Hi. New here. I have been suffering with restless legs for years but it has got progressively worse in the last two years. I am taking 0.50mg of ropinerole but have augmentation so want to come off it. (Not easy I know)
Any how, I have tried pregabalin previously before I started the Ropinerole but it made me feel awful. Bad stomach cramps and awful bloating and fluid retention.
I have had iron levels checked and all ok it seems.
Any advice as to what I could do next?? I can’t manage on no drugs as RLS is too bad to manage.
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ToJa2
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Hi Toja, pregabalin side effects do settle after a few months so it depends how intolerable they were for you. I took it for 6 years but in the first 3 months had swollen legs, fluid retention, drastically increased appetite and dizziness, double vision. All settled after 2 to 3 months.If they were intolerable, you could ask for a low dose opioid like Oxycontin which has been licensed for RLS as Targinact ( Oxycontin combined with naloxone).
As Madlegs suggests, read all the pinned posts and slowly reduce the ropinirole by 0.125 every 3 to 4 weeks. Ensure serum ferritin is above 100 as that can help both the RLS and the augmentation. Don't let the GP put you on another dopamine agonist as you'll quickly augment again.
Thank you. It’s depressing that there doesn’t send to be many options. I have a appointment with the neurologist on Friday so I wanted to be a bit armed with some info. Being on Ropinerole scares me that I’m so dependent on it. I want to get off as soon as I can.
There are options. Whatever you do, reduce the ropinirole as slowly as possible and bear in mind most UK neurologists don't know much about RLS either as they have never been taught it on the syllabus and unless they have a special interest in RLS, they will not be up to date. ( I've actually just had that confirmed by my neurologist at King's college hospital). If pregabalin side effects are intolerable, oxycontin may be your next option.
Bear in mind that raising serum ferritin helps the majority of RLS patients so the odds are in your favour. If your serum ferritin levels are under 100, you could ask for an IV infusion of Injectafer which raises levels very quickly I wrote directly to the haematology department at St. Georges and received an infusion. Sadly, I'm in the 20% for whom it doesn't work. While waiting to see if you can get an IV infusion, you can take oral iron in the form of ferrous bisglycinate at night, best to take EVERY OTHER NIGHT. Some people find that raising ferritin levels means they don't need meds.
Most neurologists are unaware of the link with low brain iron and the dopamine system .
Raising ferritin sadly doesn't help with the difficult withdrawal symptoms.I had a very, very difficult withdrawal. No sleep for 4 whole days and nights and constant body jerks every 10 seconds. I used tramadol every 4 hours and illegal cannabis spliffs. They were the only thing that helped me. However, I had been on 4mg for 16 years. I know a few people who have had a much easier withdrawal.
For the vast majority it will be very traumatic so make sure you have 2 weeks clear in your diary and someone around to help ( you are so exhausted you can fall badly). Don't bother going to A&E as they haven't got a clue. They aren't familiar with dopamine agonists, augmentation or withdrawal. Some poor man went to Slough A&E desperate for help and they restrained him!!! The worst possible thing you can do.
Opioids can help alleviate withdrawal.
It would seem that those who start replacement meds in advance of withdrawal fare better as the replacement drug is fully effective by the time they drop the last dose of Ropinirole.
Your neurologist may be unaware how difficult withdrawal can be. It can be worse than getting off heroin so ask the neurologist for detailed advice on how he/she will ensure you have a safe, scheduled withdrawal and a prescription for meds to take during withdrawal and to replace the Ropinirole. But don't let them give you Pramipexole or Rotigitone or carbolevodopa as that'll just prolong the suffering.
Discuss Alpha2Delta ligands ( pregabalin and gabapentin) and low dose opioids ( Oxycontin, Buprenorphine). The Alpha2Delta ligands take 4 weeks to be fully effective.
All have side effects but your body adjusts to them within a few weeks.
I started with Gabapentin, which had side effects for a couple weeks, but they were bad, mostly brain fog and anxiety. Then I moved to pregabalin. I found it easier, because I don't take it until later in the evening 1-2 hours before bedtime, so the side effects were less notable. I hope you find your relief quickly.
Hi, Toja2- Even though: "I can’t manage on no drugs as RLS is too bad to manage.", I would like to take some risks and suggest, If I may, something you could do and that eventually could change your life for the better, as happened with me and so many others in my EFT (and other Energy Psycology and medicine techniques) communities, which I am not promoting in any way; just to let you know about their existences;
_ in spite of noticing a strong bias, here in the Forum, toward treat RLS only with medication, diet control, ferritine boost and so forth, leaving pretty much no room for alternative treatments, I could not give up for while to suggest such science-based possibilities;
_ that because, me and many others would not be exceptions, and also because, paradoxically, the stronger the RLS the easier to be battle! In my case, for instance, the 4;00 am crisis is the strongest/craziest, well defined one, yet the easiest to be battle within some maximum 15 minutes;
_ such apparent paradox is also found for pain and PSTD relieves (see, for instance, anedoctic cases in the Dawson Church's Tapping Manual), cancer cure/remission (see, for instance, Bill Bengston's book "the energy cure", in which you could notice the strongest the lab-provoked cancer/ulcerations, the easiest the cure, actually, a Bill Bengstons's trademark currently);
_ I have been aplying successufully EFT and two other energy techniques, either to myself or surrogating, based on what I have been learning by myself and after some two years of studies and researches (keep on going daily);
_ however, I think I know not everybody would have time, willing and disposition to spend on studying those techniques. In such cases, I could eventually suggest going to this Practitioners List, including 100's of confident faces in USA, Australia, Europe, Canada (why so few in UK? I think I know what happens in this wonderful land of science :)), which can be found in the EFTUniverse website eftuniverse.com/eftu-practi...;
_ spend sometime on chatting with those confident faces/people and see whether they could eventually do for you.
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