Anticonvulsants?
Hi Em,
sorry it's taken so long for me to jump in here, but today I finally got a chance to read the thread the whole way through.
First, yeah for your hubby, I have a hero just like him. Yes, he made a huge difference in the care and type of care I got, well into my treatment. I think it is helpful to have partners and spouses, help tell our stories. I'm so glad he went with you.
Second and most important. You are a very worthy person and deserve a great Quality of Life just like any one of us here. In fact it was one of the things I brought up to (not naming names) some of the people at the National Meeting. I simply asked, "if we are such a small community that seems to be in the know about this, why aren't we tag teaming tough cases? Why can't several of the best get together and help with the tougher cases? Why?"
I'm not telling you that I don't have my share of days that hour to hour it just seems to be work for the begining of the day til I can finally fall asleep, that day or a week later. It's an insane way to go through life, and hopelessness is a major part of RLS, after you've reached a certain point on the severity level. Yes, I do feel hopeless some days. Yes, I have to fight to have my new eyes about living with RLS, sometimes it's daily. But I fight and I will fight for you too. I think many of us here would, do, and will continue to.
If it helps, I believe that RLS was only in my legs as a kid, toddler, and as I aged, the RLS progressed. Not to mention that the trama of a broken leg set into action a major change and seemingly unreversable severity of my RLS. Not just my legs, but arms, scalp, left ear, tip of my nose and forehead, a whole body experience. So to those that believe that RLS fits nicely into a tiny box with 4 criteria, wake up and smell the coffee, it's just no that simple.
Yes, I went through numbers of medications, test, and doctors, before I got help. And then had to fight for that too. I also think maybe I was suppose to have RLS, I could have worse, right? Well, it certainly doesn't feel like something light or managable when you don't sleep and can't escape the feeling, the pain, or the exhaustion, for long periods of time. But I got mad and faught as hard as I could. When I could not others faught for me. We will fight this with you. You just keep truding back here and we, I am sure, will keep telling you your loved, needed, and so wanted! My Dear, I found hope here and I know you will too!
Your worthy of a good Quality of Life TOO! It's a doable thing.
I'd probably go to Rochester.
Love hugs and the moon always with you.
Lynne
sorry it's taken so long for me to jump in here, but today I finally got a chance to read the thread the whole way through.
First, yeah for your hubby, I have a hero just like him. Yes, he made a huge difference in the care and type of care I got, well into my treatment. I think it is helpful to have partners and spouses, help tell our stories. I'm so glad he went with you.
Second and most important. You are a very worthy person and deserve a great Quality of Life just like any one of us here. In fact it was one of the things I brought up to (not naming names) some of the people at the National Meeting. I simply asked, "if we are such a small community that seems to be in the know about this, why aren't we tag teaming tough cases? Why can't several of the best get together and help with the tougher cases? Why?"
I'm not telling you that I don't have my share of days that hour to hour it just seems to be work for the begining of the day til I can finally fall asleep, that day or a week later. It's an insane way to go through life, and hopelessness is a major part of RLS, after you've reached a certain point on the severity level. Yes, I do feel hopeless some days. Yes, I have to fight to have my new eyes about living with RLS, sometimes it's daily. But I fight and I will fight for you too. I think many of us here would, do, and will continue to.
If it helps, I believe that RLS was only in my legs as a kid, toddler, and as I aged, the RLS progressed. Not to mention that the trama of a broken leg set into action a major change and seemingly unreversable severity of my RLS. Not just my legs, but arms, scalp, left ear, tip of my nose and forehead, a whole body experience. So to those that believe that RLS fits nicely into a tiny box with 4 criteria, wake up and smell the coffee, it's just no that simple.
Yes, I went through numbers of medications, test, and doctors, before I got help. And then had to fight for that too. I also think maybe I was suppose to have RLS, I could have worse, right? Well, it certainly doesn't feel like something light or managable when you don't sleep and can't escape the feeling, the pain, or the exhaustion, for long periods of time. But I got mad and faught as hard as I could. When I could not others faught for me. We will fight this with you. You just keep truding back here and we, I am sure, will keep telling you your loved, needed, and so wanted! My Dear, I found hope here and I know you will too!
Your worthy of a good Quality of Life TOO! It's a doable thing.
I'd probably go to Rochester.
Love hugs and the moon always with you.
Lynne
Em, I'm not amazing, I just get torked off and say it before my brain stops me.
I see myself in you, or as I was when I came to this board. I used to say to a dear friend of mine, I'm lost in the woods and have climbed up a tree out of desperation, and there are days I'm hanging onto the branch with just finger tips. Well, I might still be in the woods, but I'm looking for a way out now. Your raft will not sink if I have a choice, and my bet others feel the same here. Someone came looking for me, and trust me we are all swimming, rowing, out-boarding our way to you. Your not alone.
Having never really spoken to many people about RLS, having never spoken to others on anything like the internet, having no clue if hope was in my future or not. I showed up here, just like the rest of us here. It wasn't like we did some magical medicine to feel different, because we all know that magic takes time, but I did find a piece of myself in the support offered here and I found a voice. Huge thing in my life. I'm still learning Em. I'm still not really there either, but I will be one day and to heck with those that tell me I can't.
I think almost every one here, if at the severity that effects them daily, could tell you, we are not who we thought we'd be. Yes, there is true grief, hard to handle some days on top of what we already have been given. No, I was not the mother, the wife, the friend, daughter, sister, I always thought I'd be. I often wondered what happened to make myself what I am today, but truth is, it is just life, some of which I have no choices in. I have made friends with Lynne, lifelong RLSer, she tough, sleepy, pained, reads things wrong some days, but she is ok. Em, will find Emily, the new one and she'll make friends with her too.
And it's people like you, Rebbecca, Penguin, so many others that give me guts. I want answers and good treatments, not just for me, but for us all. I have no problem making others mad, and telling them what I see to be the truth. I'll try it the nice way a couple of times, and then we'll just go to the mattresses. What the heck, they can't fire me from the community and someone needs to be told some things straight out. I've got help too, Em, I just hung out with some of the best in this RLS community and I know they work harder than I and probably better or nicer. But we are not alone in this fight.
I got a rope tied to your raft and you may feel like your drifting, but I'm towing you with me hon!
Hugs and yes, the crescent moon hangs high tonight, the beauty is it's for all of us.
Love Lynne
However, it's not always a bad thing. I'm verbally brave, just the facts, not always nice about it and I have used it well to educate myself and others.
I see myself in you, or as I was when I came to this board. I used to say to a dear friend of mine, I'm lost in the woods and have climbed up a tree out of desperation, and there are days I'm hanging onto the branch with just finger tips. Well, I might still be in the woods, but I'm looking for a way out now. Your raft will not sink if I have a choice, and my bet others feel the same here. Someone came looking for me, and trust me we are all swimming, rowing, out-boarding our way to you. Your not alone.
Having never really spoken to many people about RLS, having never spoken to others on anything like the internet, having no clue if hope was in my future or not. I showed up here, just like the rest of us here. It wasn't like we did some magical medicine to feel different, because we all know that magic takes time, but I did find a piece of myself in the support offered here and I found a voice. Huge thing in my life. I'm still learning Em. I'm still not really there either, but I will be one day and to heck with those that tell me I can't.
I think almost every one here, if at the severity that effects them daily, could tell you, we are not who we thought we'd be. Yes, there is true grief, hard to handle some days on top of what we already have been given. No, I was not the mother, the wife, the friend, daughter, sister, I always thought I'd be. I often wondered what happened to make myself what I am today, but truth is, it is just life, some of which I have no choices in. I have made friends with Lynne, lifelong RLSer, she tough, sleepy, pained, reads things wrong some days, but she is ok. Em, will find Emily, the new one and she'll make friends with her too.
And it's people like you, Rebbecca, Penguin, so many others that give me guts. I want answers and good treatments, not just for me, but for us all. I have no problem making others mad, and telling them what I see to be the truth. I'll try it the nice way a couple of times, and then we'll just go to the mattresses. What the heck, they can't fire me from the community and someone needs to be told some things straight out. I've got help too, Em, I just hung out with some of the best in this RLS community and I know they work harder than I and probably better or nicer. But we are not alone in this fight.
I got a rope tied to your raft and you may feel like your drifting, but I'm towing you with me hon!
Hugs and yes, the crescent moon hangs high tonight, the beauty is it's for all of us.
Love Lynne
However, it's not always a bad thing. I'm verbally brave, just the facts, not always nice about it and I have used it well to educate myself and others.
Enily
That raft is big enough for more than you, more than two, maybe three or more! You know, Lynne said she could see herself in you--well, I kinda of feel the same way. I was there, may be there again. Have been several times.
That doesn't make you feel better, honey, I know. I just want you to know that there is refuge among friends--maybe not for long, maybe just like a good shot in the arm. But, Lynne's moon--actually it's not Lynne's moon, but the fact that Lynne shared the moon she had with her boys with all of us--- Lynne's Moon and Our Moon is always there. And, it's beautiful and shines bright and never, ever lets us forget that we are all here for each other. Whether it's a tree up in the woods
or a raft in the ocean, you will NEVER be alone as long as you have freinds--- Friends who care and share and that's what this support board is all about, honey.
Love and Big HUGS
Jan
That raft is big enough for more than you, more than two, maybe three or more! You know, Lynne said she could see herself in you--well, I kinda of feel the same way. I was there, may be there again. Have been several times.
That doesn't make you feel better, honey, I know. I just want you to know that there is refuge among friends--maybe not for long, maybe just like a good shot in the arm. But, Lynne's moon--actually it's not Lynne's moon, but the fact that Lynne shared the moon she had with her boys with all of us--- Lynne's Moon and Our Moon is always there. And, it's beautiful and shines bright and never, ever lets us forget that we are all here for each other. Whether it's a tree up in the woods
or a raft in the ocean, you will NEVER be alone as long as you have freinds--- Friends who care and share and that's what this support board is all about, honey.
Love and Big HUGS
Jan
No one is alone who had friends.
anyone get worse from anticonvulsants
Hi Em I could not say it any better than Lynne and Jan did. I just wish I could take the pain away. I do ask God everynight to please help you through this and will continue to do so until I know you are feeling much, much better.
Please have a nice restful weekend and hope that you had a nice Thanksgiving.
Please have a nice restful weekend and hope that you had a nice Thanksgiving.
Charlene
Taking one day at a time
Taking one day at a time
My heart breaks that anyone suffers as you have. I think more so because I can relate to that feeling of not being who you know yourself to be. I'm sure you know that if we could carry you we could. For now, we are all rowing madly on your behalf.
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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ViewsAskew
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Stopping methadone (any opioid) can cause a temporary increase in symptoms. It's worse the longer you take it - you seem so sensitive to changes in your chemistry, though - so maybe it's worse for you. It's just cruel to add this on top of the other.
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.
Emily,
I can hear your frustration and that you are absolutely at your wits end. Some of the other folks on the board can do better than I can do with regard to giving you advice, but I want you to know that you are heard. I am pulling for you, my friend. Don't give up!
I can hear your frustration and that you are absolutely at your wits end. Some of the other folks on the board can do better than I can do with regard to giving you advice, but I want you to know that you are heard. I am pulling for you, my friend. Don't give up!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
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ViewsAskew
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- Posts: 16585
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Wish I had an answer. I augmented on Mirapex in a week. I'd already augmented on it when I tried Requip and Sinemet. With one dose of Sinemet, I had torturous RLS for 36 hours. BUT - I was already over the top from the Mirapex. Requip caused instant and horrific rebound after the first dose. Again, I was already augmented from the Mirapex.
So, I don't know. Obviously, one dose can cause problems. But that was in the context of being on a similar drug that has caused problems.
The difference for you may be that the ADs cause RLS - they don't really cause augmentation - they increase serotonin and thereby inhibit the dopamine. This sets off the RLS. Sinemet doesn't increase serotonin - just the dopamine. It may be the key to straightening it out - (just a random thought). Maybe your chemistry was affected by the AD and has stayed that way. Maybe taking this would help.
I don't know what I'd do were I in your shoes. It's easy for me to say I'll never take them again. I wasn't on anything else when I took them and they caused me no end of misery. But, they work for the majority of those who take them. Since you haven't tried them, it would be tempting to me were I you. But, as I'm sure you are, I'd be so reluctant given the affects of the other meds you've tried. Not an easy decision. What does your doc say? Has he weighed in on what he thinks could happen?
Per the Sinemet, it works initially for almost everyone (there seems to be a small group that the DAs so not work for - but it's 0-10% in any given study - the others stop them because of side effects). Initally, it was thought of as a wonder drug. Most people don't augment for months, or even years. That's why the current recommendations are to take it PRN (as needed), no more than 4 days a week, or no more than 300 mg per week. Used like this, from what the docs say, they do not have any augmentation problems.
So, I don't know. Obviously, one dose can cause problems. But that was in the context of being on a similar drug that has caused problems.
The difference for you may be that the ADs cause RLS - they don't really cause augmentation - they increase serotonin and thereby inhibit the dopamine. This sets off the RLS. Sinemet doesn't increase serotonin - just the dopamine. It may be the key to straightening it out - (just a random thought). Maybe your chemistry was affected by the AD and has stayed that way. Maybe taking this would help.
I don't know what I'd do were I in your shoes. It's easy for me to say I'll never take them again. I wasn't on anything else when I took them and they caused me no end of misery. But, they work for the majority of those who take them. Since you haven't tried them, it would be tempting to me were I you. But, as I'm sure you are, I'd be so reluctant given the affects of the other meds you've tried. Not an easy decision. What does your doc say? Has he weighed in on what he thinks could happen?
Per the Sinemet, it works initially for almost everyone (there seems to be a small group that the DAs so not work for - but it's 0-10% in any given study - the others stop them because of side effects). Initally, it was thought of as a wonder drug. Most people don't augment for months, or even years. That's why the current recommendations are to take it PRN (as needed), no more than 4 days a week, or no more than 300 mg per week. Used like this, from what the docs say, they do not have any augmentation problems.
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.