Kathy, it sounds like you have had a tough time and are in a tough place. I hope you can get to Ondo and he can help get it straightened out at least for now. Finding a new doc may not be easy, as you have already found out. Docs are very afraid of this class of drugs. One of the reasons the docs may look at you like you are using MEthadone for herion withdrawal is that your dose is a very high dose for RLS.
Just to clarify, everything I have read says that when used for RLS, we do not get immune (or tolerant) of it. In one study, only one person of 136 (they were followed over a seven year period) got tolerant to it. What causes dose increases is when a person isn't on a high enough dose to begin with. Also, Methadone used for pain is what is more likely to result in tolerance. The average dose in this study was only 15 mg! The highest dose was 30 mg. According to one RLS specialist, at these low doses, a person can quit Methadone immediately with no adverse effects - not something that can be done at higher doses.
Experiences with Methadone
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ViewsAskew
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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.
Ann,
Last month in Lubbock one of the Dr.s offices told me I should call around to see if a Dr. would even write a script for methadone, which I did without giving the dose and they all kept telling me no. I did go in to a couple of offices and (well I told you the reactions)
I do agree about the dose, and honestly when I went up so high I was taking other meds like soma which took me forever to figure out it was setting my legs off full force. The doctor in NM at that time admitted she didnt know about RLS but truely cared and we tried everything in the mean time my dose got higher to the point that I was immune and when I got RLS completly under control I stopped all meds but methadone and Klonopin but I always try to take as little as possible and like now I am taking 3 to 4 a day tring to make it to the Dr. and my legs are fine but when I wake up they immediatly start up. I try to avoid letting it get to far, mine are very painful and yet before the methadone I would beat them black and blue and as soon as I would stop it would come at me 100x my husband would hold me down. I really think that if I hadnt been on all the wrong meds I could have maintained at a much lower dose. Now I understand my body being addicted even though my mine doesnt feel anything. It is like asprin. I hope I don't have to ever go up again. I have been at this dose for 3yrs. Do you know about the effect that I think it is having on my body as far as aging? I do know that I tried other meds like oxycotin and nothing else worked. So we decided to stay with the meds that I am on now and until i moved I was very unaware of all the "heroine" stuff. Any info you have would be great. What other meds if any would compare. Maybe give the methadone a break. The last time I went to NM the Dr. said they had about 10 different meds to try. Im going hopefully tomorrow and I will discuss them but I have tried so many I don't really want to relapse.
Last month in Lubbock one of the Dr.s offices told me I should call around to see if a Dr. would even write a script for methadone, which I did without giving the dose and they all kept telling me no. I did go in to a couple of offices and (well I told you the reactions)
I do agree about the dose, and honestly when I went up so high I was taking other meds like soma which took me forever to figure out it was setting my legs off full force. The doctor in NM at that time admitted she didnt know about RLS but truely cared and we tried everything in the mean time my dose got higher to the point that I was immune and when I got RLS completly under control I stopped all meds but methadone and Klonopin but I always try to take as little as possible and like now I am taking 3 to 4 a day tring to make it to the Dr. and my legs are fine but when I wake up they immediatly start up. I try to avoid letting it get to far, mine are very painful and yet before the methadone I would beat them black and blue and as soon as I would stop it would come at me 100x my husband would hold me down. I really think that if I hadnt been on all the wrong meds I could have maintained at a much lower dose. Now I understand my body being addicted even though my mine doesnt feel anything. It is like asprin. I hope I don't have to ever go up again. I have been at this dose for 3yrs. Do you know about the effect that I think it is having on my body as far as aging? I do know that I tried other meds like oxycotin and nothing else worked. So we decided to stay with the meds that I am on now and until i moved I was very unaware of all the "heroine" stuff. Any info you have would be great. What other meds if any would compare. Maybe give the methadone a break. The last time I went to NM the Dr. said they had about 10 different meds to try. Im going hopefully tomorrow and I will discuss them but I have tried so many I don't really want to relapse.
HANG IN THERE, KATHY
Kathy -- your situation is absolutely ridiculous -- but you know that. I live in Denver -- not exactly a bastion of cutting edge medicine -- and I've been dealing with doctors for at least 10 years who were willing to work with me on RLS. I do remember going to the first one and plunking down a big stack of research I"d gotten off the RLS foundation page,and then the Mayo clinic, etc. He was impressed; said I was the best informed patient he'd met. Most recently, I've been in the Kaiser system and the doc brought Methadone up to ME -- and just the name scared me for a while, until I hung around these boards and realized what was going on. So, I guess your first step has got to be getting to an informed, or at least open-minded doctor. And sometimes you have to do the educating.
That dosage seems so high to me -- but I'm not qualified to comment and I know you've been through hell. I hate it that you have to be afraid to ask for what you need. I sure hope things get better for you. Stick around here and let's swap information, experiences and most important -- HOPE.
That dosage seems so high to me -- but I'm not qualified to comment and I know you've been through hell. I hate it that you have to be afraid to ask for what you need. I sure hope things get better for you. Stick around here and let's swap information, experiences and most important -- HOPE.
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ViewsAskew
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- Location: Los Angeles
I wish I had an answer for you, Kathy. I don't know much about Methadone and its effects. You could probably do a Web search and find out a lot. Of course, not everything we read is true.
I empathize with you - my RLS is bad and screwed up because my doc didn't understand, and neither did I. When I read your story, it just made me mad all over again. One of the reasons I got to "educated" about RLS and drugs was because I didn't know and what the doc did screwed me up. We just have to be so vigilant. I can't think of any other disease where the docs can cause as much harm as this one when they don't have a clue.
In terms of the drugs, it's really trial and error for most of us. Since you have a lot of pain, I woudl guess you need to take some pain meds or find another way to control it. Lynne has had great luck with acupuncture for pain. The detox from Methadone would be intense - and will likely put the RLS through the roof.
I really have no clue about how you should best proceed. Until you can meet with Ondo, maybe you could write Dr B - www.rlshelp.org, there is a link to his email on the site - and ask him what he suggests.
I empathize with you - my RLS is bad and screwed up because my doc didn't understand, and neither did I. When I read your story, it just made me mad all over again. One of the reasons I got to "educated" about RLS and drugs was because I didn't know and what the doc did screwed me up. We just have to be so vigilant. I can't think of any other disease where the docs can cause as much harm as this one when they don't have a clue.
In terms of the drugs, it's really trial and error for most of us. Since you have a lot of pain, I woudl guess you need to take some pain meds or find another way to control it. Lynne has had great luck with acupuncture for pain. The detox from Methadone would be intense - and will likely put the RLS through the roof.
I really have no clue about how you should best proceed. Until you can meet with Ondo, maybe you could write Dr B - www.rlshelp.org, there is a link to his email on the site - and ask him what he suggests.
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.
doety--
Sorry, I haven't been on the forum for a couple of months, so I'm responding to something you said a while back when you started the methadone: good experience at first, then at least one bad day.
I take lesser opiods to varying degrees. Darvon every evening for my legs, Vicodin here and there for a periodically-recurring back problem, and once or twice a year I take Percocet, because my dentist knows I'm near-phobic about visiting him and it helps us both for me to take one before a procedure.
So anyway, I've noticed something about taking opiods, and probably other drugs as well: Absorption is massively affected by what you eat.
Some things seem to help you absorb, some will at least help a pill dissolve quickly, some will actually hinder absorption and/or dissolving (e.g. sometimes a big meaty meal can surround a pill and it won't dissolve or absorb for a long time). Cheese seems to have a particularly erratic effect for me. It seems to be a catalyst if eaten hours earlier, possibly by lubricating the intestines and speeding digestion or maybe metabolism, but if I eat it close to taking my pill, it seems to severely dull the pill's effect. Perhaps opiods dissolve into the cheese's oils and don't osmose well into the GI tract's walls.
Rate of movement through your intestines seems to matter a lot. I noticed once when I had (unrelated) diarrhea, which is really just an unexpected acceleration of movement through the intestines, the pill I had just taken started working in about a quarter of the usual time. I normally have very slow digestion because of the meds I take for reflux, so any differences are pretty obvious for me.
Being in your stomach vs. being in your intestines matters. If I take my pill with a large meal, it may be a while before everything in my stomach is sufficiently churned up with the acid and then allowed into the small intestine. My experience is that being in the stomach produces a sort of warm fuzzy feeling in the area, but not much practical effect anywhere else. I think it gets into the local tissues and not so much into the bloodstream. If you feel your dose isn't kicking in, you might want to try lying on your right side, which basically places the contents of your stomach on top of the valve to the small intestine, usually emptying it out a bit faster. At the very least, don't lie on your left side.
Oh, and if you go too long between meals without any sign of food, your metabolism and digestion will slow way down. Eating a couple of crackers here and there will keep it in gear.
Some of these things probably matter less with methadone, since it's a day-long thing and not a rapid ramp-up/down like the medications I've used, but still, some of it might be good to know.
Oh, and one more thing... if you find that any of these things do make a difference, note also that you can swing the pendulum too far the other way. Rapid absoption can be a problem, too. You get too much, too soon, and not enough later. For me, at least, with basically a 6- to 8-hour bad spot in the evenings, getting it to kick in at the right time and for the right duration has been an important thing to master.
_________________
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Sorry, I haven't been on the forum for a couple of months, so I'm responding to something you said a while back when you started the methadone: good experience at first, then at least one bad day.
I take lesser opiods to varying degrees. Darvon every evening for my legs, Vicodin here and there for a periodically-recurring back problem, and once or twice a year I take Percocet, because my dentist knows I'm near-phobic about visiting him and it helps us both for me to take one before a procedure.
So anyway, I've noticed something about taking opiods, and probably other drugs as well: Absorption is massively affected by what you eat.
Some things seem to help you absorb, some will at least help a pill dissolve quickly, some will actually hinder absorption and/or dissolving (e.g. sometimes a big meaty meal can surround a pill and it won't dissolve or absorb for a long time). Cheese seems to have a particularly erratic effect for me. It seems to be a catalyst if eaten hours earlier, possibly by lubricating the intestines and speeding digestion or maybe metabolism, but if I eat it close to taking my pill, it seems to severely dull the pill's effect. Perhaps opiods dissolve into the cheese's oils and don't osmose well into the GI tract's walls.
Rate of movement through your intestines seems to matter a lot. I noticed once when I had (unrelated) diarrhea, which is really just an unexpected acceleration of movement through the intestines, the pill I had just taken started working in about a quarter of the usual time. I normally have very slow digestion because of the meds I take for reflux, so any differences are pretty obvious for me.
Being in your stomach vs. being in your intestines matters. If I take my pill with a large meal, it may be a while before everything in my stomach is sufficiently churned up with the acid and then allowed into the small intestine. My experience is that being in the stomach produces a sort of warm fuzzy feeling in the area, but not much practical effect anywhere else. I think it gets into the local tissues and not so much into the bloodstream. If you feel your dose isn't kicking in, you might want to try lying on your right side, which basically places the contents of your stomach on top of the valve to the small intestine, usually emptying it out a bit faster. At the very least, don't lie on your left side.
Oh, and if you go too long between meals without any sign of food, your metabolism and digestion will slow way down. Eating a couple of crackers here and there will keep it in gear.
Some of these things probably matter less with methadone, since it's a day-long thing and not a rapid ramp-up/down like the medications I've used, but still, some of it might be good to know.
Oh, and one more thing... if you find that any of these things do make a difference, note also that you can swing the pendulum too far the other way. Rapid absoption can be a problem, too. You get too much, too soon, and not enough later. For me, at least, with basically a 6- to 8-hour bad spot in the evenings, getting it to kick in at the right time and for the right duration has been an important thing to master.
_________________
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Last edited by Aiken on Sat Apr 14, 2007 10:00 pm, edited 1 time in total.
I know food is a major factor but I think you're right about the intestinal part which I never thought was an issue. Opiods tend to back you up. I notice that when I'm very backed up from the constipation, sometimes the pill just doesn't work as effectively. It feels like it never gets to the place it needs to be in order for it to release and work. When things are moving well in there it seems to speed right through and work more effectively.
The light of a good character surpasseth the light of the sun
methadone experience
over the past decade I have tried every drug the medical profession considers for my acute rls and nothing was anywhere satisfactory. Some of the drugs, in fact, (mirapex, requip, parlodel) had horrible, painful, side effects and over time made the rls worst.
I have now been taking methadone for a year and a half and nothing has relieved the rls as well. In fact, for me, nothing has even come close to countering the horror I suffer with untreated rls. The side effects? Sleeping 8 hour a day is hard to get used to when before I never slept more than one or two hours (if that much) at a time.
I have now been taking methadone for a year and a half and nothing has relieved the rls as well. In fact, for me, nothing has even come close to countering the horror I suffer with untreated rls. The side effects? Sleeping 8 hour a day is hard to get used to when before I never slept more than one or two hours (if that much) at a time.
experiences with methadone
Hi Moss I know that you have been on the board since 2005, but I did not join until June of 2006 so I want to say welcome.
I have never taken methadone, but if that is working for you that is great. I am also glad that you are getting a good night sleep. Being sleep deprived is miserable as I have been there.
Keep us posted on how you are doing.
I have never taken methadone, but if that is working for you that is great. I am also glad that you are getting a good night sleep. Being sleep deprived is miserable as I have been there.
Keep us posted on how you are doing.
Charlene
Taking one day at a time
Taking one day at a time
ViewsAskew wrote:Hi Brenda! Good to "see" you here. Glad to here that you are tolerating it a little better. I hope that the next increase isn't too awful for you.
After trying hydrocodone and one other narcotics (one of the weaker ones), I also was so surprised at Methadone. The others didn't really help the RLS much at all.
Every doctor that I have talked to about my RLS freaks out when I even utter the words "Methadone". Could this be because Anna Nicole Smith and her son both died with Methadone in their systems? (along with a ton of other drugs too as we all know). But Methadone and Zoloft can kill you if taken together. I wonder how many people know this information? It is a scary drug, but then again, going days without sleep and seeing dead people walking in your bedroom (a severe symtom caused by insomnia) is a scary thing to go through too. LOL LOL
Mia
Methadone is highly associated with the treatment of drug addicts, mainly people hooked on crap like Heroin, etc. So it carries a strong social stigma.
Along the line of RLS, I'm sure most doctors are equally as ignorant as with other painkillers. It's less a celebrity OD issue and more a general lack of knowledge or flat out stupidity..
I stopped going to my county's human health services center when a psychiatrist decided that because I was interested in Methadone, and I have had issues with opiate dependancy, and am currently on tramadol; that I was drug seeking.
Well no sh** sherlock, I am seeking relief from drugs that WORK
I never considered him credible in the first place, but he totally killed any faith I had in their services when he told my counselor that Tramadol was not a treatment for RLS. Didn't even have the balls to say any of this to my face.
Along the line of RLS, I'm sure most doctors are equally as ignorant as with other painkillers. It's less a celebrity OD issue and more a general lack of knowledge or flat out stupidity..
I stopped going to my county's human health services center when a psychiatrist decided that because I was interested in Methadone, and I have had issues with opiate dependancy, and am currently on tramadol; that I was drug seeking.
Well no sh** sherlock, I am seeking relief from drugs that WORK
I never considered him credible in the first place, but he totally killed any faith I had in their services when he told my counselor that Tramadol was not a treatment for RLS. Didn't even have the balls to say any of this to my face.Zach wrote:Methadone is highly associated with the treatment of drug addicts, mainly people hooked on crap like Heroin, etc. So it carries a strong social stigma.
Along the line of RLS, I'm sure most doctors are equally as ignorant as with other painkillers. It's less a celebrity OD issue and more a general lack of knowledge or flat out stupidity..
I stopped going to my county's human health services center when a psychiatrist decided that because I was interested in Methadone, and I have had issues with opiate dependancy, and am currently on tramadol; that I was drug seeking.
Well no **** sherlock, I am seeking relief from drugs that WORK
Damn Zach,
Sounds like your doctors are all blood related to the idiot doctors here in my town as well. Telling me that getting my information from www.rls.org is not credible, is like saying eating too many french fries and cheeseburgers is healthy and won't make you fat. Hello??
Mia
(was that a terrible analogy or what? LOL)