I am in desperate need of advice and reassurance. I managed to come slowly of Ropinerole, but once I’d completely stopped my restless legs were worse than ever and guessing I was suffering augmentation. I have been completely off for 2 weeks , but having literally no sleep during that time ( I experience severe pain, twitching, jerking and twisting) I had to take one last night 0.25mg , which in fact did give me settled sleep for about 6 hours ( oh joy ) My GP will only prescribe codiene , which is not working and I’ve had real problems with Gabapentin. I am speaking to a dr next week as want to try LDN in which he will need to confirm my diagnosis in writing in order for the private chemist to dispense. I am also waiting for an a neurologist app , which could take a while who may be willing to prescribe a more effective opioid .
I the meantime I’m left with this dilemma of nothing supporting me when I was completely off Ropinerole, which was horrible and put me in a dark place where no one should have to go.
The question I am asking , was I right to take one last night in order to settle down the augmentation and symptoms and try again to reduce slowly again.I was originally on 3x 0.25mg of Ropinerole, so have made some progress, just sad I couldn’t sustain the final withdrawal .
Sue asked me to indicate on my profile where I live to best help me ( uk) . I hope you can see that now .
Many thanks .
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Chouchin
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You let your body tell you how to go on reducing the rate of med.
Perfectly ok to step back and let the system readjust. It will take a long time and can't be hurried unless you use strong painkilling opioids. And that brings it's own concerns.
Unfortunately what you are suffering is normal. Yes you can go back on it temporarily until you can get something to help you like LDN or a stronger opioid, although even then you will probably still suffer although not as badly for a few weeks after you stop it. You might also reduce by just a half tablet every 2 weeks as you come off it again.
DesertOasis swears by taking one tablet of iron bisglycinate at night. For her and some that completely stops her RLS for that one night. You might want to try it . If it doesn't work after one night then it won't and you can go back to the every couple of nights routine I advised.
No, Chouchin should take two or more capsules but no more than about 60mg on an empty stomach about two hours before bed. That amount should put a dent in symptoms plus 60 to 120mg of codeine.
I know nothing tells you that. But once it stopped working I contacted the prescriber and at first they wouldn’t tell me it did and finally when I said it’s definitely stopped working they admitted to the fact that you will augment.
Withdrawal from Ropinirole nearly killed me. I know exactly how you feel. I had PTSD for over a year.Please use your phone camera to video what you are experiencing and a written diary..
Show it to your GP.
Withdrawal from dopamine agonists is hellish. The top doctors know this.
Dr Winkelman's recent video.posted on here explains how hellish.
He always says:
Start a replacement medication
Chip slowly away at Ropinirole.
Use an opioid to settle severe withdrawals
In your case, you may have to stay on 0.25mg of Ropinirole until your doctor agrees to help properly. That might mean referral to a sleep or pain clinic/neurologist or agreeing to prescribe a stronger opioid.
If the LDN arrrives, you can start that.
The UK treatment of dopamine agonist withdrawal is barbaric and medieval.
Thanks so much joolsg, sue and maglegs1. I’m so glad to be on this Foram . I hope you can all see this reply of thanks and gratitude. I’m not sure if I’m replying to all of you at once as I can’t figure it out . I’m blaming this and my bad spelling also on nasty Ropinerole 🤣.
Hi Chouchin, I am so sorry to read your post. I am going g through similar with Pramipexole withdrawal so I know exactly how you feel. It is a nightmare. I am glad you found this site, the people on it are absolutely amazing and so knowledgeable. Just hang on in there as I am doing and we will get there. My best wishes to you.
Chouchin, I have been on and off Ropinirole for 25+ years. I am 74 years old now and I have suffered with RLS as long as I can remember. I have developed Neuropathy now and I am taking Gabapentin 600mg 3x a day. I still cut 0.5mg of Ropinirole in half and I have to take it as needed and that’s only 1x a day 99% of the time. It helps calm my legs down and that might be just in my head, I might be immuned to it but if a half of a 0.5mg Ropinirole helps me at my age I am taking it!! Gabapentin helps me too I have taken it less than a year and it seems to help my neuropathy so far and I’m sure it’s helping my RLS too. Best of luck to you I wouldn’t wish RLS on my worst enemy it’s horrible!! People who have never experienced it have no idea how bad it is they act like it’s nothing!!
Hi Chouchin, how much codeine are you taking? Perhaps you need more. As DessertOasis wrote, between 60 mg and 120 mg should help. I’ve found that it helps me completely and I’ve stopped taking Pramipexole, also a dopamine agonist, recently.
I used Tramadol as I weaned myself off it. I slowly decreased the Pramipexole over a period of 9 months and I did not suffer all that much. Before I started I made sure that I had good iron stores.
Also I have been taking magnesium threonate, which is a relatively new kid on the block. It’s supposedly the only magnesium that crosses the blood brain barrier, so perhaps this is helping considerably also.
Lately it didn’t seem to help as the results were the same as if I just stretched for a few minutes and then went back to bed. This would occur every few hours. However last night I tried it again, because of your message, and I slept 6 hours straight after taking it! I’m slowly decreasing the codeine with the aim to be drug free soon 😊. I’ve gone from 120 mg codeine down to 60 mg, each night, and I’m happy to say it’s been relatively easy! Thanks for checking in on me. 😊
Generally speaking, you can never stop the iron, unless you’ve built up your receptors, via something like magnesium or berberine or severe calorie restriction. Or sometimes luck 🧐 I always check in on members of the Ironman Club. Xx
Hello Chouchin, what works for me is when I have an attack I will get out of bed and cold shower my lower legs for 5 to ten minutes, finishing with warm water. When you're in bed and trying to sleep the last thing you want to do is shower as it will wake you up, but it doesn't, just try it. You will feel all that horrible aching, twitching discomfort wash away through your feet. Also some other medication you may be taking could have an effect on RLS. I hope this helps.
I too am going through ropinorole withdrawal. I’ve been working on it for three months now. I’m down from 10 mg daily to 4 mg. while I wait for my neurologist appt. My ferritin level is low but not low enough for my physician to do anything. I am using tramadol to help me get through until my appointment. I am also grateful for this group. It helps knowing you are not alone. We will get through this!
Stay strong and know that you are not alone. So many on this forum know exactly what you are going through and empathize, including myself. Good luck and much love to you. Rivers
I’m not on and HRT or SSRI’s. I take 30mg of codiene obtained from else where as GP has prescribed less 😞. It’s just so frustrating and such a minefield. All above makes good sense, so I will be guided by you all. Thanks all for taking the trouble to respond. I am going again to go more slowly with the last tapering of Ropinerole. ( .25mg 3/4 of .25mg, 1/2 of .25mg , and finally 1/4 of .25mg , then off . Reducing it every 2 weeks). Hopefully by then I will have better opioid option in place as I am having a couple of conversations with GP next week . I will also try iron , find out my Ferritin level and I might swim in the sea if I cant sleep as it just outside to calm my legs . I go in the sea before bed , but i doesn’t last 😞.
I would agree with Madlegs. I personally have had success with Magnesium. I have also been through withdrawal of Pexola. The words "nightmare hell tortuous" can't even explain what it's like!! I am currently on 6 x capsules per day of Tri-Mag which is a combination of Bisglycinate Citrate and Malate. The rule of thumb for taking magnesium as advised by Clive De Carle (very informative and interesting podcast I listened to).......start with one and increase each day once you feel your tummy grumbling or becomes loose then you know you have reached your limit. Reduce by one capsule. I have attached research done by the Blakeley Foundation which I am currently following with a few tweaks/additions!!! I never want to ever go through any withdrawal again!! That why I have gone "au naturale"!blakeleyfoundation.org/rest...
Chouchin, I have had RLS my whole life. I am 71. I have tried only natural remedies since prescription drugs are very toxic and so many side effects.
Here is what has best worded for me:
Medical Marijuana before bed, if it is legal where you are. A small amount and I sleep like a baby and wake up refreshed. It is a natural plant so blends well with your system.
Keto diet because sugar is a trigger for RLS.
Exercise, I do pilates and walk 30 minutes everyday.
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