, I am still have breakthrough symptoms a few nights a week. He also gave me some oxycontin 10mg to try and that seems to work better but my God, the hangover! For those of you on narcotics have you found that you have needed higher and higher doses? I am aware of the tolerance issues with this class of meds when used to treat pain but am not clear on whether tolerance is also common when being used for RLS. I hate this disease! I'm also not clear on why I have days where 5 mg is enough and I'm good throughout the next day and then there are days like today where I took 10 mg last night and am having horrible symptoms at work too. From reading others experiences, it sounds like I'm not alone. I wish I knew what set off my symptoms....Question for those w/ narcotic experience
Question for those w/ narcotic experience
Howdy all! A quick update on my RLS war. Since being put on oxycodone- my symptoms have been much better. (thank God for my family MD who really came through for me) However, I did make the stupid assumption that once I got put on oxy that I'd be much better for quite a while. I was put on 5 mg of oxy to be taken at 7pm at night and while it has worked MUCH better then any of those stupid dopamine agonists , I am still have breakthrough symptoms a few nights a week. He also gave me some oxycontin 10mg to try and that seems to work better but my God, the hangover! For those of you on narcotics have you found that you have needed higher and higher doses? I am aware of the tolerance issues with this class of meds when used to treat pain but am not clear on whether tolerance is also common when being used for RLS. I hate this disease! I'm also not clear on why I have days where 5 mg is enough and I'm good throughout the next day and then there are days like today where I took 10 mg last night and am having horrible symptoms at work too. From reading others experiences, it sounds like I'm not alone. I wish I knew what set off my symptoms....
, I am still have breakthrough symptoms a few nights a week. He also gave me some oxycontin 10mg to try and that seems to work better but my God, the hangover! For those of you on narcotics have you found that you have needed higher and higher doses? I am aware of the tolerance issues with this class of meds when used to treat pain but am not clear on whether tolerance is also common when being used for RLS. I hate this disease! I'm also not clear on why I have days where 5 mg is enough and I'm good throughout the next day and then there are days like today where I took 10 mg last night and am having horrible symptoms at work too. From reading others experiences, it sounds like I'm not alone. I wish I knew what set off my symptoms....-
Ridgerunner
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ViewsAskew
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Hi there,
I have increased my methadone dose 3 times I think, in about 13 months. Started at 10 mg. Within 2 months or so, I went to 12.5. In about 4 months or so, I went to 13.75. Then in another 5 months, I went to 15 mg. This is now an "average" dose for RLS. The high is something like 25 or so mg.
I just wrote one of the RLS "experts" about this. I am curious what he will say. When he responds, I'll let you all know what he says. He has told me in the past the there is little chance for dependence if used correctly. I found that interesting, as I assumed all of us would become dependent on them. He primarily used methadone, however, and usually it is taken only once a day. That may enter into the equation - the frequency of the dose. I would assume people taking hydrocodone, say, 3 times a day would have more risk of dependence, but I certainly don't know that. Just my random logic
.
I have increased my methadone dose 3 times I think, in about 13 months. Started at 10 mg. Within 2 months or so, I went to 12.5. In about 4 months or so, I went to 13.75. Then in another 5 months, I went to 15 mg. This is now an "average" dose for RLS. The high is something like 25 or so mg.
I just wrote one of the RLS "experts" about this. I am curious what he will say. When he responds, I'll let you all know what he says. He has told me in the past the there is little chance for dependence if used correctly. I found that interesting, as I assumed all of us would become dependent on them. He primarily used methadone, however, and usually it is taken only once a day. That may enter into the equation - the frequency of the dose. I would assume people taking hydrocodone, say, 3 times a day would have more risk of dependence, but I certainly don't know that. Just my random logic
.Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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ViewsAskew
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from RLSeattle
RLSSeattle meant to post this here - the software doesn't let me add a topic to another topic, so I just copied it here.
I still feel like a broker record on this, and am getting worse as more of us seem to be turning to narcotic for control of symptoms and pain.
I had long-term RLS with increasing pain and symptoms over a 30+ year period. None of the usual approaches work, ending with narcolepsy while driving in heavy high-speed downtown freeway traffic.
My doctors turned to low dose time-release morphine (generic name morphine sulphate 15 mg extended release. Brand name ms-contin.) They said it has low-abuse potential because it is released over an extended period, no high, and good, steady control over. I have been on it for about 5 years. Started with one 15 mg tab at bed, and after a couple of years went to one in the morning and one at bedtime, because of symptoms that did not return, but actually increased over the period. About 2 years ago I started a heavy exercisd program (walking 6-8 miles 5 days a week--to control another problem I had. You got to listen to audiobooks to make that tolerable.) The leg pain increased substantially, but probably because of the exercise, rather than an independent need to increase dosage, according to two doctors.
I have zero symptoms, except a need to "bounce" a leg sometimes when sitting in a chair--certainly tolerable and easily controllable. No sleep problems, little if any pain, and that mostly after walking. Only problem is you have to eat a lot of fiber and drink lots of water to avoid constipation. But my doctors say that goes away for most people. Still waiting.
If you are going the narcotic route already--a barrier many of us just don't want to cross, I suggest talking to your doctor about a time-release drug. I know oxycodone has a bad abuse profile because of the way it is manufactured, in some part. But I have had little dosage increase, complete relief, no tiredness, though I do fall asleep quickly at night and stay there, and about 5 years' experience. I hope and pray this continues for me.
Something to think about
rlsseattle
I still feel like a broker record on this, and am getting worse as more of us seem to be turning to narcotic for control of symptoms and pain.
I had long-term RLS with increasing pain and symptoms over a 30+ year period. None of the usual approaches work, ending with narcolepsy while driving in heavy high-speed downtown freeway traffic.
My doctors turned to low dose time-release morphine (generic name morphine sulphate 15 mg extended release. Brand name ms-contin.) They said it has low-abuse potential because it is released over an extended period, no high, and good, steady control over. I have been on it for about 5 years. Started with one 15 mg tab at bed, and after a couple of years went to one in the morning and one at bedtime, because of symptoms that did not return, but actually increased over the period. About 2 years ago I started a heavy exercisd program (walking 6-8 miles 5 days a week--to control another problem I had. You got to listen to audiobooks to make that tolerable.) The leg pain increased substantially, but probably because of the exercise, rather than an independent need to increase dosage, according to two doctors.
I have zero symptoms, except a need to "bounce" a leg sometimes when sitting in a chair--certainly tolerable and easily controllable. No sleep problems, little if any pain, and that mostly after walking. Only problem is you have to eat a lot of fiber and drink lots of water to avoid constipation. But my doctors say that goes away for most people. Still waiting.
If you are going the narcotic route already--a barrier many of us just don't want to cross, I suggest talking to your doctor about a time-release drug. I know oxycodone has a bad abuse profile because of the way it is manufactured, in some part. But I have had little dosage increase, complete relief, no tiredness, though I do fall asleep quickly at night and stay there, and about 5 years' experience. I hope and pray this continues for me.
Something to think about
rlsseattle
Hmmm...
RLSSeattle- I did try the long-acting version of oxycodone (oxycontin) but found that in me it lasts wayyy beyond the 12 hours they claim it gets released. I took it at 7pm and was not clear in the head until noon the next day (long after I drove to work-scary). And, my wife said I was gorked out of my mind and snoring very heavily. I've started keeping a journal to figure out why my RLS is God-awful on certain days. I noticed that I literally crawled out of my skin this weekend after I helped somebody move. The 2 hours of heavy lifting set my legs off so bad that I was taking my oxycodone at 2 in the afternoon! I figure if I need narcotics, I need them-- and I'm trying not to feel guilty about it. You'd think as a pharmacist I wouldn't feel weird about taking this stuff but there's a real stigma attached to it. Perhaps it's unfounded but my real fear is I will need more and more of this drug to have the same affect. (But, maybe it's ok to need more drug on one day and less on the next and I should just stop stressing about it.) 
ps.. thanks, ViewsAskew for asking some experts about narcotics- I appreciate any help that comes my way.
I figure if I need narcotics, I need them-- and I'm trying not to feel guilty about it. You'd think as a pharmacist I wouldn't feel weird about taking this stuff but there's a real stigma attached to it. Perhaps it's unfounded but my real fear is I will need more and more of this drug to have the same affect. (But, maybe it's ok to need more drug on one day and less on the next and I should just stop stressing about it.) ps.. thanks, ViewsAskew for asking some experts about narcotics- I appreciate any help that comes my way.-
ViewsAskew
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He replied and it was even better than I expected. He said that in his practice (he primarily uses methadone for people who can't tolerate the DAs and has many patients on it), he has had no problems with addiction OR tolerance! I was shocked. He said (and I quote, "All my patients on opioids (and I have tons) can stop them at will without any problems, other than the obvious concern about RLS symptoms not being treated (either take something else or they suffer)."
And then he said, "I do not see patients having to increase the dose very much once we have settled on the proper narcotic dose. . "
So, that eases my mind a LOT. I think that part of the reason there are less problems is that most of us do not need opioids 24/7. Because our doses are usually once a day, they have plenty of time to wear off in between, therefore reducing the dependence issue. I'm not sure I'm willing to test this theory and stop taking my methadone tonight, but it's nice to know.
And then he said, "I do not see patients having to increase the dose very much once we have settled on the proper narcotic dose. . "
So, that eases my mind a LOT. I think that part of the reason there are less problems is that most of us do not need opioids 24/7. Because our doses are usually once a day, they have plenty of time to wear off in between, therefore reducing the dependence issue. I'm not sure I'm willing to test this theory and stop taking my methadone tonight, but it's nice to know.
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.
great news!
VA- Awesome! That is wonderful news! I think I'll just keep taking mg 5-10 mg of oxy a night (depending on how bad my legs are) and quit worrying! 
My neurologist had me on Vicodin for 3 months (2 tabs before bed) when I started having breakthrough, it worked wonderfully, but I chose not to continue it. I slept so soundly, when it was combined with all my other medications, I was afraid I'd sleep through my husband needing me (he had a heart attack 3 yrs. ago) or a fire. But he says I didn't move a muscle all night! I guess not! None of the before bed twitchy creepy crawlies either.
Jenny
My former neuro prescribed Vicodin occasionally (actually, rarely) and wouldn't continue, even though I have pain from several different conditions. I slept really well while on it, also. I think he prescribed it for me two, maybe three times in a year (30 pills each time). His excuse for not prescribing it for me anymore was that he was afraid patients would sue him if they became addicted. His words. 
Jan
Jan
No one is alone who had friends.
I was started on Codeine in November 2004. The fact that I was facing the road of narcotics at that stage scared the living daylights out of me. My then hubby & I had a huge argument over the difference between addiction and dependence ... do you think I could convince him that it narcotics can be controlled??? Nope!
Out of everything that i've been on (currently in the middle of a full detox) the DA's, anti-d's, sedatives, you name it i've probably tried it ... I've found that Codeine worked the best. I would have noticable relief within an hour. The only problem was i'd often resemble a walking zombie, but leading up to a couple of months ago, I'd put that down to the entire cocktail of stuff I was on rather than blaming just one class of drug.
I was started on Panadeine Forte (1 tablet = 30mg codeine/500mg paracetamol) with one tablet at bedtime. My dosage eventually made its way to one tablet in the morning, 2 at dinner time and two at bedtime ... and in the end this was in addition to a DA, a sedative and an anti-d.
The next rung of the ladder would have been tramal/tramadol. I did ask my GP about it a couple of times when I was going backwards rather badly last year, but he always seemed to skirt the topic. I can understand in today's "sue-em-all" society the worries that doctors face in prescribing painkillers, even the basics, so I don't hold any grudges against my GP for being a little wary.
Ann, you asked in my thread when my next Dr's appt is ... it's on June 13th. When I first saw her and went through the plan, considering the dosages I was on she wanted to give me enough time to come off them in staggered doses ... not go cold turkey ... and also to have at least two weeks or more totally free of drugs and literally let my system get flushed out, if that makes sense. She wants me completely "clean". So, six weeks was when she said she'd next like to see me. I know, it's a long time, but you gotta do what you gotta do.
The new Dr mentioned both ropinerole and cabergoline as her first drugs of choice for when I restart. I'll have to put a few questions to her to find out her stance on the narcotics. Will let you know what her response is.
Out of everything that i've been on (currently in the middle of a full detox) the DA's, anti-d's, sedatives, you name it i've probably tried it ... I've found that Codeine worked the best. I would have noticable relief within an hour. The only problem was i'd often resemble a walking zombie, but leading up to a couple of months ago, I'd put that down to the entire cocktail of stuff I was on rather than blaming just one class of drug.
I was started on Panadeine Forte (1 tablet = 30mg codeine/500mg paracetamol) with one tablet at bedtime. My dosage eventually made its way to one tablet in the morning, 2 at dinner time and two at bedtime ... and in the end this was in addition to a DA, a sedative and an anti-d.
The next rung of the ladder would have been tramal/tramadol. I did ask my GP about it a couple of times when I was going backwards rather badly last year, but he always seemed to skirt the topic. I can understand in today's "sue-em-all" society the worries that doctors face in prescribing painkillers, even the basics, so I don't hold any grudges against my GP for being a little wary.
Ann, you asked in my thread when my next Dr's appt is ... it's on June 13th. When I first saw her and went through the plan, considering the dosages I was on she wanted to give me enough time to come off them in staggered doses ... not go cold turkey ... and also to have at least two weeks or more totally free of drugs and literally let my system get flushed out, if that makes sense. She wants me completely "clean". So, six weeks was when she said she'd next like to see me. I know, it's a long time, but you gotta do what you gotta do.
The new Dr mentioned both ropinerole and cabergoline as her first drugs of choice for when I restart. I'll have to put a few questions to her to find out her stance on the narcotics. Will let you know what her response is.
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!!!
Nadia- I'm sorry you have had so many drug issues! It sounds like you've tried a ton of stuff and haven't found the right drug/combo yet. I can't imagine how frustrating that would be. I went through that for only a few months and thought I was going to die. 
To second your doctor, however, when I've been consulted on patients with "polypharmacy" issues- i.e. tons of drugs and lots of confusion on what drug is causing what- I've often recommended a "washout" period. Then you can start over and try a different tactic and hopefully find a better therapy "cocktail". Having said that- I hope your MD is willing to at least give you a little bit of codeine to help with your symptoms in the meantime? I only say that because my recent switchover from narcs to DAs was the worst month of my life. I don't think I slept more then 1 hour a night! I know in the world of medicine it's important to try things one at a time and use logic when attempting to treat folks. BUT- If we were treating a patient with chronic pain (which I believe RLS should be considered)- our tactic would be to wean from one med to the other WITH humane but judicious use of meds for "breakthrough" pain. In a sense, there is an understanding in the medical community that pain should never go untreated, but rather should be addressed in a way that your patient is never in a position of extreme discomfort. My MDs told me that discomfort was part of my "trial and error" period and that I had to "suffer" through the transition.... but I'm not so sure they would say the same thing if they knew how uncomfortable/painful this condition can be. At any rate, consider me one guy in Minnesota who's pulling for you. I hope you get the right mix of meds to get your life back to normal!
To second your doctor, however, when I've been consulted on patients with "polypharmacy" issues- i.e. tons of drugs and lots of confusion on what drug is causing what- I've often recommended a "washout" period. Then you can start over and try a different tactic and hopefully find a better therapy "cocktail". Having said that- I hope your MD is willing to at least give you a little bit of codeine to help with your symptoms in the meantime? I only say that because my recent switchover from narcs to DAs was the worst month of my life. I don't think I slept more then 1 hour a night! I know in the world of medicine it's important to try things one at a time and use logic when attempting to treat folks. BUT- If we were treating a patient with chronic pain (which I believe RLS should be considered)- our tactic would be to wean from one med to the other WITH humane but judicious use of meds for "breakthrough" pain. In a sense, there is an understanding in the medical community that pain should never go untreated, but rather should be addressed in a way that your patient is never in a position of extreme discomfort. My MDs told me that discomfort was part of my "trial and error" period and that I had to "suffer" through the transition.... but I'm not so sure they would say the same thing if they knew how uncomfortable/painful this condition can be. At any rate, consider me one guy in Minnesota who's pulling for you. I hope you get the right mix of meds to get your life back to normal!