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Restless Legs Syndrome

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Suffering like hell since I tried to taper off a dopamin agonist

Mikatrap profile image
16 Replies

Hi all,

From Feb to Aug, I succesfully tapered off Venlafaxine extended release that I had taken for 28 years. I had started taking this medicine when I was 20 after what was probably a post-traumatic stress episode diagnosed as 'fibromyalgia' by my doctors back at that time. I tried several times to stop venlafaxin before, but I failed each time because this antidepressant has very strong withdrawal symptoms and is one of the hardest to stop. I deciced to stop it this year whatever the pain because my neurologist told me that it was probably the cause of my RLS, or at least it was exacerbating it.

I then tried to taper off Mirapexin extended release (0.26mg), my treatment for my RLS that was causing me a severe augmentation problem.

Two weeks after having divided my Mirapexin dose by 2, I had a sudden nervous system crash with tremors, depressive ideas, high anxiety, high RLS, nausea, etc. After some weeks of medical errancy, I was hospitalized in the psychiatry service of an hospital. There, they gave me back my full dose of Mirapexin, calmed me down with benzos for a few days, then they stopped completely the Mirapexin from one day to the next. For a few days, I was fine, but when I got out of the hospital, I started to have extreme anxiety attacks, extreme RLS, suicidal ideas, tremors, pains. My guess is that this cold turkey tapering off a dopamine agonist had put me into DAWS (Dopamine Agonist Withdrawal Syndrome). The funny (?) thing is that the doctors in the hospital knew nothing about DAWS...

One week later, my condition was terrible and I was again hospitalized, this time in neurology. They gave me back some dopamin agonist under the form of Neupro 2mg (patch version, known also as rotigotin). They also gave me benzos (alprozolam 0.25mg three times a day + rivotril 0.5mg at night), tradonal 1mg extended release, and pregabalin 4x75mg to calm down my extreme anxiety and panic attacks, and my RLS pain. After a week, I was better and I got out of the hospital with the following plan:

- wait a few weeks for my condition to stabilize

- start tapering off very slowly the Neupro, the benzos, and the opoid (tradonal)

- End goal, within a year: treating my RLS only with pregabaline and/or dipyrimadole.

The problem is that I was fine for about 10 days, and then my anxiety attachs came back, stronger than ever, as my RLS pains. It's like my body got quickly used to my new treatement and is screaming 'give me more benzo, more dopamine agonist, more opoid!'.

I have been suffering awfully for three days in a row now. My doctors (a neurologist and a psychatrist) find this new crisis 'normal', in the sense that my evolution is supposed to go through highs and lows. They told me to take my tradonal 1mg when I have a RLS extreme pain attack instead of at night when it happens, and possibly to take one more alprazolam 0.25mg if my anxiety is out of control.

Their explanation to my extreme condition is that I'm combining DAWS and a venlafaxine withdrawal syndrom, meaning that my dopaminergic, serotoninergic and nordadrenalinergic systems are all three out of balance. They say that it will take months to get my nervous system back on its feet. As I take benzo, my GABA system is now also out of balance...

Before all that, I was a very happy person, with no high anxiety or depressive ideas.

Any opinion on my situation, and my current treatment, and any advice on how to get better is welcome.

And if someone on this forum knows a RLS expert in Belgium that could help me, I'm interested!

All the best

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SueJohnson profile image
SueJohnson

Tradonal contains tramadol which is used for RLS and the usual effective dose according to the Mayo Updated Algorithm on RLS is 100 to 200 mg so I doublr your 1 mg is doing you any good even for pain.

The usual withdrawal symptoms after withdrawal from venlafaxine is 3 to 4 weeks. It can last a little longer but 3 months? I doubt you are still suffering from that.

I'm not sure why they gave you both drugs for anxiety. rivotril has a half like of 40 hours and alprazolam 11 hours. I would increase them until your anxiety is under control. You will later have to very slowly withdraw from them, but not until after you withdraw from neupro.

So get your anxiety and pain under control and add 25 mg of ropinirole or more to get your RLS under control. Then wait a couple weeks to make sure everything is stabilized.

Then it is time to reduce your Neupro. To come off the patch ask for 3 mg of ropinirole tablets and reduce by .25 mg every 2 weeks or so. (to reduce using the patch you would have to cut a 1 mg patch into sixths which would be hard to do since a 1 mg patch is the equivalent to 1.5 mg of a ropinirole tablet which is why you need 3 mg to replace it). You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your tradonal dose temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is.

The beginning dose is usually 75 mg pregabalin although if I remember you' re already on it. Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 25 mg pregabalin every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Once you get your RLS under control for a week or so, you can start slowly weaning off the benzos.

Mikatrap profile image
Mikatrap in reply to SueJohnson

Thanks Sue.

I meant tradonal 100mg, not 1mg. And I take 4x75 =300 mg of pregabalin per day.

Thanks

Michael

Baz33 profile image
Baz33 in reply to Mikatrap

Hello ....that sounds very similar to my pathway although mine was on a much smaller scale , 9 months after violent rls and augmentation, withdrawal from pramiplexol and CITALOPRAM, swapping gabapentin for pregablin and 1 iron infusion......I am now in balance. Although my legs require 200mg of pregabalin, I am no longer in what I can o ly describe as black depression...my energy levels are great ,my mood stabilised and my legs although rumble, the volume is a 5 ,compared to 105 violence .

Your system has been through a war ,it will need time to recalibrate.

Avoid all possible triggers,eat well,rest until your medication helps you to stabilise.

Best wishes,it's a rough ride .

Mikatrap profile image
Mikatrap in reply to Baz33

Thank you very much for the kind words. That's so reassuring to read that there could some light at the end of this dark tunnel.

ChrisColumbus profile image
ChrisColumbus

As far as experts in Belgium go the European Alliance for Restless Legs Syndrome (EARLS) is in Brussels, but while they list support groups and experts in e.g. France, Netherlands and Germany they don't appear to list anyone in Belgium. If no one responds with local info here - on the EARLS/RLS-UK forum- it might be worth contacting them:

earls.eu/contact

DesertOasis profile image
DesertOasis

Michael, at your last post you were sleeping well through-out the night, with fairly low doses of non-DA drugs. That’s the ultimate end goal we try to get people to after coming off a DA and going through DAWS. Fortunately, you were also on a relatively low dose of the DAs during the 3 years you were on them. I’m not a doctor, but I think at this point your main problem is continuing withdrawal symptoms from the Effexor, and to some extent, a return of symptoms you had before ever starting the Effexor.

Are you in a support group for SSRI/SNRI withdrawal? Also, if you’re still on a beta blocker, you might want to check to see if it’s an RLS friendly one, because these too can provoke RLS symptoms.

From what I’ve seen on here, DAWs seems to be more of a straight line improvement trajectory. Meaning, once the daytime symptoms of RLS go, as well as the anxiety and depression and complete lack of sleep, it doesn’t return. What the person is then left with is the horrible night time symptoms of RLS, which drove them to the DAs in the first place. Yours is not a straight line improvement, which is more commonly seen with withdrawal from SNRIs.

Maybe you should look at your condition mostly from the position of someone withdrawing from an SNRI, and with a return of original anxiety/panic symptoms, and possibly mild to moderate RLS, not DAWS? Thus, a night time dose (low) of Pregabalin and Tramadol should maintain your good sleep pattern and you can concentrate on the daytime symptoms of panic, anxiety, nausea as well as the muscle aches and trembling that go hand in hand with these symptoms .

Joolsg profile image
Joolsg

I'm so sorry to hear how poorly you've been treated by neurologists, but not surprised.In Europe, RLS and DAWS isn't taught at medical school.

True DAWS is not continuing withdrawal symptoms, it's a state of anxiety & depression that does not resolve easily. The top US experts are more familiar with it and in extreme cases, they have to put patients back on dopamine agonists.

In your case, it's too early to say if you have true, full blown DAWS as your doctors were so negligent in taking you off the Mirapex cold turkey. That is dangerous.

They've now replaced 0.26mg Mirapex with 2mg Rotigitone, which is the correct equivalent dose. However, it's harder to get off because it's long life and the patches have to be cut.

I think what you're experiencing is a mental health crisis, caused by medical negligence and the brutal withdrawal.

So, allow yourself time to stabilise and settle and recover from the shock/PTSD.

When you feel stronger, ask for 3mg Ropinirole, which is equivalent to 2mg Rotigitone patch in 0.5mg and 0.25mg pills. Slowly reduce by 0.25mg every 2 weeks and use the tramadol to settle the increased RLS with each drop.

You also need blood tests and serum ferritin above 100, preferably 200. RLS patients usually have poor or damaged dopamine receptors and therefore iron uptake in the brain is poor as a good dopamine system is needed. Pills or an iron infusion can help and your doctors should know that augmentation and withdrawal can be reduced by giving an iron infusion.

You have time.

Let yourself heal and stabilise.

Then start reducing dopamine agonists.

Pregabalin or gabapentin are now first line treatment for RLS, but for many people they don't work after dopamine agonists.

By the way, opioids are not the bad guys. Many of us are on them after dopamine agonists. At low dose, they're safe and effective and don't cause addiction ( unless there's a history of drug abuse).

DesertOasis profile image
DesertOasis in reply to Joolsg

Hi Jools, hope you are well. Michael already had an infusion or two. Here is a very telling quote from his first post:

“In this context, I decided to "clean" myself, first from Venlafaxine, because it triggers/aggravates RLS, and then from Mirapexin, to get off this augmentation trap. From Feb to Aug 2023, I tapered off Venlafaxine gradually... and it was awfull. In fact, quitting Venlafaxine has been the worst experience of my life. A few weeks ago, I had a complete 'crash' of my nervous system, with as symptoms nausea, extreme anxiety, asthenia, chills, tremors, etc. I'm still in the midst of this crash. I know that it will get better with time, but it's really super-hard.

Anyway, I want to stick to my plan and I started to taper off Mirapexin a few days ago. I replaced my Mirapexin 0.26mg evening dose with a Pramipexol 0.18mg dose. Directly, RLS symptoms worsened. To be able to sleep, I now have to take Tradonal 0.5mg every night, else I could walk all night. My neurologist recommends me an aggressive tapering off: a few days on 0.09mg, and then nothing. But I'm afraid that my withdrawal symptoms would become so severe that my nervous system, which is already in pretty bad shape with the Venlafaxine withdrawal, would totally.”

Does it not seem like his current symptoms are identical to those he had before withdrawing from the DA and post Effexor? AND, a low dose of tramadol (I believe he meant 50mg) allowed him to sleep, albeit while on the low dose of Mirapex. Plus, during his second hospital stay he was sleeping fine with a low dose of Pregabalin, tramadol and dipyridamole, but the second he opened his eyes, the anxiety would begin.

I think we (including me) convinced him his symptoms were mainly due to DAWS and then he would pressure his doctors to treat him for RLS/DAWs. Yes, opiates are great for RLS, but is that something that would be prescribed for withdrawal from an SNRI? Or dipyridamole or Pregabalin? I have no idea.

Are his doctors really that bad? They first tried him on gaba and Preg, but he didn’t like the side effects. They kept his DA dose fairly low and gave him low dose tramadol to help with augmentation. He was admitted to the hospital as he was drawing down on the DA. They got him sleeping through the night fairly quickly and readily. I would write “done” on RLS/DAWs. When you have a hammer everything looks like a nail. I am guilty of that myself.

I shudder when I read his current post where he refers to his “RLS panic attacks” because I’m picturing this 20 year old with panic attacks (and no RLS) severe enough to have him put on Effexor and then I see a 49 year old man with panic attacks after withdrawing from 28 to 29 years of usage of that drug. Not only do I not think any of his daytime symptoms are due to DAWS, I wouldn’t be surprised if his RLS now falls into the mild to moderate category.

He should probably start anew. He should pat himself on the back for getting off the Effexor and sleeping well without the use of DAs, although now he’s back on. I think that was more his idea than the docs, though I’m not positive. His hope was that going back on the DA and tapering yet slower would mitigate the life altering, post Effexor symptoms, which he is attributing mostly to DAWS??? At this point, I think, he needs to stop blaming himself, the docs, or DAWs, and needs to concentrate solely on symptom relief, because time is his friend.

For anxiety there’s Xanax which should also help with the tremors, for muscle aches there’s Advil and there’s a multitude of RLS friendly, anti-nausea meds. To me, it’s like he’s going back in time to that 20 year old kid and working through a trauma and crisis the right way - with symptom relief and psychotherapy and patience. I (note the I) am without doubt that he did no permanent damage to any of his receptors. And, I think a good chunk, but not all, of his panic is from thinking that he did do permanent damage or believing he has some type of irreversible syndrome. He wants to be free of all these symptoms already. Thus, any amount of break through symptoms runs the risk of being blown out of proportion and him going back to “its DAWs, will I ever be free of it” and then coming back on here looking for answers and different doctors, which we’re only to glad to provide…but are they the right answers and the right doctors?

Joolsg profile image
Joolsg in reply to DesertOasis

We seem to be in agreement. Like you, I don't think this is true DAWS. I think it's the anxiety/stress/flare up from the cold turkey withdrawal second time around and the ongoing effects of stopping Effexor after so many years.

Stopping mirapex should be done slowly though. I find it's too bruatl to go cold turkey. If Michael feels strong enough to withdraw from rotigitone patch faster, he could try, but I suspect that might be more unnecessary trauma.

I think anxiety meds and CBT and counselling will be very helpful in the meantime.

DesertOasis profile image
DesertOasis in reply to Joolsg

Neither RLS or DAWS should be causing him to writhe in pain. With that said, this condition is such a b-tch that to this day I still shake my head in disbelief sometimes. I wish we could change the name to “pathetic dopamine receptors” so that people at least understand the root of the poisonous tree and can understand what is going on, conduct research and do more safe experimentation. Then, if they understand that these receptors do a piss poor job at hurling “dopamine” down our spines - that great and powerful neurotransmitter that quiets our arms and legs once it trickles its way to our peripheral nervous system, they will really have a rather complete picture. Then that kind of clears up questions regarding conditions like neuropathy, spinal cord impingement and multiple sclerosis because anything that affects the spine, or condition of nerves, runs the risk of slowing down/lessening that trickle of dopamine even more, thus resulting in worse symptoms. As someone who has small fiber neuropathy, caused by antiphospholipid syndrome, I know that it definitely impacts my RLS, as you know MS does yours. We either increase that trickle or we smooth out those kinks. Or both 😀

AND, when your dopamine receptors are pathetic, it seems logical that we are more pre-disposed to anxiety disorders and depression. How can we not be?

Finally, if everyone understood the big picture, there would be less questions about new RLS treatments or new medicines their doctors want them to take. You put the name of the medicine, along with the word dopamine or d2 receptors in the search engine, and decide for yourself if you want to take a long-acting drug that antagonizes dopamine or heaven forbid a DA that down-regulates our receptors.

If you replace the word “RLS” with dopamine, you won’t get anywhere. There’s literally tons of anrticles on dopamine and dopamine receptors, but comparatively few on RLS.

And, dopamine antagonists are not to be feared. They may be our only true friend in this world of substances that tend to down-regulate our receptors. Anything benign that stands half a chance of up-regulating our receptors, or improving the dopamine highway, is worthy of trialing, be it Eryl’s diet, severe calorie restriction, aerobic/anaerobic exercise or magnesium. I just read the other day that somewhat regular exposure to sunlight will increase the density of dopamine receptors. How neat is that? They didn’t say vitamin d, they said sunlight. All of the above are truly health enhancing anyways and probably need to be done for a lifetime. Some lucky people, after doing any or all of the above, may be able to get off meds, like GreekStudent with magnesium, while others not. The point is, there’s a plausible scientific explanation, or studies, that prove magnesium inhibits the release of dopamine (which will then increase the receptors) and other studies that show calorie restriction, even without weight loss, increases the number and density of D2 receptors. As long as it’s healthy, or benign, with a scientific basis for improving the dopamine transport system, then don’t even ask, just go for it. Then come back on here and report your experience 🤩

So, if everyone on here would do research and find ways to up-regulate our receptors, and/or make the dopamine highway smooth sailing, we could all rest easier. The solution(s) are out there…who among us will discover them first?

Mikatrap profile image
Mikatrap

thanks for all comments.

I should clarify a few things:

- I stopped Venlafaxine at the beginning of August. I divided my dose of Mirapexin by 2 on mid-August. My first crisis was on Sep 2.

- During most of my crisis, my low back and legs shiver. I can stop the shivering, but it hurts gradually. I have a tension that goes up and up, and at the end I have to shiver again to let it go. It is exactly what I experienced with RLS, expect that now it is during the day.

- Some crisis are extremely violent. The pain and weird electric sensation goes up to my spine, and I am writhing in pain, sometimes screaming when the pain is unbearable

- Yes, I’m on a AD support group ( surviving antidepressants.org). And yes, I consider very possible that some of my symptoms come from Venlafaxine withdrawal.

- My doctors do not believe in post-accute AD withdrawal symptoms. Thus they don’t attribute my condition to Venlafaxine withdrawal. Still, they consider possible that I have a naturally high anxiety level, and that it may be higher after stopping Venlafaxine after 29 years.

Mikatrap profile image
Mikatrap in reply to Mikatrap

I should also add that I had a full MRI of my spinal chord that did not reveal any pathology, and that my neurological exams at the hospital were all normal, including evoked potentials of my legs.

And I agree that I am mentally VERY affected by all the suffering I have been through these last two months. I had a useless gallblader surgery for nausea that were in fact due to a gastritis caused by my hyper-anxious state. The cold turkey stop of my dopamin agonist has been a real torture to me. A neurologist told me that such an abrupt stop of dopamin agonist can literally kill some PD patients on higher dose. While I was under extreme anxiety, I have been hospitalized for two weeks in neurology in a room with a dying old man that could only move his eyes and that I literally saw dying in front of me, than with poor souls suffering like hell from very serious neurological conditions. My RLS crisis can now be so painful that I am writhing. My former neurologist was so offended by my polite questioning of my treatment that he came into my room at the hospital to tell me that if I did not trust him, I was on the right path to finish under morphine for the rest of my life. He also told me that if I wanted to consult another neurologist, basically he didn't care because he had enough patients. And during these two months, I also learnt that a good friend of mine had charcot disease and had only a few months left to live, and I lost my godfather that died alone in his house. So yes, my psychological state is really bad, and it certainly contribute to my bad global condition.

And I'm not only anxious and sad. I'm also very angry against the doctors that have put me under so much pain. Still, not all the doctors. My current doctors are good people doing their best to help me. I'm finally in good hands.

I have started a psy therapy, and my psychologist think that all these events combined to the high anxiety driven by DAWS created in me a severe PTSD. Because of it, I'm under high stress all day, and it contributes to make my RLS more painful, and to keep my anxiety very high. It's like a snake biting its own tail. Trauma, and pain, and my still unbalanced neurotransmitters levels create anxiety, anxiety creates pain and doubt, bringing more anxiety, etc. It will take time for me to heal.

And yet, my goal remains the same: to eventually taper off all these DA, benzos, opoids, and to come back to pregabalin (or dipyrimadole) as my only RLS treatment. I will reach this goal, whatever the cost and the pain.

DesertOasis profile image
DesertOasis in reply to Mikatrap

Since going back on the last, somewhat effective dose of a DA hasn’t helped your emotional crisis, you might want to talk to your doctor about the RLS friendly antidepressant called Wellbutrin, when you get to the end of your rope. The problem is, this particular anti-d doesn’t increase serotonin, nor do any of the drugs you’re taking. So if it were me (and you’re not me) I would ask the doctor for trazodone which is also RLS friendly and raises serotonin levels. It’s best taken at night because of sleepiness and dizziness. I would start with 50mg and after a week see how you feel and whether you might want to raise it. It’s immediately sedating, but like any anti-d, it starts to work on anxiety and depression as the days and weeks pass. I’m not a doctor, but I believe what’s causing most of your problems right now is that your brain is missing all that extra serotonin. Your brain will adjust, and it will once again reach homeostasis, it just depends on your ability to withstand its slow crawl back to equilibrium.

DicCarlson profile image
DicCarlson

Congratulations on getting off the Effexor (venlafaxine)! I have posted this before - 3 supplements to relieve anxiety. Curious, I have recently started the flax seed oil (for arthritis relief)...

forums.phoenixrising.me/thr...

Mikatrap profile image
Mikatrap

Some update here.

My current medication is (1) at breakfast: alprazolam 0.25mg - bisoprolol 1.25mg - Neupro patch 1.83mg (1/12th removed so far) - Pantomed 40mg; (2) at lunch: alprazolam 0.25mg - 150mg pregabalin; (3) at diner: alprazolam 0.125mg - 150 mg pregabalin, (4) before sleep: rivotril 0.5mg, tradonal retard 100mg. My treatment also includes meditation, a lot of walking and workout, a CBT therapy, a classical psy therapy, and I'm also about to start an hypnosis therapy.

I tried to cut 1/6th of the Neupro patch, but it was too much for my brain to handle: my condition worsened strongly a few days after, and I had to move to cutting only 1/12th of the patch instead of 1/6th. I plan to do it every month, so it will take me a year to get rid of DA. I also plan to taper off slowly alprazolam, removing 0.125mg every two months.

On the RLS side. RLS doesn't bother me during day anymore, nor during night in fact. It still shows up and wakes me up at morning, generally around 7h30, but it disappears when I go up and move. My neurologist told me that it is normal that my RLS has much improved as I now take a mix of 4 types of anti-RLS drugs (Neupro, pregabaline, tradonal, rivotril), and as I had an iron infusion a few months ago. Still, he warned me that RLS could worsen when my Neupro dose will be close to zero. If so, I may have to increase my tradonal dose temporarily.

On the anxiety side. Globally, the situation has improved. I now have a window of 4-5 days without any anxiety crisis, then a wave of a few days with several crises of anxiety and depression, then a new window, etc. And I have no more these awful pain crises, which is a strong relief. My neurologist explained these pain crises by the combined lack of dopamine and serotonine: a lack of dopamine can lead to some over-activation of some spinal nodes, and a lack of serotonine can boost the pain felt in the brain. I had these crises when both neurotransmitters were low enough (if this theory is right).

Anyway, what matters is that I'm feeling better, even if I'm still far from my 'normal' state. In addition to the frequent anxiety + depression episodes, I have a hard time to work more than 2 hours per day. I'm often tired, and I have a a hard time to focus and to memorize things. My neurologist thinks that it is due to my current brain chemical imbalance, but also to the combined effects of my meds. Benzos, opioids, and anticonvulsants are all 'depressive' meds, i.e. they tend to calm down your neurological activity and your metabolism.

Some of the comments above suggests that my DA withdrawal has nothing to do with my current condition, and that it all comes from my venlafaxine withdrawal. Under this hypothesis, I'm just back to my natural hyper-anxious state now that I have quitted Efexor. I don't think that it is that simple. Before I had my "fibromyalgia", 3 decades ago, I was far to be anxious. And when I had it, I had no depression, no dark thoughts, no suicidal thoughts, and my anxiety crises were different. For instance, I had no crying spells or hyper-emotionality. My physical symptoms were also very different: weakness, pallor, diffuse pain, loss of balance, extreme fatigue. Now, I'm globally in pretty good shape, but I have frequent dark thoughts and uncontrolable crying spells. And when I have such a crisis, I don't feel "myself". I really feel like I'm someone else, someone that sees everything dark, and that can't stop crying or thinking about the worst cases scenarios. It wasn't the case when I had my "fibromyalgia" 3 decades ago. And the timing doesn't work either. I stayed in good mental state during the whole tapering off venlafaxine, except during the few days after each dose reduction. It is only when I divided my DA dose by two, in september, that my mental state crashed. Last but not least, none of the psy that I saw these last months diagnosed me as a super-anxious or depressive person, on the opposite.

Nevertheless, my neurologist thinks that my Venlafaxine withdrawal did play a role. His theory is that my brain was still working to increase its serotonin and noradrenaline production when I tried to withdraw from DA. Suddenly, it had to deal with a lack of dopamine too, and it was too much for it to handle. It is still the case, but on a smaller scale. So what I suffer from is maybe not a real DAWS syndrome, but a "SNDI" syndrome: a serotonine-noradrenaline-dopamine imbalance syndrome. My brain is doing its best to fix the problem by increasing its production of the three neurotransmitters and their receptors, but it will take time for it to do the job. In the mean time, I enjoy each 'window' during which I feel good and myself, and I brace to endure each wave of anxiety, hopping that after some time, they will disappear.

I take the opportunity to wish you all a happy new year 2024!

Mikatrap profile image
Mikatrap

My condition has significantly worsened these last days. I have more and more RLS crises. They start as a pain in the low back, then are followed by a painful urge to move the legs, and sometimes by an extension of the pain along the whole spine. I have them night and day. I still take a tramadol retard 100mg and a clonazepan 0.5 mg before going to bed, but they do not enable me to have a full night anymore. Each night, I’m now waken up by a pain-RLS crisis between 2 to 5h am. From that, I can’t sleep anymore, even if I take an extra tramadol 50mg.

I’m exhausted, and I have a lot of anxiety crises and crying spells throughout the day.

This degradation coincides with my attempt to taper off pregabaline, removing 75mg every week. Could it be the origin of this degradation of my condition?

My current medication is

- morning: alprazolam 0.25 mg, bisoprolol 0.065 mg, rotigotine patch 1.6mg

- lunch: alprazolam 0.125mg

- dinner: alprazolam 0.125mg, pregabaline 2x75mg

-Bedore bed: clonazepan 0.5mg, tramadol retard 100mg

In case of strong pain crisis: tramadol 50mg

I had an iron infusion last October and my ferritin level was over 400 after.

Î’m desperate and suffer a lot, and any help or advice would be very welcome

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