I am female and aged 47. I have been diagnosed with severe RLS for about 20 years now - it is progressively getting worse, as its now in my arms and hands. I currently take Requip (brand name for Ropinorole) I have taken these meds for about 7 years. I am on 4/6mg, I have gone up to 12mg as the medication wasn't affective and the neurologist expressed a huge concern at the dose. He discussed drug saturation etc and suggest I change. I had to reduce Ropinerole in its entirety (which was a nightmare) before he would prescribe Pramipexole, which I had a really bad reaction too. I went back on my Ropinerole because there was no way a can handle this condition without medication. I did go to another neurologist as I was not happy with the previous one. The new neurologist expressed his concern about my condition and referred my for a DAT scan to rule out Parkinson's - fortunately this was ruled out.
I am now continuing to take 6mg of Ropinerole as the symptoms are progressively requiring more medication to keep it at bay. I have also got into serious financial trouble using this drug that my husband has bailed me out on 2 occasions now (compulsive behaviour/shopping) amounting to thousands of pounds. I know the correlation between the addictions and this drug, and the neurologist did express concerns and told my husband to keep and eye on this, so much so, I had to give control of my finances to my husband (my decision) , as it was the only way, I got very good at lying and hiding bought items etc. Unfortunately it feels its the only drug that manages this awful condition. I really need to come off this before I lose my way again. I'm just unsure what to do now? I've not seen a neurologist for about a year now and I am now self medicating my dose and have control over my money, so now spending money I don't have on things I don't need!! I'm so tired. This has become so debilitating as I'm certain it is for everyone on here. I've never written on a forum before so bare with my waffle. I just felt I needed to write down my fears to people who understand my life. Question: My condition is severe, has anyone found any other treatment to combat the symptoms? I have been reading some of the posts - I was wondering if the authors of the posts have it all over their bodies, and if so do your recommendations help? Thank you in anticipation xx
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Boofoo71
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It sounds to me that you have experienced the 2 worst effects of dopamine agonist drugs...augmentation (read the pinned post about this on the main page) and impulsive behaviour.
You are going to need to wean off your medication and return to dopamine agonists in future.
You’ve come to the right place and will get lots of good advice from people who have been in the same situation.
Excellent reply from Lapsedrunner. She only missed out one word in the penultimate phrase: “...and NOT/NEVER return to dopamine agonists in the future.
Hey Lotte - at this moment I can't imagine ever managing without Ropinerole but I have to try and find an alternative without the side effects and the increased in dosage. I'm still reading other posts at present and trying to look into alternatives. Thank you for your comments xx
Oh you poor thing, it's horrible to have that so badly and also have to deal with the side effects. I'm not an expert, but there are some fantastic people on here who can help. What little I know is that it sounds like a huge dose, and you could be suffering from augmention, where the dopamine agonist makes things worse. There is a link somewhere at the top of this site to read about it.
There are other treatment options, like gabapentin and opiods, have you looked at the rls uk site? also book in for a review with your gp. There will be a way through, and you are in the right place to get informed information and advice.
You are suffering the two most common serious side effects of Dopamine Agonists- impulse control and Augmentation. If you are in the USA, there is a class action lawsuit against the manufacturers of Requip and Pramipexole , so make enquiries.
The fact you have increased the dose and that you now have RLS in other body areas are clear signs you have Augmented. Please read the pinned post top right and watch the video by Dr Early.
If you are in the USA, the US RLS foundation has a list of RLS doctors who know how to deal with the condition. If you are near Redwood, California, you could see Dr Buchfuhrer.
Your neurologists were correct to express concern but should be more knowledgeable about Dopamine Agonists.
The maximum dose is now 1mg.
There are many of us who have been badly let down by the ignorance of our doctors and neurologists and have joined this site when our RLS has become unbearable.
I suffered in the same way as you with Augmentation and slowly came off Ropinirole in 2016 with the help of Tramadol. There are two other categories of drugs which can control RLS- opioids and alpha2delta Ligands.
Most of us who have managed to get off dopamine agonists are now taking Opioids and/or Pregabalin or Gabapentin.
It is very, very difficult to get off Ropinirole- you will need to arrange time off work for about 2 weeks during the worst of it. Your doctors can help by prescribing tramadol and if you can get cannabis ( legally or not) it will help sleep at the worst times. Reduce by 0.5mg every 7/10 days and go slowly. With each drop of dose the RLS will worsen, then settle for a while. The last 10/14 days after the last dose is when you need time off as you will get little or no sleep and RLS all over your body constantly. Get rid of all Requip pills at this stage or you will be tempted to take a "hit" of Requip.
Please also get a full iron panel blood test and ensure the actual number for serum ferritin is above 100. If below 100, either take oral ferrous bisglycinate EVERY OTHER night or enquire about iron infusions. Raising serum ferritin should be the first thing your doctors recommend as it helps both RLS and augmentation symptoms.
I wish you strength- getting off Requip will be the best thing you can do to help yourself.
Finally, the RLS Foundation is currently funding a trial in the USA ( in Texas) on the use of Ecopipam to see if it reduces/helps Augmentation so you would be an ideal trial patient.
Thank you so much for your comprehensive reply, and the other responses - I live in the UK. Despite having suffered with this for years I've never heard the term 'augmentation' I will certainly be reading about this on the forum. I will make an appointment with the GP to get a referral to Neurology again, as I definitely need a review, I guess I was just prescribed a repeat prescription without any monitoring of the fact I am increasing my dose which requires more scripts and this has never been questioned. I'll be honest I'm nervous about going to the neurologist as I do know the answer will be to reduced and potentially change medication, and when I last had to reduce completely, I was beside myself, so desperately tired, so frustrated, so angry, so tearful to name just a few emotions.
My husband is so supportive and for that I'm so grateful but he feels so helpless. We had a TV programme in the UK last year which I watched with my husband, praying for 'the cure' and at the end of the program I was devastated with the false hope and a complete abuse of the word 'cure'. I sometimes feel guilty for feeling angry, as I don't have Cancer nor Parkinson's or any other terminal diagnosis, but I really wanted to hear of a breakthrough 'cure' to stop our turmoil on a daily basis.
I will make a point on reading the posts on this forum as its seems to me that so many people are too going through their own hell.
I will also need to chat to my husband as I think he needs control again of my finances to stop any further debt becomes unmanageable.
When I have to stand or move when in company, or out for a meal etc it seems so silly to say I have RLS because people assume its such a non consequential problem, so I always make something else up, like I'm restless or warm or fidgety or I will take another Ropinerol (even though I'm on slow release), what I want to do is scream and shout 'you have no idea how horrible this is' how exhausting, how upsetting, how mentally depressing it is. OK - I'm off my soapbox now. My son has started to show symptoms, not severally thank goodness but struggles when he's sat for a long period, he's 21 so doesn't mind at the moment, but I pray it doesn't get worse. He does have a rare sleep disorder called Parasomnia, and when he went to a sleep specialist who too was a Neurologist, specialising in sleep behavioural disorders, did link sleep disorders with RLS, which was very interesting.
I will keep you updated on my progress - I will make the call to get the ball rolling again with my GP
Likewise. I absolutely know what you’re going through and how horrendous augmented RLS can be.
There is life after Ropinirole- I promise. You will find once you’re through withdrawal that the daytime RLS disappears.
Most neurologists are completely ignorant about Augmentation so print off all the information from this site and, if you can, buy a copy of
‘Clinical Management of RLS “ by Drs Allen, Hening, Buchfuhrer and Lee (second edition).
It is easy to read and you can ask the neurologist to look at the relevant pages. It’s often available second hand on Amazon.
I’m sorry to hear your son has symptoms- definitely get his serum ferritin checked and ensure he increases levels. Experts in the USA will not consider medications until patients have increased ferritin levels first.
If you’re near London, I hear good things about Dr Guy Leschziner at Guys Hospital.
Your husband will be a great help when you are going through withdrawal- mine took time off and stayed up with me all night during the worst of withdrawal when I hadn’t slept for nights and my legs were jerking and spasming every 5 seconds.
There are lots of things that will relieve the sensations temporarily-like very hot baths, compression socks, taking magnesium citrate, weight training legs- I do pilates clam movements with a theraband when the legs play up and it does help.
Spend a few hours reading posts and replies and you’ll see you are not alone- many people are going through the same thing on Ropinirole or pramipexole.
You have to avoid ALL dopamine agonists ( including the Neupro patch) from now on because it is highly likely you would augment quickly on another.
At the RLS UK AGM 2 years ago, one of the doctors speaking explained that dopamine is stored in muscle so maintaining muscle as we age by weight training will help dopamine levels, which in turn helps RLS.
Hey Joolsg - I have just watched a video on Augmentation, it could have been about me. I had no idea this was a thing. I've booked a GP appointment for Monday and will print off some info to give him, albeit they hate us googling our symptoms, but on this occasion I feel that this is exactly what I'm experiencing. When I go on to the RLS-UK website and click Forum it directs me to this forum. So I'm staying on here. Plus the advice I'm reading and other people horrible experiences are somewhat comforting, not that I want people to suffer, but the realisation that I'm not alone.
Thank you again for your comments - just one more question - when you came off Ropinerole how long did it take for you new medication to start to work? Did you start it after your last dose of Ropinerole? What do you use now? ok that's more than one question, sorry xx
It took me 6 weeks to slowly reduce from 3mg of Ropinirole. 10-14 days after the last 0.5mg dose was the worst time.
I used illegal cannabis to give me much needed sleep of 40-60 mins and tramadol 50mg every 4 hours during the night.
I started taking Gabapentin 3 weeks before I was due to take the last dose of Ropinirole, as it takes 3 weeks to build up effectiveness.
However, I found that Gabapentin and tramadol weren’t very helpful but I suspect that was because I had been on Ropinirole for 15 years and my withdrawal symptoms lasted months. DAWS (Dopamine agonist withdrawal Syndrome) is very real. Some people have minimal withdrawal but for others it can last months for RLS to settle.
I stayed on Gabapentin and tramadol for about 2/3 months and then took research papers to my GP to ask for Targinact ( OxyContin and Naloxone) which is licensed for RLS here in England. My GP was awful! She initially refused but I spoke to my MS nurse and my neurologist wrote to my GP telling her to prescribe OxyContin ( cheaper than Targinact).
I started on OxyContin and it worked instantly BUT a week later I developed panic attacks. I am clearly sensitive. I added pregabalin and it stopped the panic attacks and really sedates me so helps sleep.
Many people find pregabalin alone works very well for them. Pregabalin is an alpha2delta ligand, similar to Gabapentin.
All drugs for RLS have side effects so be prepared for this.
You may find that you can manage without medications if you get your serum ferritin above 100.
Start increasing doses of pregabalin slowly- 25-50 mg every 3-5 days up to 300mg.
I take 10mg OxyContin at 9am 10mg at 9pm and 5 mg at 2am. I take up to 100mg pregabalin about an hour before bed as it can cause drowsiness and dizziness. It can also cause increased appetite and water retention but these side effects reduce/ go away after 2/3 months for many.
The more you know about RLS and Augmentation and the drugs to treat the condition, the stronger you will be.
Bear in mind RLS is not taught in medical school here in the UK so doctors and most neurologists have zero knowledge.
I know what you mean about awful GP's. I saw a new doctor for a sinus infection yesterday and while I was there I thought I would pick his brain and ask him how he treats his patients with this dreaded disorder. He prescribes Baclofin or Depakote. The side effects for those drugs are also overwhelming. I just kind of rolled my eyes thinking...yet another family doctor who does not have a clue. He said he never heard of anyone taking opiods for RLS (the only thing that even remotely works for me). I have to limit them to maybe once a month to avoid dependence but after weeks of not sleeping I feel the need to treat myself to an entire nights sleep. Such a rare event. He asked why I stopped Recuip. Had to explain augmentation etc which he was also unaware of. I left there thinking...yet another doctor that knows less than I do about this disorder. He had the nerve to say augmentation is very rare. I quickly corrected him saying with all the research I've done seems that close to 85% of people will experience it at some point. I'm not positive on the exact percentage but I'm fairly certain the numbers are high. I also feel like I pick up every cold, virus or sickness that comes around thinking lack of sleep has my resistance at an all time low. I hate this disease. Its ruining my life on some level knowing I will never totally be free of it and that it supposedly worsens with age.
You need to get off the ropinirole and get on something like tramadol or oxycodone. I take 2 oxycodone 5mg...one around 7pm and another around 1am and do get about 6 -7 hours sleep on good nights. It really works, but I realize most docs will not prescribe.
I'm actually on Oxycodone as I had a serious RTA whilst serving in the Army and my spine and hips were damaged. I've just been discussing with my husband that I seem to be on a lot of drugs and I'm uncertain whether or not they are all contradicting each other. I'm also on Sertraline for PTSD since the crash, as the crash resulted in my medical discharge. I think I also need a medication review. I think I've left it long enough to not highlight my cocktail of drugs to my GP. It's strange, after my injuries and my PTSD, this still doesn't come close to RLS. Thanks for your comments Hoffie xx
OMG!!! I've only been on Sertraline for about 6 months after being on Fluoxetine for a long time, which actually does coincide with my symptoms increasing. I knew about Amitriptyline not going well with it. WOW something I will bring up with my GP on Monday.... thank you so very much - I am shocked!! Thank you again xx
Plus I'm on a high dose too - unbelievable if this is correct, they may not know much about RLS but surely you would assume they would know what drugs will interact in an adverse way xx
Have a look at the rls-uk website for medicines for RLS and especially for those to avoid. An even more comprehensive and reliable list and associated discussion can be found on rlshelp.org (treatment page). Be well prepared when you go see you doctor. Good luck, you will get better.
They don’t know that most anti histamines and anti depressants worsen RLS . As I mentioned most doctors are lacking in basic knowledge about the condition.
Trazodone and Wellbutrin are the only anti depressants that don’t make RLS worse.
Hey Jools - I think the cocktail of drugs I am on after reading the responses have certainly made me concerned - I will definitely be addressing this with my uninformed GP xx
Hi Boofoo71, sorry to hear of the horrendous experience you've had. It seems there are a lot of doctors, even neurologists who are quite ignorant about RLS, how to treat it and to avoid things that trigger it.
I'm glad you're now in the right place coming on this site and getting lots of good information about augmentation, dopamine agonists and alternatives. Some excellent responses!
Just a further point is that I note you have developed an "Impulse Control Disorder" as a result of taking Ropinirole. Unfortunately, this means that when you attempt to wean off Ropinirole you are more likely to suffer from Dopamine Agonist Withdrawal Syndrome (DAWS), so you must be very careful
All being well, when you have managed to withdraw, the Impulse Control Disorder will disappear, but I'm sorry to say, it might not. You may need to ask for help from an addiction specialist. Don't be ashamed to do this if you're struggling.
Thanks Manerva - My eyes have been certainly got wider after reading such great advice - I feel very humbled by the responses and very grateful. I will certainly take onboard your advice re DAWS - this does concern me - here's hoping there's light at the end of this tunnel xx
Hi I.dont have it all over my body YET!.'Lets not put the mockers on it lol I cant advise you about your financial problems though
As regards medication I use Balneum Cream which iworks for me. Its important that I say that should you decide to try it. , you are doing so at you own risk but it works for me
Listen to the people on this site, they are brilliant. They helped and encouraged me getting off Ropinirole. I now take Pregabalin and Tramadol ( I have a good GP) and am much better. It does take a little time but do stay off Ropinirole and any other dopamine. I realise now I was becoming a compulsive shopper as I would keep sending for stuff on the internet, but this has stopped.
Thank you camperqueen - its was strange making the connection to Ropinerole and compulsive behaviour, I could never understand how a tablet could make you act this way. It took a while for me to be honest with my husband, but the relief was palpable. I think he will probably have to take control of my finances again, as I'm starting to get into trouble again. We did discuss it last night after I'd told him about the forum and he was floored at the responses he read. It was also a relief for me that he knew its not just me and its a very serious problem. He's now coming to the GP with me on Monday. He felt angry why I have not been monitored whilst on a drug that can potential make someone bankrupt. xx
As many others have already expressed, you are not alone.
You've already received some outstanding suggestions and recommendations and I'll try not to duplicate. I'm in the U.S. and draw a lot of info from rls.org. Unfortunately, much of their information, publications and webinars require membership ($45 per year for international members). A good source of basic info is Johns Hopkins website on RLS : hopkinsmedicine.org/neurolo...
I can offer 2 pieces of information I haven't seen in replies yet. First, below is a list of "triggers" for RLS drawn from a recent issue of an RLS.org publication. I am particularly sensitive to antihistamines.
COMMON RLS TRIGGERS
•Anything that interferes with the quality or quantity of sleep (How Ironic!)
o Sometimes will affect subsequent night’s RLS – a downward spiral
oUntreated sleep apnea
oI try to keep very regular sleep routines
•Caffeine – watch for hidden sources, e.g. chocolate
Second, I found that when withdrawing from Pramipexole I was helped by adding both Gabapentin and low-dose (3 mg) Naltrexone. I've seen other posts about Naltrexone on this site. You might also want to look at a webinar: ldnresearchtrust.org/dr-leo....
There are lots of treatment alternatives available. Different approaches and/or drugs appear to work for some and not others, so take heart and keep pushing your MD's.
Thank you so very much for all the advice - I will certainly be taking all this info to my neurologist - I had no idea that all this existed! It's hard to believe that such a debilitating condition is treated with such little knowledge. I will try anything - I guess its the process of change that's hard, although I have read a lot on coping mechanisms that I can put in place that will hopefully make it easier than 'hell on earth' I dealt with last time. xx
Has your doc ever suggested Horizant? It is a long-acting form of Gabapentin that really is working for me...but I had to do the nightmare of getting off high doses of Requip ( I'd previously bern on Mirapex and after that augmented, I switched to Requip.. then that augmen6and I was compulsively eating, so went off that gradually and miserably and now after an initial 3 week or so "break in" I've found it works. I'd also previously tried Clonizipam and Lyrica. I did also take 500-600 mg of regular gabapentin while on the Requip....kept that up after the Requip until I started the Horizant.
Hi CoMtWo - thank you for your response - I have heard of Gabapentin.... I'm on a slow release dose of requip now which initially worked better than taking more than the required dose - the trouble is I now pop a few more to take the edge off as I get sooooo tired and just want to sleep. I will certainly be looking into an alternative, as my compulsive behaviour has to be addressed, I'm just so nervous again to withdraw. xx
Horizant is only available to our US friends across the pond. We can’t get it here in UK. Pregabalin is the more easily absorbed alpha2delta ligand here.
You will be overwhelmed by the info but take your time and
It's in my hands and arms now too. What a curse. My dose of mirapex is high, as I've had restless leg for 10 years (1.25). I too struggle with addictive behaviors and personally hate the drug. But the neurologist intimated the only other 2 options have their own side effects and just increased my mirapex dose! Some nights it feels like electricity is surging thru my body. Brick walls everywhere. Wishing us all a cure.
I feel for you. However, what your neurologist suggests is equally appalling. You can't keep increasing the dose anymore. Rather, if you'd decrease the dose( and you will face hell I'm so sorry for that), you will be in a much better position. Most likely, the Restlessness in your arms will go away. People around here are much more knowledgeable then any neurologist or sleep specialist is likely going to be. They will advise you and try to heed to it. It's not easy as I'm discovering.
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Depends which of the 3 will be better for you. 
Changing medication from Ropinirole to Pramipexole. How to make it?
The RLS Foundation changed what they had for medications
medication 
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Medications for RLS recommendations 
