Mikatrap: My Venlafaxine withdrawal in the context of a severe restles legs syndrome

October 2, 2023

Hello,

I’m 49. I’ve weaned myself off Venlafaxin 2 months ago, after a 6 months long phase of tapering, and I’m now struggling with pretty bad withdrawal + restless legs symptoms.

But let’s start with the beginning. At age 19, I had a major nervous and physical breakdown out of the blue, and after 2 years of medical wandering, I was diagnosed at age 21 with fibromyalgia and put on Venlafaxin XL, first at a dose of 37.5mg, gradually increased to 150mg. Despite its adverse side effects (sweating, weight gain, dry mouth, etc), the drug helped me to recover and to have a normal, happy, and productive life. Along these 28 years under Venlafaxin, I changed my dose from time to time as a function of my condition, with a minimum of 37.5mg and a maximum of 150mg. These last 10-15 years, I maintained an average dose of 75mg, with some increases to 112.5 mg when I felt less good. Each time I tried to reduce the dose to less than 75 mg, I felt terrible and quickly got back to 75mg.

Five years ago, I consulted a neurologist expert in sleep medicine for an excessive fatigue. He diagnosed me with obstructive sleep apnea (OSA) and restless legs syndrome (RLS). This RLS appeared in my thirties. First, it was mild, but it became more severe with time. When I consulted the neurologist, RLS was regularly waking me up at night, damaging my sleep quality. The sleep doctor put me on pregabalin and then on gabapentin, which are both antiepileptic drugs used frequently for RLS. Both had unbearable side effects to me: excessive tiredness, extremely vivid nightmares, memory losses, etc. He then put me on pramipexole, a dopamine agonist. This drug worked well at first, but it quickly made things much worst by making RLS symptoms appear during evening, and even during daytime, a well-known phenomena called ‘augmentation’. Sitting still in a plane or in a cinema became a horrible ordeal to me, and this impacted a lot my life quality. Furthermore, the combination of pramipexole and venlafaxine led me to develop some depressive symptoms. With one drug acting on serotonine and noradrenaline, and the other on dopamine (pramipexole), I think that my brain was struggling to reach a stable chemical equilibrium. Still, I also had to endure a lot of stress during these last five years (work, divorce), so it is hard for me to know the cause of the aggravation of my mental condition.

My neurologist told me that Venlafaxin was known to trigger RLS, and that the use of this drug for decades could be the very cause of my RLS. He encouraged me to try to wean myself off the drug. The plan was to quit Venalafixin, to assess the situation, and then to try to wean off pramipexole, with the hope that (1) my fibromyalgia was a thing of the past, and (2) my brain would eventually recover its chemical equilibrium and that, without venlafaxin, RLS would go away. Nice plan, in theory.

So I started tapering Venelafaxin at the beginning of 2023, starting from a dose of 112.5 mg. Reading the advices given by this forum, I realize that I did this tapering very badly. I first lowered the dose to 75mg, alternating 112.5 mg and 75mg one day and the other, and then using 75mg every day after a few weeks. I then kept 75mg for a month or so, and then started alternating 75mg-37.5mg for a few weeks, then moved to 37.5mg every day, stayed at this dose for a few weeks, and then started taking my 37.5mg dose every 2 days, then every 3 days, to eventually quit completely Venlafaxin at the beginning of August.

This tapering has been plain awful, bringing me into hell many times. Each time I decreased my dose of Venlafaxin, my RLS symptoms disappeared for a few days, but I was a wreck experimenting brain zaps, confusion, sweating, nausea, diahrea, extreme anxiety, weeping, depressive ideas, headaches, etc. This has been a nightmare. But I’ve been through it. At the end of August, I was starting to see my withdrawal symptoms reduced and to feel better, recovering energy, and positive thinking, without any hint of a coming back of fibromyalgia. I thought that I had won the battle. Even my RLS symptoms were improving, and I was ready to start my withdrawal of pramipexole.

And then, on Sept 2, all fell apart. I felt very anxious and weak in the afternoon. The day after, I woke up with nausea, belly pain, and an extreme tiredness combined to a totally depressed mind. I felt like I was dying, and I went to the ER. The blood test just showed a mild increase of bilirubine. The ER doctor concluded that I was probably a bit sick, maybe a gastro-enteritis, and that my condition was worsened because of my withdrawal of Venlafaxin. During one week, my condition did not improve. After an abdominal echography, my family doctor concluded that my digestive and bilirubine problems could be related to a gallbladder stone episode (a small stone in my gallbladder could have moved and impacted my digestion), but this did not explain why I was feeling THAT bad. Then, in a day, my condition improved drastically, and I was back in good shape. It lasted two weeks.

And then, one week ago, the same thing happened: I woke up with nausea, tremors, and extreme weakness. I went again to the ER with the feeling that I was dying, and this time my blood test was perfect. I had an abdominal scanner that showed nothing except a few small stones in my gallbladder that do not explain my symptoms. Physically, I have felt weak since then, even if a bit better from time to time. During a few days I couldn’t nearly eat at all because of huge nausea. Now, it's getting better. Today, no nausea and no diarhrea. Mentally, I still feel overwhelmed with anxiety, negative thinking, the certainty that I’m about to die. My RLS symptoms are back at full force. I weep for anything, e.g. just at looking at the picture of my son. I have from time to time the feeling that all is lost, that there’s no hope left, that the rest of my life will be pure suffering.

I have seen several doctors over this last month, made several examinations, and the conclusion is that I may have had a minor gallbladder issue, but nothing that could put me in such a bad condition. The only explanation that makes sense to me is that I’m experiencing a post-acute Venlafaxin withdrawal symptom. I discussed with my neurologist today, and he proposed me to take another antidepressant to get better (I don't remember the name he mentionned), and to replace pramipexole with a non-dopaminergic treatment. On Friday, I'm gonna have my gallblader remove through surgery. The plan is to benefit from the fact that I will be under strong pain killers for a week afterwards to taper off ramipexole and replace it in parallel with pregabaline. I will also have an iron injection. Apparently, it can alleviate RLS for a fraction of the sufferers. It is worth a try. I will start the new antidepressant after the surgery.

Once I will get better, my plan is also to see a psychologist to get some help with my withdrawal symptoms, but also to do all I can to relax and take care of me: resting, reading, meditating, walking in Nature, etc. Reading the many testimonials on this forum telling stories very similar to mine helps me a lot. They give me the feeling that I’m not crazy, that what is happening to me is not just ‘in my mind’. I have taken Venlafaxin for 28 years, plus Pramipexole during these last five years to fight against the RLS induced by Venlafaxin. Now I see that it will take time for my brain to ‘rebuild itself’ after this withdrawal. I know that the withdrawal of pramipexole will also be plain awful. But I have to do it. My only hope is that my brain will heal itself, neuron by neuron, serotonine, noradrenaline and dopamine receptor by receptor, and that there is a light at the end of this awfull tunnel.

In the mean time, I would welcome any advice to help me go through this and to let these brain drugs behind me forever.

Edited October 3, 2023 by FireflyFyte
Updated title and added breaks

October 3, 2023

Hi Mikatrap,

Welcome to SA. Please summarize your drug history in your signature by following the directions at How to Summarize Your Drug History in Your Signature. You may need a computer in order to complete this.

Withdrawal can often cause digestive issues so there is certainly a chance that what you have been experiencing is directly related to your taper of Venlafaxin. You can read more about these symptoms related to withdrawal at

What is your current symptom pattern?

Thanks,

Firefly

October 4, 2023

Hi Firefly!

Thanks for the answer. I just summarized my drug history in my signature as suggested.

I stopped Venlafaxine at the beginning of Aug. For a month, I have been pretty well, except for the first days after my last dose. Then on Sep 2, I woke up with severe nausea, sweating, tremors, weakness, high anxiety, extreme emotivity, very dark thoughts, strong RLS, diahrea, and confusion. It lasted for a week, then I went back to normal. And then, 10 days ago, the same thing happened. Since a few days, I start to feel better, even if my anxiety is still high, probably because I'm gonna have surgery two days from now (gallbladder removal). My RLS has improved. I feel prettty good in my mind for a few hours per day now. I have no more nausea, I eat better, and my digestive problems are improving. I still feel a bit weak, confused and super-stressed sometimes, but clearly I'm back on an ascending trend.

My plan (suggested by my neurologist and my general practitioner) is to wait for the surgery, then to try to quit Mirapexin (pramipexol extended release form) during my convalescence at home, using Tradonal (an opioid) to mitigate the acute withdrawal phase (= exacerbation of RLS). Indeed, when you take dopamine-agonist, your dopamine receptors get activated without the need to release dopamine, so it starts to decrease its production of dopamine receptors and dopamine to reach a new equilibrium. This is the cause of the RLS augmentation symptoms that I experienced during these last years: with less dopamine and dopamine receptors, RLS symptoms tend to worsen and to appear during day. And this is why my RLS symptoms are going to turn havoc when I will tapper off the dopamine-agonist: my brain will have to adapt and start doing more receptors and dopamine, and it can't do it in a day...

My doctors want also to put me back on an antidepressant because they don't believe that the post-accute withdrawal symptom is a thing 😑 For them, I feel that bad only because my brain has a "defect" and can only work normaly with an antidepressant. But I won't take it (if possible). After a few weeks off pramipexol, my RLS should calm down and converge towards its base level. My hope is that, without the triggering action of Venlafaxine and pramipexol, this base level will be mild, or even null. If so, I will be able to quit Tradonal, and I will just have to wait for my nervous system to heal itself. Eventually, I should be 'drug-free' and good.

Thanks,
Mikatrap

October 4, 2023

5 hours ago, Mikatrap said:

I stopped Venlafaxine at the beginning of Aug. For a month, I have been pretty well, except for the first days after my last dose. Then on Sep 2, I woke up with severe nausea, sweating, tremors, weakness, high anxiety, extreme emotivity, very dark thoughts, strong RLS, diahrea, and confusion. It lasted for a week, then I went back to normal. And then, 10 days ago, the same thing happened. Since a few days, I start to feel better, even if my anxiety is still high, probably because I'm gonna have surgery two days from now (gallbladder removal). My RLS has improved. I feel prettty good in my mind for a few hours per day now. I have no more nausea, I eat better, and my digestive problems are improving. I still feel a bit weak, confused and super-stressed sometimes, but clearly I'm back on an ascending trend.

It sounds like you are experiencing the windows and waves pattern of withdrawals. You can read more about this at The Windows and Waves Pattern of Stabilization.

5 hours ago, Mikatrap said:

My plan (suggested by my neurologist and my general practitioner) is to wait for the surgery, then to try to quit Mirapexin (pramipexol extended release form) during my convalescence at home, using Tradonal (an opioid) to mitigate the acute withdrawal phase (= exacerbation of RLS).

We would advise tapering the Mirapexin versus stopping it could turkey. We have some information on this tapering at tapering dopamine agonist drugs.

While we don't recommend many supplements, one that we do recommend and can help with RLS is Magnesium, nature's calcium channel blocker.

5 hours ago, Mikatrap said:

My doctors want also to put me back on an antidepressant because they don't believe that the post-accute withdrawal symptom is a thing 😑 For them, I feel that bad only because my brain has a "defect" and can only work normaly with an antidepressant. But I won't take it (if possible).

Spend some time reading here and you will see countless stories from other members whose doctors did not "believe" in withdrawals and used those symptoms to add/change medications.

October 10, 2023

Small update. My gallbladder surgery went well, but my nausea is getting worse. I have nausea most of the time now, day and night, often with chills and tremors. My doctor is lost. He thought that removing my gallbladder would solve my nausea issue. Today, I see a gastroenterologist to plan a gastroscopy. I should also do an IRM.
I quit Venlafaxine two months ago, and things are getting worse and worse. I now doubt that my condition is related to Venlafaxine. I feel so bad that I get more and more convinced that I have a cancer or something like that, that doctors are just too bad to identify my illness, and that I’m living my last moments on Earth. I feel hopeless.

October 10, 2023

4 hours ago, Mikatrap said:

I quit Venlafaxine two months ago, and things are getting worse and worse. I now doubt that my condition is related to Venlafaxine. I feel so bad that I get more and more convinced that I have a cancer or something like that, that doctors are just too bad to identify my illness, and that I’m living my last moments on Earth. I feel hopeless.

Emotional spiraling can also be a part of withdrawals. I would recommend checking out Non-drug techniques to cope with emotional symptoms as you work through a diagnosis.

October 21, 2023

Some update here. I had bunch of exams and the good news is that I do not have cancer or any similar awful disease.

The bad news is that the I suffer from DWAS: Dopamine-Agonist Withdrawal Syndrome, and I that I have to get these awful DA out of my system now.

My venlafaxine withdrawal had been hard, but it was a success. After it, I was fine, until my nervous system crawshed when I tried to stop dopamin agonist two weeks later following the advice of my neurologist. It put me into DWAS whose symptoms are severe depression, suicidal idiation, intense sweating, asthenia, agitation, extreme anxiey, pain, diahrea, nausea, vomitting, drug craving, etc. I had ALL of them. In fact, DAWS can be as severa as cocaine withdrawal. I tried to hang out as much as I could, but then I had no other choice to ask a friend of mine who is in the administrative board of my hospital to do all he could to hospitalize me to in a psychiatic unit. Before that, my general practionner send me to a gastro surgeon that removed me my gallbladder because he thought that my nausea came from it (!), and then my general practinioner and my neurologist told to get back to AD because 'my brain was clearly not cabled to work without AD". None of them had heard about DAWS. Here in the hospital, i finally found someone that knows well DA and DAWS, diagnosed me clearly with DWAS, and put me straight away on cold turquey DA withdrawal under the help of myorelaxant, anxiolylitic, and low-doses tradodal in cas of crises preventing me to sleep. SHe told me that she prefer to stop DA all at once here at the hospital, under the care and control of her team, than to let me taper it off for months at home.

So now I'm back with the DA withdrawal symptoms. They should abate after a few weeks.

Edited October 21, 2023 by Mikatrap

October 21, 2023

5 hours ago, Mikatrap said:

Some update here. I had bunch of exams and the good news is that I do not have cancer or any similar awful disease.

The bad news is that the I suffer from DWAS: Dopamine-Agonist Withdrawal Syndrome, and I that I have to get these awful DA out of my system now.

My venlafaxine withdrawal had been hard, but it was a success. After it, I was fine, until my nervous system crawshed when I tried to stop dopamin agonist two weeks later following the advice of my neurologist. It put me into DWAS whose symptoms are severe depression, suicidal idiation, intense sweating, asthenia, agitation, extreme anxiey, pain, diahrea, nausea, vomitting, drug craving, etc. I had ALL of them. In fact, DAWS can be as severa as cocaine withdrawal. I tried to hang out as much as I could, but then I had no other choice to ask a friend of mine who is in the administrative board of my hospital to do all he could to hospitalize me to in a psychiatic unit. Before that, my general practionner send me to a gastro surgeon that removed me my gallbladder because he thought that my nausea came from it (!), and then my general practinioner and my neurologist told to get back to AD because 'my brain was clearly not cabled to work without AD". None of them had heard about DAWS. Here in the hospital, i finally found someone that knows well DA and DAWS, diagnosed me clearly with DWAS, and put me straight away on cold turquey DA withdrawal under the help of myorelaxant, anxiolylitic, and low-doses tradodal in cas of crises preventing me to sleep. SHe told me that she prefer to stop DA all at once here at the hospital, under the care and control of her team, than to let me taper it off for months at home.

So now I'm back with the DA withdrawal symptoms. They should abate after a few weeks.

Sorry for the typos. Hard to think clear under DA withdrawal...

October 25, 2023

Some update. I have been clean from DA for five days, and I had zero RLS crisis and slepts like a baby, probably because of the Valium and Rivotril that they gave me to hold out with the tapering. The only DA withdrawal symptoms that I had this week were some crying fits lasting a few minutes and then stopping. I'm now tapering off valium and rivotril, and if all goes well, I will go back home totaly clean on saturday, or on monday at the latest if some RLS crises come back when I totally stop rivotril.

A neurochirurgian made me a scanner and concluded that most of my RLS are probably not "real RLS" but some lombalgy due to some mild damages to my spine. I will do kinesitherapy, ostheopay to reinforce my low back, and I should help a lot. The rest of my RLS, if any, should go away with time, as my brain will heal from 28 years of venlafaxine. With time, I should totally recover from these 28 years of venlafaxine and 4 years of dopamin agonist. To speed up the healing, my doctors sugggested me to do meditation, sport, fun things, and to let time make its work.

So the good news now is that I'm 100% offVenlafaxine and 100% off dopamine agonist. In a few days, I will also be 100% off benzo (valium and rivotril), i.e. 100% clean. It should take months for my brain to recover completely after all this ****, but it will. I'm not 100% cured yet, but I see an end to this awful tunnel.

October 28, 2023

Back at home, and feeling again like ****. Crying a lot. Weak. Tired. Nausea. Cold . Hot. Sweating. Barely able to drive or to focus. Meditation does not help. Sport helps a bit, but after I’m exhausted. I’m now « clean » from Venlafaxine and pramipexole, but how can I live, work, take care of my son, etc., if my brain can’t do enough dopamine, serotonin and noradrenaline by itself

? Should I wait years for my brain to heal? I’m not even the shadow of the man I was a year ago, before deciding to get clean of AD and DA. I was an healthy man, a successful scientist, a good father to my son, and a loving partner to my girlfriend. My only health problem was restless legs. And now I’m a 49 years old crying weeping zombie unable to take care of anything. And my restless legs are not even cured, even if my new neurologist call it now a « spine problem ». I consider more and more that my life is behind me. My psychiatrist gave me an appointment in a month to evaluate my evolution. And now what? I wait a month in this state?

December 22, 2023

Some update here. After my last post, my condition was so bad that I had to be hospitalized again, this time in another service (neurology instead of psychiatry). I stayed there 2 weeks. They told me that dopamine agonist (DA) should never be cold turkey stopped, and that by doing so, their colleagues from psychiatry have made my DAWS syndrome much worse. So they had to give me back some DA (Neupro 2mg patch), and to add benzos (alprazolam, rivotril), opioids (tradonal), and pregabaline to make me feel better. At the end, I did feel better enough to leave the hospital, but I'm still experiencing plenty of anxiety crises, pain crises, and depressive outbursts, every day. Their plan is to taper off the Neupro over a year, and then to taper off the benzos and the opioid. I live day by day, facing several crises per day, and trying to have a few happy times when possible. I can't go to work anymore, I work from home. I have a very hard time to take care of my 12-yr old son (I'm single). I try to do sport (workout + walking) as much as possible, meditation, CBT therapy, everything possible to get better. My neurologist tells me that I just have to be patient, that my brain will heal itself at the end. It's hard to believe. It's so hard to be in this state. I feel like a wreck. Sometimes, I can't stop crying like a baby in front of my son. I'm not sure I did well to taper off venlafaxine and trying to taper off DA. Before doing so, my live was so much better. Now it's 90% suffering.

January 25, 2024

As a reminder, I took Venlafaxine for 29 years, from 1994 to 2023. It was given to me to treat a nervous breakdown that was diagnosed as “fibromyalgia” but that was probably an ill-diagnosed PTSD. During these 29 years, each time that I wanted to quit the drug, the severity of the withdrawal symptoms led me to the conclusion that I could not function without it. And this was also the opinion of my GR. So, I kept taking it, wrongly convinced that I had an innate defect in my brain chemistry, and that only taking an AD could make me happy and functional.

A few years ago, I was diagnosed with a “restless legs syndrome” (RLS). My neurologist told me that it had probably been caused by the long-term use of Venlafaxine. He treated my RLS with another type of neuro-drug, a dopamine agonist (DA). My RLS improved a first, but then it degraded, and I had to take more DA to keep it at bay. This is a well-known phenomenon called “augmentation”. Eventually, I decided to withdraw from Venlafaxine and from DA. I started with Venlafaxine. I tapered it off gradually from Feb to Aug 2023. It was painful, but I succeeded, and I was feeling rather well at the end. Then I started to taper off my DA, boldly removing 50% of the dose at once. Big mistake. My nervous system directly crashed headfirst. Long story short, I ended up at the hospital, two weeks in a psychiatric unit followed by two weeks in a neurology unit. In the psy unit, they put me on benzos, gave me back my full DA dose, then withdrew it completely from one day to the other, and kicked me out. Back home, I could enjoy big tremors, crying spells, extreme anxiety, extreme RLS, neurological pain attacks, but also serious suicidal thoughts. After a week of extreme suffering, I ended up in the neuro unit of the same hospital. There, they put me back again on DA (rotigotin 2mg) and added a mix of benzos (clonazepam 0.5mg, alprazolam 0.75mg), anticonvulsants (pregabalin 300mg), and opioids (Tradonal 100mg) for good measure. I went out of the hospital end Nov 2023 in a better state than on my way in, with no more RLS, but I was still a mess, both at the physical and mental levels, and totally knocked down by all the depressing drugs I was taking.

Since then, I have managed my withdrawal from all these drugs. Well, a neurologist assists me, but he admitted right away that he doesn’t know which drug should be stopped first, and at which rate, so I decided to take care of the withdrawal myself, by trials and errors combined to the information that I could find online, including on this very helpful website. Every month, I reduce the rotigotin by 10% (my current dose is 1.6mg) and the alprazolam of 0.125 mg (my current dose is 0.5mg). I also stopped pregabalin within these last 4 weeks, removing 75mg per week. Once I will have quitted alprazolam, I will start reducing clonazepam. I intend to keep Tradonal up to the end of my withdrawal of rotigotin, as I can expect a lot of pain and the return of intense RLS when my DA dose will be low enough. Once DA-free, my dopaminergic system should heal itself, and my pain and RLS should cool off and (hopefully) disappear.

I’m experiencing in full the wave-and-window pattern described on this website. I can be fine a few days (window), then I have a wave of depression-anxiety-weakness-exhaustion for a few days, etc. And I can also experience such cycle on the same day. Nevertheless, I can see that globally, my windows are longer and better, that my waves are less and less dramatic and painful, and that my cognitive functions are slowly coming back. Meditation, breathing techniques, walking, workout, and the support of my loving one help me a lot in this struggle. I’ve also consulted three shrinks: two to help me master my anxiety crises, and one to share my trauma with someone. I also force myself to work and to move, whatever my condition. Indeed, I know now from experience that the worst thing I could do in a wave is to take a break, sit down and do nothing. This is the best way to end up enjoying a massive depression-anxiety crisis. The key to my healing is the opposite: to do constructive and enjoyable things, and to (try to) master my thoughts.

I know that, eventually, I will end up healed and OK, but also stronger from all this. Well, I know it when I’m in a window. In the peak of a strong wave, I can still experience some despair. But it is a less dark despair than it used to be, and suicidal thoughts are totally gone, which is a big progress.

January 25, 2024

Can you please update your signature to reflect your recent drug changes?

January 26, 2024

16 hours ago, FireflyFyte said:

Can you please update your signature to reflect your recent drug changes?

Done!

March 26, 2024

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 restless legs syndrom (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.

March 27, 2024

Hi Mikatrap,

I've moved your new post back here.

It is best to keep everything related to yourself in one place. This will make it easier for those trying to assist you.

Thanks, Emonda

March 28, 2024

@Mikatrap Sorry to hear about your troubles. From your signature one thing stands out is that you are making too many changes too frequently. I understand some of it might be to avoid certain side effects from medicines, but even the taper amount of the meds seems quite high. Please look up 10% tapering protocol

Also it seems you are tapering two drugs at once, please see below so you get an idea.

So please have a read of these sources if you havent already and do review your end goal of 0 mg as it seems very short time and it may cause more problems then it will solve.

March 28, 2024

On 3/26/2024 at 1:49 PM, Mikatrap said:

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.

We are a site dedicated to helping people safely taper off of psychiatric medication. Questions regarding increasing dosages and/or trying new medication should be discussed with your doctor.

7 hours ago, Chaos9211 said:

From your signature one thing stands out is that you are making too many changes too frequently. I understand some of it might be to avoid certain side effects from medicines, but even the taper amount of the meds seems quite high.

I agree. Making frequent changes does not give your system time to adjust.

April 10, 2024

As described in my other posts, my dopamine agonist withdrawal is awful. I suffer from DAWS (Dopamine Agonist Withdrawal Syndrom) worsened by my recent withdrawal from venlafaxine that I took for 29 years. I've done several stays in an hospital neurology service. They are doing their best to help me, but something is awfully wrong. I got out of a 10-days stay at 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. My condition is clearly worsening. I suspect that it may have to do with the phenomenon of "kindling" that is well documented for benzos.

At the origin, I suffered from mild RLS (Restless Legs Syndrom). In 2021, my neurologist put me on pramipexole. 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?

April 10, 2024

You can read about kindling at Hypersensitivity and Kindling. You have made a lot of medication changes in the last six months so you may well be experiencing some effects of kindling.

Can you list your current medications and the time of day that you take them?

June 3, 2024

On 4/10/2024 at 4:57 PM, FireflyFyte said:

You can read about kindling at Hypersensitivity and Kindling. You have made a lot of medication changes in the last six months so you may well be experiencing some effects of kindling.

Can you list your current medications and the time of day that you take them?

Morning: bisoprolol 1.25mg, tramadol ER 100mg

Lunch: pregabaline 75mg

Diner: pregabaline 225mg

Evening: rotigotine patch 1mg, clonazepan 0.5mg, tramadol ER 200mg, Wellbutrin 150mg

My neurologist has increased my dose of tramadol as my pain crises intensified, and he introduced a new antidepressant to try to control my anxiety and depression.
His diagnosis is a withdrawal syndrom from the combo dopamine agonist (rotigotine) + SNRI (Venlafaxine). In other words, my dopamine, serotonine, and noradrenaline systems are damaged.
The goal is still to remove all the drugs once I completed my withdrawal from rotigotine.
My current symptoms are: extreme anxiety, depression, crying spells, tinnitus, tremors, nausea, pain crises (lower back + legs).
Given the continuous degradation of my condition since I started tapering off rotigotine 6 months ago, I'm starting a pause of 3 months with any further dose reduction. I hope that it will help my nervous system to stabilize.

June 4, 2024

On 3/28/2024 at 3:16 PM, FireflyFyte said:

We are a site dedicated to helping people safely taper off of psychiatric medication. Questions regarding increasing dosages and/or trying new medication should be discussed with your doctor.

The logo of the website mentions "peer support for tapering & withdrawal syndrome". I suffer from a severe venlafaxine + rotigotine withdrawal syndrome, and I'm still tapering off rotigotine. I'm not eager to take more drugs, but my symptoms are so severe that I don't have the choice.

June 4, 2024

11 hours ago, Mikatrap said:

I suffer from a severe venlafaxine + rotigotine withdrawal syndrome, and I'm still tapering off rotigotine. I'm not eager to take more drugs, but my symptoms are so severe that I don't have the choice.

You are well within your right to try additional medications to address your withdrawal symptoms but we cannot advise on that route so recommend speaking to a medical professional if this is the route you want to take.

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Mikatrap: My Venlafaxine withdrawal in the context of a severe restles legs syndrome

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