I am down to lowest dose of Pramipexole after slow taper every two weeks, augmentation and DA withdrawal symptoms have been as brutal as others have posted.
Has anyone developed dyskinesia or involuntary, repetitive movements, at end of taper period? As well as worse RLS symptoms, no sleep, I now have these repetitive involuntary movements of arms and legs…..in eight hour bouts. Parkinson’s patients get this if they stop DA but they are on much larger doses but I haven’t seen it mentioned on RLS forum posts. Its mostly at night. Not on any other medication or have any other disorders, just take two Codeine at night if RLS is painful. I am aware of the more serious DAWS ( Dopamine agonist withdrawal syndrome) but I don’t have any other psychological symptoms or low BP just the involuntary limb movements lasting hours. They stop or are reduced when doing a voluntary movement. Never had it before. See Neuro Consultant next week so hopefully he can help but be good to know if anyone else experienced this.
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Many thanks Joolsg, article covers it well though pretty scary reading if just starting process. The forum support while going through it is a great resource. I am some weeks through as dropped my meds by half each fortnight. Hadn’t quite appreciated full extent of impact on life such as limiting driving due to lack of sleep or explaining it to friends/family. Will use this info sheet to help do that.
When I went through withdrawal there was zero information or help on any website. It got so bad my husband was trying to drag me to A&E, but I knew they wouldn't have a clue. I was right. Shortly after I went through withdrawal, another poor soul DID go to A& E in Slough. They thought he was having a pyschiatric meltdown and RESTRAINED him. Can you imagine?.Severe, all over RLS and they tie you down?I think knowing it is hellish actually helps. Most people give up because they think something must be wrong. Their doctors didn't say it would be worse thaan heroin withdrawal so they assume something is wrong.
If you know it's hell then you can cope with it- knowing that after the 2 weeks it DOES get so much better.
I found cannabis was enormously helpful. And kratom. Strangely, cannabis was illegal in 2016 and kratom was legal. That's now reversed.
Cannabis knocked me out for 20/30 minutes after 4 days of zero rest or sleep. I wanted to throw myself out of the window. And a teaspoon of kratom powder stopped the jerks & sensations for a few hours.
You need to stay on Pramipexole at 1.5 mg twice a day and also you need to take 500 mg of Keppra twice a day. I’ve been on these medications for one year now and I haven’t had RLS which was so severe. I can guarantee you your life will change if you try this maths together. My doctor is a university of Hawaii professor for since she put me on these meds, my life has changed. Just see what happens. get better.
I think people reply on this kind of forum out of a wish to help others by sharing our experiences. However, I do think your advice on a DA medication ( Pramipexole) based on your personal experiences does not reflect current knowledge. Most, leading, eminent international specialists in the fields of neurology and sleep medicine, are collectively agreed that dopamine agonists for RLS will in many long term users result in augmentation.
The higher the dose and the longer the drug is taken, the more likely it is that augmentation occurs. Once that happens, coming off the drugs is the only option and that is the most dreadful experience most people can imagine. If every current user of a DA drug for RLS had the paper on RLS UK about tapering off the drugs and what you are likely to experience, included with their prescription, I suspect few would want to keep taking them. It’s a personal choice of course, but at least all patients would be fully informed.
Had I know about DA augmentation twenty years ago, and how truly dreadful tapering off these drugs is, I would never have entered into this ‘Faustian Pact’ and taken them - even though they did work, for some time. We don’t see the problem in this honeymoon drug period……but its waiting in the wings!
We do know now that you ‘kick the can down the road’ if you take a DA for RLS and if the dose is high for a long period, there is every likelihood you will augment and then have to go through up to six months or more of 24/7 severe physical and psychological distress to wean off them.
In my opinion, based on a health professional background, the key regular contributors on this forum, are providing forum users with correct consistent advice, backed by scientific literature and current medical opinion. The knowledge we have now of these drugs, how they work and the potential side effects can help us all make the best choices for ourselves and advocate for ourselves for the current, evidence based treatments with our own prescribing health professionals.
I was on Pramipexole for about eight years gradually increasing it. Then augmentation. It took me six months to come off of it completely but during that time I was out on gabapentin which didn’t help at all. I’m now on 5mg OxyContin in the morning and 10mg at night and it’s pretty much under control. Ever ‘body’ reacts differently to drugs and you just have to try until you find one that works for you. I hope you have a good neurologist? It’s very important to have someone you can trust and is willing to try different medications. Good luck!
Yes my husband had as you have described, whole body jerking, looks a bit like seizure but he was aware. It was especially bad getting off the last of the pramopexole. It went on for 72 hrs continuously and he was a mess and sleep deprived. He started the wean cold turkey as advised from doctors just to come off it, he started gabapentin but it made little difference. Honestly I will never forget bearing witness to his distress. My advice is take time off work, keep telling yourself that this will pass, he took some Valium prescribed by Gp but knowing what I know now opioid probably a better drug to use. Make sure you have support. Keep going, you will get there.
Thank you minijackrussell, my poor husband ‘bears witness’ to my nightly suffering and sure it is awful to watch. It looks just like a seizure at its worst but aware and awake. Hope your husband is in a better situation now.
Carers/family of people with RLS and support for them is important as is our gratitude we have someone to share this in person with us. My GP prescribed me Codeine 30 mgs at night to help, at my request, and it does help a bit although quite a low dosage. We have overnight stay this week to see Neurologist and poor husband has to share the room with his non sleeping, constantly moving partner- but I have a plan just to let hotel know I may be wandering about corridors at night listening to my audible books. And I have now taken last Pramipexole dose ever. Your words of support much appreciated.
He’s off pramipexole two years now, it takes a little time for your nervous system to settle but nothing will ever be as bad as where you are now with the withdrawal. He’s tried all sorts with fair results but it can be hit and miss really. He’s started pregabalin 2.5 weeks ago so hoping that will start to help. He is open to using low dose opioid if pregabalin doesn’t help, he’ll give it time. Wishing you the very best of luck with it!!! You’re nearly there, hang in here. Audible is a lifesaver!!!
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