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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Mikatrap
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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.
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.
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:
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).
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.
- 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.
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.
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)...
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!
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?
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9 days & nights with no RLS or withdrawal symptoms--ahh!
Re : Dopamine agonists .. help .. plz ! 😱
