I am due to visit my GP next week to renew my methadone prescription, which I am having a fairly good response on but still have some breakthrough symptoms and want to go from 8.75 mg to 10 mg.
However in the meantime, the Neurologist whom my GP referred me to 5 months ago has finally reviewed my case ( non-contact - I have never met them), and recommended that my GP stops methadone and trials Clonazapam ( Klonapin).
I am not keen at all but wonder what advice anyone might have?
Once again, I am so grateful to the members of this forum. Thank you in advance.
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How disappointing. If methadone has provided a good response, adjusting the dose to 10mg would be far better than a switch to clonazepam.Very few people with severe, refractory RLS get good or excellent cover on clonazepam.
I do hope your GP reads the Mayo Clinic Algorithm and the Massachussetts Opioid Register, and keeps you on methadone.
Clonazepam is a poor choice because the class of drug has to progressively increase to get the same results. It will only work temporarily if it works at all. This is a 25 yo solution. The neurologist clearly needs to update his education on RLS.
I was wondering about clonazepam, too, because I hear that it is the go-to medicine for RLS. But from what I'm reading on here, it doesn't sound like a good option. I was placed on alprazolam twice a day for anxiety, but it is very short lived. It was suggested that I switch to a longer lasting anti-anxiety medicine (specifically clonazepam was mentioned), but then my doctor retired. So I continued taking alprazolam. I am going to see a doctor on Monday and was going to ask about switching from alprazolam to a longer lasting medicine. Can anyone on here recommend a good, long-lasting, anti-anxiety medicine? Thanks!
Oh, I tried pregabalin, and it worked great for my RLS almost immediately, but then after a few days or longer I started swelling up in my lower limbs. So I had to stop taking it. 😩 But I appreciate the suggestion!
That does happen BUT, it usually settles in a month or so. Many people find the extreme side effects settle in around 2 months.I had it for the first 6 weeks. Then it settled.
I now take a very low dose and have zero swelling.
Wow, really??! My doctor let it go for about a week and decided the swelling was too much to continue taking. I wonder if it is worth asking if I should try it again. It's a different doctor that I am starting to see on Monday. So he may know more about it. Do you take it in addition to or in place of the opioid? The buprenorphine works so well for me, and I wonder about stopping the buprenorphine and starting on the pregabalin again or just add the pregabalin to my current regimen. They seem to be different meds, but I also know that pregabalin is prescribed for RLS. I had no idea it worked for anxiety until you mentioned it.
Can you give me the link to that research. Are you sure you are not confusing buspirone with bupropion. If your source is eHealthme, that just means that some people who have restless legs also take buspar and have side effects.
It actually isn't a link where I found this information. I just did a Google search. But now as I tried to find where it said this, I am not finding any reference to that. So I am not sure what it was that I read about it. Actually, now that I'm reading about these, it seems that both buspirone and bupropion are indicated as helpful for anxiety and it doesn't look like either affect RLS negatively. My bad...🙃 Thank you for catching this. Is this how you interpret the data? Also, which would you think can help anxiety the best and not affect RLS?
If methadone is working for you, push for that. Clonazepam helps me sleep but it causes daytime sedation/lethargy and because it has a long half life, there is a cumulative and compound effect. My understanding is that benzodiazepines shouldn't be used long term.
Yes, they say this. I (and towsands of others) have been taking Clonazepam for years (many times, decades) without no issue, such in my case, at leas at low doses (my case, never more than 0.6 mg). I am very happy with my current 0.4mg of Clonazepam + 50 mg of Lamotrigine, tackling anxiety/PSTD/RLS, very good life quality, whith no side effects.
"Benzodiazepines (diazepam, lorazepam, temazepam, clonazepam) before sleep may be useful for occasional RLS but longer lasting agents, like clonazepam, may result in more adverse effects such as unsteadiness in the night and daytime drowsiness and cognitive impairment".
This is because clonazepam has a long half-life of 20-50 hours: it will help sleep, but is likely to make you drowsy during the day.
Methadone works. The Mayo Algorithm gives a starting dose of 2.5-5 mg and a usual effective dose of 5-20 mg so moving to 10 mg seems sound.
Presumably your neurologist is not keen on opioids? If you haven't already read this pinned post have a look - it may reassure:
Thanks Chris, I feel that the neurologist doesn’t really know. They have recommended light exercise, meditation and deep breathing techniques - all without talking to me to learn that I have already tried just about everything under the sun!
Thanks Lotte, I ‘m pretty sure my GO will be happy to listen to me. From a search on this site, I didn’t think it was a good idea, but wanted to be certain.
Clonazepam has been pushed for RLS for a long time but it is useless for RLS. "The efficiency has not been established and they should not be used to treat RLS symptoms" per NightWalkers Fall 2021 a publication of the Restless Legs Foundation. It has a long half life of 40 hours so can cause next day sleepiness. It is mainly a sleeping pill.
I've been taking clonazepam for insomnia and RLS for several years. It's helped with the sleep but not the RLS, so I agree with what Sue and Jools say. Buprenorphine has been a game changer, although I still take clonazepam (0.5mg - 1mg) to help me sleep. I am able to shake off the morning drowsiness fairly quickly, but I'm hoping to start a slow taper later this year as I'm not comfortable taking so many drugs!
thank you everyone for your prompt and clear replies. With this information, I think my GP will be happy to keep me on methadone. Very Much appreciated.
_ just to share this: I have severe RLS since kid (now 71); however only realized this was a huge problem with my eternal insomnia in 2017, soon after retiremnent;
_ I have also UARS (upper airways resistence syndrome), well controlled with a Bilevel CPAP since 2018;
_ since 1985 I used to be on Benzo's (first clorodiazepox, then Clonazepam); never more than some 0.6mg clonazepam-equivalent; not continuous, stopping from time to time;
_ I could say Benzo's, without no doubt, saved my sucesful career and maybe my life. It controleed my eternal "insomnia", even without knowing was this my main issue;
_ after retirement still taking Clonazepam, sometimes for an entire year;
_ tried other meds, such as Pramipexol, pregabalin, all these awful shots; never more;
_ since some four years ago I learned how to manage my RLS with Emotion Freedom Technique and Energy Medicine (lots of literature, books, on this, by Dawson Church, David Feinstein, and Dona Eden, among others);
_ finally, some 3 months, I could stopped Clonazepam, I think, forever. Today I am only in 50mg of lamotrigine for PSTD, disturbed REM sleep phase, etc;
I was on clonazepam initially around 1990 when diagnosed with RLS but after a year or so of some lessening of symptoms, it just stopped working at all. Getting off of it was a 1/2 year of hell since no one would give me anything else at the time until I finally got some Mirapex. That also ended badly after a few years with augmentation. Ten milligrams of methadone has worked well for me for a year or so but now I am lowering my dose to 7.75 with the addition of dipyridamole at 225 mg. You could also try that. But methadone works well and your GP needs to look at the latest research on the opioid project about how few people need to up their dose after 10mg. There is almost no risk of addiction if that is what the neurologist is worried about. Where are you? If your GP won't let you stay on methadone, you probably need to find a new doctor. Clonazepam is NOT a choice and NOT recommended at all. Check out the RLS Foundation website to arm yourself with more info.
New study on it says it can help RLS. It is an already approved drug for other treatments so right now it is off label but will be in the new guidelines for RLS (see below). I am having some success with it but not completely sold.
There is no evidence of augmentation on dipyridamole, not saying there won't be sometime in the future but not at this early stage. If you mean clonazepam, it stopped working completely after about a year but they didn't call it augmentation at the time 15 years ago. If you mean Mirapex, yes it augmented after about 3 years and got less and less effective, I just didn't know what it was for a few more years of hell.
Dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.
Awsome Shumbah - wish I had this two years ago re:severe augmentation 10 years plus! Though it may help me support that buprenorphine 10mcg patch isn't enough (whilst less is good for most his highest does was 6mg buprenorphine tablet (guessing 2mg tablet 3x a day) which is around a 20mcg patch
Hi chickentwisty, you cannot directly compare the doses of the buprenorphine (7d) patch to the buprenorphine sublingual pills, as their absorption differs. But indeed, a 10mcg/h patch still provides a relatively low dose, probably comparable to sublingual pills of about 0.4-0.6mg. This is based on effectiveness in people who switched from pills to patches or vice versa. I switched from an effective 0.2mg pill to an effective 5mcg/h patch.
There are a few more people on this forum who required a 15 mcg/h or higher dosed patch to control their symptoms. Hope this helps.
Also and importantly, you have been writing several replies, most without references of where the text came from. In one you refer to chat GPT and I fear all of these replies where generated by it. ChatGPT is know to just combined found pieces of text without causality. And - worse - to generate / make up rubbish if it can't find anything. At least please always add that you used chatGPT to produce a text if that were the case.
Chicken, I would ignore her. Most of your replies are indeed well “referenced.” Your one reply which wasn’t referenced was in response to someone who similarly gave no references and advised a pregnant woman to make drastic alterations in her diet. Your reply included such simple common sense advice like “when pregnant and changing diet you should consult your doctor” that it requires no references.
Thanks so much Shumbah. I think (am hopeful) that my GP will take no notice of what the neurologist has recommended as I will go armed with all this information.
I so appreciate the advice offered from this group. It is so helpful for all of us. Much love to all fellow rls sufferers!
I've been on 10mg/day of methadone for over 5 years and still call it miraculous. But 7.5 mg will allow me to have breakthrough symptoms. You seem like the perfect candidate to bump up to 10mg yourself.
Absolutely, 10mg works pretty well but less than that, I have increasing breakthrough symptoms. Trying the 7.5 with dipyridamole but not sure if it will work. I may have to go back to 10.
Hi I started on clonazapan about 15 yrs ago but after awhile your body gets used to them ,sooo they give you more but you end up back where you started ,I’ve found in NZ most Dr don’t seem to know a lot about RLS I was on 4 which now I think that was ridiculous I was just a zombie I still take half one but pramipexel is the better one have a talk to your Dr
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