Hi, I have been very fortunate to live in Los Angles, USA and have had Dr Buchfuhrer as my doctor who prescribes opioid for my RLS. Lately after I have been reading some of our members who have difficulties finding a doctor willing to prescribe opioid for them, I am concerned about finding a doctor who will do so for me if Dr. Buchfuhrer retired. I think this is a very legitimate concern because of the unwillingness of conventional doctors of prescribe any opioids in the USA. Any thought on that? If anyone also shares the same doctor as I do and is located in the USA. Also If anyone can suggest where we can find doctors who can prescribe opioid. When thinking about the possibilities of losing a doctor for opioids, it is a very scary scenario. We, the refractory RLS sufferers can literally commit suicide who depend on opioid to live in sanity. Thanks in advance for the response. By the way, I'd like to share the remedy, Hempland USA Cannabital CBD oil 83.4 MG per serving, I find it very effective for my severe insomnia.
finding a doctor who prescribes opioi... - Restless Legs Syn...
finding a doctor who prescribes opioid for RLS
Hi, halperinchen,
Try:
rls.org/treatment/find-a-he...
which I was directed to from the website: rlsfoundation.org, which is a US site often referred to on these pages. I, too, am a Buchfuhrer patient - when I asked him about the concern regarding his eventual retirement, he replied that he wasn't going anywhere anytime soon. Another poster on this site mentioned that s/he thought that Dr. B had a daughter who practiced medicine and thus might be sympathetic to our cause, but I haven't followed up on that - does anyone else have any info regarding that possibility?
I certainly share your concern about how vulnerable we opioid "prescriptees" are to losing our access to the medicines that make our lives bearable. This War On Drugs has made our lives worse, not better.
Hi, TheDoDahMan, thank you so much for your reply which I find it very, very helpful. I went to the website and find a list of doctors to treat RLS. Do they all prescribe opioid for RLS patients? I hope that they all could prescribe opioids. I do breathe a sigh of relief after seeing your post, I do appreciate it.
I am probably one of the posters you have read who is having a horrible time finding an opioid prescriber. Two doctors have stopped giving it to me. I am counting down my remaining pills in desperation.
One of those doctors was on the RLS.org list but his office is now under scrutiny. I hate to be a downer but that list can be misleading. The docs may or may not prescribe opioids. Some of those doctors do not take new patients. Some do not have a current phone number to even find them. I live in a huge city and am really going through it.
I am the one who mentioned Dr. B's daughter. You can google and see a bio on them both and there is a photo of them together. I just can't remember her exact practice. BUT! She KNOWS his patients and what they go through, for sure.
The good news for you: I am sure Dr. B will always take care of his patients! And by the time he does retire, I am hoping things are going much better for the rest of us when it comes to widespread RLS opioid treatments.
PS-My current doctor told me that the people reviewing his records and breathing down his neck regarding his opioid prescriptions are not even medical professionals!!
PS! Here is more good news: the site does have a list of quality care centers that have been certified by the rls foundation, in the US and also Austria and Switzerland.
I have copied it for you here. So, if the worst happens, you can contact one of these centers. This is what I am working on!
rls.org/treatment/quality-c...
Hi, Teddi, my heart goes out to you reading your posts. How is the situation now? Is the Kratom helping you to alleviate the withdrawal? Are you ok now when running out the Methadone? Hope you will be out of this mess soon. Good bless you!
Thank you Halperinchen! That's so nice. I have been calling all over the country for appts. but can't find one in time. I will call my current doctor this week to insist he prescribe until I can get in somewhere. But I don't know if he will do it, obviously; that is the issue.
I haven't yet tried the Kratom but I probably will soon. Karla from the RLS.org sent me an article on it and seemed to imply that I should not take it due to upcoming urine screenings that I am sure to have. Hmmmm. I don't know what that means exactly since I will be clearly explaining my desperation in buying something I had never heard of and some say is dangerous. Omgosh.
Meanwhile, I have been trying taper down the Methadone. There is a huge part of me that now does not want to be dependent on this drug, even though it works well.
LonePine suggested that I stop my bio-identical creams and dhea spray, go back to the ROP DA drug along with iron at night, and see exactly how dependent I am on the methadone. Until I can get in with Dr. B or someone else.
The night I had the withdrawal from hell on the meth (last Fall, thanks to another doctor), the ROP did not work at all. However, I think she is totally on to something here! It seems to be working?! I never knew before that hormones and also thyroid pills affect RLS. In all these years had never once heard that. How to deal with it all though is such a huge matter.
(Sorry for all the details, but just in case it could help someone.)
Thank you for your concern!
Hi, Teddi, glad to hear you back to know how you are. One good thing is that we belong to this forum where we can get a lot of knowledgeable input and emotional help from each other since we are all in the same boat. Have you heard of an anti platelet medication, dipyridamole, some members have tried it and some found it helpful. You can goole it to know its therapeutic effects and side effects. I wonder if you can get your doctor to prescribe it to try it now and maybe it will help with the symptoms of RLS before you can to see Dr. B in April. I don't think you have difficulties to have it prescribed. This is just what I could suggest and hope it will work. In the meantime anyone here in the forum taking dipyridamole would like share the experiences, it would be nice. Thanks.
Thank you so much, Halperinchen! I don't know anything about that but I will definitely ck it out. Especially now that I am running into trouble with the above regimen that I told you about. I just have no idea what I am doing and I seem to start withdrawal symptoms easily when I try to cut back on the methadone.
I can't seem to taper down on this without professional help. It may be time to try the Kratom, too.
My doctor might be ok with a non-opioid prescription. He never mentioned this drug though so that could be of concern.
Yes, would be great if someone sees this post but otherwise I will post the question fully.
Thanks, again, very much.
Omg, thank god. You are now in good hands. I will stop the arm chair quarter-backing. I really try to stay out of any conversation here that doesn’t deal with iron. I am a two - trick pony. Iron and night-time fasting. I’m hoping to become a 3 trick pony - including morning berberine, but I’m not there yet, it’s all still theoretical, whereas the other two have definitely borne fruit.
Well Teddi, thanks to you I have done a 180. I will never again recommend methadone or buprenorphine. Maybe Suboxone. The withdrawal from these two can be quite bad it appears so unless someone needs to be on an opiate due to a co-morbid illness that will cause severe RLS for the rest of their lives, I’m no longer a proponent. I’m finding that ALOT of members started out with mild RLS symptoms, if any, but then were put on anti-depressants or HRT or had surgery and wound up on DAs that then gave them severe RLS. There’s no reason to have these people then go on lifelong opiates. There’s gotta be another, more viable path, back to baseline.
Once at baseline, or even before, I truly believe that some combination of iron, fasting, Gabapentin or dipyridamole and an emergency med like THC or Kratom or Codeine will do the trick for the vast majority of post-DA rls sufferers. There will always be some that will be well served and will need an opiate, but I’m no longer advocating for it based on your experience.
Teddi, is this not the craziest thing. Here’s a 61 year old man with a 15 year history of RLS due in large part to Statins, then put on DAs which of course took his RLS to full speed. Now the only thing that seems to help is an opiate. I want to scream. I think the brainiacs on here need to pow-wow and come up with a better strategy than lifelong opiates. Here’s his story
5 months ago
RLS i been diagnosed with RLS since 2006. it has took all these years to figure out my RLS is due to medications. starting with my cholesterol med taking at night. this started my RLS then prescribed dopamine meds with hydrocodone. this year when i realized meds causing issues. i stopped taking cholesterol last 3 months. i take 1 clonazepam 1mg- with one ropinirole .5 mg. my restless legs and insomnia going away. ropinole is hardest thing to quit withdraws are crazy. im hoping end of this year free from meds. hope this helps you. good luck
Wow, LonePine. Sigh. So many people suffering!! And another person, just like me, who was/is trying to get to a point of no medication and more natural help!
Yes, we must try to figure out another path! xoxo
First of all, LonePine, you were and are so supremely helpful to me and so many others. I can't thank you enough. Along with the other handful of incredible long time contributors who help me and so many on here!
You and Halperinchen are the only two people who have ever mentioned dipyridamole to me, btw. Is this new?
I still think you are totally on to something with my hormonal therapy, etc. as well as with all your tips and research. I am going to do my best to suss that out professionally with these next appts. and report back to you! I will continue the berberine and nightly iron, too. Tomorrow I can ask my hormone doctor what she advises on that front, although I don't expect her to fully understand my situation, sadly.
Yes, I totally hear you on the desirability of using opioids. On the one hand, that is the only choice for so many. They DO work. But, you get fully body RLS when trying to cut back to see what your baseline is-so counterproductive! And just absolutely as awful or worse than getting off the DA's, and yet so much harder to have securely on hand and available.
There is also the horrible realization that you are addicted! The withdrawal comes swiftly and is pure HELL! You behave like an addicted maniac at the thought of not getting it each month!
And-you have all the doctors and opioid crackdown squads and pharmacies playing hot and cold-making sure that you are indeed in full blown terror of running out.
I am so very glad I am off the DA's. However, I also wish I was off of the methadone! I didn't really want to have this kind of awful trade and I had no idea what was ahead. I thought the methadone would be short term; that I could go back to natural solutions at some point.
One note on THC: I believe it works for RLS only when you smoke it (not ideal for our health). Plus, it is a short term fix and thus not ideal for sleeping. That is what I have learned but perhaps others' have a much better experience and view of it.
One key thing to learn from my experience is that you must go to a QUALITY RLS doctor who completely understands the latest opioid research, or preferably, a well-rounded CLINIC of RLS opioid doctors. You have much more mental security and backup doctors; one lone doctor cannot arbitrarily decide your opioid fate.
xoxo
PS, LonePine: I just had a thought about what you and I were trying these last nights. I wonder if I augmented THAT quickly on the Ropinirole?! Everyone says you augment very quickly when going back on it. It would explain how awful things were for me last night, even when I barely took any ROP but took the full dose of meth. (Last night was quite terrible with awful jerking RLS although no withdrawals.)
And it could explain the prior night, when I went into a full withdrawal with full body RLS after taking the ROP, and then not enough methadone when I added that in.
Your regimen did work, but only for a couple of nights. Hmmmmm-something for us to consider...I was almost dopesick from that high dose of ROP, I swear. Nauseous, rls all over, etc.
Anyway, thanks again and have a great Tuesday.
No I think the methadone was still in your system and it literally blocked the effect of the DAs. As far as I know that’s what it does - blocks the euphoric effect of opiates. Not sure how it does this. The only way I know to block the euphoric effect of opiates is by modulating dopamine. Like any opiate it works via the opioid receptors, and dulls our “perception” of pain and I guess our perception of RLS, but not via the release of dopamine??? So why should methadone withdrawal lead to “symptoms” of RLS as does withdrawal from any opiate. My guess is depleted dopamine or a dysfunctioning transport system due to opiate use. In any case I think your situation occurred because there was still methadone in your body that first time you went without it and tried taking a DA instead to no avail and then on subsequent tries as well. By the same token, the DAs may have mitigated the effectiveness of the DAs. I think if it was tramadol or oxycodone and you ran out and took the DA instead it would work. Or if you suffered through another day or two of no methadone then the DA would work.
Wow, I just totally made that up out of whole cloth. I need to turn off my brain. Sweet dreams. Xx
TeddiJ, I thought the same about your story and your reaction to the ropinirole. Difficult to know for sure, of course. But the methadone blocking the working of the ropinirole is definitely not the case, in the sense that methadone 'works' on quite different receptors (main opioid receptor mu, and less so on kappa and delta) than ropinirole (dopamine receptors D1a and D1b, D2-4).
Personally, I find that my RLS is variable and more so when I am playing around with my medicines, as you very unfortunately have to do now. I noticed your post/reply about a clinic nearby where you spoke with a well-informed nurse. I really hope that turns out to be what you were looking for: knowledgeable people with no reluctance to discuss and if necessary prescribe the updated treatment algorithm published in the Mayo Clinic Proceedings paper of last year.
The study shows that MOR-GalR1 heteromers in the rat VTA are formed upon administration of methadone, ultimately inhibiting the release of dopamine in the VTA/nucleus accumbens pathway. In contrast, MOR-GalR1 heteromers did not alter the ability of morphine and fentanyl to stimulate dopamine release.May 28, 2019
If methadone inhibits the release of dopamine that means (to me) it is going to be a countervailing force to Teddi’s intake of a DA and possibly vice versa and would completely explain the near uselessness of the DAs she took on several different occasions while the methadone was still in her system and then subsequent less than total relief from the 10mg of methadone. I can’t guarantee that this “blocking” effect would then up-regulate her dopamine receptors, as dopamine antagonists tend to do, but I would love to explore the possibility further.
Thank you so much, LotteM! I was thinking that same thing-messing around has certainly put me into a tizzy these last nights! Omgosh-last night bad, as well, even with the full methadone pill. I am assuming it is bad due to taking the ROP after so many months being off the DA's...?! xo
Difficult to say, Teddi. Madlegs would say: "triggers?" I just hope for you it settles and that tonight will be better.
When is you appointment at the local hospital?
Hi and thank you. I am still waiting and counting down the remaining pills. The nurse said she would have someone call me back for an appt. I called again today to check on why they haven't. Typical large hospital red tape, which in large part is why I am in the mess that I am in. Just so hard to get live help! One tip: alway ask to speak to a nurse!
Just kidding. No way I can sleep with this huge mystery looming in my brain. Here’s an excerpt from a 1972 article that is no longer available in full text:
Abstract— This study has shown that methadone shares with phenothiazine and butyro-phenoneneuroleptics several pharmacological and biochemical actions:thus, D,L-methadone causes catalepsy and hypothermia, blocks apomorphine-induced gnawing, increases brain homovanillic acid levels and stimulates brain dopamine synthesis. The dextro isomer of methadone is inactive. α-Methyl-tyrosine potentiates and apomorphine reverses methadone-induced catalepsy. The data suggest that methadone, like butyrophenone and phenothiazine neuroleptics, blocks dopamine receptors in brain.
Ah ha!! Maybe, as I surmised, methadone is a dopamine receptor blocker/antagonizer. That means your Dopamine Agonist intake was probably like whistling in the wind. I really do need to go to sleep. I’m beginning to hallucinate I think. I’m having visions of methadone being an RLS symptom reliever, with the simultaneous ability to up-regulate our dopamine receptors in the long run. Methadone has a fairly long half life and then who knows how long before the “blocked” receptors get their sea legs and start releasing some of that built up dopamine supply. I’m gonna guess three days of hell and if you survive you will be greeted by the sounds of RLS silence, albeit temporarily.
The other question I have for you (and which may prove or disprove my theory) is whether your RLS was relieved by standing and walking? If it was then I tend to think my theory is wrong. If it wasn’t then I tend to think my theory is correct. Blocked receptors are blocked and hence very little release of dopamine no matter what we do. Some of course is released otherwise people on methadone and anti-psychotics would have horribly uncoordinated movements.
Thanks for all the mulling and so sorry for the loss of sleep! I need to review all that you and Lotte have said, but all so helpful. I am not sure if standing and walking relieved it-which is an odd answer, I know. I think I was so miserable I just don't know. It was certainly better than lying in bed, I would think. No help, I know.Will review all this.
Last night was bad yet again, even with the full meth pill and some extra tidbits of it. ugh. I think it is the past nights' ROP rearing its ugly head.
Had the phone appt with my hormone doctor and she is looking into the RLS connection.
She wanted to see the studies so I sent her the Mayo one that Lotte and others alway posts. At least she is willing to read it, unlike ALL of my other doctors!
xo
LonePine-are you ok? I am going through all of your excellent advice before my telephone doc appts. and notice you are "hidden." I do hope all is well and thank you for your incredible help and support!
I had that big appt. at RUSH hospital movement disorders/sleep clinic here in chicago on Friday. I tried to get them to prescribe the dipyridamole and he said he wanted to go with the tried and true Horizant.I even brought in the article from RLS.org. They had heard of it but again-not the expert that Dr. B is.
I am debating whether I should try that. I do not and will not take something where I gain a lot of weight-as I did with pramipexole and ropinirole!
Or, I could start the buprenorphine now, as we discussed in the other post.
Or, i could try to hang on with the kratom but last night i caved and took some ropinirole. geez-it works so well! aargh!! i ruined my streak.
Great news-it looks like I may be able to get a local appt. at a major hospital here. I finally connected with a movement disorders nurse and she actually knew what I was talking about! Completely! They use methadone! Fingers crossed I get the appt. in time, but I am quite relieved after speaking with her. It's just too bad it takes so long to get a live person or any real help from a qualified professional.
This is indeed great news. we all breathe a sign of relief for you. I am sure you will find a good doctor in this hospital for you.
Thank you very much! I will report back as I know the information may help many. Or, a least I hope it helps us!
I left a message for the office months ago and didn’t receive a response. I will try again after the summer. Glad he’s helping some here!
Hi There OXY helps with RLS only sometimes depending how bad it is .Just calms the body and mind for a while but a dangerous drug that changes peoples personalities .Something else that helps is a foot massager that vibrates your legs .
I am currently suffering from running out of my tramadol no fault of mine due to my physician not writing for me as laid out at my last office visit.The sistem these days is atrocious trying to make contact it is almost impossibble four telephone calls then the pharmacy refused to give me a prscription filled as it needed moredays before it could be filled and would not give me a few to tide me over.I am now back to trying to contact my doctor to change the wording to suit the pharmacy.in the mean time this frightful disease has been a torment and have two more days to struggle through to get my prescrption filled.To say I am not pleased is an understatement. The average person thinks this condition is a small annoyance .Unless one has experienced it one can hardl descibe it to convey the downright debilitating condition.I have been spoiled as my spouse was a prominent doctor and was the first to diagnose and treat me and even then it was hit and miss to find something to alleviate the episodes .no one had even heard ofi it and unfortunately it gets worse as one ages. You have my sympathy but why not ask yourdoctor if he has any contacts.Sorry this is so long winded.
Have you tried gabapentin or pregabalin?
Does anyone see a pain specialist? When I first started having symptoms that concerned me, I thought I had a bad case of ankle cracking, like a bad habit, but it woke me up in the middle of the night. Finally he asked me to stop paying attention to my ankles and start paying attention to my my legs and to how they felt. And he said nothing else. That is when I noticed what was going on. I had an appointment with my primary right after and I told her so she looked up meds for it and put me on the dreadful pill. But I also discussed it with my Pain doctor. They think it's because of all of my nerve damage. There is not a limb I don't have nerve damage on. My worse side is my right side and that is my side that has most of the nerve damage on. My pain meds don't make me tired though. I want to clean house, go for walks, oh organize. I'm on Norco. I'm also ADHD so that might have something to do with it. I normally won't take one past 4 or 5 PM. It's hard enough not being able to sleep.
I take a sleeping pill. I also will smoke a high THC level of weed. Right now I can't smoke it where I'm at but in April can go back to that.
antihistamines are a no go for me too. Which sucks. I get sinus infections all the time and allergies where we are from. They affect my RLS in a huge way. Even the new family ones.
Thanks for your reply, I am very sympathetic to your situation and hope you now get your prescription filled and spared from further sufferings. Good luck.
hi, Retren, thanks for your reply, I am very sympathetic to your situation and hope you get your prescription filled and spared from further sufferings.
I am trying to get my self stabilised from the dreadful stuffI was prescrbed it some time ago and had hallucinations so I did not use it. last night I was so desparate I took it again it did not help plus my reaction to t this time was horrible. It alered my balance my eyes were fuzzy and to top it up I fell out of bed and got wedged in and had to get help to get me out. i am still in the throes of an attack and hoping my dooctor will help.
thankyouvfor your sympathy but here I am still dealing with the rls and no medication. it is appalingthat it is so difficult to make contact with ones doctor. I don,t know how I am going to hold on until Sunday when my original prescripion is released.
I’ve been on OxyContin for a long while do to botched ops and cronic pain they do stop the rel which I’ve had since ten ! I also have it in arms wrist as well the problem is that stopping taking them causes withdrawal which is like extramarital r s l which makes me thing that the meds they give to help drug addiction could be of use to that end I’ve been taking V B 12 it doses seam to help the problem with R S L it doesn’t describe itself it’s severe nerve reaction and pain a drug user going cold turkey gets help we need to rename one more item people have certain meds all there life I think there is a case for the use of opioids but need to be monitored you can kill yourselves with paracetamol and drink but there’s no control all we ask for is a life without the fear of the next episode for all the doubters out there I wish could experience it for just one episode especially if your in situations like trave where people think you have st vitis dance take care all you out there your not alone
get on the RLS.ORG website and join Night Walkers Foundaton and get the magazine. You will see there are now 10 clinics/ hospitals that have neuro-musculare doctors that are neurologist sleep doctors that specializes in severe RLS patients that only 10-20mg of methadone fits into the receptors in the brain the from 85-95%. Of course I am just estimating the percentages.
That is what mine is.
The great news is if your like me you don’t really have RLS you have a resting disease. Many RLS suffers they have this too. what is great about it? Anytime you want symptoms to stop, STOP resting! Start exercising and it will go away 100%. The worse your disease is the harder and longer you must exercise to make it go away. Then you can relax and enjoy life for a while. Oddly for me this pain free time varies by a large amount. Many of us take Parkinson drugs that works very well, sometimes for ten years before augmentation. I got a friend Parkinson’s to walk as fast as he could comfortably and it helped his Symptoms for awhile.
There is a new drug out that works as well as methadone for many, but not for me.
A big problems with methadone treatment is
1 if you forget to take them you you into opioid withdrawal and your RLS pain that can go off the chart. Then you get pain from both.
2 Damn opioids gave me horrible constipation.
If you want more info on how I cope with this wicked disease, contact me at 614-309-9645
Yes I know many disease are far worse like ALS and Parkinson’s etc. and I should praise God I don’t have those but my form of RLS is bad enough that before I got help I could not sleep at all for 10 days and the pain I thought was going to kill me so I went to the ER saying I was going to kill myself and luckily they gave me so many anti-depressants that I slept 36 hours, just what this NightWalker needed.
Then I found out about a RLS treatment hospital and got life saving methadone that prevents my damn RLS pain.
That seems like an unusual side effect of an opioid. Maybe switch to hydrocodone instead of oxy?
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