I'm a 64 year old Austarlian lady who's had RLS for seventeen years. During the past year the drug Pramipexol helped less & less until finally after hours of research I found out about Augmentation. I belong to two RLS Forums on Facebook and it has been such a life saver to have that support from RLS victims who know exactly what I'm going through. Now a month into my detox I can admit that I survived the worst and hardest experience that I've ever had to go through. I want to write a book and submit my experience to a Health Journal or Health Organisation but not quite sure who that would be. I've basically gone four weeks with maybe two hours sleep a day, walking constantly ALL through the night's. I'be been taking Gabapentin & Tramadol now for one week and slowly but surely I'm getting patches of good sleep. I haven't been able to work for six weeks, my head is foggy and out of focus and I feel exhausted, tired and depressed. Every single piece of information, evidence and insight takes us RLS sufferers further along to a better quality of life and better treatments.
My Journey through withdrawal from Do... - Restless Legs Syn...
My Journey through withdrawal from Dopamine Medication.. "The Drug that became my demon". (Augmentation and Me)
We have helped members on here through their detox from their dopamine med. Some didnt even know they were having augmentation until those on here who know all about augmentation advised them. We now have members who have come through it all and are now much better for it. I can take from a few weeks to a few months to start to feel better. It sound like you did your detox cold turkey..? If you did its not a way i would recommend.
My GP had me take half the normal dose for one week then discontinue from then on. I trusted that he knew what he was doing.
Thats why your experience of your detox was so awful for you. No backup med to help with the withdrawal process. Now your are taking the Tramadol it should get better. If you had taken the Tramadol while detoxing yes it would still be hard to do but not like the horrendous time you have had.
TOO FAST
I am also weaning myself of ropinorole. I was on a dose of 2mg and have reduced it by half a mg every 4 days. I took my last tablet last night. It hasn't been easy and I know that once the tablet is out of my system I will still suffer from restless legs on a daily basis. At the moment however, due to augmentation, it starts some time in the afternoon and gets progressively worse as the evening comes on. At what point after stopping ropinirole will I notice an improvement? I don't want to have gone though all this unpleasant withdrawal symptoms for nothing....
Hi Pam, are you taking a backup med like a strong pain med to help with the withdrawals. ? Its usual to take Tramadol if you can and if your doctor will prescribe it. The Tramadol will be helpful and altho you will still feel the withdrawals, it should get some rest. Everyone is different on how long it will be before you see a improvement. Usually the higher the dose then it can take longer and be more brutal coming off of it. A 2mg dose is quite low and i hope that it will be a shorter time rather than a longer time for you to see a improvement. BUT, i would recommend trying to take a strong pain med.
My doctor wouldn't prescribe anything but I had some Tramadol left from an earlier operation that I hadn't needed. I've been taking one tablet in the evening. Now I have finished the Ropinirole should I continue with the Tramadol and if so, how long for? I don't want to become dependent on these too.
I'm waiting for an appointment with the neurologist but it won't be until September at the earliest and I wanted to start with a clean sheet hence the withdrawal from Ropinirole.
Thanks for your help. I sometimes think I'm just blindly going down some route and hoping for the best!
I cant tell you how long you will need to take the Tramadol because as i said everyone is different. I will say that whatever med you take to control your RLS, you become dependent on. Just as someone who is diabetic would have to depend on their med to keep their illness under control.
Is that your plan to not be taking any RLS meds before you see the neuro..? You do know that you will suffer without taking any meds at all for your RLS.
I drove for 5 hours to Perth to pay a Neurology Specialist $360.00 and she was extremely sure that All she wanted me to take for the rest of my life was Dopamine drugs. That was not what I wanted to hear while I was detoxing from Dopamine drugs.
That sounds like that visit was NO good at all. Sorry for you! Like Elisse says, we cannot say how long, because it is different for everyone, and your weaning off period was too fast.
Hi Pam, I needed the tramadol more than ever once I had taken my last pramipexole. I eventually gave up waiting for the withdrawal to calm down and started on the pregabalin as I needed to get back in work. A month later and I am back at work, sleeping well and the pregabalin is taking effect (although still taking one dose of tramadol as slowly building up pregabalin)
I suppose everyone is different though, good luck!
If you have restless legs syndome , you have it. Full stop. It's not like a cold or measles that you get for a while and get over.
Early in life one may get RL from a trigger intermittently, but as one gets older or after a major operation it can become permanent.
Then one will need permanent medication. Effective ones can take a while to get sorted depending on the individual.
If you are finding a low dose of Tramadol working for you - then I would look for a doctor who will prescribe it for you.
Good luck.
Good God. How brave. It is my worst nightmare thinking about having to go through the ropinirole detox. Like you, my RLS augmentation is now so bad I even get it in my back, arms, hands and face. I know only way to deal with it is to come off ropinirole and start from scratch. I know gps here in UK are reluctant to prescribe the narcotic analgesics used in US A to help with withdrawal. Let us know how the new meds are helping the RLS. If you are in a better place I may gather the courage to go through the inevitable hell of coming off. I'm getting 2 x 2 hr shifts of sleep at the moment but it's not nearly enough.
Have you approached your doctor about being prescribed Tramadol..? I live in the UK and so do many of us on here, and i think alot of us use Tramadol for either detox or to use along side another med for RLS. Two meds at lower doses can be a better option than one med on a higher dose. Once you have got through the detox you will feel better and sleep better. 
Thanks Elisse. I took 0.5mg of clonazepam last night with 3mg of ropinirole. Woke up this morning feeling like I'd been heavily sedated. I'll try to reduce ropinirole down to 1.5.mg then will ask gp for tramadol so I can steadily reduce to .5.mg and then stop completely. I'm dreading it. It is the worst symptom of my MS. I can deal with agonising nerve pain but not RLS. It's encouraging to know there's hope, so thanks.
Wean down very very slowly just a bit at the time and do it over weeks and months. You will still feel those withdrawals as soon as you drop even a little bit of the ropinerole. We are all here to support you so when you feel like ranting away, we will listen and encourage you. I hope you get to see your doctor for that Tramadol soon and hope you get it prescribed.
Thanks so much Elisse. My GP is clueless about RLS so what dose of tramadol should I take? Should I take clonazepam & tramadol every night with the ropinirole as I am slowly reducing the dose over say 2-3 months? I've just sent an email to restiffic in the USA about their new foot wrap which is supposed to help...
HI Joolsg, i would start with just one Tramadol to start off with. BUT you really need to discuss it with your doctor. Even tho your GP might be clueless, then you need to educate your GP on needing Tramadol to detox off your dopamine med. Good luck.
Hi Elisse.
I saw my GP 3 weeks ago & she gave me 50mg of Tramadol to take at around 8 & 50 mg just before sleep so that I can reduce ropinirole dose. It has been awful. Each time I reduce dose of ropinirole I suffer horrendous increase in RLS. I am at .25 mg of ropinirole and 2 x 50mg of tramadol. I got 2 hours sleep last night. My MS causes extreme fatigue as well so I'm not in a good place. What dose of tramadol is usual during withdrawal and at what intervals? I know everyone responds differently but need some sleep and some idea of how long it takes before you start to get some relief from the rls. If I completely stop ropinirole in next weeks how long roughly before it's out of your system? I hate, hate this disease.
Hi Joolsg, maybe you are reducing the ropinerole to quickly.? It should be done very slowly. Over months rather than a few weeks. You can ask your doctor for more Tramadol to take if your doctor will agree to that. The dosage for Tramadol is take 2 every fours hrs if needed. But i dont think you will need to take that much. But maybe a couple of more at night. I can only guess at this and you will need to discuss it with your doctor. Your dopamine receptors are objecting to the dopamine being reduced so making your RLS worse. Honestly i dont know how long before its out of your system and back to before augmentation as everyone is different. Dr. Buchfurer says a few weeks to a few months. You can email him from his website rlshelp.org and ask for his advice on how long it takes to be completely free from augmentation.
I am so sorry you are having such a rough time, i have not experienced it myself but have seen others go through this and i know its horrendous.
Keep in touch.
Thanks so much for getting back to me Elisse.I will email Dr Buchfurer for advice and I can then take any recommendations into my GP to see if she will let me have any more Tramadol. Not sure if my MS exacerbated the withdrawal as all my nerves are shot to pieces anyway. I am trying to stay positive but it's difficult when you can't sleep or even rest without the legs and arms River Dancing away. Will go back to .5mg or 1mg a night of the Ropinirole for a few weeks & then reduce more slowly. It's so helpful to have people like you who know what RLS and withdrawal is like to ask for advice. You are all "expert patients" and know more about it than most GP's and quite a few neurologists, including mine who put me on amitryptiline as well as ropinirole and just told me to up the dosage of ropinirole. Totally the wrong advice on both counts. I'll let you know how it goes.
Thanks so much again,
Jools
Hi Elisse,
Just thought I'd update you on the ropinirole withdrawal. I'm now taking .5mg a night and I've upped the tramadol to 3 x 50mg a night, one at 11 before I go to bed, 1 at 1am when the legs wake me up and another at 4am. i've managed an average of 5 hours a night in 3 shifts since starting this regime so that is an enormous improvement and I can function a little bit better in the day. I will gradually reduce dose to zero over next 2 weeks and then see how long it takes for the ropinirole to leave my system and the RLS to calm down a little. Strange but I now get my worst RLS attack at about 3 in the afternoon for about 2-3 hours but at least I can move around or watch TV then to distract myself. Trying to get an appointment with Prof Choudury to monitor ongoing issues in the future. Thanks again for the advise and tips on tramadol.
Jools
Hi Jools, so happy to hear you are doing better with the withdrawals from the ropinerole and you are getting some sleep. Thank you for keeping in touch and letting me know how you have been doing. You will get there and feel so much better, its just a long process when detoxing from a dopamine med.
Slooooooooow and steady is how you have to wean off. That is too fast
Thanks for that info. I will slow it down and start when I get the tramadol. Managed 5 hrs last night in 3 shifts but still exhausted.
Kaye, I, too, took ropinirole after suffering 40 years with RLS. I was at my wits end and getting desperate when my son-in-law, who is a physician, recommended ropinirole. I trusted him (still do, for that matter) and began ropinirole. It worked beautifully for several months, but soon was not working. I have avoided drugs until that point because I know they end their usefulness after some time and the poor patient is left with either more drugs or a life of misery worse than before drugs. But I was desperate as are most sufferers of RLS.
I began looking for natural dopamine, not dopamine from prescription drugs. I found mucuna pruriens, a natural BEAN extract that has been used in India for centuries to control PD. It works for RLS as well. I stopped the ropinirole and began a regimen that I worked out for myself using 98% mucuna powder extract (I order from Powder City--in fact, I just placed another order today). I take a half tsp. of the powder in water (it does not have a taste at all) 15 to 30 minutes before bed and when it takes effect, I sleep for four hours like a baby, no RLS at all. When symptoms begin again, I simply take another half tsp. in water and in a short time I am back asleep for another 4 hours. It's been a blessing from Heaven!
I have been on mucuna 6 months and have suffered NO ill affects at all. No augmentation. Nothing but deep sleep.
Please search out a natural dopamine that you can live with. RLS is from the pit of hell, I think. But with natural things, we can control it.
Mucuna is from a bean, so you will be getting vitamins and minerals like any other bean. Also, lots of fiber! Look to become "regular" every day! (That's a blessing, too.)
Mucuna may not work for everyone. I'm sure it won't be the solution others will embrace, but for me (after 40 years), it has been a God-send!
Thank you SO much. I had read about that and now I'm going to google to see if I can order it . Great news xx
May I ask how many milligrams of Ropinirole you were taking and for how many years? And you just suddenly stopped taking it and started taking the natural dopamine? Do you think, if you were to double your dose at bedtime, you would sleep eight hours without having symptoms start up? Is this natural dopamine addictive like Ropinirole and the other dopamine agonists? The reason I am asking is because I have been researching, trying to find a way to get off this Ropinirole because I experienced Augmentation from it very quickly. I don't have symptoms in my arms and hands or my shoulder, and they are mostly in my feet; but I didn't use to have symptoms everyday until I began the Ropinirole. After that, it was an everyday occurrence after I would take my medication. My symptoms would start up and last for 15-30 minutes and then subside. I have had to increase my dosage from 1 mg to 2 mg and sometimes 3 mg. I asked my neurologist about getting off the drug, but she wants to wean me off by decreasing my dosage by .5 mg at a time for four days, and by another .5 mg at a time for the next four days, etc. From all I have read, that is too fast and is not at all what is recommended by the RLS Foundation. Therefore, I won't follow my doctor's protocol. I have read that when my dosage gets very low, my symptoms will be greatly magnified and that I will not sleep for 10-12 days. I cannot endure that. I think I would go crazy within a couple of days!
I lived I Ausralia for 17 years now I'm in the uk I'm going back March 2007 Perth Western Australia
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