Restless Legs Syndrome
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Recuip withdrawal. When will the horror end?

Fourth night in a row that I slept maybe an hour each night, paced, kicked my legs to the point that I can hardly walk due to the pain and feeling so restless I could jump out of my skin. This has to be so bad for my body. I don't see a light at the end of the tunnel. I've been tapering for weeks slowly from 2mg to just a sliver of the pill now no pill at all. Neither Tramadol nor Percocet is helping me through this. For those of you that have been where I am now, please tell me when I can see even a tiny bit of relief. Torment isn't a strong enough word for the hell weaning off Recuip has been.

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I am so sorry you are going through this. I wish I had an answer for you. I ran out & had to miss a dose before I could get it refilled. If I were going to design the most perfectly cruel form of torture, that would be it.... I hope someone responds with a real answer for us both!

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Hi

I have no magic cure I’m afraid but just to let you know your not alone!! I am currently withdrawing from ropinorole (similar DA) I believe and it’s hell on earth!!!!!

I take magnesium,iron tablets, eat bananas, you name it I do it!!

I am down to 3mg from 6mg so still a way to go yet for me.

Tramadol didn’t work it kept me awake, zopiclone spaced me out but never relieved the RLS I always take codine before bed and now been prescribed clonazepam “only 500 micrograms” reluctantly going to try it tonight as I’m really struggling.

You are so near the end of getting of this horrible drug so hang in there because within 2 weeks you will feel so much better. Good luck and lots of strength x

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Thank you so much for reaching out to me. I am in tears trying to just get through another day having not slept more than a total of 3 hours in past 3 days. And then knowing tonight will be torment all over again. So tired I can hardly put one foot in front of the other but yet way too restless to lie down and sleep. I am so weary from suffering and so angry for doctors to have the nerve to downplay the naughtiness of this med and what it does to you and keep on prescribing it like its some wonder drug. Wish I had never entered a doctors office asking for RLS relief in the first place because even the years I had the on and off legs moving was nothing compared to the augmenting and withdrawing from Recuip. I feel the need to make it my mission in life to warn others to NEVER ever take this drug. I will keep you posted on how I am doing however reading posts saying it can take 6 months to feel better after stopping this med makes it even harder to see the light at the end of the tunnel.

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Awe I feel for you I really do and if it makes you feel any better I’ve been in tears myself tonight too.

I can totally relate to the lack of sleep and how it makes you feel, have a nice relaxing bath (if you can) I know that can be torture sometimes too.

Massage your feet and legs with some nice cream, have a hot chocolate and maybe try listening to some sleep therapy to try and take your mind of it? It’s all things I do and I pray you get some sleep tonight!!

Also try to keep your feel and legs cool as I find the heat makes it worse.

Good luck xx

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Chocolate is a strong trigger for me, so I would suggest avoiding that.

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mmb, have you been able to try a really strong opiate? Methadone is the go-to drug for this misery. It will not stop it but will help quite a bit.

As to benzodiazepines, most of them do not work for us. Eszopiclone is supposed to help, and Loprazolam helps me a bit. But akathisia will break through almost anything, except a good swig of liquid methadone. You still will not sleep much, but you will be much happier about it!

Keep going, four days is not much for this torment to end. But you should start to get a little more sleep soon, from nothing to an hour, then two hours........

And yes, it is shortening all our lives.

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So sorry you’re suffering...I’m weaning off Mirapex, so I know how you feel...I don’t have any narcotics, either! I’m also weaning down from 2mg. I took 0.25mg last night for only the 2nd night ( not consecutively, mind you...) and I ran out today. The pharmacy was out and it should be in tomorrow, God willing...so tonight has already become a hellish nightmare! I have already taken 1.5 grams of Kratom. I hope this helps!

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Have you tried magnesium spray. The tablets don’t work for me but if I get restless legs and arms (admittedly not augmentation) and spray them it really does work. By the way it doesn’t work if I spray before I get the restless legs and arms and it doesn’t work if I bathe in it. Worth a try!

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Try Kratom - I’ve tried everything else and Kratom got me through augmentation Allong with a sleeping pill once or twice a week . I’ve had rls nearly all my life I’m now 71 and augmentation was the worst thing But I did get through it and now it’s a lot better than it was on dopamine agonists so I’ll never take those again.

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I had RLS for many years atried all medication sprays bowls of cold water you name it i just happened to mention it too a new doctor and he put me on PRAMIPEXOLE180 MICROGRAM ONE A NIGHT and i cant thank him enough ive never slept so well but i still dont trust chocolate GOOD LUCK Rob😃

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Care with this. It’s another dopamine drug, similar to requip that we are discussing here. Whatever you do, don’t increase your dose and make sure you read up on augmentation.

Pam

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Glad you mentioned that because Mirapex and Recuip are both equal as far as side effects and weaning off goes. Robroberts tread very carefully. We have been there, suffered mercilessly and dont want you to go down the same path.

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Aww...I really feel for you. I didn’t see any light at the end of my tunnel either when I augmented.

Maybe this will help:

Coming from someone who went through 7-8 months of very little to no sleep every single night (and actually spent lots of 48-hour periods without a wink of sleep), coming from someone who got severely depressed despite anti-depressants and contemplated suicide more than once, coming from someone who described those 7-8 months as «the months of the zombie Jessica», coming from someone who said that this would not get any better and that she was «doomed to walk the streets», I can safely say that this «Hell of all Hells» does end.

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Thank you so much for sharing with me. I am feeling all of the above and just needed to hear from someone thats been where I am now that this horror will eventually end. I think the drug company needs to know the torture they are inflicting on the poor souls that are prescribed this medication. Anyone reading this post, I urge you to NEVER start Ropinole because you will live to regret it.

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I knew you did.🙂 We need to feel that we are not alone in this torture.

I’ve never been on Requip (augmented on Pramipexole,) but thanks for the heads up.

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I have been on ropinirole for years. Just recently went to 4 mg extended release. I hate being on it but what are the other options? I was offered some patch but I’m afraid to stop the ropinirole because I know it will be torture

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The 8 month period you are referring to,, is that how you felt during the time it took to completely withdraw from the DA med where the suffering was so bad or was that during the augmentation time

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I was augmenting and on the same dose the entire time. I was on a 8-month-long waiting list to get into see a sleep specialist, at the beginning of which I started to augment. It was only after my appointment (during which time I learned the term «augmentation» —had no clue before then and was scared out of my mind that my legs were going nuts for what I though was no reason) that I started the withdrawal process. I honestly don’t remember the withdrawal being all that bad, but that might be because my augmentation length trumped the withrawal length.

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Try Gabapentin, after 1 year on Ropinirole suffering, Gabapentin works so far. NO RLS

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I am very curious as to WHY you are weaning off of Requip. Perhaps if I knew the answer to that, I could help further.

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First of all the augmentation set in pretty quickly after about 8 months and I refuse going past 2mg of this mind altering drug. Secondly I gained 10 lb in the first weeks I started on it. I just cant afford the extra weight gain. No amount of dieting and exercise has helped me lose it. Next the nausea was more than annoying. When I mentioned to my doctor that I was jerking my legs and body so much that people were asking me if I have Parkinsons he said "oh that's just a side effect of the Recuip". Well a very annoying and even painful side effect I might add. So much so that my legs hurt terribly from all the extra movements. My legs also swelled and felt numb. In the few days I have stopped taking it the numbness has totally disappeared. My personality has changed and irritability/restlessness so bad that life didn't seem worth living. Like I said in a previous post. I felt so much better before starting Recuip than I do now. Oh sure I gained a few months of blissful sleep while taking but even that turned sour when the restlessness took over my nighttime hours as well as starting as early as 1pm. For all those reasons and now the torment of withdrawal have made me a very bitter person towards this drug. It almost ruined my life but I am not letting it do so. I will be totally free of this drug and hoping to feel like a normal human being again

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Amen to that last part! Good for you for not giving in!!!👍👍👍👍

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I totally understand. I tried requip but got no relief from it. So doctor put me on pramipexole which does help. Every drug does not work the same for everyone. Have you tried another medication?

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Tried Gabapentin which really didn't seem to help at all and really that drug has a long list of side effects too so I stopped taking it. Want to steer clear of anything and everything right now.

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Hi

Pramipexole is another dopamine drug so would not be recommended for anybody already suffering from augmentation.

I’m sure you are aware not to be tempted to increase the dose and to look out for signs of augmentation. I hope you get a good long time on it - it varies so much from person to person. Unfortunately for me I got 6 months on ropinirole before it all kicked in. I would never use a dopamine drug again!

Pam

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I have read many times on this site the reporting from people who have experienced augmentation then withdrawal - they always say how glad they are after making it through. What is puzzling to me is the fact that they had started on their DA drug because they were suffering from RLS and now they are completely off it. What happened to their RLS symptoms? ARE they gone? If not, what are they taking to relieve them? They never say - - - just how glad they are that they came off the DA drug.

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As someone who has augmented then withdrawn I’ll try to answer.

Obviously I can only speak to my own experience:

Although my symptoms are much better, they are not gone by any means.

As to going on a DA in the first place, I did not know that it carried the risk of augmentation. I was never told of this by my prescribing doctor (I also don’t remember if it was in the accompanying leaflet or not, but that’s not the point here). The point is that the doctors first line of treatment is a DA and that is why it’s prescribed.

As to why I was relieved to get off a DA because augmentation occurred (it worked wonderfully for the first 3-4 years), the sensations of augmenting (once it starts which, for me, came out of nowhere) is indescribable. Imagine having a pill that makes those uncomfortable symptoms of RLS much better, then bam! Symptoms not only go back to where they were before going on your medicine, but they come back umpteen times as bad! That is what augmentation is. The condition worsens. The drug stops working. It doesn’t just decide to lessen its effectiveness by just a tiny bit, it stops all effectiveness. Your body stops responding to it.

As to needing to withdraw and why its so bad, we need to stop the process of augmentation. If a drug is causing undesirable side effects you’d want to get of of it, right? It is also assumed that, once the undesirable effect starts, the only way to stop it is to take away the cause of it.

As to the withdrawal from a DA being so bad, maybe someone could help me out here? If augmentation means that the condition has worsened because the drug stops working, then why is withrawal so bad? Isn’t it only bad if the drug is still working? Honestly don’t know this one, so would appreciate an answer)

As to what replaces a DA, that would be a non-DA because those don’t carry the risk of augmentation

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Hello again Jess. On day 11 off the recuip. Although the worst torment is over I am still having some bad nights. Tonight for example no sleep at all. Makes for a long night of tossing, pacing, kicking and kicking some more. I have had several no sleep at all nights now. Only sleep I have gotten is when I took a Percocet but I know that's not a permanent fix. Only have 2 more pills left so I am making them last. Wondering if this is still part of the withdrawal process or is this what life will be for me from now on. Never went an entire night wide awake even on my worst nights before the dopamine antagonist was introduced into my life. Is that how that 8 month period went for you. Many no sleep at all nights?

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Hello! I’m glad to hear that the worst is over, but sorry to hear that you are still having bad nights.

I definitely had nights when I couldn’t sleep at all because of my symptoms. If I slept at all it was during the day (you could forget sleeping at night,) but I also remember going through tons of 48-hour periods without a wink of sleep. It was Hell on Earth!!!

I had also never spent even a single entire night awake before this time.

I was in total despair and started believing that I was «doomed to walk the streets», so I was beside myself with relief when this ended just as quickly as it at begun (out of the blue).

Your Hell will end!

Stay strong,

Jessica

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Thank you so much for your encouraging words. I feel as though my body is about to give out some days.

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Hi! You’re welcome. 😀 Yep, I felt that as well. I remember my therapist once telling me something along the lines of «the body makes sure it gets the rest it needs» and telling her «well, my body isn’t getting that message». I was sure that my heart would give out at any moment and was actually waiting for that to happen. I also remember telling people that the human body isn’t designed to deal with this.

It will end. I promise. For me, it stopped as suddenly as it had started. Believe me, you want to be around when that day comes because it sweet relief! I remember being drunkenly happy the moment it hit me that my Hell was over AND I WAS STILL ALIVE!! My heart was still beating!!! I told anyone who would listen! Of course, I got some of this:

Me: «I’m alive!!!»

Person: «Of course you’re alive, what do you mean?»

Me: «I mean I’M ALIVE. I just went through Hell, but I came back ALIVE»

Person: «Ummm.....ok».

But my family, husband, and therapist were as pleased as I was!!!

Stay strong,

Jessica

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So did this relief come after that 8 month period after stopping the DA. I guess my question is will this take another 8 month before I can breathe that wonderful sigh of relief also.

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The answer is hopefully not. Hopefully you will get relief a lot sooner than that. Everyone’s story is different, Mine was a long and complicated story, so I won’t go into that. The gist is that I was put on an 8-month-long waiting list to see a sleep specialist because I was having increased sleep problems. It wasn’t until I got into see this person that I was weaned off Pramipexole, meaning that I was on the same dosage of Pramipexole the entire 8 months. To be honest, I don’t remember my withdrawal being all that bad. I remember bad nights here and there of my withdrawal, but what has stuck with me was that 8 month period. Hopefully this answers your question.

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So glad you are doing better. We all need a success story when we are in the depths of despair. What are you doing now to keep your RLS tamed?

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Thanks! Yes, we sure do! I’m on the Neupro patch now. It works fine — not perfect, but okay.

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Good question. I'll let you know when Recuip totally leaves my body and I can think straight again. In my case like I had mentioned, I had RLS for many years and was doing somewhat ok with an OTC supplement from CVS called Somnapure. It helped me relax most nights so that I could fall asleep for several hours before the leg movements kicked in. I mentioned my RLS issue to my doctor who hastily wrote me a script for Recuip telling me " this will calm your legs". It worked like magic for several months but then the rest is history. With my new found knowledge of this disorder, I am making it a point to take the iron and magnesium regularly and will try the Somnapure again. I thought life before Recuip was bad but now I know it was not anywhere near as bad as it is now.

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I feel for you. Augmentation and withdrawal from requip ( Ropinirole hydrochloride) was the hardest thing I have ever done and I will never, ever touch another dopamine agonist.

It took 14 days for me to get through the worst of the nightly torture and then about 6 months to find a combination of meds that enabled me to get regular 4/5 hours sleep.

I am now regularly getting 4/5 hours , wake up, have a walk & then back to sleep for another 4 hours.

I am on 25mg OxyContin a day and 100mg of pregabalin ( Lyrica)

I also became vegan after reading it had helped Raffs and raised my serum ferritin to above 200 by taking ferrous bisglycinate 25 mg pill and 40mg patch from PatchMD every other night.

The meds weren’t effective until I raised serum ferritin levels and changed diet.

There is light at the end of the tunnel and you will get off requip.

Totally understand what you’re going through- well done for getting this far. Stay strong.

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Also I found cannabis was very helpful during withdrawal- it’s illegal here in UK but my adult children got hold of some for me. Be careful with dose / strength as Street cannabis can be very high in THC and it did cause panic attacks for me after 8/9 nights of use but the few hours sleep it gave me during withdrawal was a lifesaver.

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