One of our new members emailed me and asked for info on augmentation. In case anyone else is not familiar with it, I thought I'd answer here so everyone can see it.
Simply put, augmentation is when your RLS gets worse - more intense or more frequent - when you are taking dopamine agonists like Requip, Mirapex, Sinemet, etc.
The cure? Stop the drug. This will reverse the augmentation most times, though not always. The sooner you stop the drug, the more likely the augmentation will reverse (and quickly). The longer you take the drug after augmentation starts, the greater the chances that the augmentation could be permanent.
What should you take next? If you've not taken another DA, start with a new one. If you augment of two DAs, do not take them anymore and switch to another class of drugs. According to the Mayo's Algorithm, you can try opioids, benzo's or anti-seizure meds if you cannot take the DAs. Anecdotally, it seems that many people who augment seem to do well on opioids.
What are the chances of getting augmentation? It's not really known as no studies have been done. Some say around 30 percent for Mirapex/Requip and at least 70% - though some say higher - for Sinemet.
How long does it take to augment? It is extremely variable. For some people, it is within a week. For others, it takes years. The average is thought to be at least a year to two years.
Since this is a risk, why should we take DAs to begin with? The rate of DAs success with RLS is quite high. Though some of us have side effects that preclude us from using them, the majority do not have these side effects and the DAs work well. Since it can take years to augment, and many people never do, they still remain a great choice.
Should a person even take Sinemet since the rate is so high? Only if you take it 4 days a week or less. It is fast acting, and you will not augment if you don't use it regularly. It's a great drug to take on plane trips, or to use in meetings.
Augmentation
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ViewsAskew
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Augmentation
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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SheTiger68
- Posts: 4
- Joined: Tue Jan 31, 2006 2:19 am
Mirapex augmentation? It's kind of a long post
I have a question about augmentation and Mirapex, and please forgive me if this post runs a little long, I truly would like some info before I see my neuro again. It might help to have a little history.
I was told by my internest that a prior sleep study I did for possible sleep apnea showed I have RLS (my sleep doc DID NOT tell me this, he put me on a CPAP that did nothing for me-I had to find out from an internest a full year after that study!). He put me on Mirapex, and upped my dose every two weeks until the last dosage increase had me taking .5 mg three times a day. It was horrible! A couple of days into that dose, I almost caused a car accident. I didn't FALL asleep, I was awake, then my brain shut off with my eyes closed, and I blasted through a busy intersection doing 50mph, and I had the red light! I called the doc's office as soon as I got to work, and asked to come in that day. The nurse called me back and said the doctor told me to just stop taking the Mirapex for a few days, and call back to let them know how I was doing. Argh! I did not call back, because I figured if it didn't bother them that I almost died, and would have taken at least two innocent drivers with me, then he obviously did not care about my health.
Still with me? Saw my neuro a couple months ago, I have to go every six months for a checkup due to migraines, and to get re-approved for FMLA each year for them. I actually saw my neuro's physicians assistant, and explained what happened when she questioned the "new" diagnosis of RLS. I informed her that my legs did feel slightly better on the Mirapex, but that once off cold turkey, they felt worse than they did before I started it in the first place, and asked if they could try me on Requip or something else. She consulted with the neuro, who said I shouldn't have been told to take it during the daytime, but still put me back on .5 Mirapax, ONE at night only, and said to stay on that until they see me again for my next visit, which isn't for another 3 months.
This is what the long post is leading up to. When I went for the sleep study, I had occasional bouts with "itchy", "bouncy" legs, not bad at all, pretty tolerable, and only once in a while. When I started the Mirapex, it seemed to increase, went off the pills and it got worse, put back on, it seemed to help a little at first, but gradually, I think it's getting much, much worse. Now, in addition to 24/7 itchy, crawly, needing to stretch feelings, I'm getting muscle twitches in my legs that sometimes make me kick my legs or cause my feet to pull out to the sides in order to relieve the tension (which helps for a few seconds, at best), and in the last week or so, pain in my right calf. When I first noticed it, I thought I had pulled a muscle, or had a charlie-horse. It didn't last long, and only lasted for a few minutes during the day at work. I got up, walked around, and the pain dissipated. But in this short span of time, it has gotten so much worse. It is now constant, no matter what I do, and it's not a pulled-muscle pain, it's very deep, kind of like a pain-pad that was wrapped around the bone itself. I've tried a heating pad, soaking in a hot bath, ice packs, stretching, walking, lots of massage, Tylenol, Aleve, Ibuprofen, a combination of them together, even the Tylenol with Codeine I use for migraines, and nothing is working, the pain is now constant, and last night kept me from going to sleep until I was literally so exhausted, I think I didn't fall asleep so much as pass out.
I don't know if this is an example of augmentation, or if there is the possibility of something other than RLS. I'm tempted to call my neuro and try to get in sooner, but I'm afraid they'll just up the dose of Mirapex. A coworker who has RLS, without pain, sees a Chiropractor in a nearby town that specializes in RLS, and usually uses accupuncture, massage, and hot rocks (?) for treatment. My insurance covers Chiropractors, but according to them, not "alternative" treatments like that. My coworker swears by the treatments she gets, but I cannot afford $100 a treatment, which supposedly I would have to do at least twice a week for the first six months to see any change. If I don't see a neuro or chiropractor, who else would I see for this? Before, RLS was just an afterthought or minor annoyance in my life. Now, it is all consuming. I realize I should see a doctor, but I am truly afraid of what else they'll do to me! My deepest apologies for such a long post, but could anyone help?
I was told by my internest that a prior sleep study I did for possible sleep apnea showed I have RLS (my sleep doc DID NOT tell me this, he put me on a CPAP that did nothing for me-I had to find out from an internest a full year after that study!). He put me on Mirapex, and upped my dose every two weeks until the last dosage increase had me taking .5 mg three times a day. It was horrible! A couple of days into that dose, I almost caused a car accident. I didn't FALL asleep, I was awake, then my brain shut off with my eyes closed, and I blasted through a busy intersection doing 50mph, and I had the red light! I called the doc's office as soon as I got to work, and asked to come in that day. The nurse called me back and said the doctor told me to just stop taking the Mirapex for a few days, and call back to let them know how I was doing. Argh! I did not call back, because I figured if it didn't bother them that I almost died, and would have taken at least two innocent drivers with me, then he obviously did not care about my health.
Still with me? Saw my neuro a couple months ago, I have to go every six months for a checkup due to migraines, and to get re-approved for FMLA each year for them. I actually saw my neuro's physicians assistant, and explained what happened when she questioned the "new" diagnosis of RLS. I informed her that my legs did feel slightly better on the Mirapex, but that once off cold turkey, they felt worse than they did before I started it in the first place, and asked if they could try me on Requip or something else. She consulted with the neuro, who said I shouldn't have been told to take it during the daytime, but still put me back on .5 Mirapax, ONE at night only, and said to stay on that until they see me again for my next visit, which isn't for another 3 months.
This is what the long post is leading up to. When I went for the sleep study, I had occasional bouts with "itchy", "bouncy" legs, not bad at all, pretty tolerable, and only once in a while. When I started the Mirapex, it seemed to increase, went off the pills and it got worse, put back on, it seemed to help a little at first, but gradually, I think it's getting much, much worse. Now, in addition to 24/7 itchy, crawly, needing to stretch feelings, I'm getting muscle twitches in my legs that sometimes make me kick my legs or cause my feet to pull out to the sides in order to relieve the tension (which helps for a few seconds, at best), and in the last week or so, pain in my right calf. When I first noticed it, I thought I had pulled a muscle, or had a charlie-horse. It didn't last long, and only lasted for a few minutes during the day at work. I got up, walked around, and the pain dissipated. But in this short span of time, it has gotten so much worse. It is now constant, no matter what I do, and it's not a pulled-muscle pain, it's very deep, kind of like a pain-pad that was wrapped around the bone itself. I've tried a heating pad, soaking in a hot bath, ice packs, stretching, walking, lots of massage, Tylenol, Aleve, Ibuprofen, a combination of them together, even the Tylenol with Codeine I use for migraines, and nothing is working, the pain is now constant, and last night kept me from going to sleep until I was literally so exhausted, I think I didn't fall asleep so much as pass out.
I don't know if this is an example of augmentation, or if there is the possibility of something other than RLS. I'm tempted to call my neuro and try to get in sooner, but I'm afraid they'll just up the dose of Mirapex. A coworker who has RLS, without pain, sees a Chiropractor in a nearby town that specializes in RLS, and usually uses accupuncture, massage, and hot rocks (?) for treatment. My insurance covers Chiropractors, but according to them, not "alternative" treatments like that. My coworker swears by the treatments she gets, but I cannot afford $100 a treatment, which supposedly I would have to do at least twice a week for the first six months to see any change. If I don't see a neuro or chiropractor, who else would I see for this? Before, RLS was just an afterthought or minor annoyance in my life. Now, it is all consuming. I realize I should see a doctor, but I am truly afraid of what else they'll do to me! My deepest apologies for such a long post, but could anyone help?
I live my life by these five simple words-"Everything Happens For A Reason"
augmentation
Welcome SheTiger68. Please do not apologize for doing long post. It helps us to understand what you are going through. I am so sorry about all what has happened to you. You have found a good group as I know other members will post and give you some good sound advise.
I would suggest that you look at the forum New to RLS "Managing RLS" It has alot of good info on it and also the Mayo Clinic Algorithim. If you are able to copy the info from the Mayo Clinic that would be helpful and bring it to your dr and/or neurologist.
How long have you been taken Mirapex? You could be augmenting (having rls anytime of the day or night)
Please keep us posted on how you are doing. We all do care and will offer as much support as we can. We are not drs and cannot give medical advise but the support is worth a thousand words.
Reading alot of the old and new posts are also good as there is alot of good info out there.
I would suggest that you look at the forum New to RLS "Managing RLS" It has alot of good info on it and also the Mayo Clinic Algorithim. If you are able to copy the info from the Mayo Clinic that would be helpful and bring it to your dr and/or neurologist.
How long have you been taken Mirapex? You could be augmenting (having rls anytime of the day or night)
Please keep us posted on how you are doing. We all do care and will offer as much support as we can. We are not drs and cannot give medical advise but the support is worth a thousand words.
Reading alot of the old and new posts are also good as there is alot of good info out there.
Charlene
Taking one day at a time
Taking one day at a time
Hi SheTiger,
There is such a wealth of information on the various meds on this board. We are so lucky to have all this knowledge right here at our fingertips. Here are a couple easy non-med things you might also want to check/try in addition to the meds, particularly if you have augmentation.
The first thing would be to have your ferritin (stored iron) levels checked. My neurologist prescribed Requip but fortunately before I started it, I discovered that my ferritin was low. I am one of the few lucky ones who has found relief with lots of iron under my physician’s supervision (it can be toxic if you take more than you need). It sounds rather simplistic, but I don’t understand why doctors don’t test ferritin levels first. It seems like, at even a hint of RLS, that should be the first thing. It’s just a simple blood test. So, you might want to test that if you haven’t already.
The second suggestion will sound really off-the-wall. I haven’t heard or read it anywhere, but it works so well for me. I accidentally discovered that the nerves in the soles of my feet are key with my RLS, muscle pain, buzzing & tingling in my legs. I’ve found that if I apply pressure to sore spots on the soles of my feet my muscles relax and the restless charge disappears (mostly one spot on the sole, up against the ball of my foot between the big & second toe). I apply constant pressure with a knuckle or PinkPearl-like eraser on each spot until that spot quits hurting. Five to ten minutes working on a foot can give me from two to six hours of blessed sleep, depending on how bad my RLS is at the time, and I don’t even have to get out of bed to do it. The sore spots are pretty deep and require some significant pressure so a simple foot rub may not find them. Interestingly, when I told a pediatrician friend that working on one foot fixed both legs, she said that would make sense if it had to do with nerves. The other thing that I’ve found is that my RLS is much worse if I’m wearing shoes without major arch support. I bought myself some pricey shoes with exaggerated arch supports like the nurses wear (can I say the brand here? – Dansko). Walking in them is like a massage right where I need it.
Another thing – you are the first person I’ve seen who mentioned stretching. I’ve never been one to stretch, but about 6 months before my RLS hit, I started getting that “needing to stretch feeling,” as you put it - sometimes 25 times a day - interesting.
Anyway, these are a couple things you can try without fear of worsening augmentation. If they don’t work for you, no harm done. I hope you find relief quickly.
Please let us know how things go.
Elizabeth :- )
There is such a wealth of information on the various meds on this board. We are so lucky to have all this knowledge right here at our fingertips. Here are a couple easy non-med things you might also want to check/try in addition to the meds, particularly if you have augmentation.
The first thing would be to have your ferritin (stored iron) levels checked. My neurologist prescribed Requip but fortunately before I started it, I discovered that my ferritin was low. I am one of the few lucky ones who has found relief with lots of iron under my physician’s supervision (it can be toxic if you take more than you need). It sounds rather simplistic, but I don’t understand why doctors don’t test ferritin levels first. It seems like, at even a hint of RLS, that should be the first thing. It’s just a simple blood test. So, you might want to test that if you haven’t already.
The second suggestion will sound really off-the-wall. I haven’t heard or read it anywhere, but it works so well for me. I accidentally discovered that the nerves in the soles of my feet are key with my RLS, muscle pain, buzzing & tingling in my legs. I’ve found that if I apply pressure to sore spots on the soles of my feet my muscles relax and the restless charge disappears (mostly one spot on the sole, up against the ball of my foot between the big & second toe). I apply constant pressure with a knuckle or PinkPearl-like eraser on each spot until that spot quits hurting. Five to ten minutes working on a foot can give me from two to six hours of blessed sleep, depending on how bad my RLS is at the time, and I don’t even have to get out of bed to do it. The sore spots are pretty deep and require some significant pressure so a simple foot rub may not find them. Interestingly, when I told a pediatrician friend that working on one foot fixed both legs, she said that would make sense if it had to do with nerves. The other thing that I’ve found is that my RLS is much worse if I’m wearing shoes without major arch support. I bought myself some pricey shoes with exaggerated arch supports like the nurses wear (can I say the brand here? – Dansko). Walking in them is like a massage right where I need it.
Another thing – you are the first person I’ve seen who mentioned stretching. I’ve never been one to stretch, but about 6 months before my RLS hit, I started getting that “needing to stretch feeling,” as you put it - sometimes 25 times a day - interesting.
Anyway, these are a couple things you can try without fear of worsening augmentation. If they don’t work for you, no harm done. I hope you find relief quickly.
Please let us know how things go.
Elizabeth :- )
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SheTiger68
- Posts: 4
- Joined: Tue Jan 31, 2006 2:19 am
I think I will have my ferritin retested. My internest ordered a bunch of labs when I was referred to him for extreme exhaustion; initially he thought I might have had fibromyalgia. He asked about my iron levels, and I told him that every time I went to donate blood, I had to take ferrous sulfate twice a day for at least 4-5 days before my scheduled donation date, and even then, I always just scraped by. A couple of times I couldn't even get my levels high enough to donate. He told me to immediately stop donating blood, and when my labs came back, he told me I was borderline anemic, and to keep taking the iron pills. I'm afraid I don't have the numbers, as he never gave them to me.
I informed him I can't take them on a daily basis long term, as I have problems with my liver, and cannot absorb them in pill form the way other people can. I found out years ago after the birth of my first daughter that repeated use of over-the-counter ferrous sulfate can be toxic to me. I couldn't even take pre-natal vitamins with my second daughter because I am so intolerant. My internest told me to pick up this stuff called Feosol, even though I warned him that I can't take any of that stuff. I did what he said, and of course, a week into taking it, my headaches came back, I couldn't keep anything down, my body ached so bad I could barely move, and I cried for a full day. I didn't mention it to him again, I just didn't take any more. When I saw my neuro this last time, she asked if I had had any more labs since then, I said no, she marked it down, and that was the last I heard. I never gave it a second thought, because I figured if the doctors weren't pursuing it, it couldn't have been that important.
Is it truly possible that having low ferritin levels can cause all this damage? And if so, how on earth can I correct this without iron pills? My husband has a family member with kind of the same problem with iron, and a couple of times her iron levels have gotten so low she has had to get blood transfusions. I do not want to go that route, but it seems like it might be headed that way. If getting my ferritin levels up will control my RLS, and maybe make that bone-weary exhaustion go away, I would gladly do anything.
P.S. With all the kits available nowadays to do testing for things at home, are there any do-it-yourself ferritin kits? And, thank you all, for being as helpful as you have been. It's a big relief to know that someone understands!
I informed him I can't take them on a daily basis long term, as I have problems with my liver, and cannot absorb them in pill form the way other people can. I found out years ago after the birth of my first daughter that repeated use of over-the-counter ferrous sulfate can be toxic to me. I couldn't even take pre-natal vitamins with my second daughter because I am so intolerant. My internest told me to pick up this stuff called Feosol, even though I warned him that I can't take any of that stuff. I did what he said, and of course, a week into taking it, my headaches came back, I couldn't keep anything down, my body ached so bad I could barely move, and I cried for a full day. I didn't mention it to him again, I just didn't take any more. When I saw my neuro this last time, she asked if I had had any more labs since then, I said no, she marked it down, and that was the last I heard. I never gave it a second thought, because I figured if the doctors weren't pursuing it, it couldn't have been that important.
Is it truly possible that having low ferritin levels can cause all this damage? And if so, how on earth can I correct this without iron pills? My husband has a family member with kind of the same problem with iron, and a couple of times her iron levels have gotten so low she has had to get blood transfusions. I do not want to go that route, but it seems like it might be headed that way. If getting my ferritin levels up will control my RLS, and maybe make that bone-weary exhaustion go away, I would gladly do anything.
P.S. With all the kits available nowadays to do testing for things at home, are there any do-it-yourself ferritin kits? And, thank you all, for being as helpful as you have been. It's a big relief to know that someone understands!
I live my life by these five simple words-"Everything Happens For A Reason"
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ViewsAskew
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Anemia could be the cause of all of this. And, then there's the question of why you are anemic.
Anemia is a leading cause of secondary RLS. Low ferritin levels are a primary association with primary RLS. These are two separate things.
Anemia can be caused by celiac disease. If you are having other strange problems, and it sounds like you are, it's worth getting a test and reading a bit about it. The most important thing to know is that you do NOT have to have the classical symptoms to have celiac. They now know that up to 80-% of undiagnosed celiacs do not follow classic symptoms, but rather have no symptoms or neurological symptoms. RLS is one of them, as is anemia, as is strange neuro symptoms with no known cause. Headaches are also common.
Of course, this doesn't mean you have it. But, the chance in the US is 1 in 150 for having it. Worth the test.
If celiac isn't the cause for the anemia, and heavy periods are not, you have to figure out what is. It may not be anything you can find, but it also may be the root of everything or at least something.
My best friend also couldn't tolerate any of the OTC iron formulations. . .but one. It took her a couple years to find it. It is called Floradix and is very expensive. You can get it at a health food store or order it online. It is worth a try. It is made completely differently.
FYI, anyone with RLS should never give blood again. That was a hard one for me - I have given many gallons prior to my severe RLS. No doubt that contributed to it.
Are you still on the Mirapex? If so, I would definitely call my doc and request to stop it immediately. Explain that you want a break from this category of drugs for a few weeks to see if it might be involved in the problems. During that time, ask if you can take an opioid or anticonvulsant instead. They won't like the opioids, probably, but they do work for a lot of people. Also, read the Mayo Clinic Algorithm - you can get to it from the link in my signature below. It shows that opioids should not be withheld if other things are not working.
Sorry you had to find us. Hope we have some info that will help you.
Anemia is a leading cause of secondary RLS. Low ferritin levels are a primary association with primary RLS. These are two separate things.
Anemia can be caused by celiac disease. If you are having other strange problems, and it sounds like you are, it's worth getting a test and reading a bit about it. The most important thing to know is that you do NOT have to have the classical symptoms to have celiac. They now know that up to 80-% of undiagnosed celiacs do not follow classic symptoms, but rather have no symptoms or neurological symptoms. RLS is one of them, as is anemia, as is strange neuro symptoms with no known cause. Headaches are also common.
Of course, this doesn't mean you have it. But, the chance in the US is 1 in 150 for having it. Worth the test.
If celiac isn't the cause for the anemia, and heavy periods are not, you have to figure out what is. It may not be anything you can find, but it also may be the root of everything or at least something.
My best friend also couldn't tolerate any of the OTC iron formulations. . .but one. It took her a couple years to find it. It is called Floradix and is very expensive. You can get it at a health food store or order it online. It is worth a try. It is made completely differently.
FYI, anyone with RLS should never give blood again. That was a hard one for me - I have given many gallons prior to my severe RLS. No doubt that contributed to it.
Are you still on the Mirapex? If so, I would definitely call my doc and request to stop it immediately. Explain that you want a break from this category of drugs for a few weeks to see if it might be involved in the problems. During that time, ask if you can take an opioid or anticonvulsant instead. They won't like the opioids, probably, but they do work for a lot of people. Also, read the Mayo Clinic Algorithm - you can get to it from the link in my signature below. It shows that opioids should not be withheld if other things are not working.
Sorry you had to find us. Hope we have some info that will help you.
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.
Hi Ann
Since augmentation is at the forefront of my mind right now ... i'm thinking about a drug holiday.
I've got a couple of choices that I know will work:
- Cabergoline (highest dose - 5mg; drawbacks - recurring cough)
- Codeine
- Clonazepam (drawbacks - walking zombie)
Any ideas on what would be a suitable dosage to go on to for each of them if i'm currently on 4mg/day Ropinirole?
I know I know ... do my own research ... just thought I'd check with you first to see if you've come across any comparison dosages thought before I go trawling through the web til all hours of the morning.
Thanks heaps (((((hugs)))))
Since augmentation is at the forefront of my mind right now ... i'm thinking about a drug holiday.
I've got a couple of choices that I know will work:
- Cabergoline (highest dose - 5mg; drawbacks - recurring cough)
- Codeine
- Clonazepam (drawbacks - walking zombie)
Any ideas on what would be a suitable dosage to go on to for each of them if i'm currently on 4mg/day Ropinirole?
I know I know ... do my own research ... just thought I'd check with you first to see if you've come across any comparison dosages thought before I go trawling through the web til all hours of the morning.
Thanks heaps (((((hugs)))))
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Wish I knew. . .from my experience (and that of Brandy's and a few others on the board), you either just get through it yourself and feel awful for 1 to 3 weeks, or you use opioids. Using another DA doesn't seem to work very well for most people aqnd opioids seem to help you get through the augmentation the easiest. In US brand names, I tried Ultram - didn't work; Propoxyphene - didn't work; Neurontin - didn't work; Vicodin - vomited; and finally Methadone. I also tried stopping twice on my own. I didn't have the fortitude to handle the stopping part. I was miserable. You have shown how strong you are in the past, so you might be able to do it.
The whole time you are going through it, you'll have my long-distance hand to hold
The whole time you are going through it, you'll have my long-distance hand to hold
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.
Sorry I'm just now getting to reply to this thread. Unfortunately, I have some experience with augmentation. The first thing I want to make clear is that augmentation can be almost unbearable and Dr. B recommends that you not do it alone. Here is his response to an e-mail I sent after describing my situation: "The treatment is to get off of the drug.
However, stopping the drug will also cause short term (days to weeks) worsening of your RLS symptoms, so this must be treated. Most doctors are not familiar with augmentation or how to treat it (unfortunately). Most RLS specialists use narcotics (Vicodin, oxycodone, methadone) to cover the withdrawal period.
After a month or so, there are several choices. A different dopamine agonist can be tried and you may or may not experience the same augmentation problem. Neurontin can be used instead. You may also consider staying on low dose painkillers (the narcotics or Ultram) instead.
Treating this augmentation problem often requires working closely with an RLS specialist who is adept at this difficult situation. However, if you can receive this help, you should do very well."
I happened to be traveling at the time I augmented, so I could stop the drug, but had nothing to help me get through the 24/7 severe RLS I was experiencing. It was hell. Bring in some research that you find on this site and take it to your doctor to let him/her see that opiods are necessary (and I do mean necessary, not a luxury) when coming off of a DA on which you have augmented. I am so sorry for everyone who is dealing with this right now and I wish you the best of luck. You have got a family here and we are all here for you as you fight through it. And, let me encourage everyone to fight for quality care for yourself. It sounds like some doctors discussed here have been less than stellar. Your health is a priority and if the medical team you currently have is not working with you, find somebody who will. I recognize that doing that is a tough task when you are already exhausted and frustrated with your symptoms. But, when you find that person who will partner with you in your health care, it makes all the difference. I cried the first time I found someone who would listen to me. Sorry for the length of the post. Hope to hear good news from everyone dealing with augmentation.
However, stopping the drug will also cause short term (days to weeks) worsening of your RLS symptoms, so this must be treated. Most doctors are not familiar with augmentation or how to treat it (unfortunately). Most RLS specialists use narcotics (Vicodin, oxycodone, methadone) to cover the withdrawal period.
After a month or so, there are several choices. A different dopamine agonist can be tried and you may or may not experience the same augmentation problem. Neurontin can be used instead. You may also consider staying on low dose painkillers (the narcotics or Ultram) instead.
Treating this augmentation problem often requires working closely with an RLS specialist who is adept at this difficult situation. However, if you can receive this help, you should do very well."
I happened to be traveling at the time I augmented, so I could stop the drug, but had nothing to help me get through the 24/7 severe RLS I was experiencing. It was hell. Bring in some research that you find on this site and take it to your doctor to let him/her see that opiods are necessary (and I do mean necessary, not a luxury) when coming off of a DA on which you have augmented. I am so sorry for everyone who is dealing with this right now and I wish you the best of luck. You have got a family here and we are all here for you as you fight through it. And, let me encourage everyone to fight for quality care for yourself. It sounds like some doctors discussed here have been less than stellar. Your health is a priority and if the medical team you currently have is not working with you, find somebody who will. I recognize that doing that is a tough task when you are already exhausted and frustrated with your symptoms. But, when you find that person who will partner with you in your health care, it makes all the difference. I cried the first time I found someone who would listen to me. Sorry for the length of the post. Hope to hear good news from everyone dealing with augmentation.
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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susieandirenes
- Posts: 28
- Joined: Thu Jul 27, 2006 7:00 pm
- Location: Cinncinnati
Reading these posts for the last hour has given me the "uumph!" I need to talk to my neuro again. This time I will have a lot more ammunition!
Last time I was in I requested some Vicadin explaining that other RLS sufferers had said it helped them a lot. Only after reading here, did I realize he also thought I was seeking drugs....saying something about he was not comfortable prescribing them because 'you would use them to bring comfort when you felt like you needed it. AG..g.g...g...g...g ! ! !
How foolish I was to buy into that. I was on Permax for 8 years and have been on Mirapex for the past 2 years.
My legs finally stop at night with the Mirapex, but they drive me nuts during the day. Cannot sit up front in church any longer because I move and totally distract everyone around me; dinner out has to be eaten quickly so I can stand up; I stand up at least half the time during meetings (thankfully these are not at work since I am retired).
Don't know if the Mirapex is causing the above or not.....if so, I hate the thought of going through the process of .trying to find something else.
Last time I was in I requested some Vicadin explaining that other RLS sufferers had said it helped them a lot. Only after reading here, did I realize he also thought I was seeking drugs....saying something about he was not comfortable prescribing them because 'you would use them to bring comfort when you felt like you needed it. AG..g.g...g...g...g ! ! !
How foolish I was to buy into that. I was on Permax for 8 years and have been on Mirapex for the past 2 years.
My legs finally stop at night with the Mirapex, but they drive me nuts during the day. Cannot sit up front in church any longer because I move and totally distract everyone around me; dinner out has to be eaten quickly so I can stand up; I stand up at least half the time during meetings (thankfully these are not at work since I am retired).
Don't know if the Mirapex is causing the above or not.....if so, I hate the thought of going through the process of .trying to find something else.
augmentation
Hi Susie, Welcome to the the group as I also joined in July. So sorry that you are going through a rough time.
It sounds like you may be augmenting with mirapex. I know as I used to take Requip and in the beginning it was fine and then all of a sudden I had rls 24/7 and painful. I finally was weaned off of it and am now on clonazapem and it is working for me.
I know that this med is a control substance but if this works for me I am not going to change. Also I know what works for one may not always work for another.
I can totally relate to the eating out, going to church, etc. as that is what happened to me.
Sometimes you may have to go through a cocktail of meds before you find out what is working for you.
Did you ever check the Mayo Clinic Algorithm - that is on the forum New to RLS "Managing RLS' you may want to copy that and bring it to your dr.
Good luck to you and please keep us posted on how you are doing.
It sounds like you may be augmenting with mirapex. I know as I used to take Requip and in the beginning it was fine and then all of a sudden I had rls 24/7 and painful. I finally was weaned off of it and am now on clonazapem and it is working for me.
I know that this med is a control substance but if this works for me I am not going to change. Also I know what works for one may not always work for another.
I can totally relate to the eating out, going to church, etc. as that is what happened to me.
Sometimes you may have to go through a cocktail of meds before you find out what is working for you.
Did you ever check the Mayo Clinic Algorithm - that is on the forum New to RLS "Managing RLS' you may want to copy that and bring it to your dr.
Good luck to you and please keep us posted on how you are doing.
Charlene
Taking one day at a time
Taking one day at a time
After reading this thread, I think I have the same problem. I was on Sinemet. The Jumpy part stoped, but the pain started. I am now on Requip 1 mg at night. Still the pain. I am on neurotin 600 mg 3x a day, and Lortab 7.5 the Lortab is the only thing that stops the pain. My dr has me on 2 lortabs and that is not enough some days. I asked him ,by phone, yesterday if he could up the dosage to 3 a day and was told that was too much. I would become used to it and it would not work anymore. I asked what I was to do about the pain and was told to walk.. I'm 59 years old and have to sit down sometime..I save the lortab until late in the afternoon and one before bedtime. That leaves a lot of time during the day with the pain. I do find if I am sitting down, stretching helps. I also sit in a rocking chair so my legs will move all the time. I go to get my yearly bloodwork in 2 weeks and will see my dr in person. I've been seeing him for about 30 years and am very at ease with him. Any suggestions about how to handle the needs for more meds. I know people that drink too much and people that smoke pot. Don't drink but might try the pot.. Ha Ha.. any suggestions would be appreciated. This link helps so much. At least I know I'm not alone...Pat
Just be assertive, and ask him why 2 a day won't make you "used to it and stop working" but 3 will.
That is possibly the dumbest thing I have ever heard, honest to god. Just be assertive about the fact you're in pain. I mean last time I checked, that's what painkillers are prescribed for... pain....yeh.
You could also ask him if he would consider giving you either a time released painkiller, or give you some Tramadol (Ultram) to fill in the gaps where you need
That is possibly the dumbest thing I have ever heard, honest to god. Just be assertive about the fact you're in pain. I mean last time I checked, that's what painkillers are prescribed for... pain....yeh.
You could also ask him if he would consider giving you either a time released painkiller, or give you some Tramadol (Ultram) to fill in the gaps where you need
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ViewsAskew
- Moderator
- Posts: 16588
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
If the pain was not there until you started the drug, were it me I'd really want to stop all drugs in that class and see what happened. Some people with RLS have pain. The estimates vary. Becat's posted she's heard around 50%. At the conference they gave a lower percentage, but still a goodly amount of people. Regardless, it is recognized as part of the syndrome.
However, if it wasn't part of it before the meds, that's possibly a different issue. Yes, the RLS could be progressing. But Requip and Mirapex have been known to cause pain in some people - and the pain goes away when the meds are stopped. Not sure about Sinemet, but that's probably because it's just not prescribed as much as the other two.
This is all trial and error. Nothing works for everyone. Nothing. So, anytime something isn't working, we have the arduous task of trying something else. Until we find what does work. And, if we find that opioids work, so be it.
However, if it wasn't part of it before the meds, that's possibly a different issue. Yes, the RLS could be progressing. But Requip and Mirapex have been known to cause pain in some people - and the pain goes away when the meds are stopped. Not sure about Sinemet, but that's probably because it's just not prescribed as much as the other two.
This is all trial and error. Nothing works for everyone. Nothing. So, anytime something isn't working, we have the arduous task of trying something else. Until we find what does work. And, if we find that opioids work, so be 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.
AUGMENTATION
Thank you for your reply. I think I must be augmenting so will now discuss it with my sleep doctor.