After a brutal stop of pramipexole (extended release) two weeks ago, predated by a tapering off Venlafaxine from March to August, I'm experiencing the hell of DAWS (Dopamine Agonist Withdrawal Syndrom). I'm now hospitalized in a neurology service, and they are giving me pregabalin, dypirimadole and tradonal to treat my RLS and DAWS pain, and some benzo (ritrovil and temesta) to help me with anxiety and enable me to sleep. The plan is to help me go through the peak of DAWS, and once things will get better, to slowly stop benzos and tradonal, and to keep only dypirimadole (and maybe pregabalin) for RLS. But the neurologist told me that sometimes, quitting dopamine agonist can be impossible as DAWS can become permanent. In this case, I will have to add rotigotine to the mix..
My current situation is the following: I don't eat much and I have some nausea, my aggravated RLS symptoms torture me, sometimes with a neurological pain that makes me cry for more than an hour, I have awfull anxiety/panic attacks, I also have times of absolute despair, I'm extremely fragile emotionnaly. Most days, I have one or two windows of a few hours during which I feel better and can work, laugh and smile a bit. But even in these "good" times, I'm very fragile emotionally. In my darkest moments, I already thougt about suicide or euthanasia, while I'm a "healthy" 49-yr father of two lovely children, I have a lovely supportive girlfriend, and a wonderful job. After a crisis, I don't recognise myself when I think about the thoughts that came to my mind. Before all this, I was a strong, sporty, optimistic person. DAWS has turned me into someone else completely, that's crazy and scary. The worst is that a few years ago, I had only a moderate RLS that bothered me only a few nights per week. Now I'm a depressive zombie, thanks to modern medicin.
I try to fight anxiety with meditation, breathing practices, workout, and yoga, or just reading a book, drawing, etc. When it doesn't work, I take a Lorazepan. 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.
Once out of the hospital, I plan to see a psychotherapist every week.
I've read very awfull things about DAWS, but what I REALLY need now to keep hope is success stories, stories of people having been through such DAWS and ended up as well as before, and if possible after a few weeks or months, not after 10 years....
Do such stories exist?
Any tip to go through DAWS as well and quickly as possible would be welcome too.
All the best from Belgium
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Mikatrap
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I'm sure you will get through this with the good help you are getting ,and the support from your friends and family.
People do get through DAWS, though yours is the worst case I've heard of.
It is a process, and you will get through it. It may not seem too hopeful at present, but hang in there ,and treasure those " sane" moments, as something towards which you can hold on to.
My heart goes out to you never heard of anyone going through DAWS as bad as you are. Did you just stop your pramipexole or wean off it just a thought. Hopefully Sue or Jools will see your post and can give advice on anything else that might help you. Stay with us , post when you like, this forum is for support as well as advice.
I agree with you, yours is not the worst case of DAWS I have read on here. Probably because you did the smart thing by not going it alone. You are sleeping, but you wake up with bad anxiety. Ok, well, we all know that won’t be a forever thing. And if it’s too much to bear take the benzo. You’re in a healing crisis. Your body is making leaps and bounds back to homeostasis. You’re a prime example of Mother Nature at her finest. I, for one, don’t think your receptors are all that down-regulated. It seems almost impossible since you were taking Venalfaxine at the same time as the DA. That particular drug might be the absolute strongest counter weight to DAs out there. So while the DA was pulling your receptors down, the Anti-d was pulling them up. I mean come on, a little Pregabalin, a little Dipyridamole and a little Tramadol and the RLS goes??? We on here have seen many people come off the DAs and those things, one or in combination, don’t provide enough relief. I wish I owned a PET scan so I could show you just how NOT down-regulated your receptors are. Everything you are going through right now is your body’s way of healing itself - say thank you body - for doing such a magnificent job. In the very near future I will reward you for your efforts. And you will 😀
I have this quote in my son’s room “As Christopher Robin said to Pooh Bear, ‘Always remember, you are braver than you believe, stronger than you seem and smarter than you think.’ A.A. Milne” Astrophysicist…wow. I don’t know about you, but when I was shown the below clip by a friend, it permanently changed the way I look at the world, and everything. There’s no going back.
Yes, the double-slit experiment is the perfect illustration of the weird nature of quantum mechanics, the main pillar of modern physics. Our Universe is much weirder than we think.
Speaking of cosmic weirdness, did you ever think that in addition to a physical recovery, you’re having a cosmic recovery/change? I was just telling another member on here that we need a bumpy road (more like pot holes), because that is the ONLY path to becoming a warrior. If this didn’t happen, something else would have, so no point in reviewing what you did wrong or could have done better. I think the answer is 0.
Especially now, the universe needs warriors. This was a common belief among the native Americans of old. Oh, and that anxiety you feel in the morning, well that’s your spirit guide in disguise. We all have one, or more, allegedly. You should greet your guide and ask him what he has to teach you today. Don’t get too friendly, because then he will disappear. I miss mine. He makes an appearance now and again, fortunately. As painful as the lesson is that I have to learn, there’s always some bliss that follows.
Share with your children so that they know these things are coming down the pike, but not to worry, you will see it through together. And in the end, they will have earned their eagle feathers.
Interesting theory! I like the idea that my struggles are there to make me stronger.
My personal metaphysical theory is that we are part of an infinite multiverse composed of an infinite number of universes. I also think that at any given time, my consciouness is a finite amount of information emerging from the activity of my brain. In an infinite multiverse, there is an infinite number of copies of this information state, so basically an infinite number of copies of myself. Some will follow the exact same path than mine, some with diverge. Some will be supported by a brain, some by other physical supports. They are all ONE thing, just like 10,000 copies of the movie 2001 share all the same information: the movie 2001.
Whatever I do, like dying for instance, I will alway end up in an information state rather close to the one I had before. We basically jump from one infirmation state to another, than to another. The jumps are random, but the more distinct two information states, the less likely the jump.
The key thing here are that (1) you are by essence immortal in an infinite multiverse, and (2) at any time I have an infinite number of paths that I coud follow, and I think that by focusing on the 'right' ones, I can increase the odds to end up on a good path, a path where my DAWS will leave me alone after some more weeks for instance.
I realize that my text here does not answer your question, and that it probably doesn't make any sense. Please forgive me. I'm in the hospital under benzos, tradonal, and pregabaline
If you want to know more about the origins of my weird vision of the universe, please have a look at en.wikipedia.org/wiki/Many-...
You can also read 'Divided by Infinity', an excellent short story of the Sci-Fi Master Robert Charles Wilson.
Yes, no question, an infinite universe. And we might be living multiple lives simultaneously. The caveat is that time and space are just a construct. When we die, there is no up there. Time and space disappear, supposedly. “We are not a body with a soul. We are a soul. With a body.” So that would mean our brain, and that finite data, might not transcend this universe/multi-verse. But while we’re here, your data is out there, and can be shared by all in the universe and even after you pass. I’m trying to distinguish between the incarnate and disincarnate existence.
Even in the incarnate existence, our consciousness is part of the collective, where information is shared and events are foreshadowed. Have you ever heard about the random number generators that have been placed all over the world by the Noetic Society? And the Noetic Society was founded by Edgar Mitchell. He had that coveted moment on his return flight whereby he realized everything is alive and connected - the earth, the moon, himself, the universe. And for a split second he lost that sense of duality. He was part of that Oneness. Anyways, the random number generators lose their randomness before major world events. And not at that moment in time. So with 9/11 and the death of princess Diana, the generators lost their randomness about an hour or two before the event.
I disagree about the “right” paths because of all I have read. There is only “soul schooling” and one heck of a wild ride. There are books where people who have had near death experiences share their insight. It’s fairly universal among these descriptions that Love is the basis for all that is. Not love as you think of it, like between a parent and child, but Love as the fundamental particle of all that is, kind of like the atom.
I remember reading in one NDE story that we plan each and every trip here, long before we are born, and even do so as part of a group effort. It resonated with me. I thought yes, I absolutely planned this trip, possibly down to the smallest detail. It was like I always knew this, but just hadn’t thought about it in a while. Einstein was famous for saying “God doesn’t play dice with the Universe” when he was speaking about quantum physics. I think he was right. Nor do we. There is no better or “right” path that if we can manage to find it will set you on the correct course. That’s like rolling the dice to me. Right here, right now, you are on the right path with its many twists and turns, according to my metaphysical theory.
I have tried to teach this to my son and husband. So when things go wrong in their lives I say it’s ok, you planned for this, now let it play out. One time when I broke my favorite piece of native american pottery and was essentially wailing they said “it’s ok mom you planned this” 😠
To test your metaphysical theory, imagine that situation with your son or daughter. Would you say to them, “if you choose all the right roads you will get to Disneyland, if not, then you’ll miss out.” Or would you ask them where they want to go and then plan with them how to get there.
Oh Mikatrap,I'm so sorry to hear this.Did you reduce the Pramipexole slowly, over several months? If you reduced it quickly, the withdrawals will have been HELLISH.
DAWS can happen after withdrawals from Pramipexole BUT should not be confused with anxiety, depression and anxiety caused by the brutal withdrawal and lack of sleep.
You also went through withdrawal from.an anti depressant,so your dopamine levels will be through the floor.
Please stay strong. There is hope. You may not have true, classic DAWS, but rather anxiety,depression and suicidal ideation because of the fast withdrawal from Pramipexole.
It is VERY early days. It takes months for the withdrawals to settle.
I had a traumatic withdrawal and suffered PTSD for months. However, it DID settle and I eventually found the right treatment for me ( 0.4mg Buprenorphine) which has stopped ALL symptoms and I sleep 8 hour's a night.
It sounds like your doctors are trying their best to help, but it may take a while for your dopamine levels to rise and for your dopamine receptors to settle.
Raising serum ferritin can help ENORMOUSLY, so please ask for full panel, morning, fasting blood tests and ensure your serum ferritin is above 100, preferably 200. This can be achieved more quickly with an Injectafer infusion. Please ask your neurologists to look up the benefits of iron infusions for severe RLS.
Ask your doctors to look at The Mayo Clinic Algorithm for the treatment of RLS.
Stay strong and please don't think you will always feel like this. In 3 weeks the pregabalin will start to work and will hopefully cover the RLS. Once you start sleeping properly, the anxiety and depression will slowly lift.
Thanks for the advices and kind words. I appreciate them a lot.
I started to tapper off Mirapexin 0.26mg (extended release) but taking half of a pill at the end of August. I had a background anxiety going up, and up, and up, without any specific reason. On Sep 2, I had a kind of 'crash' of my nervous system (nausea, tremors, increased RLS, asthenia). I then took back the full dose of Mirapexin, and a few days later, I was fine, except nausea. I saw some doctors that told me that my nausea could come from stones in my gallblader that I should remove. Two weeks later, I had a second crash of my nervous system. I had then a gallblader removal operation that brought me a lot of extra stress and anxiety. My neurologist told me that it would be a good idea to taper off Mirapexin after the surgical operation, while I was under painkiller medication. He also gave me an infusion of iron while I was in the hospital. I thus went from Mirapexin ER 0.26mg to Sifrol 0.18mg. Anxiety, nausea, crying spells, tremors, and RLS went up. I had then a gastroscopy showing that I had a gastritis that was probably causing my nausea, and that was probably caused by my over-the-top anxiety. In other words, I was removed by gallblader for nothing. In the galblader, they found two tiny stones that shouldn't have caused so much problems.
My anxiety became unbearable, so I was hospitalized in the psychiatric unit of my hospital. There, they first put me back on Mirapexin 0.26mg ER and gave me some benzo to calm me down, then they stopped abruptly the Mirapexin, and a few days later they kicked me out. I talked with them about DAWS, and they never heard about it. Once at home, anxiety, depression and RLS became crazy, and my nervous system broke down again. I went to the ER, and there a psychiatrist gave me some Seroquel, which was a terrible idea as this molecule is known to aggravate RLS (chronobiologyinmedicine.org...
During a week, I was a mess, unable to take care of myself alone, I needed the help of my family and my girlfriend all the time. Last Monday, I was finally hospitalized again, this time in neurology under the supervision of my neurologist and some other excellent doctors.
My hypothesis is that tapering off Venlafaxine after 28 years of use, followed by this brutal stop of the DA, was too much for my nervous system, and that it broke down to pieces. Now, it is slowly rebuilding itself. I sleep well, I have good windows everyday, things are not that bad.
I will go through this, free from antidepressant and DA.
Good persistence. Indeed brutal dose reductions several times of the Mirapex. Also, ER version should not be cut, better switch first to normal and then slowly reduce. But well, that is (hopefully) all in the past now.
If for any reason any if this returns for a short spell, you now know you can 'sit it out' with help from you family/friends. I sincerely hope that won't be necessary and that things continue to be on the up.
Also hopefully, the RLS is mild enough to be able to stay away from all of the hefty medicines.
I am so sorry that medical ignorance about dopamine agonists has caused this crash.Reduction from dopamine agonists should be done slowly, with the help of a low dose opioid to settle the increased severity of the RLS.
Johns Hopkins hospital in the US has a special RLS clinic. They make it clear that dopamine agonist withdrawal is HELLISH.
AS soon as you reduce dopamine agonists, your RLS increases severely and you get all over body and brain anxiety. If you suffer from depression or anxiety beforehand, the withdrawals will exacerbate it.
What you were feeling is entirely normal during withdrawal. But amplified because of the speed of withdrawal.
If you slow down the withdrawal and use a low dose opioid to reduce the severity, it is just about tolerable.
Opioids can cause anxiety ( they do for me) but pregabalin and trazodone will counter that.
You will be able to stop Pramipexole completely, as long as you go slowly.
I really believe you will see your symptoms settle over the next few months. Accept that it will be horrible for the first 2 months, but there is light at the end of the tunnel. Hopefully the neurologists will slow everything down and help you with the ongoing anxiety.
Dopamine agonists should NOT be prescribed.
RLS UK are trying to stop them being prescribed as first line treatment and reserved for when everything else has failed.
Your dopamine receptors will slowly settle and start to recover.
By the way, one should never cut an ER pill as they are formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release
What a difficult situation you are in! I can only sympathise, second the advice from Joolsg re iron values and Mayo Clinic algorithm. You do write that you can sleep and sleep well. That is an enormous asset. At least the sleep and the relatively good afternoon hours help you to keep your energy levels sufficient to deal with the more difficult hours. Strong distraction will help, bith with the RLS and with the dark thoughts. You will know what kind of distraction will work for you, make sure it is available to you.
Furthermore , I can only help you hope that the DAWS symptoms lift soon, very soon. You doctor appears quite knowledgeable, which may be interesting for other people in Belgium (or the south of The Netherlands; I am in the north of Nl).
You seem to have come off the venlefaxine very quickly. People take years to wean off venlefaxine, the withdrawal is awful. I have not managed to get my dose below 37.5mg in the morning and 75mgs at night.
I keep trying to stop the morning dose but after 3 months have unbearable anxiety and depression.
I took 6 months to go from 112.5mg of Venlafaxine to zero. It was indeed awful. I did this slowly compared to the 2-weeks tapering off program that my general practitioner suggested me, which was
* day 1: 112.5mg -> 75mg,
* day 8: 75 mg -> 37.5mg,
* day 15: 37.5mg -> 0.
With such a brutal tapering off Venlafaxine, I would have been in a much worst condition... It is scary to see that most doctors do not know the long-term effects of neurological medicines like AD or DA, and think that they can be stopped like you stop taking aspirin.
Please do write a detailed complaint to your doctors about what you have been through.There are tens of thousands of people on dopamine agonists for RLS. Many because anti depressants have triggered RLS.
Doctors know zero about dopamine agonists or RLS. Your complaint will help them understand how serious these drugs are and that they affect brain chemicals so a slow, monitored withdrawal is necessary.
The more you learn about RLS and dopamine agonists, the better the treatment you will receive.
Refer them to the Mayo Clinic Algorithm and the RLS UK website and the US website.
Another great resource is Dr Andy Berkowski website. Links below.
I’m so sorry that you are experiencing this torture. It is wonderful that you have the advantage of medical personnel. Although there is no medication or therapy that can rid you of the DAWS , you WILL get better. I suffered greatly from DAWS. I can really relate to the anxiety and depression. I could have written your words. A can share a few things that I feel helped me. Share your feelings with professionals and especially your friends and family. Don’t try to hide your feelings from anyone. That seems to make it worse. If you feel like crying, just do it. You will feel relief after a good pouring of tears. This sounds silly but journaling helped me. I felt as if I was making no progress toward the improvement of my my mental health. However , after reading previous entries, I could see that I was in fact making strides. The “ good windows” you speak of will be more often. For me, the first thing to leave was the anxiety and a few physical issues like profuse sweating. I still suffer from periods of intense depression, after three years but it is tolerable. These periods do not last as long as they use to. I try to catch it just before it starts and I try to practice mindfulness and that helps too. As far as the RLS, it was over the top when coming off the DA but that was helped by methadone. Finally, use this group for help. We are all in the same boat here and can provide a great deal of help. I wish you the best of luck. You can hold me to what I said about getting better. You WILL! I promise. Sending hugs your way.
Thanks a lot, Merny5 ❤️ You can't imagine the good feeling that I have after having read your kind words. I already journal. I do mindfullness. I workout. I work a bit, because my work (astrophysicist, i.e. observing and studying the Universe) is my passion. I do all I can to push my brain to release dopamine and get back on its feet.
I'm sorry to hear that you still suffer from intense depression three years after quitting DA. That shows well how damaging are those nasty drugs. I wish you the best. Big hugs from me too.
I will go through this hell, thanks to my will and to the support of my relatives and of kind people like you on this group. And after that, I will share my story by all possible means, to try to prevent such horror to happen to other people. There is a large scientific literature that shows that using DA to treat RLS is counter-productive (inevitable augmentation) and dangerous (ICDs able to destroy families and people, long-term damages to dopaminergic system), and that DAs should be tapered off slowly, and still some 'doctors' go on prescribing these awful meds to RLS patients and to make them stop abruptly. Shame on them.
What you are experiencing with DAWS is, unfortunately, typical. However, you are being abused by the medical system because that’s not how you treat the condition! Once the withdrawal symptom begins you go back up on the pramipexole! Go back up until the symptoms stop and then you begin to micro taper from the drug. Most people don’t even know about compounding pharmacists. But that’s the kind of pharmacist you need. You take the solid pills to a compounding pharmacist who can then turn the pills into a liquid at a very low dilution rate – actually they create a suspension because the pills are not soluble in water (you can dissolve them but then they lose their chemical properties). If you need help with the math, just let me know. Ultimately your physician will have to write a prescription to a compounding pharmacist explaining to them the ratio of solid to liquid.
The way you are being treated now is making the situation infinitely worse. The last thing you wanted to have happen is being put on benzodiazepines! These people have put you into way first class nightmare.
Trazodone. 50mg taken before bed. Start with 25mg. Metoprolol - lowers blood pressure but also has mild anti-anxiety properties. RLS is the greatest darkness to most of us on here, so treatment for other conditions has to be RLS friendly, even if it means some break through anxiety. If your anxiety is crippling then a rescue med like Xanax or Klonopin, as you’re doing now. Trazodone should take the edge off, not only immediately, but in the long run as well, and should lessen any need for the Benzos . I believe Lyrica is somewhat anti-anxiety and you’re on that. I would take 25mg of the Lyrica 3x a day rather than all at night.
You’ve been off the DAs for about three weeks and you’re sleeping with what I consider minor league drugs, except for the Tramadol, which is weak comparatively speaking. I think your daytime anxiety will follow suit, but I’m not a doctor. Has your sense of well-being improved at all since admission?To start an SSRI now, after weaning off an SNRI, seems like crazy making. You will need more RLS meds to compensate for the increased symptoms due to the Lexapro. Sounds like a strange loop to me, but biochemistry is not my forte.
I am so very sorry you have had to go through this, but so glad you found this forum! Writing and reading here is a critical part of getting through the hell, no doubt.
Many of us on here got off the DA's with an opioid. For me, I thought my problems would then be over and natural solutions would then work. Wrong. After much angst with various doctors, and my own resistance to using opioids again (after a super scary withdrawal situation and also huge difficulty getting refills), and after trying many supplements and options, including kratom, I am now doing well on a small amount of suboxone. I did try dipyridamole and the side effects caused me to stop before I ever gave it a full try.
I'm writing to you just to give you some info/context and also to let you know that dipy alone may or may not work for you after all this-it is hit or miss, as you will read on the forum. I certainly hope it does though! If not, you will have to find the drug or combo that does work, which might mean an opioid. Getting an opioid can be its own hell, as many doctors will not prescribe it and do not know the latest research on rls and opioids. I STILL have to do a drug test when I see my local doctor for a refill-ugh! And yet, my last local doc, who of COURSE retired, did not drug test me and gave me a prescription over the PHONE with 5 or more refills. He just didn't think Suboxone was any threat at all. Dr. B in CA-one of the top RLS researchers I finally went to see-prescribes all opioids without drug testing and making you feel like a drug-seeking addict.
It's possible that the pregabalin and or dipy together might work, or just one or them, but keep in mind that your ideal solution might come only after some trial and error. Hang in there, keep reading/posting, and best of luck to you!
No, it makes absolutely no sense at all! It is complete nonsense! This is a treatment plan that would have been developed by the Nazi Doctor Mengele! There is absolutely no rhyme or reason for treating you with anything other than pregabalin and even that is an old-line treatment for RLS. The current state-of-the-art to treat RLS is called Horizant (gabapentin enacarbil). Even though it has the name “gabapentin” in it, it is not interchangeable with gabapentin or pregabalin. The physician is compounding your problem by administering opioids, pain meds, blood thinners, antidepressants and benzodiazepines!!!
You should consider bringing a lawsuit against this irresponsible physician. Once you go into dopamine withdrawal best thing to do is to go back on a higher dose so that the withdrawal symptoms are alleviated. So let us say that you were at 0.5 mg when the withdrawal began, you might have to go up to 0.875 mg to get rid of the withdrawal symptoms. Once the symptoms are under control you can then begin a micro taper without ever having to use opioids, pain meds like Tradolan, benzodiazepines and antidepressants.
The micro taper is something that most physicians seem to have forgotten after their first year in medical school. You can take a drug like pramipexole to a compounding pharmacist and have it rendered into a liquid so that you can withdraw tiny amounts each day over several years until the problem is gone. This way you never risk dependence on opioids, pain meds, SSRIs and benzodiazepines. All of those meds can cause dependence!
It is a two-step process to deal with DAWS. Once you have taken a higher dose of pramipexole and the symptoms are under control you then begin a micro taper. The idea of a micro taper is that you eliminate tiny amounts of the drug each day tricking the brain, as it were, into not missing the drug. It might take several years to get off the drug that way but at least you know that there will be an end to this problem. The physician that is ordering these absurd medications should have his license removed. Barbaric! Simply barbaric!
Tagaxel, Horizant or gabapentin enarcabil is not available in Europe. And this forum is UK and EU-based, although it has contributions from all over the world. And no, not everybody RLS can be treated effectively with Horizant. Unfortunately. And dipyridamole is an old medicine, but only very recently came into view as a potential treatment for RLS based on research by drs Ferré and Garcia-Borreguero.
I may have mentioned this to you before - I know I told someone recently. Horizant is not better better than gabapentin and pregabalin. It is just a different formulation that lasts 24 hours and it is interchangeable in the sense that you can go directly from gabapentin or pregabalin to Horizant. Not sure of the other way around in the sense that I don't know how much one would need to take of gabapentin/pregabalin to avoid withdrawal effects.
Ok now the doctors changed their plan. They’re going to put be back on DA, rotigotil patch, to see if my symptoms improve or not. I suffer like hell. My RLS are 24/7 ans they are extremely painful.
With what plan? To stabilise you and then reduce more slowly? Most US top RLS researchers are quite adamant that DA's cause augmentation and once it has occurred will return more quickly when put back on a (another) DA. Even the rotigotine (Neupro) patch with supposedly the lowest chance of af augmentation. But - exactly this change to the rotigotine patch is still very common on the daily practice.
I can understand that you and your doctors want to relieve tour current symptoms. You now say they are 24/7, whereas a few days ago you wrote that you had several and longer periods of no or little RLS. Has your situation worsened?
What I simply mean to say, it is difficult to judge and advise you, based on our common experience, about the wisdom of returning to a DA, without knowing the reasoning behind that decision. It is nit always just bad or good.
My current treatment is Temesta + Pantomed + Bisoprolol + Alprazolan + Tradonal + Rivotril + Pregabaline.
My current symptoms are: Night: I sleep rather well; Day: high anxiety, tremors, mostly from my legs and low back (strong RLS), but also from my arms. My RLS can turn into a pain crisis during which I cry like a baby, and it can happen several times a day. Major depression. I have the feeling that I have a very bad disease yet to be diagnosed, and that I'm done. I think often about my upcoming deaths. So yes, my symptoms have globally worsen. I'm a mess. Probably DWAS is responsible for this state.
Medical plan: brain IRM + evoked potential, just to be sure to do miss any nasty thing. Start of Neupro on Tuesday. It is not clear is the doctors want to tapper it off later or keep it forewer.
Pantomed makes some people’s symptoms worse. Others not. Does standing and walking relieve your daytime RLS? In terms of daytime pain and anxiety I would try splitting your Pregabalin over the course of the day. You need to get ahead of your symptoms, so that means dosing with daytime meds before symptoms begin, including maybe ibuprofen for the muscle pain every 4 to 6 hours, and of course the Pregabalin.
Your anxiety sounds more like panic. Panic exacts a terrible toll on the muscles and nervous system. Cold water on wrists or face can sometimes nip an attack in the bud. You’re not dying, the calmer part of you knows that. It’s the panic talking.
If standing and walking relieves the RLS then think about a daytime dose of tramadol. You basically have to repeat during the day what provides you relief at night. If standing and walking doesn’t relieve those sensations then I would assume it’s all part and parcel of a nervous system that has been through the ringer. Most of us would be out of our depth giving advice in that area. We’re all about providing solutions so people can get a good night’s sleep. You’re there. The rest is probably best left up to the experts.
I know what you are describing. I also only had mild RLS before I started taking Pramipexole. I managed to taper off experiencing all the horrors you describe. Someone suggested to me kratom and I believe it saved my life. I went to some really dark places before. A few months have passed and I am still dealing with RLS, but nothing compared to the hell during DAWS.
I hope this works for you. Do you know that according to our experience one can cut the patches to very slowly reduce doses? I was not on rotigotine, but I am on buprenorphine pathes and also cut that patch for a while in an attempt to reduce.
Why are you supposed to wean off the tramadol "with the reintroduction of a DA"? Isn't the whole idea behind your approach to come off all DAs completely? Maybe I misunderstand...
- 4mg/day rotigotine (he wants to double the dose).
-3x75mg Prégabaline
-Dipyridamole
-Tradonal (3x50mg per day)
-Temesta
-Rivotril
He is not sure that I will be able to come off completely of DA. I find really weird that he wants to give me such a mix of DA, alpha2ligands, dypirimadole, opoids, and benzos. I'm pretty desperate.
I can understand your last two phrases. The mix is weird indeed, doesn't sound like a thought-trough plan. He just throws everything available at you, all at the same time. All of these meds have been used as RLS treatments, but all at the same time?? Sometimes it works to combine medicines from two or three types, but here you list six!
However, it gives you room to play with it yourself, but be careful, one at a time, and go slow. Also: see disclaimer at the end.
1.b. Have your iron tested according to the guidelines in the Mayo Clinic Updated algorithm, and - if indicated, but very likely, start taking iron.
2. List for yourself what you take now, what is for RLS and what for other issues. Start stopping the unneccesary ones, one at a time, and reduce slowly if you have been on that med for a long time and/or at a high dose.
3. Once you are down to the rotigotine patch (a DA, currently 2 mg?), the pregabalin (an alpha-2-delta ligand or gabapentoid), and the Tranodal/tramadol (a painkiller, opioid-like), you are down to the three current main medicine groups for RLS. See the Mayo Clinic Updated algorithm. THEN start reducing the rotigotine patch slowly. You CAN cut the patches, and go 1/2 or even 1/4mg at a time (1/4 mg more difficult when you have only 2 mg patches). I hope the tramadol combined with some pregabalin will suffice to not let you suffer too much. If your gp is willing and listening, you may temporarily need more tramadol or a stronger opioid (Targinact or oxycodon alone) during these reduction times.
4. Once off the rotigotine, and your symptoms stabilising a bit you can see whether the pregabalin and tramadol combination works. And they play around. Reduce one of those at a time to find your lowest effective dose. Or increase the pregabalin slowly first to get coverage. All - if you can! - in consultation with your doctor of course.
5. Dipyridamole is a relatively new treatment option, with only one or two small trials with RLS patients. Maybe only try that one when you know pregabalin or tramadol or the combination of these two don't work.
Disclaimer: I am not a (medical) doctor, but a fellow RLS-sufferer who has been through a lot of treatments before finding what works for me (5 mcg/h patch of buprenorphine, an opioid). With this reply I am on the brink of overstepping my boundaries by giving you such specific advice. However, I tried to stay within the limits of what your doctor has been prescribing and make use of the freedom we have as patients to carefully 'play' with our prescribed medicines. And one at a time, otherwise, you don't know what you are doing and what is effective.
I really hope this will help you (and your doctor) decide how to proceed.
My plan now is to slowly stop the pregabalin, dypirydamole, and Tradonal, once at a time, so to keep only a DA treatment for my RLS for the time being, until my DAWS syndrome is under control. Same for the benzos: I will try to tapper them off quietly until the situation is under control. I will stop them after the other medicines, to do not stop several medicines at the same time.
Then I will move to step 2: slow tappering off Rotigotine by reducing the dose of 10% every month, while introducing back Tradonal and dypirimadole if required to go through the withdrawals. But I will do this in interaction with my neurologist, of course, because I can't discard the possibility that he knows what he is doing. But to be honest, I can't discard the opposite possibility either... He is the one that put me on DA, and his colleague is the one that decided to stop abruptly DA. I'm certainly not in the best hospital for RLS treatment. They seem to act on me under 'try and see' strategy. Scary...
My iron is very high, because I had an iron infusion recently. It was supposed to help me go through the tappering off the DAs. This didn't help, but I'm pretty sure that when you stop DA abruptly, there is no way your nervous system does not explode, whatever the preventive measures you take to soften the crash.
Keep us posted, Mikatrap. Especially when things are difficult. We are here for support. And to listen. Sometimes that already helps. Because we understand.
Your help and support is invaluable to me. To have the opportunity to share my story with people that understand what I'm going through is very precious to me. Thanks to you all for maintaining this RLS blog and sharing here all this valuable information.
Here is an update of my situation. I met my neurologist last week and he told me that "my tapering off dopamine agonists is progressing well". My current dose of Neupro is 1.4mg. I remove 10% of the initial dose every month. My latest taper off was Feb 7th (1.6 -> 1.4mg). My current medication includes also 3x0.125mg alprazolam, 2x75mg pregabaline, 1x0.5mg clonazepan, 1x100mg Tramadol, and 0.125 bisoprolol per day. I also taper off alprazolam by -0.125mg every month.
I asked him if the withdrawal symptoms will decrease or increase as the tapering off progresses, and he admitted that he didn't know. From what I read on this forum, they could get worst as I approach 0mg of Neupro. If so, I don't know how I will be able to endure them, as my current symptoms can already be unbearable.
I have good periods and bad periods. Last Sunday, I started a bad period, probably because of my recent taper off Neupro and alprazolam. It started with some weakness and dizziness, then came anxiety and depression crises, then some very painful restless legs/back crises during the night, and today it culminated to a full day of torture: extreme fatigue, tremors, hot & cold, tinnitus, RLS all day long, two very painful crises, and a bunch of anxiety/depression crises. I'm at home, too weak and trembling to go to work or even to go shopping. I called my neurologist to inform him of this degradation of my condition, and he told me that I should double my dose of tramadol by taking a second 100mg pill at breakfast. I don't want to do that. If I take 100mg of tramadol at breakfast, I won't be able to go to work or bring my kid to school. He also suggested me to test another anxiolytic: hydroxyzine. I tried it today and it knocked me down for three hours. So I won't take it anymore either. Apparently, the only thing that modern medicine can do for me is to give me more harmful and addictive psycho-drugs.
This tapering off dopamine agonist is an horrific experience. Tapering off venlafaxine before was very hard, but it was a piece of cake compared to this. In my bad days, like today, I can't believe that I will get through this. This is unbearable. I'm a hopeless mess trembling in my sofa. I'm afraid that I will end up losing it all: my health (done), my job, my wife, my kid, my house, etc. I still see a shrink. She listens to me and is sympathetic, but she can't do anything to help me, and she doesn't understand what I'm going through, nor my family, nor my wife and friends.
I feel so lonely and hopeless today. And I'm so fed up suffering.
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any successful stories switching from opioid to pregabalin? 
I need some guidance on DAWS.
Reintroducing DA at a low dose?
