Has anyone tried Methadone for RLS?

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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

    Please check to make sure you are not taking anything that raises serotonin (especially at night) such as milk, alcohol, melatonin. Also do not take anything that interferes with absorption of iron such as antihistamines and antacids.

    With that said, I believe that what we need is anything that raises our dopamine levels at night. We especially need iron to make dopamine. But if you have an autoimmune disease, cancer or inflammation your body is probably withholding iron in an effort to kill off what it perceives as an attack. Everything loves and needs iron, from bacteria to cancer cells. By withholding iron, in the short term, our body is demonstrating a very magnificent defense mechanism. But in the long run, it can cause horrible RLS because our brains are also depribed of iron. Less iron means less dopamine. Plus EVERYONE's iron availability drops at night. So take a body that is already withholding iron, combined with a night time drop and you have restless body.

    So now, things that raise dopamine....yes methadone probably does a wonderful job of raising dopamine. That is why it does such a great job for people going through heroin withdrawal. And you may never even need to increase the dose. The same is probably true for morphine. It will raise your dopamine levels and you may never need to increase dosage.

    Now for the alternatives, rumor has it that Gingko biloba also raises dopamine and people have gotten relief with this substance. Allegedly even saffron will raise dopamine levels. Orgasm will raise dopamine levels, albeit for about 10 minutes.

    I personally have gotten complete relief by sneaking my brain some bioavailable iron at night, on an empty stomach. It only lasts one night and takes about an hour to kick in. It is not a cure, nor are any of the above. Iron infusions and massive doses of iron will do nothing for my RLS. Once the iron gets stored, my brain will never get any of it. I have too much inflammation and my body withholds the release of it from my stores. The iron I take at night on an empty stomach goes right into my bloodstream and my brain can suck it up from there. After about six hours it is gone from my bloodstream and I must repeat next night. It has never failed me unless my gut was full or I used the drug store kind. Also, I have a feeling that people who did iron infusions and have very high iron stores will not benefit from this treatment because their body will block all absorption from the gi tract when the stores are ridiculously high.

    Iron is a heavy metal so if you do try only do so a few times and then consult with your doctor. Good luck my friend.

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    • Posted

      Hi.  Just wanted to add a few things to your post.  Vitamin C helps iron absorption so is really helpful.  The type of iron supplement makes a difference.  Ferrous sulphate is the most common but this can cause constipation.  Ferrous gluconate is kinder to the bowels. Personally I would avoid taking iron supplements or only take them for a short while as they can deplete zinc levels.  Taking vitamin C will ensure you make the best use of the iron you are taking in food. 

      I would also look into the amino acid tyrosine.  This helps the body to make dopamine.  My husband has been taking it for a while now because of RLS and the difference is staggering. 

      Sue

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    • Posted

      I don't have RLS but my husband does.  The only iron he takes is in a multi supplement so I can't comment.  I do know that tyrosine may a huge difference.  It hasn't banished RLS completely but almost.
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    • Posted

      Just to clarify, copied from widkipedia: In dopaminergic cells in the brain, tyrosine is converted to l-dopa by the enzyme tyrosine hydroxylase (TH). TH is the rate-limiting enzyme involved in the synthesis of the neurotransmitter dopamine.
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    • Posted

      Yes, I tried tyrosine but found it stimulating rather than sedating and as well as something called Citicholine which I believe is supposed to shore up the shoddy dopamine receptors that people with RLS have.  I agree about the iron.  Would never supplement with it but to stop the RLS.  I use it as others use dopamine agonists.  I consider iron to be a dopamine agonist and just as fleeting in it's effect.  RLS is sometimes referred to as the anemic brain.  Our bodies stores of iron can be normal or even high but our brains are low on it.  So at night I literally sneak my brain some iron before it gets stored away and only do so when the RLS is acting up.  I take a form called iron bi-glysinate on an empty stomach when I feel the RLS.  Because of the form that it's in it enters the bloodstream somewhat readily and I believe my brain can readily pick it up from there whereas it cannot seem to get any from my stores.  Anyways, within one hour I'm asleep.  Once or twice I've been awake and I can feel my legs relax from the iron before I drift off.  I will try the tyrosine again next time I have RLS or maybe I should just try supplementing with it?  I like a quick fix which is what the iron is.  All the best to your hubby!

       

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    • Posted

      I had never heard of Citicholine but will let my hubby know.  I love these forums - so much easier to get ideas from the people who really know.  All the best to you too.
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  • Posted

    You might want to try Neupro 1 mg. It's a patch you put on at night and take off in the morning. I've had some pretty good results from acupuncture. Tramadol (a pain medicine) works very well.
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    • Posted

      Hi Mary, I was speaking with my chemist the other day and he said that he was prescribed Tramadol for a serious back problem, he took them for six weeks before having a successful operation which as far as I know cured his back.

       However once his back was cured and he came off the Tramadol he developed RLS in both arms and legs.

      I however have foolishly spent the last ten odd years developing a rather nasty Heroin habit (I'm 44 btw) for which after some years was prescribed Methadone and after taking both for some years have recently weaned myself off H and then Meth, both of which I believe lowers ones overall dopamine levels considerably after years of use.

       Now if I've been doing my research correctly and god knows I've had a lot of long sleepless nights spent online searching and reading, I believe that low levels of dopamine seem to be one of the main cause of RLS which I can wholeheartedly vouch for as I have recently developed it since coming off the opiates and the last time I took meth it cured it for three nights straight, however as I have given up opiates completely, taking meth seems to defy the object of giving up............

       Going back to the dopamine thing my readings on Ropinorol seem to shed hope. I had a blood test last week which I think my Gp is testing for Kidney probs, low Iron and/or god forbid diabetes. He did mention Ropinorol which he seemed to believe in and as I have upmost faith in him providing my bloods come back ok I expect he will put me on them. In the mean time I've started taking muti vit/iron tabs daily as I'm willing to try almost anything to "rid myself of this affliction" (Renton, Trainspotting).

       I shall return to let anyone interested what happens as this is driving me potty sometimes.

       Sorry for straying a little off topic.......smile

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    • Posted

      It's great you've come off H and Methadone and are watching out for your health.  I cheer you on.  Thanks for the tip on Dopamine.  I found you're right.  I also read that most of the precursors for brain chemicals are manufactured in the gut!  So I am looking for those precursors and will take them.  Low iron stores (not anemia) do cause RLS and the best way to bring those up is the chelated iron.  Mine were low and so was vitamin D. So I supplement both now.  Good luck!
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    • Posted

      HI Mary, Thank you for your support. Very interesting what you said about the precursors for brain chemicals originating in the gut. I have to admit to not hearing that before but I'm interested in looking into it as my Dr. has dealt me a cruel blow after my 'Drug councillor' (I hate that name) said that he (Dr) was going to prescribe me my saviour Ropinerole, yes I thought, no more twitchy, aching, crawling bones. He then walked in and spent the next half hour telling me why he DIDN'T want to give it to me.

       He said that because it's a drug which will increase my dopamine levels, he was concerned that the raised dopamine would either remind me of the feeling of H or it'll make me more likely to want to relapse.

       I was so disappointed after being told two mins earlier by the councillor that I would be getting prescribed this, he also told me about the effects on RLS of Benzodiazapene aka Valium which I would imagine would be a heavenly release from the damn legs as it makes you positively melt into whatever you are sitting on at the time and your body feels relaxed as can be, almost numb, they only take ten to fifteen mins to work also. My darn fingers are going off at the moment, and my right arm, as well as the legs as always.

       So I'm now some Five weeks clean of the dreded H and about three from Meth, still getting the occasional rattley withdrawal feeling though, but overall positive and alive. It's great to feel again apart from feeling the RLS which is bugging the hell out of me and only letting me sleep 3 or 4 hours a night. Wonder if I've had it for years and the drugs masked it or if the stopping of drugs kick started it. Either way it would be so easy to either pop into town and grab a Valium or two or have a sip of my partners Meth and stop the RLS in it's tracks for one maybe two nights but these options, as I mentioned previously wouldn't do me any favours and would show up on tests with councillor so they're unfortunately not a viable option.

      I have found though that cannabis calms my spasms down, sometimes considerably leading to a few hours kip if I'm lucky but Acid indigestion always wakes me up early anyway.

       Sorry to leave suddenly but can't bare this any longer, I'm going to have to have a smoke as I didn't finish working today till just gone midnight and my legs are letting me know in no uncertain terms.

      Sorry for shooting off, agony, arggggghhhh. Where's the pot tin?  smile Bye x

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  • Posted

    I've tried the Neupro patch and it sent me into a deep depression. Had to get off of it.
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    • Posted

      What about Pramipexole?  I haven't tried it but that may be my next choice.  My doctor says she's had success with it with her other RLS patients.  Definitely treat the depression though, I think, no matter what. I've had that too.  My antidepressant exaggerates RLS, but I'd hesitate to give it up just for that.  I heard Bupropion is a good antidepressant that does not increase RLS and may even reduce it.
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    • Posted

      I am on pramipexole and it works for me but I have been on it for 3years now and I take the 24 hr release one but I now need to take at least 3 of. those within the 24 hours as they wear off and in between I have 0.088 gm tablets as well I also have a larger mg tablet I purchased from turkey I use them to try and keep it away when on an airoplane which it a nightmare and I go to turkey 3 times a year I am trying to get names of other medicines which help as research suggests that a change of medication tricks the brain  and when you go back on the pramipexole it's like starting from scratch again so lower dose should work again so any names of meds would be helpful 

      coral

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