After 9 doses of Requip...I had to quit.
It not only didn't help, it made it worse. An hour after I took it, all hell broke loose.
Not to mention feeling sick to my stomach for most of the next day. Not real bad...just enough to P me off. Here's another weird thing it did...whenever I yawned (and I did all the time) my whole body shook. I've been getting two or three hours of sleep a night, and terrible sleep at that. Sit in the chair, walk around the house, walk around the yard, sit on the couch, try to sit "Indian Style" to put a little pressure on the legs, use Flexall, I wanna scream.
Anyway...today I start Carbatrol and thank God for this message board. You guys know your stuff.
What do you all know about Carbatrol?
My wife looked it up...another med for people who might have mental issues? Well, something like that.
I don't understand the connection between the two...I have leg issues.
Maybe she's reading it wrong?
Help if you can please.
Randy.
Carbatrol?
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Walking After Midnight
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Randy How r u
hey Randy,
I'm so sorry to here about the REQUIP........don't fret too much cause theres more than a few of us that could open our own pharmacies.LOL
Carbatrol is a seizure medication. That is one of the things that is tried with RLS so no biggy there. You might have seen Nuerotin as oppose to carbartol. That's all.
Please let us know how this one goes. Hun, don't give up hope it's trial and error with medications. So hang in there.
Hugs
I'm so sorry to here about the REQUIP........don't fret too much cause theres more than a few of us that could open our own pharmacies.LOL
Carbatrol is a seizure medication. That is one of the things that is tried with RLS so no biggy there. You might have seen Nuerotin as oppose to carbartol. That's all.
Please let us know how this one goes. Hun, don't give up hope it's trial and error with medications. So hang in there.
Hugs
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ViewsAskew
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Hi Randy,
Like Becat said, there are many meds used for RLS. Please don't five up yet. It seems so cruel, but finding the right drug or combination of drugs (what we call a 'cocktail') can be very difficult and take many months. If your RLS is daily and severe, or if you also have PLMD, it may take two or three drugs to really contain it and give you back some quality of life.
They really haven't identified the exact cause of RLS yet (there are several theories and lots of good research taking place, however), so no meds have been formulated specifically for it. They use meds from 4 basic medical categories. names differ by country and depending on if it is a brand name or generic:
Dopamine agonists - these could include Mirapex, carbergoline, ropinerole, Sinemet, Permax, etc. Often the first choice for daily RLS or nightly PLMD, these are Parkinson's drugs. There can be side effects, which all users should be warned of, but they work in about 80% of patients.
Anti-seizure meds - these could include Neurontin, Gabitril, tegretol, Keppra, and others. Neurontin has had the most testing, and seems to be effective for moderate RLS on its own. Most of these tend to be most effective as a second drug used in combination with one or more other drugs.
Opiates/Opioids - these include natural and synthetic drugs. Some include acetaminophen - daily usage should be monitored as it can cause other organ problems (liver, I think). This class is well-documented as being effective for most people. Because of addiction issues, many docs are afraid of it. It is often very effective when pain is involved or when the other classes do not work or can't be tolerated.
Benzodiazepines - such as temazepam, clonazepam, Valium, and many, many others. These are used for a wide variety of things including sleep, anxiety, and seizures. These can cause physical tolerance in just one month and are approved only for 1 month use by the FDA. Many doctors prescribe them for years, however, and withdrawal can be difficult for some people.
I should add that every one of these drugs causes a degree of physical dependence! You should not quit any of them 'cold turkey' and should always taper off of them following your doctor's instructions. All also have side effects; only you know if the side effects are tolerable. And some can cause addiction. Studies show that opioids/opiates used for pain or RLS are rarely addicting, however people who have had any other addiction problems should not take them.
There are lots of links to learn much more about drugs in the two 'sticky' posts in the New to RLS? section of the board.
Ann
Like Becat said, there are many meds used for RLS. Please don't five up yet. It seems so cruel, but finding the right drug or combination of drugs (what we call a 'cocktail') can be very difficult and take many months. If your RLS is daily and severe, or if you also have PLMD, it may take two or three drugs to really contain it and give you back some quality of life.
They really haven't identified the exact cause of RLS yet (there are several theories and lots of good research taking place, however), so no meds have been formulated specifically for it. They use meds from 4 basic medical categories. names differ by country and depending on if it is a brand name or generic:
Dopamine agonists - these could include Mirapex, carbergoline, ropinerole, Sinemet, Permax, etc. Often the first choice for daily RLS or nightly PLMD, these are Parkinson's drugs. There can be side effects, which all users should be warned of, but they work in about 80% of patients.
Anti-seizure meds - these could include Neurontin, Gabitril, tegretol, Keppra, and others. Neurontin has had the most testing, and seems to be effective for moderate RLS on its own. Most of these tend to be most effective as a second drug used in combination with one or more other drugs.
Opiates/Opioids - these include natural and synthetic drugs. Some include acetaminophen - daily usage should be monitored as it can cause other organ problems (liver, I think). This class is well-documented as being effective for most people. Because of addiction issues, many docs are afraid of it. It is often very effective when pain is involved or when the other classes do not work or can't be tolerated.
Benzodiazepines - such as temazepam, clonazepam, Valium, and many, many others. These are used for a wide variety of things including sleep, anxiety, and seizures. These can cause physical tolerance in just one month and are approved only for 1 month use by the FDA. Many doctors prescribe them for years, however, and withdrawal can be difficult for some people.
I should add that every one of these drugs causes a degree of physical dependence! You should not quit any of them 'cold turkey' and should always taper off of them following your doctor's instructions. All also have side effects; only you know if the side effects are tolerable. And some can cause addiction. Studies show that opioids/opiates used for pain or RLS are rarely addicting, however people who have had any other addiction problems should not take them.
There are lots of links to learn much more about drugs in the two 'sticky' posts in the New to RLS? section of the board.
Ann
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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Walking After Midnight
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You two are great.
Ann...I noticed that you are in Chicago. I'm close by and wondering if you'd found a good Neuro in Chicago that knows his stuff about RLS, or if there's a place here where that info is posted that I missed.
You know, one thing I don't understand.
You can stop reading...I'm just babbling now...venting.
I called my Neuro twice yesterday and told him about the Requip...that I couldn't take it. He tells me, through his asst. of course, to eat food with it, that the bad symptoms will go away in time, keep taking it. Easy for him to say. I wondered if he was being paid to push Requip. But 9 days was enough. So I call him back today...I tell his asst...."Look, I haven't slept in a few weeks. I need some help and I need it now. It's hard to function at work, it's hard to do anything." So she tells me to call back. That's when he puts me on the Carbatrol. "But", she says, it may take a couple weeks for the Carbatrol to start working. Just keep taking it." WHY couldn't he have given me some kind of pain killer or something that would knock it out, just for a few days so I could get some sleep?
You know, I didn't even ask. You feel like they're thinking you're a drug addict or something if you bring it up.
But...I think it's kind of uncaring of him. Actually, I think I hate that guy about right now as I sit here at 12:30 AM shaking my legs around trying to get some comfort and knowing I have to be at work at 6 this morning, and will drag my butt around that shop all day.
Ann...I noticed that you are in Chicago. I'm close by and wondering if you'd found a good Neuro in Chicago that knows his stuff about RLS, or if there's a place here where that info is posted that I missed.
You know, one thing I don't understand.
You can stop reading...I'm just babbling now...venting.
I called my Neuro twice yesterday and told him about the Requip...that I couldn't take it. He tells me, through his asst. of course, to eat food with it, that the bad symptoms will go away in time, keep taking it. Easy for him to say. I wondered if he was being paid to push Requip. But 9 days was enough. So I call him back today...I tell his asst...."Look, I haven't slept in a few weeks. I need some help and I need it now. It's hard to function at work, it's hard to do anything." So she tells me to call back. That's when he puts me on the Carbatrol. "But", she says, it may take a couple weeks for the Carbatrol to start working. Just keep taking it." WHY couldn't he have given me some kind of pain killer or something that would knock it out, just for a few days so I could get some sleep?
You know, I didn't even ask. You feel like they're thinking you're a drug addict or something if you bring it up.
But...I think it's kind of uncaring of him. Actually, I think I hate that guy about right now as I sit here at 12:30 AM shaking my legs around trying to get some comfort and knowing I have to be at work at 6 this morning, and will drag my butt around that shop all day.
Hi Randy,
Hi Randy,
Nope that is how I felt about my doctor for a couple of years. But who knows what we go through, really understands this, but us. Someone here said "I'm going to move in with my doc and wake him everytime I'm awake" i seriously thought that might be a good idea. Then maybe they'd help us faster to get some rest themselves. LOL
I know how it feels as do many people around here. I have pain and I got no sleep in 8-9 years. I never thought I see 45. I just knew my body would no make it. Other things fail after a while and I honestly started planning what should be done. I don't mean that I'd take myself out, never, God bless me. I have hope always, but I just thought my body would fail.
Finding the right medication may be the harder part of RLS. The trial and error stage means tons of appts with a doc that comes off uncaring. BUT Randy, that doc may just be following protocol, because. You should always try the lowest dose of the lowest medication first. If your going to have this the rest of your life you might need the bigger stuff (medication) later. I got mad as well, torked off at what looked like inaction to me. Then I realized that I could always ask to try something, all he could do is say no.......I'd make him explain why. So I understood how we were processing this disorder.
It's hard not to get torked at the way docs deal with us somedays. And your not a druggy, nor am I. But I needed help with pain control or management and I wanted sleep. Really most of us would rather this was easier, but it's not is it? That's ok, we help each other understand. WE teach each other how we've coped. We support one another where others can not.
Hugs to Randy. I hope today was better than you expected.
Nope that is how I felt about my doctor for a couple of years. But who knows what we go through, really understands this, but us. Someone here said "I'm going to move in with my doc and wake him everytime I'm awake" i seriously thought that might be a good idea. Then maybe they'd help us faster to get some rest themselves. LOL
I know how it feels as do many people around here. I have pain and I got no sleep in 8-9 years. I never thought I see 45. I just knew my body would no make it. Other things fail after a while and I honestly started planning what should be done. I don't mean that I'd take myself out, never, God bless me. I have hope always, but I just thought my body would fail.
Finding the right medication may be the harder part of RLS. The trial and error stage means tons of appts with a doc that comes off uncaring. BUT Randy, that doc may just be following protocol, because. You should always try the lowest dose of the lowest medication first. If your going to have this the rest of your life you might need the bigger stuff (medication) later. I got mad as well, torked off at what looked like inaction to me. Then I realized that I could always ask to try something, all he could do is say no.......I'd make him explain why. So I understood how we were processing this disorder.
It's hard not to get torked at the way docs deal with us somedays. And your not a druggy, nor am I. But I needed help with pain control or management and I wanted sleep. Really most of us would rather this was easier, but it's not is it? That's ok, we help each other understand. WE teach each other how we've coped. We support one another where others can not.
Hugs to Randy. I hope today was better than you expected.
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Guest
Randy,
Amen brother. I know how you feel about the requip. I recently changed Doctors, due to the fact that he had me on something that made my RLS/PLMD worse. My new doctor is trying me out on requip (the 2 week pack) and it hasn't worked for me either. I don't think it is making it worse it's just not working, and causing some pretty awful daytime sleepiness. I actually FELL ASLEEP at my desk yesterday! I never do that. I'm not sure if it is the Requip or the fact that since I began it I have has no sleep. At any rate I made it 7 days, and I'm just not sure I want to go there for another day. I like this new Doctor very much and she took all the information I gave her with great enthusiasum (sp)? She also gave me a scrip for 30 Restoril which I will try tonight. I have hi hopes. Keep chugging.
Bill
Amen brother. I know how you feel about the requip. I recently changed Doctors, due to the fact that he had me on something that made my RLS/PLMD worse. My new doctor is trying me out on requip (the 2 week pack) and it hasn't worked for me either. I don't think it is making it worse it's just not working, and causing some pretty awful daytime sleepiness. I actually FELL ASLEEP at my desk yesterday! I never do that. I'm not sure if it is the Requip or the fact that since I began it I have has no sleep. At any rate I made it 7 days, and I'm just not sure I want to go there for another day. I like this new Doctor very much and she took all the information I gave her with great enthusiasum (sp)? She also gave me a scrip for 30 Restoril which I will try tonight. I have hi hopes. Keep chugging.
Bill
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Walking After Midnight
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becat...thanks. great to have someone to spill to who knows what's going on. Your concern is very touching...thank you.
Bill...that Requip...man it's the Devil's drug or something. heh. I haven't slept a good night since I started on it. It wired me tighter than a drum.
I take back all that stuff I said about my Dr.
I didn't sleep a wink last night, I'm supposed to be at work at 6, at about 4:45, I just gave up trying to go to sleep and called off. At 8:00, I started calling the Dr's office. My legs, arms and torso were just aching and buzzing and jerking like mad.
Saw him at 2:30...he took a great deal of time with me and tried to get to the bottom of everything. Of course I had to call there 10 times before they found an opening but...whatever it takes. We had a great talk and hopefully got some things done.
He took me off the Carbatol already and gave me three things instead.
Klonapin
Neurontin
and best of all....20 Vicodin for when it get's BAD. Like it's been.
I got home and took a Neurontin and Vicodin just for relief from the last month of hell and man...I could drift off to sleep right now. But I'm gonna wait till bedtime.
Bill...that Requip...man it's the Devil's drug or something. heh. I haven't slept a good night since I started on it. It wired me tighter than a drum.
I take back all that stuff I said about my Dr.
I didn't sleep a wink last night, I'm supposed to be at work at 6, at about 4:45, I just gave up trying to go to sleep and called off. At 8:00, I started calling the Dr's office. My legs, arms and torso were just aching and buzzing and jerking like mad.
Saw him at 2:30...he took a great deal of time with me and tried to get to the bottom of everything. Of course I had to call there 10 times before they found an opening but...whatever it takes. We had a great talk and hopefully got some things done.
He took me off the Carbatol already and gave me three things instead.
Klonapin
Neurontin
and best of all....20 Vicodin for when it get's BAD. Like it's been.
I got home and took a Neurontin and Vicodin just for relief from the last month of hell and man...I could drift off to sleep right now. But I'm gonna wait till bedtime.
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ViewsAskew
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Tired and Randy,
I think almost 80% of the people that try the dopamine agonists find them effective. If Requip doesn't work, then try Mirapex. The side effect profiles are very different for them. Some people, like me, can't take either of them, but most people can take at least one of them.
The only reason I say that is because for most people they do work best. It's at least worth trying them both. Get samples if possible, as I have a drugstore in my cabinet of all the things I've tried and couldn't take.
Please be careful with Klonopin. It is only approved for one month use by the FDA. Physical dependence starts quickly and you can't stop it without tapering off it it. Some people get off it easily, others do not. Just know that. Some people take a drug holiday from it every month or so. Take Ambien or tramadol for a week instead and then go back to the Klonopin. It helps keep you from getting dependence, getting tolerance, or getting addicted.
There is a lot of good information about the drugs you can take and dosage information in the 'sticky' posts in the New to RLS? section of the board.
Ann
I think almost 80% of the people that try the dopamine agonists find them effective. If Requip doesn't work, then try Mirapex. The side effect profiles are very different for them. Some people, like me, can't take either of them, but most people can take at least one of them.
The only reason I say that is because for most people they do work best. It's at least worth trying them both. Get samples if possible, as I have a drugstore in my cabinet of all the things I've tried and couldn't take.
Please be careful with Klonopin. It is only approved for one month use by the FDA. Physical dependence starts quickly and you can't stop it without tapering off it it. Some people get off it easily, others do not. Just know that. Some people take a drug holiday from it every month or so. Take Ambien or tramadol for a week instead and then go back to the Klonopin. It helps keep you from getting dependence, getting tolerance, or getting addicted.
There is a lot of good information about the drugs you can take and dosage information in the 'sticky' posts in the New to RLS? section of the board.
Ann
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.
-
Guest
Hi Ann,
I have tried the Mirapex, and the Sinemet, and Ambien, and Restoril, and the currently not working at a theatre near you "Requip" etc. etc. etc. For some reason the DA's just don't seem to do it for me. I have received more blank stares from Doctors than Carter has liver pills. The only thing that did work for me was Tussionex, and even that I would have to re-dose after a while and the Doctor wouldn't re-fill it. I later found out from the RLS dr. MjB that the Tussionex as well as having Hydrocodone also had an antihistiamine which made the RLS worse. So the problem was not that I was "abusing" the stuff, it was making it worse.
I am not sure what the answer is yet. But I do know what has worked. I am more than willing to try anything my new Doctor wants to try, but when it's not working, it's not working. Thanks for the heads up on the Klonopin. I don't think I will suggest that one. You have given me more of an education on this site than I have received from any Doctor I have ever been to see. Thanks. You're the greatest.
Bill
I have tried the Mirapex, and the Sinemet, and Ambien, and Restoril, and the currently not working at a theatre near you "Requip" etc. etc. etc. For some reason the DA's just don't seem to do it for me. I have received more blank stares from Doctors than Carter has liver pills. The only thing that did work for me was Tussionex, and even that I would have to re-dose after a while and the Doctor wouldn't re-fill it. I later found out from the RLS dr. MjB that the Tussionex as well as having Hydrocodone also had an antihistiamine which made the RLS worse. So the problem was not that I was "abusing" the stuff, it was making it worse.
I am not sure what the answer is yet. But I do know what has worked. I am more than willing to try anything my new Doctor wants to try, but when it's not working, it's not working. Thanks for the heads up on the Klonopin. I don't think I will suggest that one. You have given me more of an education on this site than I have received from any Doctor I have ever been to see. Thanks. You're the greatest.
Bill
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ViewsAskew
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Hi Bill,
We have all been where you are. And we often end up back there again! I found that self-education was my only defense against doctors that wanted to mistreat me. it was my only offense to find the right treatment that would work. As you said, I'm willing to try things, but I won't put up with side effects that cause more problems than the RLS did! A certain level of side effects may have to be tolerated once drugs are needed, but they often make things much worse.
I empathize with your situation. I can't take any of the DAs either. And so far the anti-seizure's haven't done anything for me except make by brain fog even worse. The benzos also don't work for the RLS, although they do get me to sleep. The opiates are the ONLY thing that have worked consistently for the severe RLS. It was hard to find a doc that would prescribe them. The doctor you noted, MJB, often suggests methadone for tough cases, but getting someone to listen to me was so hard. There are studies to prove that methadone is not evil and that people with severe RLS do not get addicted to it. Obviously, if you're an addictive personality, that makes it more complicated, but I don't think it means someone should suffer.
I've been on it since April and have had only a couple of minor RLS problems when I forgot to take it on time. I still have an issue with the PLMD, but haven't yet found a solution.
Don't be so afraid of the Klonopin that you don't try it. Just respect it
. It does work for some people. If you try it and it works, just know that you might have to take a holiday from it every so often.
Ann
We have all been where you are. And we often end up back there again! I found that self-education was my only defense against doctors that wanted to mistreat me. it was my only offense to find the right treatment that would work. As you said, I'm willing to try things, but I won't put up with side effects that cause more problems than the RLS did! A certain level of side effects may have to be tolerated once drugs are needed, but they often make things much worse.
I empathize with your situation. I can't take any of the DAs either. And so far the anti-seizure's haven't done anything for me except make by brain fog even worse. The benzos also don't work for the RLS, although they do get me to sleep. The opiates are the ONLY thing that have worked consistently for the severe RLS. It was hard to find a doc that would prescribe them. The doctor you noted, MJB, often suggests methadone for tough cases, but getting someone to listen to me was so hard. There are studies to prove that methadone is not evil and that people with severe RLS do not get addicted to it. Obviously, if you're an addictive personality, that makes it more complicated, but I don't think it means someone should suffer.
I've been on it since April and have had only a couple of minor RLS problems when I forgot to take it on time. I still have an issue with the PLMD, but haven't yet found a solution.
Don't be so afraid of the Klonopin that you don't try it. Just respect it
. It does work for some people. If you try it and it works, just know that you might have to take a holiday from it every so often.
Ann
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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Walking After Midnight
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Bill....Right now he has me on 300 mg of Neurontin/twice daily...but working up to 4x daily and 0.5 MG of Klonopin - take 1 or 2 at bedtime.
Klonopin has always helped me.
Ann...Mirapex and Requip...ugh. Very bad experiences with both. They both wound me up, don't know how to explain it, but I was wound tight.
They kept me awake all night so I could enjoy the Restless Leg even more.
I hated them both...and sick the next day.
Klonopin has worked, as well as Vicodin, Darvocet...all those.
Mirapex, Requip and Carbatrol. I'm sick all day, wound up, jerking like crazy and worried about sleeping at night. Right now, my biggest worry is...what happened to my John Hiatt CD?
Klonopin has always helped me.
Ann...Mirapex and Requip...ugh. Very bad experiences with both. They both wound me up, don't know how to explain it, but I was wound tight.
They kept me awake all night so I could enjoy the Restless Leg even more.
I hated them both...and sick the next day.
Klonopin has worked, as well as Vicodin, Darvocet...all those.
Mirapex, Requip and Carbatrol. I'm sick all day, wound up, jerking like crazy and worried about sleeping at night. Right now, my biggest worry is...what happened to my John Hiatt CD?