Has anyone tried Methadone for RLS?

Posted , 20 users are following.

My doctor would like to try me on Methadone and I have mixed feelings. I'm on a large dose of Ropinerole and it isn't helping me anymore. It's the only thing I haven't tried yet. RLS is ruining my life. It's now in my arms and legs and my quality of life sucks! Don't know what to do next.

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  • Posted

    Hi Sioux, Whatever you do beware of the methadone, do your research and hope they don't make you collect it daily or drink it on the chemists premises wink. Meth may help but the day you can't get it for whatever reason will be the worst day/night you've ever experienced regarding RLS, then throw in some good ole opiate withdrawals and you'll wish you were dead. 

     I am hoping to be put on Ropinerole very soon and I'm keeping my fingers crossed that it will help my dopamine levels which I'm guessing are depleted due to years of H and Meth abuse (idiot, I know) However I'm now three weeks and counting clean. Yay for me!

    Whatever you are prescribed I hope it works for you. smile

    • Posted

      Hi Zappafan - Catholic girl here (very lapsed, and not ageing well!)

      Just wanted to say well done on getting clean. its hellish, but stick at it. Ive never heard of Ropinerole - is that for RLS, or a different type of opiate-blocker for relapse prevention?

      I have been decreasing my meth a few mls at a time for ages, because they have to be so careful not to trigger a manic episode (they are pretty spectacular and one of the main results is drug use! i just become this monstrous sociopathic party fiend and have no insight that i am ill - i just think im having a good time, until I come down... last time it was a coke binge, thankfully, as the withdrawals werent too bad despite my catastrophic, Scarface-style indulgence!) 

      I do think tho, for someone on methadone for a medical need, rather than drug treatment, the rules are subsantially relaxed. For instance, my neighbour who had it for RLS was able to pick up monthly - because the amount she needed was so small, and because she wasnt liable to the same dangers of overdose, relapse, simultaneous illegal drug or alcohol abuse etc). So I think Sioux doesnt need to worry about the same problems that afflict us poor sinners taking meth for our past transgressions!

      All the best with your recovery - you deserve to get better. Message us anytime if you want to vent or whinge to a fellow traveller!

      C

    • Posted

      Hi Catholic girl, thank you for your kind words of support.

       Without trying to be sarcastic I was being a bit tongue in cheek with the comments about collecting meth daily etc, even with mine and my partners opiate abuse we were still allowed to collect our meth weekly which was a great help as my partner works full time and I worked full time sometimes but mostly a house husband to our boys, as you can imagine living in a relatively rural area away from our main town this was an enormous help.

       But then we never were what most folk would term 'stereotypical smackheads' as we didn't do the whole 'needles, thug life, daily crime to support a habit thing' , can't be doing with all the drama drama drama.

       Going back to your first comment, Ropinerole is not an opiate blocker like buprenophine aka subutex (yuck disgusting tasting fowl beast of a tablet), it's what they call a dopamine agonist which from what I can gather tops up the brains natural dopamine levels. RLS is/can be caused by low levels of said dopamine and as our not so good time buddy heroin works it's magic by tricking your brain into releasing dopamine the brain gets used to this good feeling naturally produced hormone therefore when you stop with the opiates brain says arghhh not enough dopamine to sustain normal levels of daily function, which is where Ropinerole can help. 

      However from what my dr explained and forgive me dr k if any of my facts are wrong taking Ropinerole would result in heightened levels of dopamine which would make brain think 'mmmmmmmmm I remember this feeling from when you used to give me heroin, hello old friend, let's explore this warm blankety buzz some more' .

       As I/we are doing so well in our recovery our dr obviously doesn't want to give me anything which may cause relapse, I've told him there's not a hope in hell of this happening as after ten plus years of the foil tube I've really fallen out of love with it in a big way, been there done that. In the words of Sean Rider from the Happy Mondays 'it's great when your straight yeah' now I can totally relate to this statement.

       So it seems I'm in a bit of a self caused catch 22 situation but on the plus side the RLS is slowly, very slowly getting less intense but sleep is very problematic, again probably a by product of years of heroin induced sleep how long it'll take to totally go is anyone's guess. 

       Serious good luck with your own demons, sorry If I've rambled at all but when I get woken at 5:30 most mornings by chronic acid indigestion the web is an ideal way to vent, share and get little gems of support and advice from non judgemental (relative) strangers.

      In no way do I claim to be an expert on RLS or Ropinerole or dopamine, I've just had to learn as much as I can in the last month or so since almost stopping opiates cold and entering the twitchy bones world of RLS.

      I'm off to listen to some 'proper music'. In the words of one of the worlds greatest musicians "music is the best".....too true Frank, too true.

      Good luck catholic girl, stay in touch. x

       

    • Posted

      Curioser and curioser .... i am going to ask my doctor about This interesting new drug next week when I see her!! (drug doctor I mean)

      Ive never heard of this but thats cos I am such an 'interesting case' translation dual diagnosis, but like you say a 'normal person' so no drama, so they get double whammy of someone who ticks all the boxes on their 'high input/sensitive case' paperwork, but dosnt actually require much input at all cos I turn up for my appts and dont give any trouble!!)

      Im in a rural-ish area too, and like you say, pharmacists doctors etc are all really helpful because of the the strictures that places on transport etc, I just wanted to get that message across to Sioux cos if its prescribed by a GP it would prob be a different story from all the rules and regs and red tape we have had to battle with in the past - if meth would help her i didnt want her to be frightend, Us battle scarred old vets forget what a loaded word the dreaded 'methadone' (cue lightening strike and sinister horrorshow cackle!!) can be to the uninitiated !

      I am sincerely hopeful that my old friend Mr Ryder is correct that its great when your straight' but due to other health probs I doubt I ever shall be .... by the time im off meth, ill prob be on tramadol or worse for my arthritis!! Funny how 'the wages of sin' works. I mis-spend my youth greedily swallowing, snorting, smoking and injecting every substance I can get my hands on ..... my 20s and 30s repenting and detoxing.... then my 40s getting put on all these heavy drugs by the blinkin Docs all over again!!!

      And to think: Chemistry was the only O level I failed.

      Yep, I know that 5:30 feeling too well ... thank God (or is it the Other Guy?) for the internet!

      Same here mate - PM me anytime (otherwise I will end up getting told off for hijacking yet another discussion)!

      Take it easy, x 

    • Posted

      I'm on ripinirole and it does help for a few hours at night!!

      its days I'm trying to control now!!

  • Posted

    Hi Sioux - Dont know whether you are in the Uk or not? I just wanted to sort of put a more reassuring slant on the idea of methadone - I know there are bound to be concerns about such a 'controversial' substance, but I have heard that it can be an absolute miracle cure for RLS. I had a neighbour who I used to hear weeping in the middle of the night because of RLS. She tried everything to no avail  - medicines, supplements, diet, hynpnosis, acupuncture.... then was really worried when GP put her on methadone. 

    It caught my attention because I have Bipolar 1 and 20 years ago I spent a decade self-medicating with heroin, after which I successfully transferred to a maintenance dose of methadone. I have been on it ever since because my mental health is too fragile to risk detox. And it really is no trouble at all, i completely forget about it half the time. The pharmacist is really helpful about it, and supervised consumption only applies to people who are on it for drug relapse and who have to be monitored, For someone with RLS or intractable cough etc, ie for medical need rather than drug rehab, it would just be treated like any other CD medication.

    My neighbour found within ONE WEEK she was substantially better and within a month she was sleeping a full six hours every night (she had previously been lucky to get an hour at a time uninterrupted and was becoming very sleep deprived). So I would say, if nothing else works, for heavens sake give it a try - your Doctor will be exquisitely careful not to prescribe a dangerous or troublesoe dose, and if you have no opiate tolerance/low eg codeine tolerance to start with, a very small dose is all that would be required. 

    Best of luck and let us all know how you get on! 

    Christine x 

    • Posted

      GREAT news about your neighbor getting such relief from RLS with Methadone. All I can say is, "Amen,  me too!"

      I fully understand about the middle-of-the-night weeping also. I would vacillate between exhausted crying and angry outbursts when I totally couldn't sleep. Not a pretty picture.

      Spread the word, methadone for RLS! And it's cheap too!  Cheers. 

  • Posted

    I have the very same as you do!! I'm on ropinirole 2.5m now, it was helping but has stopped during the day, I can't wait to take at night but only works a few hours! I'm gonna go back to doc tomorrow if I can get appointment to see if he has anything else!! Like you I'm going crazy!! 
  • Posted

    Just wonder what dose or ripinirole your on, I'm on 3 mg
  • Posted

    What do you mean by bioavaiable  iron?  Do you  have trouble with indigestion at night after taking iron?
    • Posted

      I'm not sure if you're talking to me or Sioux about the bioavailable iron.  When I read about iron many years ago on the internet it said to just take it at night if your iron levels are normal.  I had restless body and I was desperate so I tried it.  I also have IBS so I bought the kind that goes into your bloodstream rather than your colon where it can be constipating.  It's called Easy Iron or Iron Bigysinate.  It worked each and every night.  I could not miss a night and the affects wear off after about 6 hours maybe 8.  I always took it on an empty stomach and it never upset my stomach.  When I took it on a full stomach it did not help the RLS.  Anyways I realized that the melatonin, benedryl and zantac were giving me restless body and immediately stopped all of them.  Antidepressants will do the same, give you restless legs.  Now I only occassionally get RLS, and sometimes it seems to be tied to those times when I overeat at night.  One time I ran out of the Easy Iron and went to the drug store and bought ferrous sulphate figuring I'd rather be constipated then have RLS.  It didn't work.  I took a second one and eventually fell asleep.  I tried once or twice more but it never worked.  I think I even tried it with vitamin c and that was better but not as good as the easy iron.  Sorry for the long post. 

       

  • Posted

    Sorry to be weighing in so late on this, just joined the forum.  After 20 years of progressively worsening PLMD, I injured my back and discovered Methadone.  For the last 10 years I've been taking it once a day, even skipping a day once and awhile and I'm not taking it for back pain.  It eliminates the PLMD 100%.  However ... I have an extremely high tolerance for drugs, Methadone can be extremely dangerous to certain people, even fatal.  It works, but I'm not sure the risk is worth it.  I decided last month to find another way.  I've done tons of research online and am approaching this curse from a different healthier angle.

    My advice to anybody considering Methadone is to save it as a last resort.  If you go that route, you'd better plan on using it for rest of your life.

    • Posted

      Greetings Martin80629 -  I'm curious how much methadone were you taking? And did you start taking it primarily to help with your back pain, and it just happened to help your PLMD? I don't think the 15 mg of methadone that I take for RLS would do much for any other pain, as I barely even notice it. I'll have to ask Dr Earley why methadone works for RLS, and not other opioids/pain meds. I'm just grateful it WORKS!  Cheers. 
    • Posted

      Hi there.  I was given Hydrocodone for my back pain when I injured it 2004.  Almost immediately I noticed the leg quakes were gone but I didn't like that drug.  HAD to take it every night or I would get withdrawls.  Went thru several opiates before the Dr. gave me Methadone, 10mg.  I used it for 10 years with absolutely no side effects, even went off of it a couple times to appease the significant other, (she hated that pill because of it's reputation), and never had a withdrawl symptom.  I'm on Requip now but hate it.  Makes me sick to my stomach all night and half the next day and seem to be making my legs worse.  They will now start acting up in the evening when I'm trying to relax, (they NEVER did that before), and it's taking more mg to shut them down at night.  Next Dr. visit, I'm asking him to take me off the Requip and put me back on that magic pill that works so well.  If I have to take it for the rest of my life - so be it.  I'm not going to let anybody judge me who hasen't lived with this curse.
    • Posted

      Hey I'll be thrilled to take 15 mg of methadone every day for the rest of my life if it keeps my RLS at bay! I wouldn't worry what others say, if methadone works, take it! 

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