Hello. I've had RLS my whole life. 30 years ago I was put on prozac for depression. My RLS got a bit worse but it wasn't a huge problem until I started hormone replacement. My symptoms became chronic and I started taking Ropinirole without any knowledge of the horrors of this drug. Three years ago, after taking this drug for 13 years I was up to 8 mg each night, sometimes without any relief. At that time I came came across Dr. Buchfruher's name and the word augmentation. I need to mention here that I stopped taking Prozac and hormone replacement a year previous to this.
I live in Los Angeles and went to see Dr. Buchfruher and was told he could get me off of Ropinirole as he has a 97% success rate. Unfortunately, I could not tolerate the high doses of opiates needed to complete his regimen. He kept telling me to take more Methadone and subsequently Oxycodone and after 6 weeks I got very very sick with opioid poisoning. I had to return to Ropinirole although I was down to 4 mg. Over the next few months with iron infusions and sheer tenacity I got down to 1.5mg where I stayed for a year and a half.
In November of 2020 Dr. Buchfruher convinced me to try again. Same results. On January 1, 2021 he told me again to up my dose of Oxycodone and I told him I could not, I was just too sick from it. So back to Ropinirole although down to 1mg. At that time Dr. Buchfruher told me there was nothing else he coud do for me as I fell within his untreatable 3%. Dr. Buchfurher believes in going cold turkey and replacing Ropinirole with opiates. It was not a good idea for me.
Since that day I took it upon myself to find a way to slowly rid myself of Ropinirole on my own. I reduced slowly using a small amount of Oxycode and also tried Kratom. But mostly how I did it was to suffer through unbearable nights. Five hot baths a night and ice packs on my feet. With very, very little sleep. Many suicidal thoughts. (During this time I stubbled across all of you at Health Unlocked. Invaluable!) At one point I went to see a neurologist who had never heard of augmentation and wanted to prescribe a different DA!!!!!
I am happy to report that I am now 48 days free of Ropinirole! I am taking 5 mg of Oxycodone, prescribed by Dr. Buchfurher, which is a dose I can tolerate without a lot of side effects although I still suffer some.
The bad news is I am suffering greatly from DAWS. Severe depression and anxiety. I have put in a request for phsyciatric help. My primary doctor prescibed Wellbutrin but I am reluctant to take it. Ropinirole has given me a fear of drugs. Has anyone tried this? I don't want to take anything that will make my RLS worse or will cause augmentation. I have read on HU that Wellbutrin is not prescribed in the UK, but maybe someone has some advice for me. I have a virtual appointment with Dr. Buchfurher this coming Wednesday and will ask him his thoughts. Thank You
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Birdland
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I can’t provide advice about Wellbutrin and think your plan to run it past Dr B is a good one but I wanted to warmly congratulate you on taking control of your condition and pushing through against enormous odds to get to where you are now. You should be very proud of what you have achieved - not least proving Dr B wrong when he consigned you to the 3%.
I use Kratom as part of my rls management and find it more effective than opioids. I needed a really high dose of oxycontin to control my symptoms and found the side effects intolerable. Dr B does not favour kratom for the very good reason that it is unregulated (how I wish it was regulated) but I wouldn’t discount it solely on that basis. I’m not sure I would have made it through without Kratom and if you’re using a measurement of life v death, a lack of regulations seems less significant.
Thank you for your congratulations! I agree with you about the Kratom. It did help get me through the month of February. But then the nausea from it got to an unbearable point. Also, it started giving me insomnia. It did relieve my RLS symptoms though. I would have continued with it except for side effects.
What an amazing story! It so proves we need very very personalised treatment. I applaud your persistence and am in awe with that. Grom your story it appears once again that it is paramount to listen to your body and take seriously what you experience. I wish all doctors would do the same with their patients experiences, including dr Buchfuhrer. I hope he learns from it. Opiates is definitely not the answers for all problematic RLS. And fine-tuning is an art!
Do take tour time. Read other replies eg a recent one by involuntarydancer. After reducing and stopping ropinirole it took het months to revert to anything resembling 'normal' RLS symptoms. It may well be that your are still dealing, and will for a while, dealing with withdrawal and its aftereffects. Also, you may want to discuss with dr Buchfuhere to 'play' with different opioids to find the one that suits you best and at the lowest possible dose. And start by giving your current one, oxycodon, time to prove itself. Ut not too long (as I usually do, ever remaining hopeful). I sincerely hope you continue to feel better and are able to recuperate from this what must have been a hellish experience. Well done!
Thank you for your encouraging words LotteM.. Yes, each of us have a different experience. Patience seems to be the name of the game. Nothing is quick and easy about RLS and it’s treatments!
All praise to you for your persistence and fortitude in getting off the ropinirole.
I'm so sorry that you are unable to tolerate opioids.
As regards bupropion (called wellbutrin in the US) it seems from some members reporting in this forum that it may actually helps with RLS (a little) rather than making it worse. I'm not sure how good it is for depression though.
Bupropion is available in the UK. However it's only licensed for smoking cessation. Oddly, it's rarely mentioned in this forum that smoking (tobacco) and presumably nicotine products can make RLS worse.
Is it right to assume that people with RLS don't smoke?
I'm sorry if you have DAWS, there is no treatment for this other than symptomatic relief. All being well, this should settle in time, but it will take longer than "normal" withdrawal. A recent statistic I've read suggests that it settles within less than 6 months for 61% of sufferers and just over a year for another 23%.
Thank you Manerva. There are so many triggers to RLS! Tobacco being one. Luckily I’ve never smoked tobacco. I am one that can’t tolerate caffeine, unfortunately. And I don’t drink much alcohol. Not only does RLS rob us of sleep but also some enjoyable things like coffee or tea. So, onwards, plugging forward in this journey. Hopefully my DAWS will subside sooner than later.
Further to what Lotte says re opioids, there is a very useful short webinar by Dr Chris Earley about the different responses experienced by individual patients to different opioids which might be useful for you. It’s on the Johns Hopkins University Hospital website - RLS section. I imagine Dr B will be well familiar with it.
Also, to get you through the early post withdrawal stages, given the susceptibility to nausea and side effects you describe, it may be worth trying a number of different drugs at the same time, each at a low enough dose not to cause nausea but cumulatively working to cover symptoms.
I found that taking dipyridamole for a while (following publication of a study that suggested it could help rls) made a subtle change to my system that seemed to make other treatment options more effective.
DAWS lasted about 6-8 months for me. I had been on 4mg Ropinirole for over 2p years. When I first started Oxycontin I had terrible panic attacks and anxiety ( never had any before) and Dr. B suggested adding pregabalin. That stopped the panic attacks but after 3 years on pregabalin I developed augmentation ( left arm and shoulder) so spent 9 months reducing.I was still getting 2 hours RLS in the evenings and being woken at least twice.
I tried kratom and for 6/7 weeks, the results were miraculous. I slept 7/8 hours for the first time in over 10 years and haf zero RLS. Then I developed severe nausea and terrible panic attacks again. I was devastated as it had been so brilliant.
I'm now back to square one. Withdrawal from kratom took 7-10 days and the panic attacks eventually stopped.
I admire your tenacity and perseverance. I really hope you can find a combination that helps. As your body becomes accustomed to the 5mg Oxycontin, you could try slowly increasing and you may find the nausea settles. I don't have panic attacks on the Oxycontin anymore.
Thanks Joolsg. Sorry to hear you are back to square one. Seems we have to continually juggle treatments and triggers. Glad your DAWS cleared up. I will be patient. I will see what Dr B. Has to say when I speak with him on Wednesday,
What a journey and what strength to stay with it. I have been taking Ropinirole 0.5mg twice for 14 years and thankfully it has treated me well.
What really interested me was HRT. I am 74 and started the menopause at 40 and was prescribed HRT. The experience of that medication haunts me even now. Every evening for two weeks I would get a sensation up my spine and into my arms and legs. I just wanted to get out of my body. I didn’t sleep for two weeks. At the time I also couldn’t understand why this sensation disappeared in the morning. I went to the doctor who said stop the HRT and if you are ok then all is well. It did go away, but 10 years later I developed RLS only in my legs. To this day I cannot take anything that contains Oestrogen as it has the same effect as HRT. No doctors have ever been interested in that story and I just wonder how many women there are like us that have had the HRT/RLS issues.
Wow, amazing that you have been able to stay steady with that low dose of ropinirole for all those years. That’s how we only hope it would work for everyone. How refreshing to hear of a ropinirole success story.
I also started menopause early, at 42. I didn’t try HRT until 10 years later. I am now 68. It changed my life in a good way although I ultimately paid a high price. My RLS symptoms became markedly worse but I didn’t want to stop the HRT. I thought I found my answer in ropinirole but ultimately that is where my problems began. I sold my soul to the devil as I fear my RLS symptoms will never go back to where they were before hrt and ropinirole. When I told dr. Buchfuhrer about this, his response was a simple, yes, hormones can make RLS worse. So we are not imagining this.
I wish you continued success in your RLS journey..
You have got so far..I could not have done that, so keep going…I have had very bad periods but then things to ease off and you never know, they might find both the cause and effective treatment.
So sorry to hear about your long term RLS. Hopefully coming out the other side. Do you do any other things like Acupunture, reflexology, massages or meditation. Anything else which can take you mind off it for a bit, I am sure neurology has something to do with it xx
Thanks Bridall. When my RLS is bad it is impossible to get my mind off of it. It's like if someone was stabbing you, could you get your mind of of that? Eventhough it's not pain, it's a debilitating feeling. I'm happy to say that since I have gotten throught the worst stage of DA augmentation my symptoms have improved greatly. Years ago I tried acupuncture but it didn't help at all. Might have been because my symptoms horrible due to the effects of augmentation. Now I see someone who works on muscle fascia which has been a big help. I tried massage too and it helped. But to be clear, when I was deep in the DA aumentation period nothing helped except more DA. An endless cycle!
Yes I can understand that. Sometimes I can’t get my mind of it to do things that might normally help. I can’t imagine how bad yours has been. Interesting about muscle fascia, I have not heard of that. I have had facial reflexology in the past, not sure if that is similar. I will give that a go again. Anything that helps us relax is a benefit. Wishing you all the best xx
Hello Birdland. Glad to hear you are off of the DA, but so sorry about your DAWS. I started to take Wellbutrin about a 16 months ago when I began to have DAWS from an extremely high dose of a DA. I‘m not really sure if it has helped me or not because I don’t know what it woulD have Been like if I had not started taking the medication. As I see it, suffering from DAWS is like having your brain hijacked. Bursting into tears for no reason whatsoever, at any time and anywhere is not something that I am accustomed to. On some days, the depression and anxiety are just unbearable!! HOWEVER, I think back at how I was feeling a year ago and without a doubt my depression and anxiety have lessened in intensity and duration. I think time is really the answer to DAWS. I so wish you the best of luck!
Thanks for sharing your expirience Merny5. Sound like you can relate to my situation. It is so true that DAWS is debilitating. There are times when the thought of walking into the next room feels like climbing a mountain. Looking back, I think I've has dopamine issues throughout my life due to RLS. The SSRI I took for 25 years masked the dopamine issue. But we all know SSRIs are not a good idea for us. I'll be considering Wellbutrin and make a decision within the next few weeks. In the meantime I'm trying to do things like getting lots of excersise and light and of course as much sleep as possible. I say as possible because sleep is just not something we with RLS can count on.
My husband has severe RLS and at this point after getting of the DAs (because of refractory RLS) even real high doses of Methadone are not working anymore. Lyrica also is not helping. We had traveled to California from Florida to see Dr. Buchfuhrer. At the beginning he was symptom free on Methadone for about 5 years. Now he has an ileostomy with short bowl syndrome and we are never sure how much of the medications absorb.
However, getting to your point of depression and anxiety. My husband had been suffering from depression for years and even received 120 ECTs because antidepressants did not work. 4 year ago we finally found something that works well with no side effects and is non invasive. I is called TMS (Transcranial Magnetic Stimulation). It takes about 30- 40 sessions, a magnet is near your head and pulses on off for about 30 minutes. You can drive yourself because unlike ETC it does not require any drugs or anesthesia. He was greatly helped and is doing much better than he has ever been after either ECTs or on meds. After one course many people are cured. TMS is covered by Medicare and other insurance. It is widely available in the USA under the name Neurostar. I suggest you find out if it is right for you.
Maybe since you are off Prozac, your depression has returned big time.Wellbutrin is a good medication.
Sometime we need to be careful what we do.
My depression med MD, doesn't want me to decrease my prozac, I also take wellbutrin, as I had a sever major depressive several years back. My neurologist respects that, and works with me, and it is a balancing act. Sometimes, I wonder about all those who recommend getting off of DA's, what they do in replacement. It is trully a balancing act for some peace.
That is the truth. It sure is a balancing act! I was desperate to get off ropinirole. It was making a bad situation much worse. My symptoms kept getting worse and there seemed to be no end to the worsening. It was intolerable. Unfortunately there seems to be no ideal solution to RLS. I’m still trying to figure things out. At this point I’m afraid to take anything that may make effect my RLS in a negative way. I’m hoping that when I talk to dr B. on Wednesday he will tell me he thinks Wellbutrin is “safe” to take. I’m making decisions as I go. Thanks for your input.
Thanks for your input. I have some anxiety but mostly depression. Xanax makes me sleepy so I don’t think I could take it during the day. Tomorrow morning I take my first dose of Wellbutrin (bupropion). Hope it goes well.
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