life after augmentation

[Bean49]

Hi, after augmentation on ropinorol I got my doctor to prescribe a slow changeover to gabapentin. I had already gone down from four 500 mcg ropinorol to 3. He suggested reducing the ropinorol at 1 at week and adding 300mg gabapentin at 1 a day, however I decided to add and subtract at the same pace. So far I am still on week 1 (2 ropinorol, 1 gabapentin) and my legs have been better than they've been for years. However, I am still getting some form of headache every day though not too severe, I can only think this is related somehow. I will let you now how it progresses.

[Hidden]

Great to hear you're doing so well and hope it continues.

I have come across others who say they get headaches withdrawing from a dopamine agonist. In which case paracetamol and codeine may help and in addition this could help reduce withdrawal effects.

I believe cutting ropinirole in steps of 0.5mg (=500mcg) can work, but you may be cutting it too fast. Withdrawal effects are less likely to occur the slower you do it. In addition cutting from 1mg to 0.5mg is worse than cutting from 1.5mg to 1 mg and cutting from 0.5mg to nothing is even worse for withdrawal effects. All in all cutting once a week is possibly too fast. 3 - 4 weeks is better. I have also read that withdrawal ought to be over no less than 3 months. The lower the dose gets, the slower you might need to do it.

I withdrew from my dopamine agonist over ten months.

As regards the gabapentin, it takes about 3 weeks for it to become fully effective. If you've been taking it less than 3 weeks and already benefitting from it, it does suggest it's working for you. However it is said that it won't prevent withdrawal effects when you cease the ropinirole altogether. So be aware of that.

Furthermore, when you stop the ropinirole, except for the gabapentin, your RLS may return to how it was before you started the ropinirole. OR, if you've been taking it for years and suffered augmentation, it may be worse as the ropinirole may have caused irreversible damage.

In which case, you will need an effective dose of gabapentin. I see you are increasing it, but the minimum effective dose is about 900mg. You won't really know until at least 2 weeks after stopping the ropinirole. It may be a good idea then to be on 900mg before you stop. If it turns out to be more than necessary you can reduce it. I find it easier to reduce gabapentin than reduce an agonist.

Iike you I started taking gabapentin before I stopped the dopamine agonist, in fact a year! That's because I also need it for nerve pain.

Something I hope you can look forward to, but as I reduced the agonist my augmentation disappeared and sleep improved. Now my RLS hardly bothers me at all.

I was lucky I had no noticeable withdrawal effects, but I believe that was mainly due to withdrawing so slowly.

Let us know how you're getting on

[Bean49 in reply to Hidden]

Thank you, I will work out a strategy to take it more slowly, as I believe the doctor didn't have the timing right at all . First off he was suggesting I did it all in three days, which I have rejected, but on listening to your advice I will take it much slower. The headaches seem to be getting slightly better and although I am revisiting slight tingling and twitching, the full RLS has been much better.

I find knitting helps whenever my legs start but I'm getting repetitive stress syndrome now I've done so much over the years! My grandchildren have benefited from that though haha ! I'll keep you updated on my success rate.....

[Need-Sleep]

Yes, seemed each evening my head felt like it was being squeezed. My emotions were great for a few days, then very low lows. Keep it up! I’m 3 weeks DA free

[Joolsg]

Well done. Take it slowly. I found my RLS improved when I dropped from 4mg to 2mg and that encouraged me to speed up. Bad mistake. I had a terrible withdrawal as a result. Experts now advise a minimum of 3 months, up to a year to get off Ropinirole.

Go slowly and hopefully you won’t suffer too much.

Brilliant that you’re doing so well.

[Mulberry100]

With great advice from Manerva and others I came off Rotigotine patches. I was on 3 mg and experiencing augmentation, I reduced from 3 to 2 before going to my GP because I felt that, over the years no,doctor had really taken RLS seriously and thought I must get Just get on with it alone. However, things got really, really bad and I couldn’t function at any level. I had followed this forum and Gabapentin kept coming up as a good alternative and we had registered at a new GP practice so I went armed with all the information I had gathered,. To my joy and relief my new lady doctor was incredibly sympathetic and listened to and comforted me through my tears and frustration. She said that she felt I knew more about RLS than she did and we came up with a plan , which was to reduce the patches starting with 300 mg of Gabapentin and as I reduced the Rotigotine patches I increased the Gabapentin by 100 mg every 5-6days, up to 1800 mg, if I felt I needed to. Finally I was taking 600 at 5, 7 & 9 pm. It certainly wasn’t an easy ride and at 1800 I was feeling pretty strange and unwell and not convinced things were a lot better., but one evening I fell asleep on the sofa and forgot to take the final 600, it was my best night’s sleep in years! I have stuck with 1200 and very rarely have any trouble with RLS and, on the very rare occasions that I do, it is brief with none of the intensity of the past. What I am trying to explain is that, it took a long time, sometimes incredibly difficult and, I believe there is a real need to get the dose correct for your individual needs. 1800 was definitely causing some of the symptoms I was trying to rid myself of but I am now pretty much RLS free, thanks to this site, my GP and with special thanks to Manerva, who is a font of knowledge on this horrible syndrome. Keep at it, it was so worth going through the tough times to get to where I am now- wishing you the best of luck.

[Hidden in reply to Mulberry100]

Great to hear you had a good doctor.

Going up to 1800mg was probably a bit of a mistake. An effective dose can be as little as 900mg. You can't really say until you've completely withdrawn from the DA.

Taking too much shouldn't make RLS symptoms worse, but side effects will be more significant.

I only take 600mg.

I usually say if you need more than 1200mg it might be better switching to pregabalin

[FLAME43]

promising, go well and hope the headache passes