I have been reading lots of stories on here regarding withdrawal and you must all be so very strong to have gone through it. I am wobbling at the moment because I can't get any help other than this forum. I am weaning off Roprinorole and now down to .75mg and due to reduce to .50mg next week (as advised by the good people on here). I am also taking Tramadol but getting no relief at all. It seems a long road ahead which I know has been mentioned. My symptoms are beginning around lunchtime and stop about midnight having been worsening for a few weeks. I have been able to sleep which has helped but last night I woke up after an hour and felt like I had ants crawling all through my body. It was horrendous and I was actually scared! I am dreading going to bed tonight. I don't usually feel sorry for myself but have been in tears today with it all. I will finally speak to the GP on Monday. Can anyone recommend anything that I could ask for to help with withdrawal. I am almost 74 years old and shattered! Sorry if I sound self-pitying I am normally very very strong and positive. Thank you for reading. Good luck to all of you who are going through this.
Does withdrawal always have to be thi... - Restless Legs Syn...
Does withdrawal always have to be this bad?
You absolutely don’t sound weak or self-pitying! You will find lots of understanding and empathy here!! Weaning off DAs seem to be a necessary evil. After 15 years on ropinerole, I finished weaning off this spring. It was incredibly hard (I wish I could tell you otherwise). However the augmentation was also horrible so I knew I just had to get off of it! At the time I didn’t know of medication that could have helped me through the withdrawal. Others here will be able to advise you. Just know that it’s worth the process! By the way, I’m 66 - not much younger than you. You can do this! I’m cheering you on!
Thank you so much. Obviously having a low day as your kind response put a lump in my throat. I know lot of others have done this successfully and they too must have been very strong! I have been on the Roprinerole about 18 years now but reduced from 4mg about two years ago. All up to my GP now!! Not holding out a lot of hope but will change if he doesn't help me. Thank you again.
Congratulations on going from 4 mg down to .75 mg !!! Although it may not seem like it, you are almost there. Hang in there. You can do it. Sorry I don't have any advice as I was lucky and didn't need any help coming off 4 mg but I am sure others on here will have some.
Did you have no withdrawal symptoms at all? I am so pleased for you. What do. you take for relief now because I guess the RLS never goes away.
I was only on the ropinirole for about 9 months. When I got up to 4 mg and asked for more my doctor refused and referred me to a sleep specialist. He advised me to get off ropinirole which I did slowly and was lucky enough not to have any withdrawal symptoms other than continuing my RLS symptoms. I was also lucky enough to have exercises I did which I will give you below which controlled my RLS so I could sleep a few hours before having to get up and do them again. He started me on gabapentin and I am now on 1500 mg and it completely controls my RLS.
When I get restless legs at night I do the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl.... In addition, I walk for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walk. It works every time although I may wake up later at night and have to do again. Actually on the calf stretch I don't hold it for 20 seconds, but instead do the exercise for 20 - 30 times. I also push my heel back before I lean forward. I, also move my leg to each side when it is stretched. On the thigh stretch, I only hold it for a few seconds, but then repeat 6 - 10 times. Hope this helps.
I'm so pleased you have relief. As someone on here said, the withdrawal symptoms are worse the longer the Roprinerole has been taken. In my case 18 years!! Obviously the Gabapentin has helped too. I stand, pace, stretch, kneel and sway for hours every day but I will have a look at the exercises as well. Thank you. I hope you get continued relief.
Hi Cicek. We can so empathise with what you are going through. Like so many of us, we've been through what you're experiencing. It's very hard to wean off DA's. The longer you've been taking them, it seems the harder it is. I was on them for 16 years!
I was prescribed tramadol to help me through the withdrawals but ultimately that wasn't strong enough. When you are getting to the "business end" of withdrawal you will find that your symptoms are pretty horrendous. I just kept saying to myself "this is only temporary, things will get easier". The other thing I did was listen to my favourite music to try and keep myself from going mad! After taking Tramadol, my GP prescribed 10/15mgs of Targinact which is Oxycodone to get me through the last bit. To be honest I even sometimes took some left over Tramadol with the Targinact as I was desperate. (I wouldn't recommend this by the way!) Whilst it didn't stop the symptoms, I think it did help.
Would you GP be prepared to switch you to a stronger opioid whilst you are going through the latter stages of withdrawal?
Unfortunately it's something that the vast majority go through when the dosage reduces. You will get through this. It will be hard, but your symptoms will improve afterwards.
I wish you lots of luck and take care. If you want to vent, please go ahead! Just remember, you are not alone.
Thank you for your kind words. I already take 4 Tramadol daily but that's not helping at all now. I'm going to take 6 today and see if that helps at all. As I replied above, I have been on the Roprinerole about 18 years. As for my GP, I don't know. It's taken me two weeks to even get a telephone appointment. I know some GP's are really awkward when it comes to opioids. If extra Tramadol work then I will ask him for more of that. Did you take Pregabalin or Gabapentin to help at all? I've read a few say that it does help towards the end. Thank you again. I will let you know. Good luck and long may you get relief from this awful syndrome.
I started off by taking gabapentin and then switched to pregabalin. I took those alongside the Targinact. Pregabalin takes around 4 weeks to kick in, but probably won't be of much use whilst you're withdrawing. You never know, you may be one of the lucky ones. In addition, have you had your ferritin levels checked? These need to be at least 100. If not, you might think about supplementing with a gentle iron. There are many pinned posts about which and how to use it.
Would your GP consider giving you a stronger opioid to get you through the withdrawal period? It would only be for the short term if they are fanatical about prescribing an opioid, which of course Tramadol is anyway.
I have had ferritin levels checked but never asked for the results. I do have a very high haemoglobin count and have regular blood tests every 8 weeks for that. My present GP didn't prescribe my Tramadol, that was my last lovely GP where I lived previously. I've never been to this one regarding RLS or much else other than a heart condition for that matter so I'm hoping he doesn't try to make me stop taking it. Thank you for your advice.
Just a thought when I was augmenting from ropinarole nothing helped me, I tried gabapentin and pregabalin and tramadol but when the ropinarole was out of my system I went back on the tramadol and up to now it works fine.
Fingers crossed that works for me.
It is horrendous and worse than getting iff crack cocaibe according to experts.I used cannabis- it gave me 30 mins sleep after 4 solid days and nights of zero sleep and all over body jerks every 10 seconds.
My old GP was appalling. Didn't accept augmentation or withdrawal existed.
All I can say is get hold of cannabis and take tramadol every 4 hours. If you can get a stronger opioid to help, do so.
Once through withdrawal the RLS will be far less intense.
Thanks. I'm a little afraid of taking Cannabis as I have a heart condition too and take a trio of meds for that. Is it safe do you know to take with any meds? Is it the same as CBD oil? Thanks.
If you're taking tramadol, cannabis is less potent. I took cannabis with THC as it helped with sedation/sleep.Your doctor will need to monitor your withdrawals if you have a heart problem so ensure he/she is kept updated and tell them about how stressful withdrawal is. Hopefully they'll prescribe a stronger opioid to stop the constant twitching/ lack of sleep.
Cicek, you may want to consider slowing down your reductions. It will elongate your reduction process, but it may make it somewhat less severe and difficult. And wait with the next reduction until well after increased symptoms due to the precious reduction have settled. A pill cutter (available through your pharmacist, most likely) or a sharp knife help to get the smaller doses.
Meanwhile, hang in there. It is tough. But it will get better. Keep that in mind if you can.
Hi. I do have a pill cutter which is what I have been using. I was advised to reduce every two weeks by .25mg. As I am getting such bad symptoms, and was before commencing reduction, I want to get it done and get some peace. I'be been reducing for around 6 weeks now and next week will be on .50 mg. Hopefully by then will also get something from my GP to help although I am not holding my breath!!!
Please go down VERY SLOWLY from now on. Your body is getting used to New sensations as each step you go down.
It is not liking it.
You need to allow your body to accept the new state of affairs.
Only then go down another step.
This will be much easier on you.
Gabapentin and Lyrica will do nothing to ease the withdrawals, but do need to be taken over the last month of going down, as it can take that long for them to take effect.
I found Clonidine and Valium helpful for the final week.
Good luck.
Thank you. I am reducing by 0.25mg two weekly. Next week I am down to 0.50mg and speak to my GP on Monday. I'm hoping I get something positive from him but without sounding pessimistic, I doubt he will have any knowledge of RLS. I do have lots of printed information for him if he is happy to read it. All GP's only need to read the NICE guidelines and the NHS page regarding RLS to know what should be prescribed. Fingers crossed.
I'm so sorry to hear, it truly sounds horrendous. Is there any kind of meditation / mind over matter stuff that can help? I'm worried as I know I have to get my mum off both the one you are on and Mirapex :-(. She's 77. Anyway, good luck - you are making progress, that's the important thing. By the way - who was the person writing his 8 or 9 top tips to help - might be worth noting those down and deploying them when it gets bad??
Hi. Hope your mum gets the treatment she needs. It's a horrid syndrome. I am making progress in reducing the meds but the symptoms are awful. Don't remember seeing a post on 8 or 9 top tips - sorry. Was this regarding medication? Thank.
Will see if I can find them!!
PS Cicek - wondered if you had any Turkish connection? I live in Turkey and it means flower 
Cicek means flower I mean x
Yes in a way I do. I know it means flower that's why I chose it. We had property in TRNC for about 12 years and spent a lot of time there. Turkey itself is a beautiful country.
aha - wondered if there was a link
I replaced Ropinirole with Targinact - what are you taking?
I am taking Roprinerole until I have finished weaning off, and Tramadol. Did you get Targinact from your GP easily? I assume it works for you.
We are all having so many different symptoms trying to wean off medication and I too am so grateful for the help I've received on this forum. May I suggest trying CBD oil at night? I am only in my first week of using this (to aid sleep) and for me about 5 drops under the tongue before bed seems about right. Last night I only had 4 drops and haven't had a very good night. The night before I had 5 drops (having 3 the previous night and little relief). It does have a rather unpleasant hemp taste but I can cope with that for a few seconds until I've cleaned my tongue!!
I was on Requip for years. It was the first medicine I was prescribed when I first got diagnosed with RLS. It worked great until augmentation set in. I weaned myself off of it by using kratom. It worked wonders!! I didn't have ANY withdrawal symptoms as I was weaning myself off of the Requip. And the kratom got rid of my RLS symptoms at the same time. You don't need a prescription for it. I bought it online. There is a certain kind/strain that is better for RLS than the other kinds. I couldn't try marijuana like a lot of people on here recommend because it is illegal where I live. I even tried CBD oil, but it was worthless to me, and I was told it doesn't really work for RLS unless it has THC in it (marijuana). Please try kratom. It is soooo worth it. I truly believe I never would have been able to get off of Requip without it. Good luck!!
Thank you. I get really worried about anything different as I believe the GP should help. Even more worried that I don't know what I'm doing with other drugs. How would I know I was buying the right thing? Is it safe with heart medications?
Hi Cicel, I empathize with you. I am going through withdrawals from Pramipexole that I took for 12 years. I have been tampering off this med since last year. My legs woke me up last night at 11 and I took another 300mg of Gabapentin. It got me back to sleep after some stretches. Hang in there!
Morning. I am pleased you have done so well. Obviously the Gabapentin has worked/is working for you. Did you have much weight gain with it? Tomorrow I have to ask my GP for Gabapentin or Pregabalin and I am very worried about the stories I've heard regarding weight from the Gabapentin. Thank you.
No, did not gain much weight. It does make me hungrier though. Need to exercise more.
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