that Deseryl(sp) forever and maybe it wasn't good for me at all but it did make me sleep and sleepy all of the time and when i realized i was so sleepy i cut it out altogether..I went back to my 2 mgs of Klonopin and that was fine. I would love to know what causes these spikes though. My neurologist said sometimes the Dr's keep adding on and adding on meds with each episode and don't take them back off. Thats when they say "start from scratch". Thats something i'm not willing to do again,ever.
I guess what i'm saying is open your mind to the possibility that your not just getting immune to a drug that has always worked but that you may just need a short term little bit of help.
I'm not a Dr,just someone who's been through hell and back again several dozen times.
So
I've had (according now to the experts) RLS,PLMD since i was a kid.
I didn't know all of my sleepwalking and running was b/c of this.
I also think that sometimes we think the medicine quits working when in reality we've hit this terrible episode in RLS,like a flare up. I thought a couple of times the Klonopin wasn't working but was only having a severe RLS episode. I know RLS is progressive but i have come to believe we go through these huge periods where we might need a extra something for just a little while.
This has happened to me a few times. I really didn't need that Deseryl(sp) forever and maybe it wasn't good for me at all but it did make me sleep and sleepy all of the time and when i realized i was so sleepy i cut it out altogether..I went back to my 2 mgs of Klonopin and that was fine. I would love to know what causes these spikes though. My neurologist said sometimes the Dr's keep adding on and adding on meds with each episode and don't take them back off. Thats when they say "start from scratch". Thats something i'm not willing to do again,ever.
I guess what i'm saying is open your mind to the possibility that your not just getting immune to a drug that has always worked but that you may just need a short term little bit of help.
I'm not a Dr,just someone who's been through hell and back again several dozen times.
So
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
i am with you too brenda, whatever it takes to get a decent nights sleep so i can function the next day! if i get addicted so be it, i can sleep and next day i can work and also not be such a grouch to my 3 kids and hubby.
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
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sugbrendas
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Thats right! We have one chance at life,shouldn't we be the best we can be for ourselves and our families.
I haven't had a serious headache in months and i feel good(except for a back flare up). I tell you though even with all of the arthritis i have i would rather have that than no sleep!
Be well my friend!
I haven't had a serious headache in months and i feel good(except for a back flare up). I tell you though even with all of the arthritis i have i would rather have that than no sleep!
Be well my friend!
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
rls and klonopin
Hi Brenda
It is so true about being sleep deprived. I used to care about it being addictive as I did clonazapem last year and stopped because of that (above that I stopped cold turkey - not a smart thing to do). That is when I went on Requip and like I said that was definitely a nightmare. Now addictive or not, I will not stop taking it. I do not have any problems with my legs. My sleep habit is better and know that it will get better. It is so true that we only have one chance at life and to make it the best we can. LIke we have had said in the past what works for one may not work for others. Well this is working me and that makes me feel good and human again.
The nice thing now is that I am able to travel a distance and even sit for a period of time without the rls flaring up.
I will still post as I want to be able to offer support to other people and be there for them. Have a great day and hope that you continue doing good.
It is so true about being sleep deprived. I used to care about it being addictive as I did clonazapem last year and stopped because of that (above that I stopped cold turkey - not a smart thing to do). That is when I went on Requip and like I said that was definitely a nightmare. Now addictive or not, I will not stop taking it. I do not have any problems with my legs. My sleep habit is better and know that it will get better. It is so true that we only have one chance at life and to make it the best we can. LIke we have had said in the past what works for one may not work for others. Well this is working me and that makes me feel good and human again.
The nice thing now is that I am able to travel a distance and even sit for a period of time without the rls flaring up.
I will still post as I want to be able to offer support to other people and be there for them. Have a great day and hope that you continue doing good.
Charlene
Taking one day at a time
Taking one day at a time
It's so smart of you to be so careful. Really, we are science experiments and docs just hope some things work. I took Mirapex for 1 1/2 years and thought it was wonderful, then noticed I started having RLS during the day. I couldn't count on having breakfast, lunch, etc. in a restaurant. It was rebound, and I had that quickly with Senemet. I know that there's sometime a point where you'd eat dirt if someone said it would help you sleep, but if you can take the time, it would be great to look around. I'm now coming off Mirapex and as I know you've seen from the boards, it's just awful. I couldn't tell you if it would have better to not take anything.
(I've tried so many things - Requip didn't work, Sinemet, Neurontin, Vicodin, etc. etc.) I'm trying methadone right now, but can't tell if it will work unless I get the wretched Mirapex out of my system. We all wish you the best.
(I've tried so many things - Requip didn't work, Sinemet, Neurontin, Vicodin, etc. etc.) I'm trying methadone right now, but can't tell if it will work unless I get the wretched Mirapex out of my system. We all wish you the best.
RLS ans klonopin
Well here it is:
I've had MS for 35 years and been on klonopin since 88 at 2.5mgs. In 2000 decided to get off and just hit bottom. Lost 45 lbs and could not even get out of the house. I'M now down at 0.5 and cutting 1/4 pill per 3 months. Since I went down from 1.0 mg my legs strated to bother me and I went to the neuro who put me on mirapex. I've been on mirapex at 0.125mgs per day and I honestly dont know if the knonopin was not more effectice.
I've had MS for 35 years and been on klonopin since 88 at 2.5mgs. In 2000 decided to get off and just hit bottom. Lost 45 lbs and could not even get out of the house. I'M now down at 0.5 and cutting 1/4 pill per 3 months. Since I went down from 1.0 mg my legs strated to bother me and I went to the neuro who put me on mirapex. I've been on mirapex at 0.125mgs per day and I honestly dont know if the knonopin was not more effectice.
Had multiple sclerosis for 35 years +
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sugbrendas
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vinton,
if Klonopin was working so well why go off of it? I'm not a Dr but i've been on it over 20 years.
I take 2mg unless i have a flare up..I'm allowed to take 3mg's.
I know MS is different but IMHO my suggestion is find a med that makes happy and stick with it.
Brenda
if Klonopin was working so well why go off of it? I'm not a Dr but i've been on it over 20 years.
I take 2mg unless i have a flare up..I'm allowed to take 3mg's.
I know MS is different but IMHO my suggestion is find a med that makes happy and stick with it.
Brenda
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
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ViewsAskew
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Vinton, .125 is the smallest dose for Mirapex. If not working at that dose, you can either go up to .25, or take half of the .125 with a whole .125. The average dose for Mirapex is between .50 and .75, depending on the doctor.
Klonopin does work for some; if it works, be grateful. But, it doesn't work for the majority of us. Mostly it knocks us out so we aren't aware of the movements. For most of us, it does not stop them. Of course, there are some it does help, so please, no knickers in a twist for those of you it does work for
.
The major difference is that Klonopin often requires increasing doses to continue to work. Mirapex can, also, but it can be stopped much more easily. Even when you've been on it for several years and the RLS is worse when you stop it, you only have two or three weeks of misery. On the other hand, if you ever need to stop the Klonopin (and for various reasons, many of us do), it is not so easy to stop. About 50% have little or no difficulty. The other 50% go through extreme difficulty. Some people require years to stop it.
Klonopin can be a great helper to those of us who can't sleep. Even then, people like Dr B recommend a much shorter acting benzo instead. Much less likely to make a person foggy and tired the next day.
Klonopin does work for some; if it works, be grateful. But, it doesn't work for the majority of us. Mostly it knocks us out so we aren't aware of the movements. For most of us, it does not stop them. Of course, there are some it does help, so please, no knickers in a twist for those of you it does work for
.
The major difference is that Klonopin often requires increasing doses to continue to work. Mirapex can, also, but it can be stopped much more easily. Even when you've been on it for several years and the RLS is worse when you stop it, you only have two or three weeks of misery. On the other hand, if you ever need to stop the Klonopin (and for various reasons, many of us do), it is not so easy to stop. About 50% have little or no difficulty. The other 50% go through extreme difficulty. Some people require years to stop it.
Klonopin can be a great helper to those of us who can't sleep. Even then, people like Dr B recommend a much shorter acting benzo instead. Much less likely to make a person foggy and tired the next day.
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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sugbrendas
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I agree with ViewsAskew on a couple of issues.
Mirapex knocked me out , this was totally unexpected (and dangerous) for me anyway because it worked so fast and so hard.
The biggest problem i with it was it was very short acting for me.
I took it on the way to bed it was so fast. 3 hours later i would wake up drenched (in the middle of winter). So from 1am til the sun came up i was infront of a fan blowing on me. I was miserable.
I was on Klonopin 1-2mg from the start over 20 years ago. I'm still on only 2mgs. It's written for 3mgs's.
The few times they stopped it i didn't have any withdrawal. The last time they stopped the Klonopin (my suggestion-fear of addiction) ,they put me on Resteril for 2 months. The 7th week was unbearable. I woke to find my legs jerking in the air. It really scared me.
This is when my RLS symptoms at least trippled. I got better after they put me back on the Klonopin but by then I had extreme daytime movements as well as at night. It increased to jerking on my torso,arms, shoulder and my legs were just so much busyier. Jerking, the bug sensation. Electrical zaps.
Going off of the Klonopin was the worst thing i've ever done for my RLS.
I will never do it again even if i have to order out of country.
Before i stopped the Klonopin this last time i had NO daytime movements at all, just restless legs. Live and learn.
Mirapex knocked me out , this was totally unexpected (and dangerous) for me anyway because it worked so fast and so hard.
The biggest problem i with it was it was very short acting for me.
I took it on the way to bed it was so fast. 3 hours later i would wake up drenched (in the middle of winter). So from 1am til the sun came up i was infront of a fan blowing on me. I was miserable.
I was on Klonopin 1-2mg from the start over 20 years ago. I'm still on only 2mgs. It's written for 3mgs's.
The few times they stopped it i didn't have any withdrawal. The last time they stopped the Klonopin (my suggestion-fear of addiction) ,they put me on Resteril for 2 months. The 7th week was unbearable. I woke to find my legs jerking in the air. It really scared me.
This is when my RLS symptoms at least trippled. I got better after they put me back on the Klonopin but by then I had extreme daytime movements as well as at night. It increased to jerking on my torso,arms, shoulder and my legs were just so much busyier. Jerking, the bug sensation. Electrical zaps.
Going off of the Klonopin was the worst thing i've ever done for my RLS.
I will never do it again even if i have to order out of country.
Before i stopped the Klonopin this last time i had NO daytime movements at all, just restless legs. Live and learn.
Finally able to sleep on average 9 hours a night!
Brenda
Brenda