Hi Folks,
I've had RLS since 01. I've had many conversations w/ my doc about switching over to opiods but I have concerns/reservations that I'm hoping you all can weigh in on.
Just a brief history - taken sinemet, requip and mirapex is losing it's effectiveness; tried gabapentin, didn't work. Exercise 5 days/week, have a ferritin level of 54, drink 1 caffeinated beverage daily.
Here are my questions re: opiods: will they make me fatigued? will they make me less mentally sharp? what are the most annoying side effects? how do you deal w/ constipation? can you take it for a little while then go back to a dopaminergic drug? have you ever taken a pre-employment drug screen w/ a script and not been hired?
Thank you for your opinions!
Kristi
Reluctant to start narcotics
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emmettdigger
- Posts: 12
- Joined: Thu Dec 11, 2008 4:55 pm
- Location: Portland OR
Kristi-
I understand your concerns. I had to get off requip in September. I take neurontin at night and codeine in the daytime. I've been discussing switching to methadone with my doctor.
Sometimes the codeine makes me sleepy and loopy and sometimes it doesn't. At first it made me itch a lot. I do a lot of driving so it is a concern for me.
I had an experience last week when the meds hit me very hard and I had to speak to a room full of people and it was a challenge to stay focused.
I'm worried about developing tolerance for the meds. I'm worried that someone might perceive that I am misusing meds. The constipation is annoying. I use the benefiber, colace, senna, and the occasional enema to deal with it.
HOWEVER, my symptoms are so intense that I'll take the side effects as long as I can get some relief.
I understand your concerns. I had to get off requip in September. I take neurontin at night and codeine in the daytime. I've been discussing switching to methadone with my doctor.
Sometimes the codeine makes me sleepy and loopy and sometimes it doesn't. At first it made me itch a lot. I do a lot of driving so it is a concern for me.
I had an experience last week when the meds hit me very hard and I had to speak to a room full of people and it was a challenge to stay focused.
I'm worried about developing tolerance for the meds. I'm worried that someone might perceive that I am misusing meds. The constipation is annoying. I use the benefiber, colace, senna, and the occasional enema to deal with it.
HOWEVER, my symptoms are so intense that I'll take the side effects as long as I can get some relief.
Opiates can be a difficult subject for many people.. But first you should consider yourself lucky if you are in a position where you have a doctor who is willing to prescribe them to you. A lot of RLS patients are denied this option even when it is indicated, because of fear and paranoia on the part of the people who are supposed to be helping them. They truly do suffer for it.
Now onto some info about opiates.
Yes, when you first start an opiate, you will possibly experience some tiredness or feel loopy. However as time goes on those kinds of effects WILL fade. It largely depends on your body, metabolism, and the strength and dose of your medication. But eventually you will most certainly not be affected by those side effects as long as you are not constantly increasing your dose.
You should not feel fatigued or drained in any way. Quite the opposite opiates might actually help you get up and go at first. They will increase your general mood and relax you a little. Euphoria is a common side effect of opiates. However it is important NOT to get used to this feeling. Some people truly can't help it, and that is unfortunate. I am a recovering opiate addict myself, so I give you all this advice from both experience, and the heart. You shouldn't fear opiates because of people like me, I'm an abnormality in the system, some of us are just born this way and find out by accident.
Constipation can be controlled with dietary changes. You can add a regular portion into your diet, or do these about an hour before you take your meds. Tomatoes, tomatoe juice, Benefiber/metamucil/citrucel. Personally I recommend Citrucel orange flavor. It also comes sugar free if you feel so inclined. It is pretty easy to chug down compared to other stuff I've tried. Usually have a 8oz glass of water with the fiber stirred in immediately and then start drinking in big gulps, or chug it down if you want. It tastes very good. You can have a glass of fiber every 2 days or so, and it should help a lot. But overall you should experiment to find the best solution as to how much and how often.
During the honeymoon period while you are adjusting to opiates, you should not do the typical dangerous activities like driving or operating dangerous machines while under the full effect of your medication. However as time goes by and you become used to your prescribed dose you should have no trouble driving cars or anything like that.
There are NO problems with drug screenings and legally prescribed opiate medications. I was pretty freaked out at first too. I let the guy hiring me know up front that I took legally prescribed painkillers and what they were. The people who do your drug tests also ask you if you are on any prescription medications, I told them what I was taking and what my dose was. Usually it is NOT a problem because the amount you are taking falls below their testing threshold. However even if they try to peg you as some heavy opiate abuser for some stupid reason all you have to do is produce documentation from your physician and I would think they would shut up.
Overall don't be worried unless there are other substances you are worried about showing up.
As for going back on dopaminergics? Sure you could take some opiates for a while then try them again. But you will likely get the same results. Once your body becomes over sensitized to dopaminergics it usually stays that way even after a calming down period. There are chances you could restart it on a lower dose and not take it as high as your previous doses, to see if your body readjusts and can continue at those doses, but overall if multiple medications have bothered you, made your RLS worse, or stopped working, then chances are it's never going to change.
There are many kinds of opiates that are appropriate for different kinds of RLS. If you have 24/7 RLS (the most severe kind) you want to ask about being prescribed a long-acting medication. Something that will last at least 12 hours. Oxycontin (time-release oxycodone) is one of them. However I never recommend it because I think the stuff is far too addictive than people realize. If it works for you that is cool though. Do whatever works.
There is also time released morphine I think, and there is also methadone and suboxone. Ultram ER is another time released medication, however it comes with its own bag of risks. Especially if you are taking anti-depressants or other drugs that lower the seizure threshold.
Methadone is a scary subject for a lot of doctors. They always associate it with drug abuse and addicts, but the truth is it is a powerful painkiller that can provide a long period of relief. Several members here take methadone, including myself, and we all have varying dosages. For me usually 15mgs gets me through a whole 24 hours of relief.
If you have RLS only at night or a certain time of the day, then short acting opiates will be a good choice for you as well. Tylenol #3 w/codeine, Hydrocodone (Vicodin), the aforemention Oxycodone, are all short acting opiates that provide between 4 - 6 hours of relief under optimal conditions. Generally its best to start on the low end with the codeine or hydrocodone, as those usually control RLS just fine for a lot of people.
Hopefully I didn't miss anything, and you'll get some use out of this info.
Now onto some info about opiates.
Yes, when you first start an opiate, you will possibly experience some tiredness or feel loopy. However as time goes on those kinds of effects WILL fade. It largely depends on your body, metabolism, and the strength and dose of your medication. But eventually you will most certainly not be affected by those side effects as long as you are not constantly increasing your dose.
You should not feel fatigued or drained in any way. Quite the opposite opiates might actually help you get up and go at first. They will increase your general mood and relax you a little. Euphoria is a common side effect of opiates. However it is important NOT to get used to this feeling. Some people truly can't help it, and that is unfortunate. I am a recovering opiate addict myself, so I give you all this advice from both experience, and the heart. You shouldn't fear opiates because of people like me, I'm an abnormality in the system, some of us are just born this way and find out by accident.
Constipation can be controlled with dietary changes. You can add a regular portion into your diet, or do these about an hour before you take your meds. Tomatoes, tomatoe juice, Benefiber/metamucil/citrucel. Personally I recommend Citrucel orange flavor. It also comes sugar free if you feel so inclined. It is pretty easy to chug down compared to other stuff I've tried. Usually have a 8oz glass of water with the fiber stirred in immediately and then start drinking in big gulps, or chug it down if you want. It tastes very good. You can have a glass of fiber every 2 days or so, and it should help a lot. But overall you should experiment to find the best solution as to how much and how often.
During the honeymoon period while you are adjusting to opiates, you should not do the typical dangerous activities like driving or operating dangerous machines while under the full effect of your medication. However as time goes by and you become used to your prescribed dose you should have no trouble driving cars or anything like that.
There are NO problems with drug screenings and legally prescribed opiate medications. I was pretty freaked out at first too. I let the guy hiring me know up front that I took legally prescribed painkillers and what they were. The people who do your drug tests also ask you if you are on any prescription medications, I told them what I was taking and what my dose was. Usually it is NOT a problem because the amount you are taking falls below their testing threshold. However even if they try to peg you as some heavy opiate abuser for some stupid reason all you have to do is produce documentation from your physician and I would think they would shut up.
Overall don't be worried unless there are other substances you are worried about showing up.
As for going back on dopaminergics? Sure you could take some opiates for a while then try them again. But you will likely get the same results. Once your body becomes over sensitized to dopaminergics it usually stays that way even after a calming down period. There are chances you could restart it on a lower dose and not take it as high as your previous doses, to see if your body readjusts and can continue at those doses, but overall if multiple medications have bothered you, made your RLS worse, or stopped working, then chances are it's never going to change.
There are many kinds of opiates that are appropriate for different kinds of RLS. If you have 24/7 RLS (the most severe kind) you want to ask about being prescribed a long-acting medication. Something that will last at least 12 hours. Oxycontin (time-release oxycodone) is one of them. However I never recommend it because I think the stuff is far too addictive than people realize. If it works for you that is cool though. Do whatever works.
There is also time released morphine I think, and there is also methadone and suboxone. Ultram ER is another time released medication, however it comes with its own bag of risks. Especially if you are taking anti-depressants or other drugs that lower the seizure threshold.
Methadone is a scary subject for a lot of doctors. They always associate it with drug abuse and addicts, but the truth is it is a powerful painkiller that can provide a long period of relief. Several members here take methadone, including myself, and we all have varying dosages. For me usually 15mgs gets me through a whole 24 hours of relief.
If you have RLS only at night or a certain time of the day, then short acting opiates will be a good choice for you as well. Tylenol #3 w/codeine, Hydrocodone (Vicodin), the aforemention Oxycodone, are all short acting opiates that provide between 4 - 6 hours of relief under optimal conditions. Generally its best to start on the low end with the codeine or hydrocodone, as those usually control RLS just fine for a lot of people.
Hopefully I didn't miss anything, and you'll get some use out of this info.
e, hello and welcome to the board. Lots of different narcotics and they all effect us differently. I take neurontin as well as vicodin. Now, while I use vicodin regularly I often do not take it daily and usually not more then 2 500mg tabs. I experience virtually no side effects others than it seems to make sleep even more difficult then it already is... but sometime not always. I do not think it makes me less mentally sharp, fatigued, etc. But that may be just me. About 3 years ago I took 2 to 3 tabs daily for a shoulder problem. I did this for about 5 mos or so. My response was also the same. So, I guess you will have to weight the risks vs benefits of taking any of these meds. I'm sure that if you experience side effects which are unmanageable no one will make you continue with any med. So, perhaps a trial of something would be worthwhile. Can't speak to some of your other Q's but I know others will weigh in. Again, welcome and best wishes. M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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emmettdigger
- Posts: 12
- Joined: Thu Dec 11, 2008 4:55 pm
- Location: Portland OR
I AM very lucky that I have an excellent sleep doc. he actually suggested methadone pretty early on and I rebuffed him. Thanks for the information. One of my concerns in driving since I currently commute 40 miles/day but that will change soon ( at least I hope).
I look forward to hearing more from folks.
I look forward to hearing more from folks.
Well, I'm a pretty big advocate of methadone. It's done great things to put a little stability in my life and works wonderfully on my RLS.
I've been sleeping properly for a little over 6 months now, for the first time in my entire life. I go to bed at a decent time, and I wake myself. Even when I was taking other opiates during the first few years of my treatment, and before I developed severe problems, my sleep was never perfect and I'd often be up at night.
So I'd say give it some thought.. I know it has a strong stigma attached to it, but lots of people use it, RLS patients, cancer patients, chronic pain patients. So if you can get passed any preconceptions, you might find it a good medicine for you. I'd encourage the others here who are on methadone to share their experience with you as well. But just for the record, I'm the only recovering addict on the forums who takes methadone out of that necessity, the others were just fortunate enough to have the option.
As far as driving, you may need a few days to adjust.. But I routinely drive with methadone in my system, and I'm sure others do too. It's just like any medicine, once you become used to it and level off, you should be able to do everything you did before taking it.
I've been sleeping properly for a little over 6 months now, for the first time in my entire life. I go to bed at a decent time, and I wake myself. Even when I was taking other opiates during the first few years of my treatment, and before I developed severe problems, my sleep was never perfect and I'd often be up at night.
So I'd say give it some thought.. I know it has a strong stigma attached to it, but lots of people use it, RLS patients, cancer patients, chronic pain patients. So if you can get passed any preconceptions, you might find it a good medicine for you. I'd encourage the others here who are on methadone to share their experience with you as well. But just for the record, I'm the only recovering addict on the forums who takes methadone out of that necessity, the others were just fortunate enough to have the option.
As far as driving, you may need a few days to adjust.. But I routinely drive with methadone in my system, and I'm sure others do too. It's just like any medicine, once you become used to it and level off, you should be able to do everything you did before taking it.
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
RlS/pain meds
I have never tried any other meds besides the pain meds for my rls. I started out on hydrocodone 7.50/600 and used that for several yrs, never had any problems. but became concerned about the aceptmeniphen(sp) and liver damage, so I discussed switching to Ultram(Tramadol) which is a non narcotic pain med. it works very well for my rls IF I remember to take it before the rls kicks in, if not then I end up taking a hydrocodone. I have a prescription for both. 30 Hydrocodone per month and 90 Ultram(Tramadol) per month. So I end up rotating these two meds and have great success with no side affects. Being able to sleep each night has been a real life saver for me. I have more energy now due to getting enough sleep.
My RLS is almost always at night, I have very little day time RLS. But have continue to have nightly RLS for well over 30 yrs.
I have never experience any highs or lows while taking hydro or Ultram. actually no side affects at all, only having the control of my rls nightly which is heavens!
I am very lucky that my Dr, actually prefers me taking the opiates rather than the parkinson meds.
I am also very very careful with these meds, and take only the amount needed to control the rls, and usually when taking hydro I will start out with 1/2 tablet and if the rls does not stop in 30 mins or so,I then go ahead and take the other half. I am always so afraid that I will use to much and over time it will stop helping, so since I am not sure I could go back to living on 2-4 hrs of sleep as I did for so many many years, I am very very careful with my meds. Never ask for an increase in these meds. I actually cut down on the hydro amount when I started taking Ultram, so I think my Dr has learned he can trust me taking these meds. Which is a big plus when dealing with a Dr and pain med prescriptions.
I never end up taking all the meds during a month, so I have a stash built up in case the Dr says no more opiates! *L*
My RLS is almost always at night, I have very little day time RLS. But have continue to have nightly RLS for well over 30 yrs.
I have never experience any highs or lows while taking hydro or Ultram. actually no side affects at all, only having the control of my rls nightly which is heavens!
I am very lucky that my Dr, actually prefers me taking the opiates rather than the parkinson meds.
I am also very very careful with these meds, and take only the amount needed to control the rls, and usually when taking hydro I will start out with 1/2 tablet and if the rls does not stop in 30 mins or so,I then go ahead and take the other half. I am always so afraid that I will use to much and over time it will stop helping, so since I am not sure I could go back to living on 2-4 hrs of sleep as I did for so many many years, I am very very careful with my meds. Never ask for an increase in these meds. I actually cut down on the hydro amount when I started taking Ultram, so I think my Dr has learned he can trust me taking these meds. Which is a big plus when dealing with a Dr and pain med prescriptions.
I never end up taking all the meds during a month, so I have a stash built up in case the Dr says no more opiates! *L*
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ViewsAskew
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It's a hard decision in many ways: should I, which one, what will happen, etc.
I didn't want to start them. If I'd had a choice, I'd never have taken anything at all. But, after 15 years of interrupted sleep from the PLMs, I was losing my business because I couldn't work. Since I'm self-employed, that was a bad thing.
But, I augmented wickedly on the dopamine agonists. By the time I found a doc to work with me, I had 24/7 RLS along with brutal PLMs at night. I had to have a solution.
None of the other meds worked for me - I tried three different benzos and two different anti-seizure meds. The only thing left was opioids. Since low potency ones didn't work and I was allergic to the most likely moderate one, and the RLS was so bad, it left me to a high potency. My doctor worked with Dr Buchfurer through email and phone and they decided methadone was the best route. Actually, there weren't many choices at that point.
I have a life. It's not the one I had before all of this...I doubt I'll get that back. But, it's 85% of what it was and that's much better than the 30% I was at with the augmentation and 24/7 RLS. I work, I sleep. I have the RLS under control most of the time. And, I have few side effects.
But, they are there. Constipation can be truly brutal. You MUST deal with it. My doctor has me take 3 Colace a day as a softener and I try to eat as much fiber as I can and drink lots of water. I also have had some tolerance over time. It will be 4 years in May (I think) that I started the Methadone. I started at 10, but soon went to 15. Dr B said it was likely that this was because I needed 15 to start. But, eventually in had to go to 20 mg. I've been there for about a year and I can tell that the RLS is getting worse. It's likely that I need to increase.
The literature suggests that tolerance is rare when taking opioids for RLS. But, that may be because not many studies have been done! Or it simply may be rare and I just have difficulties with it, just like I augmented severely, which is rare.
The stigma, which has been mentioned, is also something to consider. I'm pretty lucky - my family and friends pretty much get it. But, I have had odd looks from pharmacists and one pharmacist who refused to fill an order (the way it was written) when my doc had been writing them like that for months and 3 other pharmacists had. It's a pain to have to get a new script every month...
To me, the balance is in the favor of the opioids. I have my life back, and I'd lost it. I didn't see I had many options. But, that's me. Only you can say what's right for you.
I didn't want to start them. If I'd had a choice, I'd never have taken anything at all. But, after 15 years of interrupted sleep from the PLMs, I was losing my business because I couldn't work. Since I'm self-employed, that was a bad thing.
But, I augmented wickedly on the dopamine agonists. By the time I found a doc to work with me, I had 24/7 RLS along with brutal PLMs at night. I had to have a solution.
None of the other meds worked for me - I tried three different benzos and two different anti-seizure meds. The only thing left was opioids. Since low potency ones didn't work and I was allergic to the most likely moderate one, and the RLS was so bad, it left me to a high potency. My doctor worked with Dr Buchfurer through email and phone and they decided methadone was the best route. Actually, there weren't many choices at that point.
I have a life. It's not the one I had before all of this...I doubt I'll get that back. But, it's 85% of what it was and that's much better than the 30% I was at with the augmentation and 24/7 RLS. I work, I sleep. I have the RLS under control most of the time. And, I have few side effects.
But, they are there. Constipation can be truly brutal. You MUST deal with it. My doctor has me take 3 Colace a day as a softener and I try to eat as much fiber as I can and drink lots of water. I also have had some tolerance over time. It will be 4 years in May (I think) that I started the Methadone. I started at 10, but soon went to 15. Dr B said it was likely that this was because I needed 15 to start. But, eventually in had to go to 20 mg. I've been there for about a year and I can tell that the RLS is getting worse. It's likely that I need to increase.
The literature suggests that tolerance is rare when taking opioids for RLS. But, that may be because not many studies have been done! Or it simply may be rare and I just have difficulties with it, just like I augmented severely, which is rare.
The stigma, which has been mentioned, is also something to consider. I'm pretty lucky - my family and friends pretty much get it. But, I have had odd looks from pharmacists and one pharmacist who refused to fill an order (the way it was written) when my doc had been writing them like that for months and 3 other pharmacists had. It's a pain to have to get a new script every month...
To me, the balance is in the favor of the opioids. I have my life back, and I'd lost it. I didn't see I had many options. But, that's me. Only you can say what's right for 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.
I became addicted to hydrocodine myself but I also was taking more than I should have because my drs did not do a very good job in helping me with mine. I was just trying to keep my rls undercontrol all of the time with hydrocodine and 4 tabs a day did not work for me.
Since getting help for the addiction I have been taking Subutex which is another form of Suboxone (medication for addicts). I have found through this process that I have no issues now with my rls. This medication is somewhat like Methadone.
If I could go back and do it all over again I would have pushed my dr. to put me on the methadone for mine. Had I done that I would not of developed a problem. However, I did not have good drs following me either and it sounds like you do so I would certainly explore the option of something like Methadone or the Suboxone.
Hope some of this helps! Good luck
Since getting help for the addiction I have been taking Subutex which is another form of Suboxone (medication for addicts). I have found through this process that I have no issues now with my rls. This medication is somewhat like Methadone.
If I could go back and do it all over again I would have pushed my dr. to put me on the methadone for mine. Had I done that I would not of developed a problem. However, I did not have good drs following me either and it sounds like you do so I would certainly explore the option of something like Methadone or the Suboxone.
Hope some of this helps! Good luck
Methadone For RLS
Hello I am a new member here, actually looking for advice on taking Methadone for my sever RLS. I am about to start it under my doctors supervision, as I have augmented on all the Dopamine drugs for RLS. I have not slept for many days now so pardon any errors in this email.
In looking for help on this site might be able to help someone else.
I found a Methadone site for people that have been taking Methadone and the consequences of doing so.
I asked the Question about taking Methadone for RLS and below is the reply.
Hope this helps.
I have dealt with RLS for years long before anyone would call it anything but in my mind. I have never taken any medication for it.
I was given methadone for pain for several years and this did smother the RLS to a point that I could fall asleep. I have to warn you that if you get on the METHADONE rls will be the smallest of your issues and pain. If you read the methadone withdrawal post you will see that this medication has a side affect that is RLS so this said if you dont like the RLS you have now why would you want to make it 1000 times worse in the end? As far as is this medication addictive, Yes it is the worst of the worst. Imagine herion but 3 x as bad to stop. The half life of methadone is 3x as long. I suggest you really do your homework before you take this medication and dont just do what your Dr says you need to really research and then get a second opinion. After living with what I have been dealing with I would never take this methadone again no matter what issues I am dealing with. You are doing the best thing you can at this time ask questions and gain as much knowledge as you can. You will see this is not a good medication to take.
Good luck.
In looking for help on this site might be able to help someone else.
I found a Methadone site for people that have been taking Methadone and the consequences of doing so.
I asked the Question about taking Methadone for RLS and below is the reply.
Hope this helps.
I have dealt with RLS for years long before anyone would call it anything but in my mind. I have never taken any medication for it.
I was given methadone for pain for several years and this did smother the RLS to a point that I could fall asleep. I have to warn you that if you get on the METHADONE rls will be the smallest of your issues and pain. If you read the methadone withdrawal post you will see that this medication has a side affect that is RLS so this said if you dont like the RLS you have now why would you want to make it 1000 times worse in the end? As far as is this medication addictive, Yes it is the worst of the worst. Imagine herion but 3 x as bad to stop. The half life of methadone is 3x as long. I suggest you really do your homework before you take this medication and dont just do what your Dr says you need to really research and then get a second opinion. After living with what I have been dealing with I would never take this methadone again no matter what issues I am dealing with. You are doing the best thing you can at this time ask questions and gain as much knowledge as you can. You will see this is not a good medication to take.
Good luck.
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ViewsAskew
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Bluefin, thanks for the post. Welcome.
I have to say, however, that many of us have had completely different experiences. Some of us have had problems with it and with stopping it...but many have not.
One of the "expert" docs in the field swears to me that his patients have not had difficulty stopping it at the doses he's prescribing and when taken only once a day (taking it multiple times a day increases the chances of dependence, making it harder to stop).
This is such a complicated decision..and there is not one right answer. Methadone is successful and "right" for many. It's also not "right" for others.
I hope you get to the information you need to help you make a balanced decision.
I have to say, however, that many of us have had completely different experiences. Some of us have had problems with it and with stopping it...but many have not.
One of the "expert" docs in the field swears to me that his patients have not had difficulty stopping it at the doses he's prescribing and when taken only once a day (taking it multiple times a day increases the chances of dependence, making it harder to stop).
This is such a complicated decision..and there is not one right answer. Methadone is successful and "right" for many. It's also not "right" for others.
I hope you get to the information you need to help you make a balanced decision.
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.
I have a feeling I know what you site you heard this from... It's usually filled with people screaming about how horrible Methadone is, and how it killed their friend/mother/father/brother/son etc..
These people are so skewed in their opinions they are usually incapable of rational analysis of cost vs benefit, etc. I've been there several times and couldn't stomach the idiocy, and I was only reading the stuff, not participating..
Now, that being said.. Here is the skivvy on Methadone.. I am a recovering opiate addict, and also have severe RLS, I've had extensive experience with many opiates, as well as over the counter and other types of meds. So just wanted to establish I'm not talking out of my **** or anything.
Methadone is an extremely powerful opiate. It is one of the best painkillers on the planet, but it can still vary from person to person. For instance, it's not very good for a toothache or headache. But for chronic aching pain from injuries, and for opiate addiction management, it is a good medicine.
Methadone works by knocking other drugs off your bodies opiod receptors. This includes other painkillers like Codeine, Hydrocodone, Oxycodone, and probably morphine too. The reason it does this is it has a higher "affinity" for those recptors and binds to them easier, when methadone and an opposing opiate meet at a receptor they compete and if the dose is usually correct (e.g strong enough) the methadone wins the fight and binds.
This is why it is successful in addiction management for drugs like painkillers, and heroin, etc. By kicking those drugs off and taking their place you are under the influence of Methadone's effects, and NOT the offending drug of choice. Methadone does have some anti-anxiety and can cause a bit of relaxation or euphoria. However like with any drug, once you are at a stable dose, this WILL dissapear. I've been on Methadone for about a full year now, and I can tell the difference from now and when I started.
Methadone has a long half-life, and its metabolites can remain in your body for up to 72 hours. However as far as RLS patients go, we usually see between 12 to roughly 24 hours of relief from RLS if we take a sufficient dose of medication. I take 15mgs in the morning hours, and ocassionally I have a reserve number of pills written into my prescription so that I can take an addition 20 to 40 doses, depending on how much I take. (either 1 half or 1 whole pill in the evening if I need it).
Compared to other opiates, Methadone has been a god send for me. I had a nasty habbit as a result of my legitimate treatment for RLS. It was just something that happened to me, so I've dealt with it the best I can. I started pushing really hard to get on methadone because I had run out of real options. I could not be trusted with other painkillers, and if I had no medication I would eventually have become suicidal from the suffering. So Methadone was my personal solution. And aside from some management issues that my father now helps me with, I am doing great. I have been sleeping properly for the past 6 - 7 months now, for the first time in the 26 years I've walked the planet. I'm also in counseling and that's helped a little.
However. Methadone can be extremely BRUTAL to quit. Some heroin addicts pretty quitting Heroin to quitting methadone, and I don't blame them.. I have been through withdrawal from opiates before, but Methadone was by far the worst (for me). The pain was so bad one time that I actually modified an advance prescription so I could get it filled that day. Oddly enough they filled it, but my doc ended up with a photo copy, and being the kind man he is, simply told me "don't do that!", in a lighthearted tone, to his credit. This was the point when I got my dad involved in my treatment and re-entered counseling. But it's been great ever since.
As far as Methadone addiction goes.. Sure, like any opiate it can be potentially addictive, but I don't think its anywhere near as bad as they people make it out to be.. the person you quoted called it 3x worse than heroin? If that were true, we'd be hearing about all the kids that take a pill or two at a party, becoming these heinous addicts, and a new epidemic, etc..
The truth they likely have addiction confused with dependance. Dependance is a legitimate medical condition/side effect of opiate treatments. It simply means your body becomes used to the drug being there in your system, and that when you take it away suddenly (and even sometimes slowly) it starts throwing a hissy fit because it thinks something is out of whack and physiologically needs the medication.
Addiction is a purely psychological component, whereas dependance is a natural physiological response to many medications, both opiates and non opiates. Benzodiazepenes for instance (Valium, Xanax, etc)
Unlike other people on the net. We're not here to SCARE you away from Methadone. As RLS patients we all understand the intense personal suffering the search for a proper medication can cause. Sometimes there are only one or two medicines period that will work for you, and you might only have access to one, and might rather not take it for whatever reason. It's a tough choice to make. However we as a community aren't running out to tell people to get X Y Z drug either.
I believe in informed decisions. So basically I'm just giving you all the information I feel you should know, and using my experiences as a template. I am extremely Pro Methadone, obviously because it has helped me a lot. However I think my information is a lot less biased than some of the knee-jerk posters you are going to encounter on some of these other sites, where they continually preach to the choir.
If you have doubt about Methadone, or it doesn't work out very well for you. You can also look into Suboxone. It is a new alternative medicine used to treat Heroin withdrawal in the same way as Methadone. We recently had someone join the forums who is on Suboxone and they say they are doing GREAT now. However you have to make sure you get the kind called "Subutex", as regular "Suboxone" contains an opiate antagonist. I don't know if Suboxone is safe for RLS patients because of that drug, and I was offered it once but declined and stated I had reservations about anything with an opiod agonist in it. The risk here is that you will be sent into rapid withdrawal (they use it on overdose patients to try and restore breathing function) and will also more than likely severely aggravate your RLS as a result.
So remember.. Get a formula WITHOUT Naloxone in it. Also, this stuff is extremely expensive if your insurance doesn't cover it, or you are uninsured. I heard it costs $300 - $400, and I think that's per monthly supply.
Hope this info helps you. If you decide not to take methadone, look into Tramadol (Ultram) it comes in instant release and time released forms, the time released is more expensive though. It comes with a seizure risk (I had one) especially if taking SSRI's or other anti-depressants or any other drug that can lower the seizure threshold. But its decent stuff, is technically an opiate, but is NOT a controlled substance except for in 1 State.
These people are so skewed in their opinions they are usually incapable of rational analysis of cost vs benefit, etc. I've been there several times and couldn't stomach the idiocy, and I was only reading the stuff, not participating..
Now, that being said.. Here is the skivvy on Methadone.. I am a recovering opiate addict, and also have severe RLS, I've had extensive experience with many opiates, as well as over the counter and other types of meds. So just wanted to establish I'm not talking out of my **** or anything.
Methadone is an extremely powerful opiate. It is one of the best painkillers on the planet, but it can still vary from person to person. For instance, it's not very good for a toothache or headache. But for chronic aching pain from injuries, and for opiate addiction management, it is a good medicine.
Methadone works by knocking other drugs off your bodies opiod receptors. This includes other painkillers like Codeine, Hydrocodone, Oxycodone, and probably morphine too. The reason it does this is it has a higher "affinity" for those recptors and binds to them easier, when methadone and an opposing opiate meet at a receptor they compete and if the dose is usually correct (e.g strong enough) the methadone wins the fight and binds.
This is why it is successful in addiction management for drugs like painkillers, and heroin, etc. By kicking those drugs off and taking their place you are under the influence of Methadone's effects, and NOT the offending drug of choice. Methadone does have some anti-anxiety and can cause a bit of relaxation or euphoria. However like with any drug, once you are at a stable dose, this WILL dissapear. I've been on Methadone for about a full year now, and I can tell the difference from now and when I started.
Methadone has a long half-life, and its metabolites can remain in your body for up to 72 hours. However as far as RLS patients go, we usually see between 12 to roughly 24 hours of relief from RLS if we take a sufficient dose of medication. I take 15mgs in the morning hours, and ocassionally I have a reserve number of pills written into my prescription so that I can take an addition 20 to 40 doses, depending on how much I take. (either 1 half or 1 whole pill in the evening if I need it).
Compared to other opiates, Methadone has been a god send for me. I had a nasty habbit as a result of my legitimate treatment for RLS. It was just something that happened to me, so I've dealt with it the best I can. I started pushing really hard to get on methadone because I had run out of real options. I could not be trusted with other painkillers, and if I had no medication I would eventually have become suicidal from the suffering. So Methadone was my personal solution. And aside from some management issues that my father now helps me with, I am doing great. I have been sleeping properly for the past 6 - 7 months now, for the first time in the 26 years I've walked the planet. I'm also in counseling and that's helped a little.
However. Methadone can be extremely BRUTAL to quit. Some heroin addicts pretty quitting Heroin to quitting methadone, and I don't blame them.. I have been through withdrawal from opiates before, but Methadone was by far the worst (for me). The pain was so bad one time that I actually modified an advance prescription so I could get it filled that day. Oddly enough they filled it, but my doc ended up with a photo copy, and being the kind man he is, simply told me "don't do that!", in a lighthearted tone, to his credit. This was the point when I got my dad involved in my treatment and re-entered counseling. But it's been great ever since.
As far as Methadone addiction goes.. Sure, like any opiate it can be potentially addictive, but I don't think its anywhere near as bad as they people make it out to be.. the person you quoted called it 3x worse than heroin? If that were true, we'd be hearing about all the kids that take a pill or two at a party, becoming these heinous addicts, and a new epidemic, etc..
The truth they likely have addiction confused with dependance. Dependance is a legitimate medical condition/side effect of opiate treatments. It simply means your body becomes used to the drug being there in your system, and that when you take it away suddenly (and even sometimes slowly) it starts throwing a hissy fit because it thinks something is out of whack and physiologically needs the medication.
Addiction is a purely psychological component, whereas dependance is a natural physiological response to many medications, both opiates and non opiates. Benzodiazepenes for instance (Valium, Xanax, etc)
Unlike other people on the net. We're not here to SCARE you away from Methadone. As RLS patients we all understand the intense personal suffering the search for a proper medication can cause. Sometimes there are only one or two medicines period that will work for you, and you might only have access to one, and might rather not take it for whatever reason. It's a tough choice to make. However we as a community aren't running out to tell people to get X Y Z drug either.
I believe in informed decisions. So basically I'm just giving you all the information I feel you should know, and using my experiences as a template. I am extremely Pro Methadone, obviously because it has helped me a lot. However I think my information is a lot less biased than some of the knee-jerk posters you are going to encounter on some of these other sites, where they continually preach to the choir.
If you have doubt about Methadone, or it doesn't work out very well for you. You can also look into Suboxone. It is a new alternative medicine used to treat Heroin withdrawal in the same way as Methadone. We recently had someone join the forums who is on Suboxone and they say they are doing GREAT now. However you have to make sure you get the kind called "Subutex", as regular "Suboxone" contains an opiate antagonist. I don't know if Suboxone is safe for RLS patients because of that drug, and I was offered it once but declined and stated I had reservations about anything with an opiod agonist in it. The risk here is that you will be sent into rapid withdrawal (they use it on overdose patients to try and restore breathing function) and will also more than likely severely aggravate your RLS as a result.
So remember.. Get a formula WITHOUT Naloxone in it. Also, this stuff is extremely expensive if your insurance doesn't cover it, or you are uninsured. I heard it costs $300 - $400, and I think that's per monthly supply.
Hope this info helps you. If you decide not to take methadone, look into Tramadol (Ultram) it comes in instant release and time released forms, the time released is more expensive though. It comes with a seizure risk (I had one) especially if taking SSRI's or other anti-depressants or any other drug that can lower the seizure threshold. But its decent stuff, is technically an opiate, but is NOT a controlled substance except for in 1 State.
Oh some advice on starting. New Methadone patients, especially those who are opiate naive, need to be careful. When you first start Methadone this is the single most dangerous time.
Accidental deaths due to poor doctor instruction are rare, but they do happen. I always reccomend to new methadone patients, that they split a 5mg pill (usually what you get) in half and wait an hour or two to see how it effects you. It might even be enough at first, and then you can increase your dose as necesarry.
Once you are stable on at least 5mgs, dose increases of 5mg at a time, maybe even 10mg, should be no serious issue. RLS patients usually take low doses of opiates compared to others anyway. You might end up somewhere between 5 - 30mg. Some of us are at 15 - 20mg currently, while some take less with additional other meds.
Also one more comment about addiction/dependance. Primary RLS is going to be with you for life... There's no escaping it. There may be periods where it fades a little or comes back strong, but it will be there, and will likely worsen as you age (unfortunately). The way I look at Methadone is as a medication I will be taking for the rest of my life. Unless I am forced to find an alternative because of supply problems. Just like someone takes their heart meds, or insulin, etc. So I try not to worry -too much- about withdrawal and addiction. As long as I stay at a steady dose, and only request and receive increases that I genguinely need, I am not doing anything wrong and don't feel guilty about taking it.
I think everyone should feel that way. There'd be a lot less grief.
Accidental deaths due to poor doctor instruction are rare, but they do happen. I always reccomend to new methadone patients, that they split a 5mg pill (usually what you get) in half and wait an hour or two to see how it effects you. It might even be enough at first, and then you can increase your dose as necesarry.
Once you are stable on at least 5mgs, dose increases of 5mg at a time, maybe even 10mg, should be no serious issue. RLS patients usually take low doses of opiates compared to others anyway. You might end up somewhere between 5 - 30mg. Some of us are at 15 - 20mg currently, while some take less with additional other meds.
Also one more comment about addiction/dependance. Primary RLS is going to be with you for life... There's no escaping it. There may be periods where it fades a little or comes back strong, but it will be there, and will likely worsen as you age (unfortunately). The way I look at Methadone is as a medication I will be taking for the rest of my life. Unless I am forced to find an alternative because of supply problems. Just like someone takes their heart meds, or insulin, etc. So I try not to worry -too much- about withdrawal and addiction. As long as I stay at a steady dose, and only request and receive increases that I genguinely need, I am not doing anything wrong and don't feel guilty about taking it.
I think everyone should feel that way. There'd be a lot less grief.
Great Information
Thanks for answering my question so completely. I have not been able to drink any alcholic beverages with the meds I take now. And I must admit I miss the odd glass of wine at dinner. Is alcohol off limits with methadone as it is with mirapex and gabapentin.
YES. I don't know about once you have an established dose and are well adjusted. But DO NOT drink alcohol while you are in the starting phase of your treatment.
Alcohol and all painkillers do not mix well, and can lead to a potential overdose. Alcohol is a depressant, like opiates, so when the two combine they can intensify each others effects. You might outright stop breathing if you drink enough (respiratory arrest is both unpleasant to watch happen and to die from with some opiates) , or you might go to bed and never wake up.
Whenever you drink alcohol, it usually exclusively ties up your liver, and that's why practically all medications OTC or Rx come with an alcohol warning. If your liver is too busy eliminating the alcohol from your system (because your body considers it a poison) opiates and other drugs can build up in your blood stream to dangerous amounts that cause complications, and can be potentially fatal as a result.
You should ask your doctor to double check. But after you have been on methadone for a week or two, have a stable dose and notice the effects have somewhat faded, it might be safe to have a small amount of alcohol. I'm talking maybe a healthy glass of wine with dinner or hell maybe a can of beer.
But as far drinking to the point where you are really buzz or drunk. I don't think that is safe, even once you are used to your meds. Again, ask your doctor if any amount would be considered safe, and what kinds might be more risky than others.. Something low proof, that you might have 8oz of to just unwind at the end of the day, might be ok for you. But hard liquor and high proof contents are likely going to be a problem if not at first, then flat out, period.
Alcohol and all painkillers do not mix well, and can lead to a potential overdose. Alcohol is a depressant, like opiates, so when the two combine they can intensify each others effects. You might outright stop breathing if you drink enough (respiratory arrest is both unpleasant to watch happen and to die from with some opiates) , or you might go to bed and never wake up.
Whenever you drink alcohol, it usually exclusively ties up your liver, and that's why practically all medications OTC or Rx come with an alcohol warning. If your liver is too busy eliminating the alcohol from your system (because your body considers it a poison) opiates and other drugs can build up in your blood stream to dangerous amounts that cause complications, and can be potentially fatal as a result.
You should ask your doctor to double check. But after you have been on methadone for a week or two, have a stable dose and notice the effects have somewhat faded, it might be safe to have a small amount of alcohol. I'm talking maybe a healthy glass of wine with dinner or hell maybe a can of beer.
But as far drinking to the point where you are really buzz or drunk. I don't think that is safe, even once you are used to your meds. Again, ask your doctor if any amount would be considered safe, and what kinds might be more risky than others.. Something low proof, that you might have 8oz of to just unwind at the end of the day, might be ok for you. But hard liquor and high proof contents are likely going to be a problem if not at first, then flat out, period.