I am 68 years old and have had RLS for at least 25 years. I have tried everything from gabapentin, the dopanine agonists (experienced augmentation and withdrawal from hell), tramadol (it became ineffective) a couple of other narcotics, cannabis, iron and magnesium. I have experienced symptoms in the day time as well a night time, in my jaw and arms. I had to retire early because I was so sleep deprived I could not function. I have seen 4 different neurologists and felt completely hopeless. I switched to a doctor who is a sleep specialist in the Seattle area. He put me on the lowest dose of methadone. I have had virtually no symptoms. I understand that I will not experience augmentation on methadone. I was very reluctant to take methadone. I am so thankful I have given it a try. I feel "normal" and have my life back. My doctor has said I can probably stay on the drug for the rest of my life. To me, it is a miracle and very sad my other doctors would not prescribe methatdone and I struggled all those years. My doctor said if I ever have to go off the methadone the dose is so low that I probably would experience very minor withdrawal symptoms. It is so wonderful to be able to go to bed, stay there and sleep!!!!
Tried everything and have found relief - Restless Legs Syn...
Tried everything and have found relief
Yes, you are so lucky to be able to find someone who is prepared to prescribe methadone.
In many jurisdictions, it is avoided, having been associated with drug addiction for so long.
It is typical of the closed minds of medical and official decision making, that an extremely effective solution, with virtually no drawbacks ( at the levels recommended for rls) is disregarded.
Dr Buchfuhrer recommends this as his first line of medication.
We are not served well by those who are in charge. 🙄🤪
Congratulations at the joy of feeling normal! It is such a luxury! As Madlegs1 says some less enlightened Drs tend to shy away from this line of treatment, maybe they are worried we'd all be on the streets shooting heroin, who knows?
Delighted for you, long may it last.
Brilliant, I'm so pleased that you've gained such relief.
So pleased for you, really hope the success continues and you can have your normal life.
There should be more awareness out there for sufferers such as us, ' normal' people have no idea how debilitating it is.
Delighted for you.x
What dose are you taking if you don’t mind sharing. Thank you!
I am taking the lowest dose possible which is 5 mg.
Absolutely delighted for you. One day, the dinosaur doctors and neurologists will see the light and prescribe methadone for all RLS sufferers worldwide.
We just have to keep spreading the message and maybe.. just maybe, the prescribers will listen.
Hello. I have been seeing a neurologist at Swedish in Seattle for almost a year. She is capable but is woefully ignorant of RLS. Would you mind informing me of the name of your Seattle sleep specialist? We live in eastern Washington but have no trouble driving to Seattle for care. I am envious of your RLS-free life.😉
Absolutely! His name is Gandis Mazeika. He is with Sound Sleep Health in Kirkland. I first saw his PA Birgit Weeks. She took an extensive history but is not as near knowledgeable as the doctor. You may have to see her first but make sure you get an appointment with the doctor. My e-mail address is lucasma210@gmail.com
Thank you so much. We will get right on it. My wife doesn’t have rls (imagine if both of us were rattling around in the bed all night) but she does have sleep apnea and uses a cpap machine. We will make an appointment for both of us.
Thanks again for your prompt reply.
BJ
I should add be wary of the PA Weeks. She made extremely negative comments about methadone to me prior to me seeing the doctor. I would not rely on her advice regarding methadone therapy. You should see the doctor. He overuled her objections.
Hi Mattie, best remove your emailaddress. If you want to share it with someone, send a personal message.
I am very interested in what you say as methadone has been suggested to me. I have done a bit of research and I came across this piece in 2004. I am in the UK and am not aware of methadone being used for RLS. It seems that even though there was a good response in refractory RLS patients usage is still limited. May I make reference to your post when I see a neurologist in a couple of weeks?
“Item 1 of 1 (Display the citation in PubMed)
1.Mov Disord. 2005 Mar;20(3):345-8.
Methadone for refractory restless legs syndrome.
Ondo WG1.
Author information:
1. Baylor College of Medicine, Houston Texas 77030-2744, USA. wondo@bcm.tmc.edu
Abstract
Most cases of restless legs syndrome (RLS) initially respond well to dopaminergic agonists. However, an unknown percentage of patients is intolerant of dopaminergic adverse events, initially or subsequently refractory, or develops limiting augmentation. We administered methadone 5 to 40 mg/day (final dose, 15.6 +/- 7.7) to 29 RLS patients who failed dopaminergics. They were currently taking or had previously tried 5.9 +/- 1.7 (range, 3-9) different medications for RLS and 2.9 +/- 0.8 (range, 2-4) different dopaminergics. Of the 27 patients who met inclusion criteria, 17 have remained on methadone for 23 +/- 12 months (range, 4-44 months) at a dose of 15.5 +/- 7.7 mg/day; 2 dialysis RLS patients died while on methadone, and 8 stopped the treatment (5 for adverse events, 2 for lack of efficacy, and 1 for logistical reasons). All patients who remain on methadone report at least a 75% reduction in symptoms, and none have developed augmentation. Methadone should be considered in RLS patients with an unsatisfactory dopaminergic response.
2004 Movement Disorder Society.
PMID: 15580610 [Indexed for MEDLINE]
Icon for Wiley “
Martin
I asked Professor Choudhuri’s team at King’s College Hospital why they don’t prescribe methadone and was told because there’s no research on its efficacy and they don’t have the funds to do the research.
I explained that there is research in the USA and that the top RLS experts are prescribing it with great results.
I could almost hear the metal shutters being pulled up! We have a long, long way still to go here in the UK.
Grrrrrr, and that is to Professor Choudhuri's response to you. Funny they excepted the research done on the dopamine meds which came from the USA.....i think. ? And allowed us to take them and look how they have turned out for those who have taken them.
I know- I really haven’t been impressed with King’s- the first registrar I saw suggested the Neupro patch- I refused and explained I had just got off Ropinirole because of Augmentation and would never touch another DA.
I prefer to get all my information from Drs Buchfuhrer, Winkleman, Ondo and Early in the USA.
You wont go wrong with getting the best info from all of those doctors, all dedicated in helping people get the best help for their RLS. Unlike here in the UK where we have no such doctors with that dedication, and most who dont have a flipping clue,!!
Sad!
Absolutey!!
That makes sense. I find a lot of people get RLS relief with LDN (low dose naltrexone, like 3-5mg). Must have something to do with opioid receptor modulation in the body.
Hi Mattieluke, I live in the Puget Sound area and am in search of a Doctor who will do the same for me. I'm 72 now have dealt with this for almost 25 years. My experience parallels yours, the use of Dopaminergic therapies and augmentation. I'm now trying Rick Simpsons Oil and this second night it seems to be working. Could you tell me how the Methadone therapy is done? Is it a pill, do you take it only at night and can you legally drive? The thought of being dependent on Methadone doesn't bother me at all.
I have 2 possibilities for you:
Dr Oneil Bains (206) - 625-7180 - an internist and sleep specialist - does telemedicine. He was submitted to the RLS.org by someone who used him and found him knowledgeable. He still might prescribe dopamine agonists which you don’t want and/or he might not prescribe opioids if you need them. The reason is that the person that submitted the name might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS. If you are not familiar with it it, check it out at Https://mayoclinicproceedings.org/a... I gave his name to givingITMybest so you might message her to see if she used him.
Dr. Sindhu Srivatsal - a neurologist - does telehealth - specializes in Parkinson's but is shown to have a high frequency of treating RLS 206-693-4976 Virginia Mason Medical Center.
If you see either of these please let me know what your experience was with them so I will know whether to recommend them again.
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