As described in my other posts, my dopamine agonist withdrawal is awful. I suffer from DAWS, and I've done several stays in an hospital neurology service, and they are doing their best to help me, but something is awfully wrong. I got out of the hospital the day after yesterday. Yesterday, I had a terrible withdrawal crisis. I had electricity and pain waves in my whole body, I could not breath, I was shaking like crazy. I had to call an ambulance, and now I'm back at the hospital. Since then, I had two more crises here. I suspect that the constant worsening of my condition has to do with the phenomenon of "kindling" that is well document for benzos.
At the origin, I suffered from mild RLS. in 2021, they put me on pramipexole. I suffered from severe augmentation. I tried to withdraw from pramipexole from Aug 2023. And since then, my life is hell.
Regarding medications, here is my story:
* DAs: I went from pramipexole 0.26mg to 0.13mg in mid-August 2023, then 0.26mg in early Sep, then 0.18mg in early Oct, then 0.26mg one week later, then 0mg (cold-turkey stop) during two weeks at the end of Oct, then 2mg Neupro in mid Nov, then 1.65mg in mid-Dec, then 1.8mg in end Dec, then 1.6mg mid-Jan, 1.4mg mid-Feb, in 1.2mg mid-March, then I tried to go down to 1mg yesterday and I ended up back at the hospital.
* Benzos: During my first week at the hospital in Oct, they gave me high doses of clonazepam and alprazolam to stabilize my withdrawal symptoms. During my second stay, they gave me back both molecules. I went out with clonazepam 0.5mg and alprazolam 3x0.25mg per day. Since then, I slowly reduced my alprazolam daily dose by 0.125mg to reach 0 two weeks ago. Now, they are giving me back alprazolam given my condition.
* Pregabaline: I take 300mg of pregabalin pear day since Nov. In jan, I tried to taper it off, removing 75mg per week. I suffered from an increase of my pain crises when I reached 0mg, and reintroduced my 300mg dose.
* Opioids: I take Tramadol 100mg extended release once per day since Nov, plus one or two 50mg fast action doses in case of pain crises. My neurologist tried to replace it with Buprenorphine last week, and I had a reaction to the molecule (awful sleep paralyses), so now I'm back on Tramadol 2x100mg ER + 50mg fast action doses. He is thinking about putting me methadone.
My current condition is the following: I shake nearly all day long, I have nausea, awful quasi-epileptic and pain crises, high anxiety, and I am depressed. I think a lot about taking my life. My feeling is that I've been tortured for months, every day, and I'm at the limit of what I can endure.
I had all possible medical examinations and I'm in excellent health, except my awful withdrawal symptoms.
Any advice-help would be welcome. Does DA withdrawal kindling exist? Could I suffer from kindling from DAs? Or from benzos? What else could it be? What's so wrong with me? Did they do a permanent damage to my brain by stopping my DA cold-turkey in Oct? Could I get out of this hell one day? Could I fully recover?
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Mikatrap
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It does sound like kindling but DAWS is not likely to cause it. It's definitely from the bezos. What are the doctors doing about your current symptoms of shaking all day, nausea, awful quasi-epileptic and pain crises, high anxiety, and depression? They need to get these symptoms under control. I don't know why they ever gave you both clonazepam and alprazolam.
At this point you need to get your symptoms under control and not try to reduce anything. You probably want to increase your pramipexole a bit to stop the DAWS. After that happens wait a week or two to be sure everything is back to normal.
Then start by reducing the pregabalin by 25 mg not 75 mg every 2 weeks not every 1 week.
Then get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram so you can start with one of the benzos and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Wait for any symptoms to settle before going to the next reduction. Don't be in a hurry as it is going to take a long while.
Only after you are off pregabalin and the benzos tackle your DA. As I mentioned before switch to ropinirole. Multiply your neupro dose by 1.5 to get the ropinirole dose. Be sure they don't give you the ER or XL version.
I agree with SueJohnson. Instead of giving you benzos to settle withdrawals, they should have given low dose opioids.But, first follow SueJohnson advice. Go back on the dopamine agonist and slowly reduce the benzos and then slowly reduce dopamine agonists.
Tramadol is not a good choice to cover severe DA withdrawals, as it's the only opioid that also causes augmentation.
When you are off all benzos safely, then slowly reduce the dopamine agonist, with the help of methadone.
I have been through a bit of this, but not as bad as you. Eventually I requested methadone and my dr agreed.
But I had to be patient and start slowly so my body got used to it. I started on 2.5 mg then after 2 weeks 5 mg. That was too much and I reduced back to 2.5, then 3.45, then 5 mg over a month. Then 6.25 mg. I am now getting about 5 1/2 hrs sleep a night, very broken. I get up twice in the night and do 1,000 steps walking round and round the house, or 30 squats, then I do paint by numbers for about 1/2 hour, then go back to bed. I will soon go up one last step to 7.5 mg methadone and I anticipate 6-7 hours less broken sleep. I feel so much better and I think this is the answer for me.
Wow! The medical community has sure given you quite a beating. Yes, it seems clear that your central nervous system has been kindled. Once that happens you’re going to become dependent on any kind of a drug that affects the CNS whether it is a benzodiazepine or a dopamine agonist. The only way to get off those drugs is through what is called micro tapering. I am micro tapering right now from pramipexole.
I can tell from the dosages that you have indicated that you must be somewhere other than the United States. Here the lowest dose available for pramipexole 0.125 mg. Nevertheless, you would use the same approach with your medication. What you have to do is take the pramipexole tablets to a compounding pharmacist. I’m assuming that they exist wherever you live. In the United States they are different from the regular pharmacist. So, you take your pramipexole tablet to a compounding pharmacist who then renders the solid pill into a liquid form. You will need an extra script for the compounding pharmacist. Usually, the compounding pharmacist does not fill the prescription itself for pramipexole but takes what you give them and then turns it into a liquid. You can then reduce by eliminating micro milliliters per day.
The idea of the micro taper (which can also be used for benzos if you end up stuck on those as well) is to trick the central nervous system into not noticing the loss.
Right now, because of the extreme discomfort you are feeling, your first step is to stabilize. But I see that you are also taking another dopamine agonist Neupro and that certainly complicates the matter. I’m not sure if you are still taking the benzodiazepines. That’s going to complicate matters. I might be able to help you out if you want to carry on a conversation outside the group through email.
And of course, further complicating the issue, they have you on opioids. At some point you should think about suing the bastards who have misprescribed all these drugs! If you’d like to talk to me off-line my email address is johnamurphy@comcast.net
Hi Mikatrap, I feel for you. That’s such an awful time you are going through! You have continued to work through this, day after day after day so you must be a very, very strong person, and I feel sure that you can do this!
You wrote: “Could I suffer from kindling from DAs? Or from benzos?” Yes definitely. I looked up ‘Kindling’ in Wikipedia as I’d never come across this word, and it’s possible for benzos, perhaps DA’s. From the description, I would say you are.
You also asked “Did they do a permanent damage to my brain by stopping my DA cold-turkey in Oct? Could I get out of this hell one day? Could I fully recover?” While permanent damage is possible, I firmly believe in the plasticity of our brains. They are quite amazing in the ability to adapt, grow, change and recover. It just might take some time. So hang in there my friend, you can and will get better!! We are all here for you, thinking of you and hoping that each day you get a bit better. One step at a time, and one day this will all be behind you!
Could you be over-analyzing and under-medicating a life-long panic/anxiety disorder? RLS might be the least of your concerns? It seems your research just adds to the panic. Panic attacks are very disabling, both physically and mentally, and your time might be better spent looking for a regimen that will control it as the Effexor did - only this time with an RLS friendly drug like Wellbutrin. Most people I know with panic disorder (not simply anxiety disorder) take some form of an SSRI and have an anti-anxiety med like Xanax for break through symptoms. Until this disorder is addressed it might be best to stick with whatever level of RLS drugs you’re on presently, be it 1.5mg of Neupro along with 50mg of Tramadol, or whatever. It’s hard for people to recognize and accept panic disorder and most do tend, in the beginning, to look for other possible causes for their symptoms. Once the panic has stabilized you can find the perfect combo of drugs for any restless legs that’s still there. It sounds like you might be confusing and aggravating your docs with all these different theories. Ask them to treat you for panic disorder in an RLS friendly fashion (if you think this is a possibility), as they would anyone else, and forget the notion, for now, of having a plan whereby you lower and stop all these drugs. Weekly counseling is never a bad idea either. It’s nice to be reassured that what you have is all too common and very treatable.
Thanks for your input. But (1) I took venlafaxine 30 years ago because of a PTSD, not because of an anxiety disorder. I should have stopped it long ago, but withdrawing from this awful molecule turned to be a nightmare (ncbi.nlm.nih.gov/pmc/articl..., karger.com/pps/article/87/4..., (2) three psychologists with whom I talked for dozens of hours have concluded that I don't have any anxiety disorder, and (3) the three neurologists that I consulted are convinced that I suffer from a severe DAWS effect aggravated by a post-accute withdrawal symptoms from venlafaxine, i.e. that my dopamine/serotine/noradrenaline systems are out of balance. I had not one single true anxiety crisis when I tapered off venlafaxine, and my withdrawal symptoms were mostly physical. Your post is the reason why I'm alway reluctant searching for help on online forums. You always end up on someone like you, who knows better, who thinks that he can diagnose/analyze you (or solve the climate crisis, or end the war in Ukraine, etc) . And by the way, suggesting to people to take back antidepressants is close to criminal:
* It is more and more clear that the long-term use of ADs is correlated with demencia: mdpi.com/2077-0383/12/19/6342
* And the simple serotine depression theory created by pharma companies to sell their SSRI/SNRI has been dead for long: nature.com/articles/s41380-...
I support freedom of speech. Still, a troll like you suggesting to a person having successfully withdrawn from Venlafaxine and suffering like hell to taper off Neupro because of DAWS, to take back an antidepressant and increase his dose of Neupro should be directly banned from any serious health forum.
I asked you if you think it’s a possibility and that if it is here’s what other people I know do for it. When your house is on fire does it really matter whether it was caused by an electrical short or a smoldering cigarette? If they throw ant-anxiety meds at you when you’re in the hospital then the doctors must think that’s a component. And if your symptoms are the result of withdrawing from an SSRI prescribed for PTSD then no one on here can really help with that. I’m no fan of SSRIs, but I’ve seen people get their lives back with them, and it’s people like you who demonize these drugs that hurt people who need them, even if you don’t. And whether it’s withdrawal from a SSRI or DA, or a true anxiety disorder, the treatment options are about the same. Sorry my friend, but when looking in from the outside, it seems like you’re in full blown panic mode not just 24/7 RLS and extreme fatigue. Muchas suerte
Before this conversation ends let me set the record straight regarding SSRIs. They are good, safe, life-saving drugs that can be taken for an adult lifetime. Millions have already taken them for 35+ years without premature death or dementia. We regularly suggest RLS friendly SSRIs on here and your suggestion that people who are clinically depressed should stop their SSRI is “criminal.” We on here NEVER encourage people to stop SSRIs, nor do we demonize life-saving drugs.
Your article on dementia and SSRIs is far from conclusive and I dare you to find a daily prescription drug (statins, Metropolol) where dementia isn’t alleged. Your article concludes:
“Our results suggest that antidepressant use is associated with an increased risk of dementia in older adults with depression. Future studies are needed to account for the severity of depression and differentiate the effect of depression and antidepressants on dementia risk.”
There is literally zero proof that SSRIs cause brain damage of any kind. And you must know that suicide is one of the leading causes of premature death in Belgium? I can’t imagine anything worse for one’s physical and mental health than the unending, without relief, torture that you describe. I don’t know what the source of this torture is, but it’s not DAWS as Sue implies above as well. And since this torture started before the ridiculously low prescription of benzos you shouldn’t blame or demonize them either, Mr. Scientist.
As a matter of fact, the scientific community is finding a lower incidence of certain cancers among SSRI users. How about you research that? Good night and good-bye.
My pain crises -electric shocks starting from my low back and extending to my whole spine and my legs- are certainly not panic attacks. They started after my first hospitalisation, when they did a cold-turkey stop of my DAs and gave me tons of benzos. They fit well with DAWS, as my anxiety and depression spikes who started not when I stopped Venlafaxine, but when I started tapering off DAs. My symptoms worsen dramatically at each decrease of my dose of Neupro. You don’t need a PhD to conclude that it can only be DAWS. I have the heads of the neurology and psychiatry services of my hospital -one the biggest in Belgium- reached this conclusion, and that told me that taking back an antidepressant would not help me, nor more benzos, and that I need to slow down my tapering off Neupro while increasing my dose of tradonal or move to met methadone to control my pain crises. My anxiety and depression crises settle and disappear a few weeks after taking my dose of Neupro. So yes, I suffer well from DAWS, even if you have a different diagnosis, Doctor. And yes, more and more studies show that SSRIs/SNRIs are not more efficient than placebos, and are dangerous for health, you like or not. And for the record, I would directly take back an antidepressant if my Doctors thought that it could help stopping this torture. Now I can put you in touch with my neurologist and my neuropsychiatrist if you think that they are plain wrong.
You started on an SSRI so very young and you basically grew up and grew to middle-age with that nice little extra serotonin. Serotonin, dopamine, norepinephrine are humans feel good neurotransmitters, even if an imbalance of them are not the direct cause of depression and anxiety.
After 30 years of elevated levels of serotonin I would imagine it must be difficult to know who or what you are and what’s causing what. I would also imagine that being on a DA was of no small help in your final days of the SSRI and when you were off them completely. I wouldn’t be surprised if DAs are sometimes prescribed for withdrawal. And your RLS symptoms were very much improved just by being off the SSRI as well I bet. So I think you took a bigger hit than normal when you drew down on the DAs because they were propping up your sense of well-being post SSRI, as well as alleviating some RLS. It’s a tough call.
DAs do cause a physical change to the brain. They down-regulate our calming D2 receptors and up-regulate the more excitatory D1 receptors. And we with RLS already have small and few D2 receptors compared to the non-RLS world. So DAs are really a bad choice for us. So here you are, off the SSRIs, and with down-regulated receptors, all at the same time.
For whatever it’s worth, the SSRI, I believe, acted as a counterweight to the DA. As horrible as SSRIs make the symptoms of RLS, they do no harm to our dopamine receptors as the DAs do and may actually up-regulate them because they act as a dopamine “antagonist,” just the opposite of the down-regulating agonists. One of my dreams is to find a somewhat natural, short acting dopamine antagonist that can be taken during the day and that will up-regulate our lousy receptors without worsening RLS symptoms at night.
Back to you. I believe that the SSRI acted as a counterweight while you were taking the DA such that your receptors were not down-regulated as much as someone who was not on an SSRI. You are definitely stronger than any mere mortal I know. If I had been on an SSRI and wanted to withdraw, say because I found it demoralizing to rely on a drug for my emotional well-being, I would reduce by a crumb and stay on that reduced level for six months to a year and celebrate and brag to everyone I know how I reduced my dose. Then comes the next crumb and the next round of bragging rights. You see, I’m in no hurry when it comes to stuff like this. AND, if I got to a pretty low dose (probably at age 80 given my slow pace) and felt good I would just stay at that low level for the rest of my life and not find it demoralizing.
The problem comes in when the SSRI is aggravating the RLS. I would have to switch to an RLS friendly drug then begin my very slow descent with all the usual bragging and celebration. Life is so crazy hard and we’re all broken, it’s just a matter of degree. I’m not one to readily give up a life line. So I take my hat off to you. But it really is time to stop the suffering. Enough being the martyr. As Sue stated quite well “what the heck are your doctors doing for your pain, nausea, chills, electrical current feeling.” My cupboard would be chock full of RLS friendly anti-nausea meds, Gabapentin, Pregabalin, Trazodone, Metropolol, Advil, RLS friendly muscle relaxants, Wellbutrin, codeine, tramadol, Klonopin, Xanax, Pepto bismol and I would mix and match as needed.
As a matter of fact, my cupboard does have all those drugs sans the opiate Wellbutrin and GABAs . When I don’t feel good, be it anxiety or aches and pains or RLS, I run to that cupboard. Who says SSRIs or trazodone or benzos have to be taken every day. How about as needed? Tiny amounts of Trazodone are quite sedating. Advil is a great analgesic and I find it to be sleep inducing. So far my cupboard has not failed me. One night it came close. I was taking half a trazodone every night for several months - for a too long reason to go into now. My RLS was getting worse and I didn’t make the connection AND I LOVED the way I felt on it so I just upped my dose of iron during this period. Then came the tipping point. Not only was my RLS terrible, but so was my self diagnosed small fiber neuropathy and I couldn’t sleep. I ran to my cupboard and used every brain cell to figure something out since the iron and klonopin had failed me. I know that calcium and potassium in large enough quantities cause a pop of dopamine. I took my hardly used powdered calcium citrate and potassium (in an electrolyte solution) and chugged down the maximum daily dose. It worked. Before I drifted off I remembered thinking “you idiot it’s the trazodone.” I stopped the trazodone next day and within about 5 days I was back to baseline and reported my findings on here, but was very sad over the loss of my beloved trazodone.
I’m afraid that we with RLS are forced to go through this life mostly drug free because everything seems to make the symptoms worse. Yet there are some we can use and you should have each and every one at your disposal. Plus, my family is great. They ridicule me mercilessly. When I’m having a bout of insomnia my husband always reminds me it’s nothing more than a mind fvck. He’s a goofball but he’s right. And my son loves to grab the back of a chair really tightly and ask “who am I.” Of course he means me because I white knuckle it whenever there’s turbulence on a plane. They’re merciless and I would have it no other way. So maybe I tend to do the same.
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Newbie here wanting some help 🤔.
help with restless legs meds. 
I am new here and from Austria
Pregabalin dose and is pramipexole diagnostic for rls?
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