Those of you that have read my posts know that I'm experiencing an extremely difficult dopamine agonist withdrawal syndrom (DAWS). Now I'm at 60% of my initial 2mg dose of Neupro, i.e 1.2mg. I also take 300mg of pregabaline, 100mg of tradonal extended release, 0.5mg of clonazepan, and 0.125mg of alprazolam. My ferritine level is still high (over 300).
Each time I reduce my dose of Neupro, my condition worsens over 7-10 days to culminate into pure medieval torture -what I call "the peak". It can last about a week before cooling down. When I'm at the peak, I wake up around 4 AM with a very painful RLS originating from the lower back and extending to the legs, and sometimes to the upper back. This is a kind of electric current that makes my legs shiver, and sometimes my whole body. It can last all day long. This RLS is so painful that I can cry and scream a large fraction of the day. I can barely walk because my lower back and legs hurt so much. My only respiste is at night, when I take my tradonal and clonazepan. Then I sleep like a baby for a 5-6 hours. At peak, on top of the RLS, I also have extreme anxiety and depression. Basically, I'm not myself anymore. I'm delirious, I speak and whine alone, I tell my wife that she should quit me, I talk about my upcoming death, about the fact that this withdrawal is going to kill me, and that everyone will be better without me, and all silly stuffs like this. I also thought several times about suicide, but, fortunately, I never planified it seriously.
Out of the peak, I become myself again: determined, optimistic, quiet, and active. My RLS calms down. I go back to work (I'm a scientist), I play sports, I have good times with my wife and my son. I'm not as energetic and productive as I was before withdrawal, but I'm getting better and better. Then comes the day of my dose reduction, and the cycle starts again and culminate into another awful peak.
My question is: would someone here have some tips to reduce the amplitude of those DAWS peaks? Should I increase my dose of tradonal? Take more clonazepan? More pregabaline? Or do/take something else? My neurologist has never met such a difficult DA withdrawal, and he has no idea how to deal with it.
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Mikatrap
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Your neurologist simply has to google 'dopamine agonist withdrawal videos' and he will see lots of patients going through the hell you are currently experiencing.It is common.
Most of us seriously consider suicide while getting off these poisonous drugs.
The ONLY thing that keeps us going is the thought that we will soon be in a better position.
My only concern is tradonal. As it's the ONLY opioid that also causes augmentation, it might be making your withdrawal worse. I would switch to a different opioid.
Will your neurologist consider Buprenorphine or methadone? They are the most effective opioids for RLS.
I know a few people use it while reducing dopamine agonists and it really seems to reduce the terrible withdrawals.
Stay strong. You will get through it. Once off dopamine agonists, the severe RLS will settle.
You can do 1 of 2 things to lessen your symptoms from reducing:
1) Just snip off a tiny piece of the neupro every 2 weeks. It will take you longer to come off it but you will suffer less.
2) Switch to ropinirole. 1.8 mg of ropinirole is equal to 1.2 mg of neupro. Wait until you are ready for your next reduction. Then since the lowest tablet you can get is .25, take 1.75 mg of ropinirole. Meanwhile get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it.Then reduce by that amount every 2 weeks.
If you find even the 1.75 mg is too much then use the jewel scale to measure one fifth of a .25 mg tablet which will bring you up to 1.8 mg and again shave off a bit etc.
The advantage of the second method although it is harder to get started is that you can be more exact.
I probably or others have told you that the pregabalin won't help you much until you are off neupro or ropinirole for several weeks and then you may not need that much and to find out reduce by .25 mg every couple of weeks - no faster or you will have withdrawal symptoms.
Follow this advise by reducing very slowly and you should be more comfortable. I suffered the hell of pramipexole augmentation a year ago. I remember sitting in my chair jerking and almost convulsing. At my last dose—i really thought i was going through the worst hell—although I had a doctor that wanted me to reduce from 3 mg making major dose adjustments every week. It was then i got on this forum and it had helped me immensely. It took me at least 6 months before i started feeling more back to normal. I would recommend an iron infusion of your ferritin is below 100. If you are like me—your Feeritin level may need to be higher to feel better. I just had my second iron infusion last week my ferritin was150 but my symptoms were getting worse in other parts of my body—arms, legs and torso. I am hoping this will help. I am also taking 1500mf gabapentin daily. I will keep everyone posted if the infusion was beneficial.
Hi SueJohnson , thank you for the valuable advices.
I'm now hospitalized again. My current peak hits me really hard, and it seems to be extended compared to previous peaks.In fact, I have the feeling that the withdrawal is getting worse at each dose decrease. Is it common?
They put me under a patch of Buprenorphine (Transtec) yesterday early afternoon. It did not prevent me to have an awful RLS-pain crisis from 18h to 23h. They had to give me a Tradonal 50mg to ease the pain and enable me to sleep. Furthermore, my oxygen saturation went down from 98 yesteray to 95 today. It may just be coincidental, but the desaturation effect of buprenorphine seems to be well documented, and I find it a bit scary. I'm thus not sure that switching to Buprenorphine is the solution to my problem. Your recommandation to go more slowly in my tapering seems much more appealing to me than to take stronger opioids than Tradonal.
I will thus talk to my neurologist on Monday about moving to ropinirole once my symptoms have settled, and to cut small doses every two weeks. You also recommend to stop pregabaline, tapering off by 0.25mg every 2 weeks. And what about Tradonal and clonazepan? Should I keep both?
Following this strategy, what about a micro reduction every day, so small that the brains doesn't notice it, and a tapering spread other more than a year?And if the brain doesn't notice it, i.e. can adapt on a day by day basis, would an opioid still be necessary?
Note that the severity of my withdrawal symptoms could be due to the fact that I withdrew from Venlafaxine last year, from Feb to Aug. My neurologist thinks that it could have destabilized my brain chemistry enough to make my DA withdrawal extremely difficult. I took venlafaxine for 29 years, and after such a long time, it can take more than a year for the levels of serotonine and noradrenaline receptors to be back to normal. And all neurotransmitter systems are interconnected. So my dopaminergic system could have been already strongly destabilized when I started my withdrawal. In this context, maybe should it be good to take a break of a few months in my withdrawal?
Yes buprenorphine does not agree with you so I wouldn't use it. However the tradanol did help you so I would continue that. I would not reduce the clonazepam since that requires a weaning process too would you don't need right now.
On the pregabalin, I meant to try reducing it after you are off ropinirole and you find your RLS is controlled by pregabalin to see then if you need as much as you are taking .
I would not try reducing by micro doses each day but you could try doing that every 2 weeks using the jewelry scale and there is certainly no harm in spreading it out over a year since you are so sensitive to it.
You might want to take a break from reducing for a week or 2 but I wouldn't take a break for a couple of months.
Hey Mikatrap. I feel for you and understand the trauma of those dreadful emotions. I experienced DAWS when I came off Pramipexole and had terrible anxiety and depression - just as you have described. However, I am now fine. Trust me - you will get through this. Try not to let your mind race with negative thinking. Tell yourself you will get through this. All you have to do is take one day at a time. Just focus on getting through one day. Then do it again the next day. Many of us have been where you are and got through it. Hang in there. What you are experiencing is temporary. Your brain will slowly heal and better days are definitely coming. All the best brother! Message me if you need encouraging.
Hi GaryHB. Thanks a lot for the supporting and kind words! It helps a lot! I got to the same conclusion: the only way out is to accept the situation and to take one day at a time. Withdrawal peaks are awful but temporary.
Let me reinforce Jools' suggestion about buprenorphine or methadone. You are simply not getting enough help from tradonal, as its strength and staying power are not sufficient for your requirements. When I was finally prescribed 10mg/day of methadone, my RLS symptoms were immediately ameliorated and I began to get 8 hours of restful sleep every night. In the UK, buprenorphine is the usual low-dose opioid prescribed for refractory RLS; I'm not sure about Belgium. You do not need to be suffering as you are.
The nightmare you are going through, I experienced as well. Six years ago I tried unsuccessfully to withdraw cold turkey from Pramipexole. It was torture. This year, I successfully withdrew from Neupro. I really did't have a choice. Augmentation was just too painful both physically and psychologically. It took me about three months but now I am feeling and sleeping in a way I never thought could happen again. The difference this time has been Buprenorphine to cushion the fall. I am 9 weeks free of Neupro and the withdrawal was much less difficult than my previous attempt . MUCH! There were some bad nights, a fair amount of restlessness/ pacing, but I made it. After 3 months, I cut the last 1mg patch of Neupro into an eight and that was it! The Buprenorphine was the key but I don't know if I would have succeeded without the support and the guidance of the people on this site, especially SueJohnson and Jools.
My suggestion to you is to explore the possibility of trying a low dose opioid to ease your symptoms. Buprenorphine worked for me but there are others. It's possible for you to withdraw from Neupro without so much suffering and like me you are going to be amazed by how much better you can feel. Truly, I have not slept like I am now in 30 years, especially for multiple nights in a row!
Follow this advise by reducing very slowly and you should be more comfortable. I suffered the hell of pramipexole augmentation a year ago. I remember sitting in my chair jerking and almost convulsing. At my last dose—i really thought i was going through the worst hell—although I had a doctor that wanted me to reduce from 3 mg making major dose adjustments every week. It was then i got on this forum and it had helped me immensely. It took me at least 6 months before i started feeling more back to normal. I would recommend an iron infusion of your ferritin is below 100. If you are like me—your Feeritin level may need to be higher to feel better. I just had my second iron infusion last week my ferritin was150 but my symptoms were getting worse in other parts of my body—arms, legs and torso. I am hoping this will help. I am also taking 1500mf gabapentin daily. I will keep everyone posted if the infusion was beneficial.
Hi there , I went through the same last May and I have never experienced anything like it . I used to crawl along the floor sobbing at night. I talked about suicide a lot but this site saved my life . Dont withdraw to quickly , I tried to at first but it doesnt work. I had Gabapentin and Clonazepam and various painkillers but nothing really helped. It took me til November to get off the Da's. Im now just on Gabapentin and Targinact and tho day and evenings are good , night time is a problem still sleeping about 1.5 hrs then have a walk then try again and again to get more sleep. I listen to sleep music and read a lot as distraction really works. Have even played Scrabble at 3am with hubby .Also find a hot bath helps settle legs. I dont get pain just crazy restlessnes. Am seeing Neurologist soon . I still have low days and dont feel the same person. Have become quite anti social .Keep your chin up , you will get through it
My condition is awful. My withdrawal crises are worsening. I'm in a constant withdrawal peak now. I don't think that I will make it. I'm back at the hospital. I have no more life. Every day is pure medieval torture. My neurologist is lost. See my new post 'Help - Kindling?'
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