Any member to share.....: I would like... - Restless Legs Syn...

Restless Legs Syndrome

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Any member to share.....

18 Replies

I would like to ask my dear members what was the most efficient prescription you received for treating more or less successfully your RLS for a while. I need to have an idea what works best for most. And if you can add what was the worst, it's even better, Did you hear about Pregabalin with Pramipexole. Let me know when you have a chance. Thanks to all. Alia22

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18 Replies
mantel profile image
mantel

Ropinerol worked well for me for 15 years and I don't in anyway regret taking it . There was not much else out there that helped at the time. After the Ropinerol stopped working I switched to Pregabalin and Tramadol and at the moment this combo is working .

Before I had a name for this condition or that others suffered from it too I noticed that on the days I took Co Proxamol for back pain the strange sensations that made me want to move my legs would be a lot less problematic than on the days I did not take it. This drug was taken off the market in the UK as people were using it to take their own lives and it was easier to over dose on it than on other pain meds. It is a shame as it was a good pain medication and also helped my RLS.

in reply tomantel

Thanks mantel. I do appreciate your input. Alia22

Madlegs1 profile image
Madlegs1

My best is oxycontin (10mg)

And the worst by a kilometre was Amitryptoline.

rkatt profile image
rkatt

Alia the most successful for me has been Tramadol. But for how long it might help I can't say as my doctor won't prescribe it and I've had access to only limited supplies. Pramipexole has worked well for a year but has also delivered some weird experiences, like a slow invisible wave passing through my face and brain. But thank God for the sleep it's made possible.

in reply torkatt

Rkatt, thanks. Pramipexole worked also for me for awhile but now I am suffering with augmentation. Be well !! Alia22

Maureen133 profile image
Maureen133

I take ropinirole.it's the best one I've tried.doesn't get rid of it,but helps.

Bee27 profile image
Bee27

Ropinrole worked perfectly for a few years, but now not so good.

LotteM profile image
LotteM

Only had ropinirol so far (less than a year). Low dose of 0.75mg whereas 2mg appears 'normal'. And have already augmented on it. Also, it helped get decent hours of sleep, but the quality of it was poor - as corroboratedby a sleep registration.

restless_in_usa profile image
restless_in_usa

Ropinerole, specifically at 1mg. More than that and augmentation becomes a problem.

Cajunfilly profile image
Cajunfilly

Ropinerole works for me with the proper dosage MOST of the time. It doesn't if 1) I wait too late--don't take it on schedule; 2) if I drink too much tea in the evening; and 3) if the dosage is too high which makes your symptoms WORSE. Magnesium works well for augmentation. I try not to take pain medication--Hydrocodone or Tramadol--as they can become less effective working with pain with time requiring increased dosage and they can become addictive. I only take one of them when traveling on the road for hours.

Graham3196 profile image
Graham3196

The FODMAP diet and the low chemical diet are the only thing that helped me. I didn't try many of the drugs because I had bad reactions to the first few.

I don't know if that's good or not. It would have been nice to have had 10 or 15 years with good sleep instead of having to live with the fuss of a fairly restrictive diet.

If I had seen this forum before I started the diet I would have continued with the diet because there seem to be many unsatisfactory outcomes from the drugs.

Graham

marsha2306 profile image
marsha2306

I take gabapentin and it works for me.

Retren profile image
Retren

Alia22Aug 1i used dilaudid for over30 years and of course it is an opiate I never had any problems with it.Unfortunately I had a cardiac arrest a while back and am no longer allowed it.After much trial and error am now on tramodil which is a synthetic?opiate a m not sure why one is given and not the other.I have tried everything from brewers yeast to relaxis pad and the usual ads,promising relief which is an abismal failur.not forgetting the soap under the mattress! By far the worst for me was mirapexwhich along with everything else caused a huge weight gain from an 8-to a 16 I do not think any of us can advise as we are all very different and what works for one may not help another. I hope you find this is helpful for you.

Retren profile image
Retren

Beady I hope you are feeling more yourself I know one does not snap back 𝑰𝒎𝒎𝒆𝒅𝒊𝒂𝒕𝒆𝒍𝒚 only time helps we are all thinking of you.Aug1

Joolsg profile image
Joolsg

Ropinirole worked brilliantly for me for over 10 years until the dreaded augmentation set in. I could sleep, eat whatever I liked ( mainly chocolate) and drink lots of red wine!

I now live a boring life of no sugar, gluten, alcohol, processed food ...YAWN.... and spend my life trying to catch up on missed sleep.

I'm now on oxycontin & pregabalin but they don't achieve the same results that the ropinirole did and I can never touch alcohol or chocolate.

I live in hope that those clever scientists can devise a dopamine agonist formulation that does not switch off our own dopamine producing capacity and thus cause augmentation.

Izzybelle22 profile image
Izzybelle22

Hi Alia22. What a great question! Right to the point! I will have to go along with good ole' Joolsg and 'the greatness that is ropinirole.' I have been on ropinirole daily for 15+ years and just within the last year or two, AUGMENTATION has reared its ugly head and the quality of life has spiraled downhill. However, I would do it all again because for me, ropinirole was a lifesaver! It is great to see that so many others here also had a good experience with ropinirole...I'm happy for you and thanks for sharing your experience. And really, regardless "whatever gets you through the night, it's alright." Good luck to all of us in our quest to deal with this hideous neurological disease.

Smiler53 profile image
Smiler53

Hi

Ropinarol until augmentation. High level of Gabapentin - okay but hair thinning and weight gain. Now on Oxycodone - perfect for me so far 5mg am 10mg pm. I have my life back, long may it continue. Good luck. X

cicek profile image
cicek

Roprinorol worked for me at first but eventually I had to up the dose to 4mg. By default in another country I was given Ropinorol XL and found this much better. When I heard about augmentation I decided to cut the dose to 2mg. At the same time asked my GP for Tramadol to help with any effect from withdrawal. She gave this with no problem and it has worked well for the past 2 years. Initially I took 2 x 50mg Tramadol at night but this did not help much so now I take 2 x 50mg Tramadol about 4.00 p.m. and another 2 x 50mg at bedtime. I would like to stop the Roprinorol altogether but as things are working well for me at the moment (apart from the odd breakthrough episode) I don't want to upset the applecart!! Also I have had no particular side effects apart from eating during the night when my symptoms got worse.

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