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Restless Legs Syndrome
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Ropinorole withdrawal

Hi

I have had severe RLS for a few years now and have tried most meds.

The ropinorole has augamented so I’m currently reducing it and taking pragabalin with the help of tramadol.

However we are in night 2 with no sleep the tramodol isn’t helping at all and I can’t cope with the RLS.

had anybody experienced this and can reassure me it will get better?

Thank you

Lucy x

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Hello Lucyjane29,

I came off the Neupro patch (a DA in the same class as Ropinorole) after having been on a succession of all 3 DAs for several years. The withdrawal took 4 months. Like you I thought the Pregablin and Tramadol wasn’t working. I’m afraid you just have to be patient but you’ll get there.

Good luck’ to you.

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Hi

Grrrrr it’s the worst thing ever!!!

I dread bed time and last night I was awake all night.

Got the doctors today so will keep you all posted x

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Thank you I know I need to persevere but it’s horrendous!!

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According to other members of this forum, withdrawal can take between 1 month and a year, so don’t give up. Each day is a day nearer to getting clear.

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There is light at the end of the tunnel hey...

Thank you I will keep you all updated with my progress

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Lucyjane, Tramadol causes augmentation, so switch to something else.

I think the Tramadol-augmentation thing is unknown to many practitioners, as it is the only opioid that does this, so many are taking it.

I will try to find a source for you.

Ask your doctor if, during the switchover, you may use methadone. It is specific for RLS, and it works. It comes with very little euphoria, and it is long-acting and a very 'clean' drug with no hangover.

It will not necessarily help with sleep, but your wakeful hours will be just fine.

So you may need something for insomnia. Doctors are wary of combining a benzodiazepine with an opioid, depending upon the status of your general health, but it can be done.

Alternatively, ask if they know anything about adenosine, the lack of which may be causing insomnia, whether they have read Serge Ferre's journal articles, and if you may try Persantin in a low dose.

No harm in asking.

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Lucy are you in the UK ? If so you wont get Methadone no chance whatsoever .X

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Hi

Yes I’m the uk!!

The problem is my doctor doesn’t understand like my neurologist does and it’s hard to get to see him.

Lucy

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Thank you x

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Sadly, methadone is not prescribed here in the UK but OxyContin is -if you put up a fight with the doctors.

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Hello Lucy

I really feel for you. Withdrawal from ropinirole is the worst thing I have ever been through. My understanding is the Pregabalin won’t help until you are through the withdrawal.

You say you are on day 2 and the Tramadol isn’t helping? What is your ropinirole dose and how much have you reduced it by? How much Tramadol are you taking?

You need to reduce the Ropinirole really slowly and each decrease for about a week before you decrease again. I was prescribed 100mg Tramadol, I took one early evening and another in the night. It did take the edge off things but believe me I was up most nights, all night. I remember trying to sleep standing up leaning against a chest of drawers.

Lots of people on here have managed to get through it. If you search on here you will find their stories. The withdrawal effects can last a few weeks after your last Ropinirole so don’t be surprised if you don’t notice any effect from the Pregabalin for a while.

In the meantime do whatever you can and sleep whenever you can to get through it. Hot baths, stretching, anything that helps.

Get your iron checked. Your ferrous levels need to be above 100 for RLS. Don’t accept a ‘normal’ result from your doctor, normal for normal people is much lower. RLS sufferers need it to be much higher. Iron supplements can then sometimes help. But don’t take these before a test and speaking to your doctor.

Keep at it, hopefully you have support from family. You may need to take a few days off work. Believe me, it is worth it in the end. You will feel so much better when you are through it.

Keep posting and asking questions and letting us know how you are.

Good luck, Pam

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Thank you Pam I private messaged you x

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I know what you are going through and believe me I understand, I am taking 4 pramixole 2 in the morning and 2 at night and 1 pregabalin at night. Right seems to be working, for how long God only knows. My prayers are with you and hope that you get better.

Carmen

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Thank you xx

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Lucy, I know you sent me a private message and I’ve replied but I hope you don’t mind if I make a bit of it public to get opinions from those people who I really value.

Lucy is on 4mg slow release and another 2mg of ordinary ropinirole that she takes in the evening. Way too high.

She has stopped the slow release all at once and now just takes the 2mg at night. I’ve advised her this is far to quick - my experience was 0.25mg at a time and each reduction a few days to a week. But I have no experience of slow release - I suppose you still need to reduce it very slowly?

Anybody out there who can back me up or put me right?

Thanks and we’re with you Lucy

Pam

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Awe thank you Pam x

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Hi Pam

So I’ve just had a telephone app with my doctor and he has prescribed be 30mg codine to help me at night rather then the tramadol??

I am nervous about bed time already and today feel wiped out!!

I am going to take 4mg of ropinorole today and do that for a week then reduce to 3 etc etc.

I really appreciate this support x

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Hi Lucy

That’s still far too quick. I can’t speak about codeine but I don’t think it’s as strong as Tramadol and you won’t feel the benefit of the Tramadol when you are reducing too quickly.

1/4 to a 1/2mg a week. You really really can’t rush this. 2mg is far too much and then to do it by 1mg a week is too fast. I can’t emphasise this enough. Your nights will still be bad but hopefully more bearable.

By all means try codeine instead of Tramadol but do your ropinirole reduction much more slowly. Sorry if I sound like a stuck record!!!

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Hi Pam

No no no I really appreciate your support thank You :)

Ok so today if I take the 4mg pro Long release and 1mg of normal for a week then 4mg pro Long and 0.5 for a week and see how I go? What do you think?

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That’s still a drop of 1mg. I’m not sure how extended release work - I’m hoping someone else will advise but in the meantime I would take your 4mg extended release and then 1.5mg tonight for a week and then reduce by another 0.5 the following week.

Slow, slow, slow!!!

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Thank you and all the best to you too x

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Try the biggest size tubigrip from chemist as compression hosiery .

I wear at night on my legs as I have restless symptoms up to knees only

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Lucy, I am in the middle of doing what you are trying to do as well. I was on 4 mg of extended release ropinirole and was augmenting. I found a Doctor who studied under Dr. Early, one of the best known doctors for RLS. He has had me reducing the ropinirole by .5 mg every 7 to 10 days. He also has me on gabapentin 300 mg each night. In addition, I have been taking Hemp Oil, 375 mg of Curcumin and vitamin D every morning. My withdrawal symptoms have been almost non existent and I’m sleeping 6-7 hrs per night. I’m down to 2mg of ropinirole and will soon drop to 1.5 mg. I don’t know if my situation is just unique or if the supplements are a key to managing the withdrawl symptoms. Anyway, I thought I would share my experience with you. I’m so sorry you’re suffering coming off the ropinirole. It’s a horrible drug! Hang in though and as many others have mentioned, you will get through this.

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Hi, ah it’s so good (but not too) to hear I’m not the only one!!

Thank you so much for sharing I will get some vitamin d ASAP and I have tried the hemp oil I had 200mg full spectrum. I think I need to reduce the ropinorole more slowly and appreciate it will be a long process.

I’m only on 50mg if pragabalin per day at the mo.

Thank you so much and all the best to you it’s a horrible co dition eh :(

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Hi Lucy Jane,

I agree with everything Pam has said but in addition you need your GP to switch the 4mg extended release to 8 x .5 mg normal release so that you can reduce very slowly as cnote advises above.

You stopped 4mg immediately and that has caused severe withdrawal.

Get the normal .5mg (or1mg) and take your 6mg at night as normal and then reduce by .5mg every 7-10 days.

You may notice some withdrawal symptoms with each reduction but they will settle and then reoccur at the next reduction.

Codeine will help ( although I used tramadol just to get through withdrawal) and you can also ask for zolpidem sleeping pills.

The pregabalin wills not help until about 2 weeks after the last dose of Ropinirole. Increase pregabalin slowly up to 150 mg.

You are not alone- lots of us have been through withdrawal and every day there is at least one person on here going through it.

It is very difficult and you will have days without sleep but you will get through it and you’ll be so glad to be off Ropinirole.

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Hi

Thank you so much for taking the time to reply to me It really does help to know I’m not alone at this miserable time in my life :(

I have just had the school hols off work so I am back to full time 3rd August so was hoping things would have improved by then 😬

I’m so on your advice I am going to bin all the 4mg prolonged release and just use the 1mg ones I will take 5.5 today over a period of time and then each week reduce by 0.5. I will give the codine ago tonight and fingers crossed I get some sleep.

I’ll keep you all posted thank you all again x

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And don’t rule out the Tramadol now you are doing a proper reduction 😊

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I really feel for you and know what you’re going through. I’m also angry your GP gave you 6mg when the maximum on the medication leaflet clearly says 4 mg and the new maximum is 1mg.

Try magnesium citrate as well but take it 3 hours apart from the pregabalin ( they interact otherwise).

Wishing you strength- you will get through it and the RLS will settle.

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Lucy just out of interest, what other meds are you on, including OTC meds like anti histamines?

Most anti depressants and anti histamines can cause RLS and you seem young to have suddenly developed RLS.

It can happen during pregnancy and then never go or be caused by surgery. Or you may have had it for years?

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I will private message you :) x

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Thanks Jools

I needed someone to clarify the slow release. That makes perfect sense as you always do!

Lucy - everything Jools says is spot on.

You have a plan - good luck!

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Aww, thanks Pam.

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I can’t thank you girls enough thank you for helping me 😘

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mayoclinicproceedings.org/a...

This can be printed out as a pdf. It may reassure your practitioner that opioids are a good choice of medication for RLS, even id methadone is disallowed

The article is very up-to-date, and the authors are all highly-respected specialists in the field.

You cannot really argue with sleep specialist neurologists from places like Johns Hopkins and Stanford.

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I too had gotten into augmentation with ropinorole. I found two supplements that helped me back off. One was Quiet Legs i ordered from the UK and they actually work with you and give you a step down program to reduce the ropinorole which was very successful then I switched to a domestic supplement called Seratame and I am now down to 1 1/2 mg of the med and doing very well, only have flareups once or twice a week as opposed to every night. I also incorporate cranial sacral bodywork and that has really reduced the flareups.

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Oh that’s Interesting I will look in to that, thank you I can’t wait to be off this horrible drug!!

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I second everything Pam and Jools have said. Having come off augmentation from ropinirole myself, although not from such high doses.

Slowwwww is te word. And according to my gp a low amount of a higher potency opioid (50-100mg tramadol in the evening) is likely to cause fewer side effects than relatively a higher amount of a lower potency opioid/painkiller (30mg codeine). But indeed, by all means, try which one suits you best.

Good luck! I sure hope the legs are more quiet today.

PS Have the symptoms sprrad to other parts? Or to daytime?

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Hey, yes it’s in my arms too 😩

I get in such a state I end up having a panic attack with it.

Never slept at all last night but after all your advice today I’m hoping tonight will feel better although I’m nervous to try the tramodol again because it seemed to wake me up and I wasn’t tired at all I just spent the whole night walking around my kitchen 🙈

So far today I have had 3mg of ropinorole so I got 2.5 left to take before bed so fingers crossed.

Thank you x

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Don’t expect miracles but fingers crossed you have a better experience. I’m on my 4th night on Pregabalin 100mg and would you believe I slept 12-8!!! That hasn’t happened for 10yrs!

Must be a fluke 😂

Let us know how you get on - don’t hold back - we can all take it on here x

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Ah that’s amazing Pam 👍🏻

Just had my last lot of ropinorole so in total today 5.5 I’m off to bed soon but I feel really nervous!!

I couldn’t cope with another night like last night 😢

I will update you hopefully 7am when I wake up x

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Hi Lucyjane, yes the tramadol - like most opioids and especially for people with RLS - often incurs sleeplessness. In my experience, the sleeplessness didn’t last all night AND as the tramadol suppressed the RLS it was a blissul and quiet sleeplessness. Time to read, e.g. That is not exactly what you want, therefore other people advise to ask for a sleeping aid like zolpidem. In my experience, after a night or two you will be so tired and your sleep debt so high that you WILL fall asleep.

Try to let things be as they are. When you still have symptoms, get up and pace and find something that you like to distract yourself. If sleepless without symptoms, enjoy and do something that enables you to fall asleep while doing it, such as reading. Just don’t fight, try to accept what is. Makes your life a whole lot easier. And, actually, is easier than it sounds!

Good luck. I hope for a quiet night for you!

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Thank you and yes I’m trying to stay calm and go with it. Happy sleeping 🤞🏻

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You too!!!

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I am in the US and I went through withdrawal from ropinirole without knowing that I wasn't supposed to cut back slowly so I understand what you're going through. We have something here called podcasts. There's an app that you can download onto your phone and there's all kinds of good stories you can listen to at night when you can't sleep. I found some of them to be very soothing and interesting. I know it won't make your legs feel better but it can keep your mind busy while you're going through everything. Wishing you peace.

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Thank you I will try anything :)

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Morning 😊😊😊

Amazing nights sleep 9pm-5am no RLS at all in the night.

I feel so much better today BUT my mind was so taken over by the ropinorole and codine v tramodol I forgot to take my 25mg of Pregabalin 🙈

I will do the same again today and due to drop down to 5mg of ropinorole next Saturday!!

I hope you all slept well?

Lucy x

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That’s brilliant news Lucy. I’m so pleased. You may find as you get further along that you need the Tramadol rather than the codeine but whatever works for you! I wouldn’t worry too much about the Pregabalin at the moment. You have a long road and it will be some time before you feel the benefit of that. One step at a time and keep letting us know.

FYI 4th night on 100mg Pregabalin and slept like a baby. Keep pinching myself - it feels too good to be true 😊

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Thank you Pam and I’m so pleased you are getting somewhere with it too.

I too couldn’t believe it when I woke up!

I do have a long road ahead so Day by day for me!

I’m so glad I found this site and you guys x

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Good morning, LucyJane - so glad you slept well, what a relief.

I am new to this site but read all your posts last night. As a result I had bad dreams about it all - dreams are a side effect of Ropinirole - I never used to dream! I have suffered from RLS for 55 years or so. It has gradually got worse, especially in the last 15 years and now I have it in my arms as well. Last November I started on Ropinirole and thought it was great until I heard about augmentation. Last week I had to increase to 1.5mg as symptoms suddenly got worse.

I KNOW - that's not much, but your posts have made me feel I need to get off it now while it is a relatively small dose.

I used to take ferrous sulphate but was told to come off it a couple of years ago as my levels were too high - but don;t know what the levels were! I now know to get this checked again.

However, I need advice from you all - what do I suggest to my GP to help me come off it and keep the symptoms under control? I am a bad sleeper at the best of times - and have Lormetazepam which helps but only once or twice a week when necessary. Since starting Ropinirole symptoms have become much, much worse when they happen.

And when I get off it, what medication or combination of treatments have you found works?

Is it worth asking to see a specialist and, if so, what sort of specialist?

Any help from my fellow RLS sufferers would be greatly appreciated!

RosieRow

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Hi Rosie

I would def request a referral from your gp to a neurologist and 100% in my Experience get off ropinorole ASAP!!

I am just starting Pregabalin but can’t give you much info on it as it’s all new to me, however there are lots of people on here who are taking it and apart from the usual side effects it seems to be good for most.

I take magnesium citrate 3 x day along with lots of other vitamins.

I use a magnesium spray just before bed and stay off caffeine but it seems to be diff for diff people.

I hope you get some kind of plan sorted.

Keep us updated.

Lucy x

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Hi RosieRow and welcome.

Yes, it’s a low dose and the last thing you need to do is increase it as you have read. I was only on ropinirole for 6 mths (it worked like a dream) but then symptoms started earlier in the day, the pills wouldn’t last as long etc etc. My doctor increased the dose, it worked for a couple of weeks and then bingo! It was back. I found this site and realised I was suffering from augmentation and then the battle with my doctor begin. So go armed. If you go on the RLS - UK web site and print off the explanations of augmentation and treatments and take this to your doctor.

You will need something like Tramadol to help you through the withdrawal from Ropinirole and even on your low dose it won’t be easy. Decrease by 0.5 per week, no faster, and be prepared for a rough time. Search augmentation on here and you will read of other peoples experiences.

I then found once I was off the ropinirole I was able to manage on just 50mg of Tramadol and ferrous sulphate tablets. I get my ferritin up to 130 which I think has helped a lot. So get that checked again and don’t accept normal. Normal for RLS sufferers has to be above 100. Some people have found iron infusions help - again search on here.

The Tramadol worked for me for 2 years but then lost its efficiency and I’m now starting with Pregabalin - 4 days in and very positive so far.

If your doctor is willing to work with you and you go armed with information (as much knowledge as you can, as he won’t have any) then that may be all you need. If your GP is stubborn and won’t listen then ask for a referral to a neurologist, but bear in mind it could be a wait of 6mths or more and very often they are no more clued up! So work on getting your doctor on side.

Good luck and keep posting and letting us know how you are getting on. Augmentation is the biggest cause of people posting on here and doctors are still on the whole ignorant of it!

Pam

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Hi Lucy, finally I have found a forum...I am not using the name Restless Leg Syndome anymore but rather the actual "Willis Eikbon Disease". People who are not besieged with RLS can not understand the pervasivness of the disease. I get dismissed. So now I use the 'formal' medical name of Willis-Eikbon Disease ( WED). It sounds as serious as it is. I am going to write my first post under the name "Auntiesioux" Look for it below, it will be a lengthy so did not want to tag you here.

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Thank you LucyJane and Pam for your encouragement and ideas. I am now going to be away from home for three weeks and just hoping things keep stable for that time. I see my GP on 19th September so I want, as you suggest, to go armed with as much information as I can gather and understand! He is very supportive so I think he will listen and take appropriate action.

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Hi Lucy

I have just come off Ropinirole and now on Gabapentin which is not a dopamine agonist. Bad withdrawals for1 day but OK so far. Spud

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