Does anyone have any experience of morphine in the treatment of RLS? I have had to come off Buprenorphine, which did help with the RLS, but turned me into a complete zombie (extreme tiredness and depression, amongst other things).
I’m now on morphine, and while it seems to make a little bit sleepy to begin with, it also seems to increase the RLS. It seems that the more I take, the worse the RLS gets. In fact I have not been able to sleep until I’ve taken a small amount of Buprenorphine (which is hours after I’ve tried the morphine).
I can’t find any data that morphine could have this effect so I’ve soldiered on, basically refusing to believe it and blaming the RLS on other things. For instance, I do tend to get very hungry in the middle of the night as I’m waiting to sleep, so I usually have to have a light snack that shouldn’t aggravate RLS, at least not much). But I’m getting to the point of having to admit that the morphine is barely even touching the RLS, or if it is, then it’s also having side effects that counteract the benefits. I’m certainly not feeling any relaxation at all. On days when I have been able to sleep, I’ve been waking up quite often.
I suspect that it’s increasing serotonin which I’m extremely sensitive to, so maybe an insignificant increase could matter to me where it doesn’t affect other people. I get the usual symptoms such as an urge to pee every five minutes and slight tachycardia. This could also come on due to a drug induced increase in dopamine.
Does anyone else have any experience of this, and is there a different opioid that hasn’t caused these problems?
Just to clarify: I used some out of date oramorph last summer and it seemed to work reasonably well, so something has changed. I was on oramorph for a month Dec-Jan while tapering off from the Buprenorphine, so I doubt this is due to withdrawal. I was off the Bup for a couple of days and the morphine still didn’t work as it should. I now have tablets instead of the liquid because I was worried the sugar was triggering RLS. This doesn’t seem to be the case.
Sorry if longwinded - I feel so tired.
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What dose of Buprenorphine were you taking and what dose of morphine are you now on? It may be that you're suffering opioid withdrawal RLS if the morphine dose isn't equivalent.Buprenorphine affects slightly different opioid receptors and that's why it works for people who have failed other opioids.
Did you take Buprenorphine at night only? Did you try a small dose of pregabalin to counteract the depression?
It's so frustrating to find the right meds and the right dose to cover this insidious disease.
I spent a month tapering off which in practice meant that I was taking oramorph 10-15 mg when I hoped to sleep and then many hours later when still awake , I’d take a tiny dose such as 50-100 mcg bup just to finally get the sleep. So something seems wrong with the morphine. This is no longer withdrawal ;(. The depression and fatigue from Bup was so severe, there was no way I could continue with it. I did try some gabapentin I had at home but it made me so sick, I couldn’t bare it. My GP was not interested in trying pregabalin because of my lack of response in the past and because it’s similar to gabapentin.
I felt I was messing with something very serious when I was on Bup, it was like a bad trip (without the hallucinations but I did have strange associations and odd dreams). I wouldn’t say I was losing myself or anything like that in a deeper sense but I certainly lost my usual cheerfulness and at least a modicum of motivation and energy to function and complete tasks during the day.
I certainly also considered that the Bup from the morning was possibly affecting the morphine the following night as in getting their wires crossed, but I was without the Bup for two days and it didn’t make any difference. In fact I had two slightly better nights because of some sleep debts but last night was just awful again, the antsy sensation in my legs is potent and worse than what I’ve had before.
None of this makes much sense. I used some oramorph (had an old out of date bottle) in the summer and it seemed reasonably ok. It’s as though something’s changed in terms of my personal chemistry. I hate when things don’t make sense!
before all this I was on Bup 500 mcg and I had to taper off slowly because of withdrawal symptoms.
Hmm, that’s VERY interesting, thank you for digging this up! I’m glad someone understands just how complex this can be. I wasn’t able to access the chart for some reason but I’ll try and have a rummage around.
I cut down to 200-300 mcg Bup very quickly, that gave me awful withdrawal symptoms i.e. severe RLS and extreme fibromyalgia. (I felt electric currents running from head to toe on a couple of occasions and the day time suffering from fibro pain was bad). I then tapered off more slowly from that so was taking increasingly smaller doses over a period of one month until I saw my GP again. (It was hard cutting the Bup tablets, sometimes I would only scrape a small morsel with my nail haha). Anyways, I wasn’t taking them at the same time so the morphine would go first sometime at night and then as RLS symptoms increased over the course of the next few hours, I would end up taking the Bup and that would get me to drop off between 6-9 am. Madness, as I would then sleep till 4-5 pm…
This has without any doubt been a very difficult process, clearly the two are quite different and antagonistic, and then with the strange withdrawal effects on top… phew.
Last night I gave in again because I was getting so jittery and time was just ticking away. This is the hardest part. I have to sleep eventually, no matter what it takes. I can’t survive even one sleepless night (because of being generally ill). Soo… I’m in a pickle if the morphine doesn’t start to help quickly. I’m wondering whether I should alert my GP now or still wait and see - the trouble is that I HAVE to sleep and so I tend to give in and take the Bup, which then slows down any potential progress. It seemed last night that the more morphine I took, the worse the RLS got. I took about 20 mg all in all. Trouble is, I don’t know how much is a safe dose to take in the space of just a few hours, especially as I also use Zopiclone and sometimes Diazepam if I really can’t sleep. Do you know?
I now have a prescription for 15 mg tablets but I also have oramorph so I can take more if it’s safe.
I guess it’s impossible to say whether that was just due to withdrawal or not? :/ However your theory that maybe the morphine dose is too low is of course worth thinking about if I can just figure out how much is safe. Last summer I didn’t use much at all and still got relief, so this is really disconcerting.
Hi, there. So sorry to read of your struggles and I so sympathize. Your post is from 5 months ago but I'm just reading it now (after your "like"-thanks). This line: "I certainly lost my usual cheerfulness and at least a modicum of motivation and energy to function and complete tasks during the day" particularly grabbed me as I am dealing with the same thing. I never thought it could be from the suboxone, especially since I take such a tiny amount. (I take about 1/8 of a 2 mg film strip.) I would guess that nobody knows I am so depressed. I don't dare tell the doctor from whom I am already struggling to get the prescription. I could tell Dr. B, who gave me the original prescription, of course, but he has prescribed other opioids already. I have my own business and when I have a client I can and do totally pull it together. If I am active, I don't feel tired or any symptoms. The rest of the time, when I should be doing so many other business-related or life tasks, I easily fall asleep or just procrastinate by watching TV, etc. I have little interest in things that I used to enjoy. I get things done only when I must, and sometimes not even then. I fake it very well around others-it's just an automatic part of my personality, I guess. I assumed this was all situational depression, as my choices in life have put me in a sad place. Anyway, sorry to go on, but do you think it could be the suboxone at this low level? Would a supplement help? The awful thing is, I didn't deal with these issues when on the DA's. I sometimes wonder what the heck did I do going down this road of kratom and various opioids-it has been hell. Thanks and I hope things are somehow going better for you.
Hi TeddiJ and thanks for responding! Yes I do think it’s likely to be the Buprenorphine. I’m going to see my GP on Friday and have the same concern - how much should I complain? I’m feeling extremely unwell. I’ve tried to keep the amount of opioids down but it’s a choice between sleep and a really awful day time experience that’s marked by physical fatigue and mental depression, or no sleep and a really awful time when I’m awake, just different...
I know quite a lot about supplements (but not kratom) , however I can’t think of anything that would help. Buprenorphine is a kappa antagonist, and I think this is the reason it’s causing depression. I also get relief from Tramadol which isn’t a kappa antagonist, but it increases serotonin instead, and this also causes problems for me. Morphine made the RLS worse. I don’t know what to do. I’ve started medical cannabis and it’s helping me get to sleep earlier. I hope over time, I can cut down on other medications. I’m sorry that you’re taking such a tiny dose and it’s still affecting you in this sneaky way. I’m sorry I don’t have any ideas ;(.
Thank you very much. Kratom isn't really a supplement-it is like a natural opioid. So it works for rls in desperate times but it's not a good long term solution for most people.
I was wondering if you had tried the supplements like-Sam-E or Gaba or anything else? I guess not!
PS-I've tried Delta 8 and it also helps with sleep. But I'm sure it doesn't help with depression issues. Thanks so much for that info as I hadn't put my mood down to the Suboxone. Nobody has mentioned it, that I know of.
Good luck on Friday! Be careful that he or she doesn't take your opioids away entirely-that is my fear.
Thanks! I don’t suppose this doctor will take it away from me, but we’re right to be concerned. The problem with supplements in my case is that they tend to stimulate serotonin, and this is clearly one of my problems. Too much serotonin and low dopamine makes me feel very depressed, which is why Tramadol does it to me, too. Stimulating dopamine doesn’t work either, I don’t tolerate it. I’ve found some answers to this under ‘serotonin syndrome aka toxicity’ which seems to overlap the RLS. Having said that, I don’t know exactly why Buprenorphine would cause depression in some people though it’s also known to counteract depression in others (due to its kappa antagonism).
The supplement that I really enjoyed for its ability to give me a clear head was l-theanine, however, the nice effect didn’t last. Can’t get GABA in the UK.
I hope we’ll all find some better treatments soon.
I use Ashwagandha for my joints, not for RLS. Sam-e won’t help with RLS either, in fact it could make it worse. I don’t tolerate most supplements and definitely not the ones that increase serotonin (e.g Sam-e). I’ve felt a little less depressed this week so I wonder whether maybe the medical cannabis (HTC not CBD) is helping a bit over time. I sure hope so.
Yes, I suppose, but antidepressants and other serotonergic agents tend to make RLS worse - I also get other symptoms of serotonin overload such as tachycardia and nightmares!
I think you need to have a detailed chat with your GP and your pharmacist. They are aware of the drug interactions and dose equivalents.I switched straight over from Oxycontin to Buprenorphine. I don't understand why you would have to go through opioid withdrawal to start another opioid. A straight switch at the correct equivalent dose would avoid withdrawal RLS and you'd quickly discover if the dose equivalent needed adjustment.
Sadly, sleeping pills won't help while RLS is 'kicking off'.
Yes, you’re right, something seems to be wrong and I can’t just start taking massive doses of morphine at night. None of this makes any obvious sense because I managed on very small doses just a few months ago. I also had no problem transitioning from other opioids to Buprenorphine (or any other opioid for that matter).
The Buprenorphine seems to have kick started some kind of deeper problem, I believe it has to do with the kappa receptor antagonism that makes it different from the other opioids. I think it’s the reason I got to such a dark place after two months’ of use (the problems just got worse over time). As you said earlier, it may just take a long time for my body to adjust and somehow I need to cut it off without losing my mind to RLS in the meantime. I do think the main problem is withdrawal from the kappa antagonism. Kappa antagonists are indicated for the treatment of major depression, and I don’t seem to tolerate any form of antidepressant. Weird!
I tried taking some Oramorph recently when my RLS was very bad after having chemo. It made it worse which I was very cross and upset about because so many people on this site say it is a good thing and he,ps. People use it to come of Ropinerole to help with the withdrawal symptoms but it wouldn’t work for me and I was hoping to be able to do this.
Thanks for your experience. I think I know what the issue is, and that’s an unfortunate fact that morphine increases both serotonin and dopamine. Some of us are extremely sensitive to these increases even if only very slight. I don’t tolerate most medications for this reason. So I’m feeling pretty desperate. What are you on, now?
thank you for your comment. That’s interesting. Not sure what you mean by the question ‘what am I on now?’. I am on all sorts of drugs for different things.
I am on Ropinerole 4x1 mg. When I started to get symptoms reappearing anbout 8 years ago I was given Gabapentin which they have gradually increased. Been stable on this (800 mg ant night) apart from some PLMD starting in my arms and head in the mornings. But this was not troublesome. It is the jumping legs which are so awful and we’re a big problem after my first chemo. The second one is fast approaching - this Wednesday. My oncologist has been in touch with the Nuerologist attached to their sister hospital, as I am no longer under one. He/ she prescribed 300 mg Gabapentin! Joke! I had told them I am already on 800 mg. So it’s back to the drawing board. My oncology team seem to want to help me but of course they know nothing about it. I have sent them, this weekend, the Mayo Clinic algorithm but I doubt they will have the time to read it with all their other patients to care for. They seem interested, but only to a degree!
I’m sorry to hear all this, not least that you have to have chemo, that’s just really awful. It’s horrible to find oneself completely trapped. You probably need to try some other opioid if you’re augmenting on Ropinirole. But yes it scares me that as we get older, fewer drugs are tolerated, and even work!
I’ve slept thanks to quetiapine for over ten years, but of course it aggravates RLS. But i’ve had a brain wave today, I will try and take the quetiapine as well as the morphine, and see if they balance each other out (in a way that’s complicated to understand). I think that’s been happening in the past. Quetiapine counteracts the increase in serotonin that’s brought on by opioids. Morphine shouldn’t have this effect but there are divided opinions on this and I feel quite strongly that it’s increasing my serotonin levels and that’s what’s making things worse. I even felt the RLS in my arm last night. I get very specific other symptoms also from high serotonin levels.
You also might want to have a look at the z drugs and diazepam (benzodiazepines) you might be in tolerance withdrawal of either. Check out the website benzo buddies. Also the morph might be having a rebound effect which is what happened to me on a benzo.
Oh, you poor thing. I feel for you, I truly do. Morphine does not work for my RLS and I would be both surprised and delighted if it actually worked for anybody. Oxycodeine/oxycodone helped me in the past with surgery pain more than Morphine ever did and was only somewhat helpful with my RLS. Dopamine agonists were the best help for me. I have been on Requip (ropinirole) for almost 30 years and that has been the only medicine that ever worked and I recommend it. Yes, there's augmentation but I have learned to live with it. Have you thought about considering ropinirole? Please let us know your thoughts and feelings and if you find something else that works, please share. Best of luck!
Thank you for your kind thoughts! I don’t tolerate Ropinirole, I really don’t seem to tolerate any drugs anymore. I would rather not take it anyway as augmentation scares me. I think I need to use a medication that turns down the serotonin but it’s all far too complicated. Funny how we all respond so differently to these medications.
Merster here. I am on both Ropinerole and slow release morphine sulphate. I have found over the years the morphine helps keep the requip from augmenting. I take 15 mg ms contin and .25 requip later afternoon so I can relax after working ( I am an arborist and climb trees for a living). Two hours before bed I take 15mg morphine and .5 mg requip. An hour.later I do the same again and withing another hour I am ready to sleep and I am good for 3 to 4 hrs before I am awake . I take 15 mg morphine and good again for two more hours. So I sleep in 2 to 3 hr sessions. After 3 yrs if hell I have been good now going on 3 yrs of stability.
I sympathize with you! What a terrible struggle you are having.
I hope you don't mind if I share my experiences with you.? If nothing else, please don't let yourself get to where I am . Get help, make a huge fuss, tell your doctor what is coming if he/ she doesn't get informed and DO SOMETHING USEFUL!
I have been taking Pramipexole (and similar Das) for forty years. Towards the end of this "treatment"I was prescribed 6mg Pramipexole. It took 2 years to cut down to .25mg Pramipexole. I used Tramadol 100 mg to dull the withdrawal.
Then I hit a wall. Couldn't cut down any more, writhing in agony on the floor for hours.
So last summer, I swopped over to Buprenorphine/Naloxone. It didn't help at all and then there was nausea and anti nausea pills/ chronic constipation and depression and anxiety. Fortunately I was such a mess I ran out of the stuff and of course the Pharmacy couldn't help me. A blessing as it turns out!
No I didn't go to the street. I could have but why add ones life to the senseless carnage we call the opioid Crisis.
It took about 4 weeks of withdrawal and almost continuous RLS day and night to get cleanish. Now I am back on the Tramadol but the pramipexole is augmenting and I find myself in a trap.
AS I see it, I have two choices:
1) manage the Premeipexole and augmentation as best I can until it no longer works and then die a horrible death. I estimate this will take 6 months.
2) try to cold turkey on the pramipexole (there is no point now trying to slow this process down as this will only lead to more augmentation. ) So far the longest I have managed is about 4hrs. It is hell! Can't eat cant drink water, cant rest, cant sleep just curl up on the floor and take it as wave after wave of violent convulsions pass through me. It's like being buried alive ! And how long will it last? I gather it's about 3 weeks! And that is testimony from people who never took more the 1mg of pramipexole. I was taking 6mg! Will my brain recover? If I can survive for that long?
So here is the big question: Will I ever recover or will I just meet a longer more drawn out and agonizing death than option 1) ??!!
PS I also have COPD so increasing the opioid dose to lessen the symptoms would probably kill me anyway. This may be my 3rd and best option.
PPS I am 74, I live on a pension. I can't possibly afford to take legal action for compensation.
Hi, no I don’t mind at all, thank you for sharing your journey. I’m sorry it’s so horrific and I fully understand the implications of all those issues you’re facing. It certainly highlights the traps we can get into, and I do think it may well get harder and harder to manage these issues as we get older. Not just because we’re no longer all on board perhaps but simply because the nervous system changes and we have more entropy to fight.
One thing seems quite certain, and it’s that you should probably try and get off the Ropinirole. Buprenorphine isn’t the only option, of course, and it certainly seemed very different to me than anything I’ve ever tried. It’s a a kappa antagonist which means that it prevents certain opioid receptors from working as they normally would, and for some of us, it’s simply draining our reserves. Unfortunately, Tramadol can give rise to augmentation and this is something for you to be concerned about, I think.
I have a theory that serotonin levels go up as we grow older, it’s a natural progression, but for some of us who always had low dopamine, this could be disastrous. This is another reason for not using Tramadol, as it’s a known contributor to serotonin toxicity. I’m finding that I don’t tolerate anything that increases serotonin, and that’s most drugs, herbs and supplements. And unfortunately it seems to include opioids. I’ve been trying to find a serotonin antagonist that would work, and then I had a brain wave. There’s a sleep medication I’ve been on for years that allegedly lowers serotonin because of its antipsychotic action. It’s called quetiapine. I’ve tried to manage without it because it also increases RLS. But I took some last night along with a small dose of the morphine just 5 mg to begin with, then another 1-2 mg later on, and I slept through the night, in fact a total of 14 hrs. Unfortunately I still have a bit of Buprenorphine in the system so I’m not sure whether this idea will hold as the Bup is still affecting me. But I think the fact I was using quetiapine last summer could well be the reason I coped on small doses of other opioids until I went on Buprenorphine. I’ll write another post about this, I think.
I know we all hate complicated medical regimes but there is bound to be some combination of medications that will help you get off the Ropinirole while still getting some sleep. I certainly hope so! The problem is that we can’t rely on the doctors to see the whole picture. I can imagine the terror you must be feeling at the prospect of not getting through this ordeal and giving up on life just because the medication wasn’t right (now and in the past). I’ve had similar thoughts myself. I’m really sorry! I hope some of what I’ve shared here is somewhat helpful.
Thank you for this kind and thoughtful response to my e mail. I will follow your next post with interests! If opioids increase Serotonin then we might indeed be barking up the wrong tree....
Yes, I noted that you’re an academic like myself, so I thought you might be interested in some of these ideas. The problem with all drugs is that they do different things to different receptors, and you can certainly get paradoxical results. I don’t know of any doctors who really get this tbh… their understanding is usually very superficial. so i’m trying to figure it out or at least reasonably, and then communicate with my GP who’s thankfully not the most judgemental of them all. I’ve done so many experiments with drugs and supplements that I can see that serotonin metabolism is a big problem for me, and it’s no surprise that serotonin boosters have a bad rap amongst us RLS sufferers as well, but not everyone is hyper sensitive. So my point is that the opioids do work but they also have some knock on effects on serotonin and dopamine receptors that can overwhelm the system. You may want to look up serotonin syndrome, it’s an interesting topic. Here’s a really good article: academic.oup.com/painmedici...
Thank you for this. Yes the connect with serotonin Syndrome is very interesting. I look forward to hearing more on this. There has to be a cure for this affliction? Have you come across the anti-spazmodic called Baclofen? It's used to treat people with MS. I just started and had my first night sleep for days. There has to be a hitch!
Hm, thanks for reminding me of Baclofen. I used to take a muscle relaxant some twenty years ago, it was helpful until they withdrew it from the market. But the RLS wasn’t that bad then, I was able to control the sleep with zed drugs. Baclofen works on GABA so it shouldn’t have an effect on the RLS. Are you still finding it helpful or was that just an initial reaction (I often get relief from new meds for a few days and then it turns around).
You do need to get to some kind of baseline and allow your dopamine receptors some respite. At the moment I’m juggling a range of medications and am just very grateful that my doctor isn’t too fastidious and controlling. The difficulty in all of this is that the substances that help us sleep are the ones that are causing me problems. So serotonin should synthesise into melatonin and get us to sleep, but it does the opposite to me. I’m desperately trying to find ways of lowering the serotonin without losing the sleep inducing qualities.
I read an article suggesting that histamine can lower serotonin. I actually found about a year ago that certain amino acids help me feel better and amongst them is l-histidine. Histamine levels tend to get low as we age. Most people with chronic illness complain about high histamine levels but I don’t see that being the case with me. There’s something else at play. So I take l-histidine as well as choline, which also counteracts the effects of ageing. I don’t know if this is of any help to you but thought I’d mention it. I think geriatrics is a very poorly understood aspect of medicine and ignorance is causing untold suffering. The other thing is that people stop moving as they get old, it’s natural but also causes further deterioration. I find that daily exercise gives me a small dopamine-endorphin kick that helps me feel better in myself, but I’m really struggling to think of other ways of raising the dopamine naturally.
Ahhhh, Now I am really paying attention! Thank you. What are z drugs please and also what does Gaba actually mean in this instance.? Gaba as in Gaba Pentin? As distinct from dopamine agonist as in Pramipexole? Thank you! I just realized I have been familiar with this terminology without realizing what it means from a neurological point of view. You sound like you have been around the block a few times with regards this territory and I would really be very grateful if you could please possibly find the time to explain to this un-initiated idiot why Baclofen won't work.
Thanks, I have tried my best to get to grips with neurology, in an effort to help myself when doctors don’t even know the basics, and I’m happy to share insights but I’m groping as the info that’s out there is contradictory and murky. I also suffer from brain fog, so it’s not easy! But I try… It’s true that gapabentin has affinity for GABA which is an inhibitory neurotransmitter that’s required for sleep, but it also acts on glutamate, which is actually what GABA is made from. Glutamate tends to be unruly in people with chronic diseases and has been hypothesised as involved in RLS. I’m not sure why it can work for RLS more specifically. Have you tried it? I don’t seem to respond well to it.
Dopamine agonists are a different thing altogether and there are many different types. The ones used for RLS increase the precursor L-Dopa that turns into dopamine. These drugs are also used for Parkinsons. Unfortunately over time, the receptors can get lazy and there could be irreversible damage, even. These drugs are also black listed for serotonin syndrome because dopamine and serotonin are co-actors in the nervous system (but I don’t know exactly how it works as it’s vastly complicated, I only know they have to be perfectly balanced in relation to one another and too much of one can drain the other).
The Z drugs are benzodiazepines and non-benzodiazepines such as Zopiclone. In 1999 when I started to suffer from insomnia, Zopiclone helped restore both my sleep and mood. They say its action on GABA is quite simple and it’s one of the neurotransmitters we need for sleep, of course. To me it’s completely different from Gabapentin as it has none of the nausea inducing qualities and it actually does work as a sedative. Then there is the added bonus that some of these drugs seem to have some serotonin lowering qualities as well. I’ve always responded favourably to Zopiclone, it’s the only medication that gives me a slight happy feeling too, and it still works after twenty years which must say something about its usefulness to me personally.
But it doesn’t directly control RLS and so as my RLS has been progressing over time, I’ve had increasing problems dealing with it. This is why I’m now finally attempting the opioids. Unfortunately I’ve also become increasingly sensitive to drugs. I’m 56 and not sure how to carry on!
That Baclofen might help in some ways though? Are you still taking it and has your sleep been any better?
By the way I’ve tried Dipyramidole as suggested below but I didn’t tolerate it either, it gave me stomach pain and worsening diarrhoea.
Feel free to PM me also! I don’t know if I can help but I’m happy to try and discuss the issues.
Please don't give up on life ! Did you ever have your ferritin tested? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice. Don't try to go cold turkey on pramipexole. reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You will probably need to reduce more slowly or with a smaller amount. Some people have even shaved a tiny amount off it. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer but not as bad as going cold turkey. Another possibility is to switch to the 1 mg Neupro patch. It is a DA too, but less likely to lead to augmentation and easier to come off it. You can cut the patch to reduce it. Meanwhile start gabapentin or pregabalin. Often times combining the two will work. They may not work since you were on pramipexole for so long, but you've nothing to lose by trying. beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US. I don't know about Canada.) It won't be fully effective for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or 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 of pregabalin) daily." However you may need more. 3600 (600 pregabalin) is the maximum dose. If it doesn't work, withdraw very slowly and you will have no withdrawal effects. If you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Thank you dear Sue. Thank you as always for being there for all of us. I will look into the Dipyridamole and talk to my doctor about getting some. Also thank you for the very precise information about Feratin levels. I will get another blood test and this time get the data that is required. As for Baclofen, I am unsure. I think it is helping but it certainly isn't very dramatic! Again I will let you know how it goes.
After you are off pramipexole another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
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