Those who have read my posts know that I've been struggling for a year to withdraw from DA. First, I was on pramipexole ER 0.26mg. I ended up on Neupro 2mg, that I slowly reduced to 1mg over 8 months. Now, I'm back at the hospital, and my condition is so bad (constant and very painful RLS) that my neurologist wants to put me back on Neupro 2mg, and even more if needed. Apparently, my brain is permanently damaged and can't work anymore without DAs.
Any advice in this desperate situation is welcome.
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Mikatrap
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No, no, no. Don't go back on Neupro! I remember the doctor suggested methadone. Did you try this? You definitely need an opioid. Also that you were on dipyridamole. Did this not help?
On top of Neupro, they give me 300mg pregabaline, 0.5mg clonazepan, 200-300mg Tramadol, some Dafalgan, and now some diazepan. The neurologist is ready to put me on 4mg Neupro if required to put me back on my feet, which would destroy my difficult tapering.
I'm gonna suggest him to put me on methadone + 1mg Neupro. Maybe should he also try to give me back some venlafaxine, as I withdrew from this drug before pramipexole. Maybe my brain can't find a balance with a lack of DA and venlafaxine?
Would you recommend to use only methadone and Neupro, and to remove pregabaline, clonazepan, and diazepan?
I'm ready to grit my teeth, but I can't suffer like that anymore. I need a strong opioid that covers me 24h per day. Would methadone enable me to do not suffer but also to be functional and go back to work. Or would I be high all day?
I was in your position in 2016. I got off Ropinirole. The withdrawal nearly killed me BUT I knew I'd never get better until I was off the poisonYour neurologist is worse than criminal.
I am on Buprenorphine 0.4mg a night.
Completely RLS free.
No high at all.
Please, please, please see the doctors in the Netherlands that Lotte recommended.
I was in the same boat. I wish I could say the DAWS was over in a few months like my doctor predicted but I went through more than a year of hell. I couldn’t see the point in living with a dark, damaged brain. It came and went like a storm cloud along with all the usual withdrawal symptoms. The neurologist’s first suggestion was to go back on DA’s. He also has suggested low dose long-acting opioids for a long time but I wasn’t willing to go there so I chased down other solutions; iron, lacosamide, Horizant, Valium and more. I have run the gamut and finally, after lacosamide worked initially then fizzled down to spotty coverage, I asked to try methadone. I should have done that the first time it was offered but I think the stigma and TV ads against opioids held me back. So far, it’s working well but we are still adjusting the dose. My sleep is a struggle but not due to RLS. I can feel the sun peeking out and I hope it lasts. We are all so different. Please don’t give up on finding your way out of DA hell. You can do it. Your sunshine is still out there 🌞 somewhere so keep trying new things and move forward. You can do it !
I would recommend the methadone without the Neupro. You don't need Neupro and will only augment again. No the venlafaxine makes RLS worse in many so I would not go back on it. I wouldn't do anything different with the other medicines until your RLS settles with the methadone. The starting dose is usually 2.5 - 5 mg and the usual effective dose is 5 mg to 20 mg. However since you are also taking clonazepam and diazepam your doctor needs to monitor you closely for side effects including slowed breathing so the methadone needs to be increased very slowly.
Once everything settles for at least a couple of weeks, then I would first wean off the clonazepam since you don't need both it and the diazepam and the clonazepam can cause next day drowsiness since it has a long half life of 48 hours.
Then I would wean off the pregabalin. Reduce by 25 mg every 2 weeks to avoid withdrawal effects.
After all that you and your doctor can decide if you still need diazepam .
Thanks! So you would recommend removing the Neupro 1mg that I reintroduced a week ago?
I have taken diazepan for a day only, so I guess that I can stop it right away.
I could thus move to methadone, first with a small dose, stick to clonazepan 0.5mg, then let my body settle, then remove clonazepam, then pregabalin. What will remain would only be methadone.
Once my body will have recovered from the DA withdrawal, could I try to go back to pregabaline or dipyrimadole, or should I stick to methadone and try smaller and smaller doses? I'm a bit scared of a being exhausted and weak all day with such a potent opioid.
Yes stop the diazepam. You could try to remove the 1 mg but you might have to do that slowly again although the methadone would help with that. Let's take it slowly for now and put off the decision on pregabalin and dipyridamole until your RLS has settled. I was under the impression you were still taking pregabalin?)
Yes, I take 3x100mg pregabalin. But you mentioned weaning off pregabalin, so I was thinking about reintroducing it once I settled from my DA withdrawal. But one thing at at a time. Stopping Neupro and taking methadone is the first step. Having my dopamine receptor in good shape again is gonna take a while.
Maybe first introduce the methadone to see how you react to it, and build it up slowly. And only then reduce the Neupro. You can cut the Neupro. Maybe go slow, and reduce by a quarter each time, wait for things to stabilise and then remove the second quarter.
Hello Mikatrap, I just sent you an email suggesting methadone. I have No side effects from the methadone except a little sleepiness. I would trade a little sleepiness for torturous night with RLS any day. My effective dose of methadone is 10 mg. That is a low dose. I think I started with 2.5 and that did not help. I hope you take these suggestions🤞🏼
It’s not just RLS at night. It’s nearly 24/7 painful electric discharges that make me cry and shout of pain, and make my legs shiver. I can’t walk normally anymore. I’m’ so weak. I asked for euthanasia. I can’t stand this pain anymore. My partner left me and told me that she’s fed up with what I became and that « we could see each other when I’m healed ». My suffering is too much. I’m a burden for my family. I want to die. Never take DAs, they are poison and should be forbidden. They destroyed my life. I was suffering from a mild RLS and had a perfect life. Now, my life is a constant debilitating torture. That’s enough. I tried to commit suicide a fe weeks ago. I failed. But I will find a way to leave this awful world that works.
I also curse the day I started taking DAs and I have also wanted to die in the aftermath. I am still paying the price, but things are slowly getting better. The depression and anxiety were the worst. I started doing Wim Hof breathing exercises and cold exposure, that has helped me out of my depression. I wanted to tell you if you are open to trying something new. Checking on the science behind breathwork and cold exposure and reading all the testimonials should give you hope.
Thanks a lot, Sigurdur. But my main symptom is the awful pain. If I had my body fine, I would do exercice, go back to work, travel, meet people, and I'm sure that my psychological symptoms would calm down. I also experienced a lot of anxiety and depression at the beginning of my withdrawal, but now this is the pain that is killing me. I'm no more anxious. I'm depressed because I can't imagine a future in this condition, and because of the departure of my partner, but that's not my main issue. The painuful electrical shocks in my low back and extending to my whole body are my main issue. This is torture. And my neurologist can't even explain it, nor tell me if this is due to permanent damage to my brain or not. He is like John Snow. He knows nothing. These guys give you a lot a drugs acting in an unknown way on the brain, and do not even understand how the brain really work.
Mikatrap, the unbearable pain is the result of dopamine agonists. They increase the severity of the RLS.Withdrawal is hell on earth. 3 weeks of severe RLS and no sleep.
So take the methadone and use it to get off ALL dopamine agonists.
Reduce them slowly.
The only safe anti depressants are trazodone and wellbutrin.
Ask your neurologist about Buprenorphine pills. At low dose they are highly effective and at least 3 people on here have used Buprenorphine while reducing Ropinirole or Neupro patch and they have not had brutal withdrawal symptoms.
The average dose is 1 to 1.5mg, but many of us do well on 0.4mg to 0.8mg.
Please don't give up.
I promise you that once you're completely off dopamine agonists, your brain WILL heal. It will take a few months. There IS light at the end of the tunnel.
You are NOT a burden to your family! Your family loves you. You have read many people tell you it will get better. It really will. Please trust us when we tell you this. Most have suffered withdrawal and many of us have suffered DAWS. We know exactly what you are experiencing and understand what you are going through. Don’t think of spending the future like this because it won’t be this way forever. You are way too important to “leave this awful world” prematurely! time you will look back on this and wonder how you survived all of this torture.
Sending you healing vibes, strength and faith in knowing it will get better.
PLEASE, PLEASE, PLEASE DON'T DO THAT OR EVEN THINK ABOUT IT !!! We care too much about you. You are not a burden to your family. Do ask for an opioid, preferably the methadone or buprenorphine. Take a copy of the section on opioids in the Mayo Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... with you.
Hi there, Just wondering whether you are on any anti-depressants? Also what is your diet? My triggers are apples, pears, bananas, grapes, raisins, melon, strawberries, onions, garlic, spiced food, margarine, mayonnaise and all foods with artificial colours and preservatives (ultra-processed). The safest thing is fish and vegetables and to avoid sugar. I am also one of the few who are still on DA’s. I take what you used to take: 0.26 ER Mirapex every evening at 8 pm, then at bedtime 2 co-dydramol (20/500) plus high strength Senokot and soft prunes against constipation) plus 0.5 Clonazepam to help me sleep. I also take magnesium and Turmeric supplements. Evenings and some afternoons I suffer quite a bit from RLS but usually sleep 7-9 hours at night. If I do have a bad night, I take 30 mg of codeine and/or a few CBD oil drops. It sounds like you are going through a very tough time. Thinking of you and sending you Bon Courage.
Given your depression and recent suicide attempt, maybe staying in the hospital is appropriate for a while. But only if you can get a doctor that understands a bit about RLS and DAs. People, and the medical profession, don't really understand how debilitating RLS can be. I completely understand the feelings of helplessness and wanting to end the pain. Losing a partner over this is just adding insult to injury. You certainly have my sympathy.
As Sue, Joolsg, and others have said - you need to:
1. Get on a long-life opioid - either buprenorphine or methadone. You won't get a "high" feeling at the low doseage that controls RLS, but you will likely experience some unpleasant side effects (nausea, constipation, hot flashes, itching, next day drowsiness, etc.). Life with RLS is basically a continual battle to control the RLS while minimizing the side effects that accompany controlling it. Side effects generally lessen after the first couple weeks.
2. Use one of the two anti-depressants that typically don't exacerbate RLS - Bupropion or Trazadone.
3. Only then start tapering down your DAs. Opioids have helped many people taper quickly (I was able to wean off pramipexole in less than a month), but the more typical experience is a much longer tapering period in order to minimize withdrawal. Start slow and see how it goes.
4. Then you can worry about what to do about pregabalin, etc.
How I feel for you!!! But don't listen to that permanent brain damage crap! I was taking 4mg of Premipexole for many years. It took me two years to taper down to 1mg but by then I was so fed up with the process I did something no one should do , I went cold turkey. I was in Mexico and using Tramadol which is available over he counter. I went through some bad stuff but I came through and now I am stable on 200mg tramadol and 22mg Pregabalin. It is now seven months since I had my last Premipexole. I am 75 years old. I gather that Tramadol is not the best but it's working so far. I get very occasional RLS but if I walk around the house a bit it goes. I am still supervising pHd students and no one has complained so far Feel free to show this to the medical staff and tell them NO MORE DA MEDICATIONS! Good luck!
That's exactly what I mean about getting something on the street. You need help, and may have to help yourself. Oxycontin or oxynorm are easily available and very safe at low doses. They can be got on the internet.
I've been on Oxycontin 10mg and Oxynorm 5mg for almost 10 years without any bad effects-- apart from the first few weeks of itching and insomnia.
Buprenorphine is flavour of the month at present but impossible to get.
We are all shouting for you, and knowing that you can and will get through this part of your life.
Please please dont go back on the DA's they are pure evil. I never thought I would get through withdrawal , it was brutal . I fell asleep walking and hurt myself , I took myself off for long walks in the night which looking back was so unsafe but I didnt care , I didnt want to live anyway so what did it matter. I fell asleep driving twice . I crawled along my lounge floor most nights sobbing and pleading for help . I had hot bath after hot bath and sometimes fell asleep. AND then having read about Buprenorphine on this amazing site I persuaded my consultant to prescribe it. That was 4 months ago and now I can finally enjoy life with no Rls. Stay strong , your Rls family care about you and you will get there . Dont give up
My husband has parkinsons so his rls is related to PD. i am wondering why people are not in a hospital or detox facility to get off DA once they are able to lower the dosage. They do that for alcoholics and other drugs, this seems inhuman.
I can hardly imagine what you have been through and what you are still going through, but you have the support and best wishes of the whole RLS community here.
Firstly, don't believe ignorant medics who tell you that you have permanent brain damage and need to stay on DAs. The DAs may well have caused damage to your dopamine receptors, making pregabalin or gabapentin less effective, but that is a different and totally treatable condition.
Many on here have been through this and found that low dose opioids, particularly the long life ones - methadone and buprenorphine - are the solution. I understand that you have been offered methadone: have you been reluctant to take this for some reason? Low dose opioids do not lead to abuse and addiction as has been shown in the Massuchusetts registry study: people on here - like Joolsg, Shumbah, LotteM, Madlegs1 etc etc - have used them to transform their lives.
No matter how desperate things seem to you at present, you can do the same: you can break free of what feels like a living hell and get your own old life back.
Follow their advice and their lead, with our best wishes and hope for the future!
Despite what it might seem like the doctors job is to help you and you have a very serious condition which is ruining your life at the moment and it's the Doctor's job to help you though it. You've taken responsibility for your health and made the recent decision to move away from dopamine agonist which is a good first step. As others have said it can lead to a very difficult period during withdrawal but you will see from other posts that people do get through it. You WILL get better.
You need a lot of help now and the advice from others here is right and I can see you have acknowledged it. Focus on the opioids , methadone or buprenorphine, they really work. Other drugs (pregabalin and diazepam) are probably not much help at the moment and may be worth reducing but you are rightly being careful of changing too many things at once. This will only be possible through the Doctor so can you get someone to come to with you to the doctor and support you and firmly and insist that they help you, explain the nightmare effect it is having and the way you are feeling, explain that DAs are the wrong answer because they make it worse and push them for methadone, or buprenorphine.
You are not asking for anything unreasonable, this is what you need and it's available. I don't know how much methadone will help with the pain but that's what it's normally used for and as Jools has said part of the problem will be the intensification of symptoms after withdrawing, methadone will help you though that period and may be part of the long term solution, it has helped many others.
Just take it one day at a time and know that it WILL get better. Get help with the Doctors if you need it, some countries have patient advocates to help people struggling to get treatment. Try not to get through this alone, lean on family and friends, they will want to help you.
Some news. Today, my neurologist came into my room and told me that he gives up with me, and that I should leave the hospital today. He will recommend me to another neurologist. He is upset because I don't want to increase the Neupro as he recommends. He says that I could stop suffering with his treatment, and that if I refuse, he can't be my doctor. Several times, I had the impulse of cutting more my Neupro patchs. He knows that DAWS comes with impulse control disorders. He knows that increasing my Neupro will lead to more augmentation. But he doesn't want to discuss it. He just left me in my room, telling me to pack my stuffs and be ready to go away. So today I will be home alone with a lot of pain and suicidal thoughts because I refused to increase my Neupro.
His name is Dr Pierre Maquet from Liege University Hospital, head of the neurology service. It is his fellow Dr Fanielle that prescribed me DAs in 2021. When I was hospitalised there in Nov 2023, the same Dr Fanielle tried to make me take 4 mg of Neupro. I told him that it was above the upper limit recommended for RLS by the Mayo Clinic. He answered me that if I didn’t want to follow my treatment, I would end up under morphine, and that he didn’t care because he has enough patients. It is in the same hospital that in Oct 2023, the doctors took my nausea due the withdrawal as a sign of a gall bladder problem and made me a useless cholestectomy. Two weeks later, Pr Scantamburlo, head of the psychiatric department of the same hospital, made a cold-turkey withdrawal of my Mirapexin that led to a severe DAWS. I went to the ER of the hospital twice to be rehospitalized because I was suffering like hell and had strong suicidal thoughts, and they kicked me out. Two weeks ago, I made a suicidal attempt, I am suffering like crazy, I still have suicidal thoughts, I alarmed them by emails about them, and still, today, they kick me out of the hospital because I dared asking to talk about an alternative treatment of my DAWS with no increase of my Neupro and the addition of méthadone.
This is how patients are treated at Liege University Hospital (CHU Liège), Belgium.
The funny part is that I am researcher at Liege University.
Mika, why is everyone so convinced it’s DAWS that’s causing your excruciating pain that radiates from your lower back and makes you scream out and can go on all day long, despite being on Tramadol, 2mg Neupro and several other anti-RLS drugs? When you were first admitted to hospital you were off the DAs. You “slept well for 8 hours” with 100mg of tramadol and a little Ativan. Then you indicated as soon as you awoke the emotional crisis would begin that caused you to tremble and shake. This is not at all typical of DAWs. Even recently, you said in a post that the only reprieve (from the 24/7 screaming pain) was 1mg of clonazepam, that would allow you a few hours of sleep. DAWS of the magnitude you describe can’t be relieved with 1mg of clonazepam to my knowledge. Plus, you were on DAs for only 2 years and a somewhat low dose.
It’s like the story of the emperor who had no clothes. Everyone keeps telling you that you have unbelievable DAWS, yet I see no sign of it. You were prescribed the SNRI for fibromyalgia, 30 years ago, as well as for anxiety. We now know that SNRIs are good for pain conditions like Fibro and arthritis and especially nerve pain. Have you been checked for Neuralgia or Fibromyalgia or could those mildly degenerated discs in your back be pressing on a nerve? The pain shooting down your legs sounds more like sciatica. Has any doctor recommended a short course of a high dose NSAID to see if that provides any pain relief? Or a short course of low dose prednisone? It sounds to me like you have an inflammatory condition that was modulated by the SNRI and isn’t now. Sorry, but to me, your symptoms in no way point to DAWS.
Here is your quote when you were in the hospital and completely off the DA:
“ Each evening, I take a ritrovil and a Tradonal, and I sleep well the whole night. But each morning, I wake up with an anxiety attack. I have my 'good' windows in the afternoon generally. The rest of the day, I'm depressed and anxious, and my RLS can make my legs shiver like crazy.”
Here is your complete post. You were on ZERO dopamine agonists, however, your doctors told you that you may have to go back on them. Are they insane? You were “sleeping like a baby” for 8 hours, with 100mg of Tramadol. The RLS world dreams of this scenario. There might not even be such a thing as DAWS, if people could sleep as readily, and as well as you did here, once off the DAs. Why would they threaten to put you back on the DAs when you’re sleeping all night and it’s VERY questionable if that shivering and trembling you experienced by day was RLS. healthunlocked.com/rlsuk/po...
Hello. I spent about 100 days in a neurological service where they did all possible exams of my nerves: NMR of the brain, spinal cord, low back, CT scanner, EMG, evoked potentials, etc. They found a small herniated disk in the low back but it did not irritate the nerve. Still, they did me infiltrations in this area, twice, and it did not help. In the last NMR, the hernia is gone and all is normal.
What is clear is that my physical and psychological condition did improve when they gave me Neupro 2mg, and worsened more and more when the doses were reduced. And that I was in excellent shape, except for a clearly augmented RLS, before trying to withdraw from DA.
I may try to take back venlafaxine to see if it helps. I wanted to discuss this with my neurologist yesterday before he kicked me out.
Perhaps your GP can prescribe the venlafaxine for you? Would cannabis help perhaps? You need to feel better as quickly as possible so that you then have the space and energy to plan how you will get to a much better neurologist . Perhaps even go to London to see one there?
How are you doing today Mikatrap? We are all thinking of you every day, wishing you will feel better soon. 🙏🏻
Yes, I asked my GP to prescribe me Venlafaxine, and he did it. I have it home now. But I'm reluctant taking it. It is a very powerful drug coming with plenty of side effects. It took me six months to taper it off, and this antidepressant was the source of my RLS. Taking it again could make my RLS pain worst, not better. This is risky to take it again, as my brain chemistry is already so messed up. My GP told me that he couldn't help with my DA withdrawal, and that I should take an appointment with a neurologist...
Yesterday, I have been in the ER of another hospital of Liege, in the hope to meet a neurologist and receive a proper treatment. They contacted my previous hospital, CHU Liege, and based on my file, they decided that they couldn't do anything, and let me go home... I didn't even meet a neurologist, only an ER doctor that told me that my case was not an emergency. I also met a psychologist and a psychiatrist that concluded that I had no major psychological problem, that my problem was purely neurological, and that ... I should take an appointment with a neurologist.
I did try to take an appointment with the neurologist suggested by Dr Maquet, and he has no availability before January 2025. This looks like a dead end.
Anyway, thanks to a member of this forum, I have an appointment with an RLS expert from Antwerpen in November. This is a long time from now, but it is already something. In the mean time, I'm gonna keep my Neupro to 1mg and wait patiently for my dopamine receptors to heal. If at some point I feel better, I will pursue my tapering off, slowly but steadily. I have to kick this poison out of my body at all cost, even if I have to do it home and alone.
I see the conundrum. Perhaps taking a very, very low dose of Venlafaxine would help? In my mind the biggest issue is to stop any feelings of not being able to cope and wanting to end your life. If you are already past that perhaps the Venlafaxine would not help, and as you say make things worse.
It sounds like you are feeling stronger, and I’m so glad to get that impression!
Wonderful that another member of this forum got you an appointment with an RLS expert from Antwerpen. In the meantime, I guess there’s nothing stopping you from researching other neurological experts to get another appointment as a back-up or for an earlier date. Yes you need to kick this poison out of your body - and your life! and I suspect you need a replacement also. Perhaps methadone or buprenorphine which many people on this forum seem to do well on? Some people use them to help with the DA withdrawal also. If that’s something you think will be your next step you could screen potential “RLS experts “ on whether they can prescribe these. Sorry, you probably have thought about all this and others have already mentioned it! I’m just wondering what your best options are. I tend to do lots of research for myself and then tell my GP and neurologist what I want to do. Luckily they usually go along with what I request because they know so little about RLS! Thanks so much for your update. Please let us know again, soon, how you are doing 🙏🏻.
Hi Mikatrap, I’ve been following your posts, and like Sue, I consider the way you have been treated is so terrible it is horrifying! My thoughts are that you need to avoid that hospital and find one where they will treat you well, and help you to get better, even if it means going to another country. Sue may be able to tell you where the nearest neurologist is, who has a good reputation. You need, and deserve, a thorough examination, a medication plan that makes sense, and kindness to help you through this nightmare. Is there someone on this forum living in Belgium who can help advise, I wonder? I wish I could pop over and help you but I live on the other side of the world and do not have money for an airfare, unfortunately. Know that you are not alone and that we are your RLS family doing this with you, caring for you and thinking of you daily. Please keep posting and updating us on your progress.
I am completely astonished!! It is unconscionable how you have been treated. I have never heard of a professional physician, treating a patient this way! How dare they kick you out of the hospital! You are suffering so, and it doesn’t seem like they care. Are you aware of any good neurologists in your country? I wouldnt take the referral from that horrible Dr Marquet! I really hope that you will locate a good , knowledgable and compassionate neurologist. I am so sorry you are suffering and being treated this way!
I'm so sorry to hear about all that you're going through. It took 9-10 months for me to tapered off of ropinirole. There were times that inspite of taking methadone during withdrawal, I wanted to be in the hospital for some kind of an opioid drip. I got through it and won't take an dopamine agonist again. The methadone was not a good medication for me, so with the help of a pain clinic I tapered off of it over 4 months, it was as bad as the 1st taper. But I'm gradually going on oxycodone long term for RLS and chronic pain. I agree with you that the ropinirole is having a long term effect on my brain and body. I've tried researching the subject but haven't found much to substantiate it.
Again a torture day: woke up with electrical discharges in the low back and the legs, that can’t stay still. Pregabalin, clonazepan and tramadol helps a bit, but pain remains awful. I can barely walk.
Someone mentioned buprenorphine. I tried it at the hospital, and it gave me several sleep paralysis events per night, so I had to stop it directly.
It’s really hard for me to do not increase my. Neupro with such a suffering…
Yes. Let me guess. You are still convinced that I suffer from fibromalgia, that I should take back my SNRI, and that I have no strong RLS nor DAWS, right?
I’m not so depressed anymore, nor anxious. I’m just fed up of this awful pain. I just want to wake up tomorrow with no pain, and take back my live. Or at least find a neurologist that understands what is going with me and how to treat it.
You gotta figure out the electrical current thing. If it’s DAWs/RLS, then standing and walking should rid you of it, close to 100%. Does it? If it’s an irritated or pinched nerve somewhere that wasn’t picked up on X-ray then 600 to 800mg of ibuprofen should put a nice dent in it. But if you’re going to try that, even one time, you should let doc know, I guess? When I had Covid I was told to take 600mg every 6 hours around the clock for two days then report back. But to call sooner if symptoms weren’t subsiding or breathing became labored. The bottle says to take 200 to 400mg, that’s why I suggest letting your doc know. I would try heat and/or ice on lower back. Or hard acupressure on my feet. These things cause the body to send signals as well and the idea is to create an opposing signal as well as to possibly calm.
I saw a doctor in physical medicine that examined me, looked at my NMR, scanner and EMG results, and concluded that I do not have any pinched nerve or other mechanical issue in the low back. His conclusion is similar to the one of all the doctors I saw before: I suffer from a severe brain chemical imbalance due to the withdrawal of DA and maybe venlafaxine. He honestly told me that he doesn't know how to help me. He refused to give me methadone, telling me that it is very addictive and that I should have to take it my whole life.
You sleep well, mostly, and have less anxiety and depression. Walking relieves pain, somewhat. The electric jolts sound similar to post SNRI brain zaps. SSRIs don’t just temporarily remodel neurotransmission in the brain they do it in the spine as well. You can see how much time has done for you. It will do the same for your spine. “Just keep swimming.” And take tramadol when all else fails.
I experienced these electrical shocks any time of the day and any position. It just didn’t matter. These electrical jolts went away gradually after several months. So hang in there I’m sure yours will subside soon.
My suffering is awfull (mostly from the electrical shocks in my low back and my legs shivering), and all my friends and relatives are pushing me to take more Neupro to ease my pain. In this context, would you still suggest to stay at 1mg Neupro whatever the pain? How much time should it take for my brain to rebalance? I can't stay like that for months, that's not possible.
I increased my Neupro to 2mg, and my RLS is still anwfully painful. My physical and psychological conditions are constantly worsening. My life has become hell since I initiated to withdraw from Mirapexin 0.26mg last year. I really don't know what to do.
Try a dose or two of the Effexor. Any additional RLS it MAY provoke should be handled by the patch. If you don’t want to try the Effexor then there’s a supplement called Tryptophan that eventually gets converted to serotonin. If the additional serotonin doesn’t stop the shocks you can potentially rule that out as a cause.
Dear Mikatrap, I really really feel for you, and like many others on this site I understand the pure desperation of your situation. Your doctors clearly don’t have a clue, and are even suggesting things we all know will make your symptoms worse. And you’re trying to work your way through all this on your own. It’s heartbreaking to read your posts and I’m clearly not the only one who is with you in spirit, if not in person.
Sue, Jools and others are best placed to offer medical advice. I can only offer my story, which as recently as March this year involved me wanting to die. I hadn’t attempted suicide, but I thought about it a lot, and I spent my days crying and feeling utterly hopeless. My husband didn’t leave, and he was always kind, but neither did he have the ability or inclination to search for help. I had to do it on my own, while feeling at my absolute worst.
That’s what’s so awful about this condition. No one understands the torment involved, so you are left to fight when you have next to no physical or psychological resources left.
But fight you must!
If you can afford to travel and pay privately, see a specialist who understands. They do exist, and I’m sure others have sent details of doctors in your part of the world or maybe even a little further afield. Seeing a consultant who doesn’t think DAs are the answer, or deny your symptoms have a cause, can be the start of your journey back to health.
Once I started listening to Sue and especially Jools (who lives in the UK like me), I started to see a way through. It has involved so much work, and I’ve even had to lie about where I live in order to register with a GP who’s prepared to prescribe low-dose buprenorphine, but it was SO worth it.
I was on pregabalin, clonazepam and vortioxetine (an antidepressant), none of which did more than take the edge off my severe RLS. But the first night on buprenorphine was miraculous. Zero symptoms. Jools and several others have reported the exact same experience. Life changes overnight, and after a week or so of nausea, your body acclimatises and normal life slowly returns. I’ve been able to come off pregabalin (slowly) and am now weaning off clonazepam. Then I’ll come off the antidepressant. All replaced by a tiny little crumb of buprenorphine.
I look back just a few months and can hardly recognise the desperate creature I had become. Now my life is returning to normal, and all because of the wonderful support and advice from people on this forum.
I have seen several ER doctors that can't help me. So I decided to get down to 1mg of Neupro, to do no cancel 8 months of withdrawal suffering. I also decided to take back a low dose of Venlafaxine (37.5mg), to see if its helps with the pain and the dark feeling. Next week, I'll see my GP and I'll try to convince him to give me small doses of methadone, with the goal to get rid of Neupro before the end of the year. I'll also try to make him contact a RLS specialist in Antwerpen and make me hospitalized there asap.
I go on having very painful RLS all day, + crises of electrical shocks, + anxiety and depression.
Last week, I was not fine on 2mg of Neupro. This 2mg dose of Neupro was fine for me 6 months ago, but now it's probably not enough for me because of augmentation. I have to stop DAs at all cost and to wait patiently for my brain to heal. There is not other way, except taking 4mg of Neupro, then 5, 6, 7, and so on.
After a week of venlafaxine 37.5mg, my pain & electrical shocks seem to calm down a bit, which is good. Oppositely, my RLS is pretty constant, I have a high level of anxiety, and I'm twitching all day, making even talking difficult.
Regarding the difficulty of my withdrawal, I think that a part of the answer is in this video: healthunlocked.com/rlsuk/po... and in the related paper (pubmed.ncbi.nlm.nih.gov/268.... Neupro is considered by neurologists as an augmentation-free DA. In fact, it may be the DA with the worst augmentation rate. While I had to do a slow taper to do not suffer too much from withdrawal symptoms, Neupro was deactivating my remaining dopamine receptors at high speed, making the withdrawal more and more difficult. In my situation, the only solution I see is to wait a week or two, and then to remove the last patch of 1mg and endure the suffering while waiting for my dopamine receptors to be active again. I'm still doing my best to get a fast appointment with an expert, in the hope to get some methadone to help me in this upcoming DA-free phase. I'm just scared to get stuck with methadone all my life.
This Neupro's high augmentation rate is the only explanation that makes sense to me. My RLS has developed at an incredible speed these last months. A part of my high suffering (the electrical pain in the back) should have also come from my previous venlafaxine withdrawal.
I hope that after a few DA-free months, my anxiety and depression symptoms will calm down, and my RLS will come back to its pre-DA baseline, which was mild. If so, I may be good with pregabaline only, and I will try to taper off venlafaxine, tramadol, and clonazepan... We'll see. First, I have to survive the last part of the NEupro withdrawal and recover, which seems a huge mountain to climb to me.
Don't just remove the 1 mg patch. You don't need the increased suffering that will bring. Cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction that is advised since 1 mg of Neupro = 1.5 mg ropinirole. Or you can switch to 1.5 mg of ropinirole when you see your new doctor. . Since you can get ropinirole in .25 tablets this is the easier way to reduce. Then reduce by this amount every 2 weeks. You will have increased symptoms but no where what you would have if you just stopped it. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid like methadone 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.
Here is some news on my condition. During the month of september, I had a new iron infusion and I decreased steadily my Neupro dose from 1mg to 0mg over 3 weeks. I have been DA-free for 4 weeks now. I was encouraged to remove rapidly Neupro by my new neurologist, because Neupro has a high rate of augmentation, making a slow tapering off very difficult. Once DA-free, I had a few very bad days, with a lot of pain and depression, but my condition has improved in the last two weeks, with ups and downs. Last week, I could go back to work all week and have a rather normal life, except a few days with painful RLS + depression crises at wake-up and in the evening. This week has been much worst, with crises lasting nearly all day, but today I feel much better. Even in my good days, I'm pretty tired and fragile and I sleep a lot, but my current medication explains this fatigue: 600mg pregabaline, 0.5mg clonazepan, 200mg tramadol ER, bisoprolol 1.25mg (to treat a Postural Orthostatic Tachycardia Syndrome (PoTS) I have since I had a PTSD when I was 20), and Venlafaxine 37.5mg. The high dose of pregabaline alone is enough to make me tired all day. I'm rather sporty (weight training and running). I tried to resume my training, but I'm quickly exhausted, and my physical exhaustion triggers more crises. So I have to remain patient and kind with myself...
I'm kind of an exception in this forum: I have an excellent sleep, as long as I take my tramadol and rivotril. If I have a very strong RLS + depression crisis, I go to bed and I take 100mg tramadol and 1 to 2mg clonazepan, and I sleep for a few hours. At wake up, I generally feel better.
My neurologist thinks that my withdrawal accute phase will last a few more weeks. Then I should have my physical symptoms (strong and painful RLS, electical jolts in the low back, twitching) that should start to subside and disappear within a few months. The depression crises could last longer, based on DAWS litterature.
On the medication side, the plan is to wait for december, than to start decreasing pregabaline, then tramadol, than clonazepan, and eventually venlafaxine. The goal is to control my RLS with pregabaline if required, if iron is not enough, and to get rid off all the other drugs.
In summary: After 14 months of a very difficult withdrawal, I'm finally DA-free, and my nervous system is now slowly recovering.
If a doctor prescribes you DAs for your RLS, punch him.her in the face directly, and run
That is wonderful news Mikatrap! Congratulations! I knew you were going to be ok. Continue to be kind to yourself and don’t rush anything. In time you will return to your old self👍🏼 I do like your suggestion for any Dr. who recommends a DA. 😂
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you up. Sorry- I get so angry at this continual incompetence.
Headaches 
Cut Rotigotine patch in half
Augmentation
I need some guidance on DAWS.
