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 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!
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