I'm meeting with a new consultant at the end of the month regarding my RLS and DA augmentation.
From what I've researched (on here and with Dr.B) it would appear opiods are my best bet.
Is there one which performs better between Methadone or Buprenorphine?
Hi. I've taken both for RLS. Methadone got me off of the DA's easily, but then I started a new road in hell, which I can explain another time. They both stop RLS. I would say that you will have to see what this doc is willing to prescribe-it is not that easy in the US, where a doctor says-"oh, which opioid would you like me to give you?!" That made me laugh just typing it!
If you actually DO have a choice, you really should try both and see which side effects you can live with long term.
I will say that buprenorphine seems easier to get and from more doctors. Methadone is super difficult to get and you will not just get it from any doctor. You may also have issues with the pharmacies and subsequent delays.
Dr. B seems to most often start his patients with methadone. I did not like the side effects, personally, but they ALL have side effects. Many people on the forum like their buprenorphine very much, but I have vomited from it several times and it can ruin your teeth. I have also tried Oxycodone, which did not work as it only lasts 3-4 hours. I now have Suboxone (sublingual buprenorphine paper) which I am trying NOT to take as I don't want to go back to an opioid just yet. It works well for RLS but it also gives me strange, very strong upper abdominal contractions.
My advice to you is to use one of them very, very short term, and at the lowest possible dose, to get off the DA's. After that, try to see if other solutions could work for the long haul, such as gabapentin, Horizant, nightly iron, or an infusion, etc. If you were taking DA's for many years, receptors can be damaged and those natural/safer solutions may be impossible. Gabapentin and Horizant did not work for me for this reason. Overall, this is what I am working on for myself; I am taking berberine daily as an experiment for the receptor repair and using kratom and hirsuta to get through the rls nights.
Thank you so much for your informed and detailed answer- it's been so helpful.
I was on a very high dose DA for 10+ years and most likely have Dopamine receptor damage. So I'm expecting an opiod rather than e.g. Gabapentin.
I have been to a couple of pharmacies near to where I live and told them my situation and that I might potentially be prescribed an opiod. To date, ot one of them stocks and dispenses opiods, which really concerns me. I would LOVE to think that Gabapentin and such like would work for me, but, sadly, t failed to help with my RLS previously.
Thanks again and I wish you all the very best for the future, Teddij.
You are so welcome. I know-the opioid road has its own struggles and issues. But, you will find a pharmacy somewhere, just probably not as convenient as you would like. It's also possible that things will change when you get off the PRAM totally-maybe the gabapentin or Horizant could start working. I know someone on the forum who takes a combination of BUP, dipyridamole, and Horizant and that works well.
If you want to start tapering down now, instead of waiting several more weeks, order some red vein kratom or hirsuta powder to use overnight for withdrawals. It is very good to have it on hand and as a backup for future opioid issues, too. I was cut off from methadone twice by 2 doctors and it totally saved me the second time (I didn't know about it the first time and I went through hellish withdrawals, even after only 2 months on methadone).
Hi TeddiJ - May I ask, what dose of Methadone were you taking when you discontinued it and had withdrawal symptoms?
Hi. I was taking about 5-7.5 mgs last Fall and earlier this year. I hadn't been on it very long-maybe 2 months- and I had no idea I would go through withdrawal so horribly. The first doctor was only willing to give it to me short term to get off the DA's and I thought that might work just fine, as the research I was reading indicated that you only needed it for the 10 day washout period. I ended up having the night from hell and I thought about jumping from my balcony. I was able to get a few more from that doctor and then he would not return my calls. I then found another doctor who would actually prescribe it, but when the DEA started breathing down his neck, he cut me off, too. I was super desperate and making appts all over the country that were months away. I was calling all around and seeing local doctors who wouldn't help. I was writing on this forum for help and I was absolutely terrified to go through withdrawal again-I didn't think I would make it a second time. Then I found out about kratom, which got me off the methadone and also stopped the rls. Once I was off methadone, I realized I really felt so much better and I did not want to go back on it. Between the side effects and the constant worry about whether I would get it each month, plus having to fly across the country to even get a prescription....it was all such a huge drag and another level of hell on top of the rls. And I'm still dealing with it all.
I'm totally broken-hearted reading this. Devastated for you. This is all so unfair.
Thank you! I re-wrote part of it for clarity. It has been absolute hell. I thought getting off the DA's was so exciting and such a huge thing. I had no idea what was ahead of me.
Yes, it is so unfair what we have to go through to get the opioids. Some people have found the right doctor and have a backup plan if something goes wrong with the doctor or the pharmacy. Most do not have a backup plan and have to travel to even get the prescription.
So sorry to hear you have gone through this. Yes, getting Methadone can be challenging. After reading on this forum I know how fortunate I am to have a RLS doctor who is one of the leading experts as well as a primary care physician who is willing to prescribe my methadone for me in my state of residence.
RLS sucks. It’s not a sexy affliction. I honestly believe most doctors deny it all together much less are willing to get educated and stay educated on it. Sometimes knowing I’m not alone in this constant fight is the only thing that helps keep me from not wanting to jump off a balcony too. So sorry you have gone through all of this.
following. I’m seeing Dr B in January and will need to consider the same question.
following… thank you
Hello FloridaRN - I happen to be a Florida RN with RLS as well! I have suffered with RLS for as long as I can remember. I’ve been down the Requip augmentation road too. Methadone has been life changing for me.
I'm so happy and encouraged to read this. May I ask:
Do you need to take anything else with the Methadone to ensure RLS is no longer an issue
Was it easy to find a doctor to prescribe you meds?
I live in Texas. Have been on 7.5 mg of Methadone for 5 years now. A life changer for me as I had run the gamut of DAs through the years. Best wishes on your journey!
I'm delighted for you. Wonderful news 👏
BUPRENORPHINE In the form of Subutex sublingual is the safest and kindest.
I break it into tiny pinhead pieces and pop one or 2 under my tongue and then another one or 2 until desired effect.
I do this because it absorbs completely in seconds can’t taste it due to tiny size , it does not get anywhere near my teeth and I can manipulate the dose . Something doctors would hate. I HAVE NEVER EVER NEEDED TO EXCEED MY 2 mg dose.
Some might go from 1 mg to 2 mg in the first year and then there is ZERO creepage .
If you are prescribed 2mg and you find 1 mg half a sublingual works DONT tell the doctor. Just save it incase , you have insurance issues or pharmacy issues , supply issues , change of doctor issues. We have to think ahead I’m afraid and it is handy to have a little extra just incase you have a supply issue out of your control.I know many people who have run into supply issues.
It is highly regulated .
October 29 th 2019
3 years anniversary next week thanks to Glen Brookes in NY he ONLY prescribes Buprenorphine/ Subutex . He will not prescribe anything else.
I did a straight switch from 20 mg slow release oxycodone and 2 x endone to
2 mg SUBUTEX.
If you check out my profile you will see a lot of information
Buprenorphine /Subutex and the problem with Suboxone.
BUPRENORPHINE hangs onto the least amount of receptors in the brain, we are lucky they just happen to be the right receptors for RLS sufferers.
Buprenorphine is good for depression especially in the over 50 s.
Some switch from methadone due to depression .
Methadone hangs onto a lot more receptors hence the side effects
Buprenorphine has the perfect half life of 24 hours
Methadone is 46 to 60 hours very harsh on the bowels.
Buprenorphine Success emails I receive very few suffer with constipation.
I always recommend people use miralax as recommended by Dr Glen Brooks , my whole life I have had sluggish bowels .
Miralax is perfect for long term use.
However I take 2 magnesium forte nightly and that is mostly adequate for me however I do a lot of long haul international travel which does change things and I use miralax when needed.
When starting Buprenorphine I recommend having some miralax handy just incase most don’t need it.
Also Zofram Just incase nausea most don’t need it.
I recommend not breaking it into tiny pinhead sizes I have tiny little dish and a pill cutter and starting slow. I only took one pinhead on the first night and I did not move slept straight through. It is really easy to tell how to increase as the nights go one because your legs stop moving.
Never tell your doctor that you break it up or take less than the prescribed dose because it is hard as hens teeth to get and if your drop one down the sink on a cruise boat (Yes guilty ) you will short for the month.
Sublingual Buprenorphine 2 mg is the most common dose which is very very low. The highest I have known is 8 mg .
Oxycodone caused me severe memory loss , respiratory depression and terrible stomach cramping and constipation and it did litttle to relieve the RLS it was a nightmare of a drug FOR ME .
If you can get to NY Glen Brooks MD he will take good care of you . Check out my profile for more information .
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