Restless Legs Syndrome
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What to do next?

Hi

This is my 1st post I have had rls for about 12yrs mildly to start but getting worse. Currently on ropinirole a relatively mild dose of .75mg but no longer seems to be working (great at first) I am reluctant to increase dose as I've been reading your posts on argumentation. I have a doctors appointment this week and hope he can suggest an alternative, any advise would be greatly appreciated as at present sleep is a luxury I am getting little of. Living in uk by the way.

Thanks

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Hi Operababe,

I live in the UK too and am currently in the same position as you. I'm taking 0.5mg of ropinirole every night but it's not working as well anymore. I know it's due to augmentation, as I've experienced it before....about 3 years ago.

Back then, I had just had my 2 children and my RLS was at a horrendous level. I was taking 5.0mg of ropinirole, which is more than the recommended max. dose (I had worked up from .5mg over a period of about a year). At that time, I didn't know about augmentation (and neither did my doctor), so she was upping my dose as needed, without giving it much thought. Then I joined this site and read about augmentation…..and it completely freaked me out. Honestly, I felt suicidal for a time! I could not see anyway of giving up my meds....but equally, I was terrified of upping my dose any further, as I knew the eventual come down would be worse the higher my daily dose.

Anyway, eventually what I did was.... went 'cold turkey'. I completely stopped taking ropinirole.....I wouldn't lie, it was absolute hell! I tried magnesium oil on my legs, hot yoga, iron tablets, no sugar or caffeine, stretching etc. but nothing worked. I also went to the doctors and tried many different types of drugs. The only drug that eventually worked for me was Pregabalin. It took weeks of trying different drug before discovering Pregabalin and then it took weeks for that to build up in my system and work properly (it was not instant, like ropinirole).

In the meantime, after the initial rebound from ropinirole (which was awful) my RLS did get slightly better and then the pregabalin eventually kicked in. During that period when nothing was working....the only relief I got from my RLS was through having an orgasm! I feel slightly embarrassed for saying that....but I want to give you any help I can and for me, this is the only thing that works (other than meds). I have read in a few posts on this and other sites, with people saying they get great relief from being sexually aroused, while others need to actually have an orgasm. I find it give instant and complete relief from RLS. It also makes you relaxed and sleepy. It only give about an hour of relief....but that's enough time for me to fall asleep. Its worth a shot!

Anyway to finish my story, after a few years the pregabalin stopped working, so I'm back on ropinirole since last August (only 0.5mg), and I'm now augmenting again. I know I'm on a very low dose of ropinirole, but I'm reluctant to increase it at all, given the experience I've had in the past.....so for the moment, I'm suffering with my RLS every night. I've started taking pregabalin again (just yesterday) and at the same time I'm trying to give up the ropinirole. I'm not sure I can go cold turkey again. I think I will have to continue to rotate between ropinirole and pregabalin every couple of months..... unless someone have a better suggestion.

It's not easy coming off ropinirole...but it can be done. So just take any advice you get.....but please try not to up your dose if you can help it!

Good luck.

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Thank you for sharing you experiences with me it really does help I would like to go to the doctors with as much information as possible I never seem to see the same doctor twice and none seem to have a lot of knowledge about the condition. I know I need to come off the ropinirole but not looking forward to the process. And yes I also have found that sex can help relieve rls for a period. Will let yu know how I get on

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I too had problems after 4 years of peace on Ropinirole after which the drs kept increasing the dose and the symptoms worsened. I went cold turkey and had several nights of hell but the problem reduced in intensity. After trying many drugs I do take oregablin but it disturbs my vision so I'm now on iron (which has helped a bit as I'm relatively comfortable in the evenings) then take oregablin for two nights then paracetamol through the night for the third night, then pregablin again. It relieves the side effects of the drug but I do tend to be a bit aware of my legs twitching and crawling which come into my dreams and wakes me on and off but it's just about bearable and I'm getting some sleep. I'm also continuing with the iron. I started at 45 ferritin and am over 70 now with the aim to stabile at between 80 and 150.

However this is a very odd condition and no two people seem to find the same solutions as far as I can see. I went for years with nothing (I remember as a very young child going to my parents in tears some nights to get the backs if my legs rubbed. I also find heat on the legs helps (so a hot water bottle under my calves). But that's harder in the current heat. Hot baths before bed ease it for an hour it so.

No magic answers though.

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Thank you as you say no two people are the same, but somehow it helps to know your not on your own. My favourite place in the middle of the night is my down stairs bathroom which has a stone floor I find the cold numbs the pain and then I can often return to sleep, heat seems to make it worse for me, but I will talk to my doctor about the iron. Cheers

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I feel for you. Like you I experienced Augmentation and went through withdrawal in 2016. I am in the UK and also never get to see the same GP twice so most of the appointment is wasted bringing them up to speed.

Orgasm relieves RLS because it releases dopamine- which helps RLS.

I am now on pregabalin and OxyContin and get adequate relief from the RLS for 4 or 5 nights a week.

I also slowly got my iron levels up from 70 to 170 and am sure that’s why the RLS is stabilising as well as changing the timing of the pregabalin to midnight.

I started a vegan diet 8 weeks ago after reading Raffs’ posts and I definitely think that is helping enormously. If I continue to feel so different, I will make a separate post about it.

I think pregabalin would be a good option for you to try as well as getting iron levels up. Ask for a blood test and get the actual numbers. Serum ferritin needs to be above 100. The receptionist will simply tell you your bloods are normal but serum ferritin of 15 is “ normal “ for most people but those with RLS have to have much higher levels.

Hope you see an open minded GP who knows about RLS and Augmentation.

Good luck

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Thank you only just started to realise that iron levels are so important but will definitely ask to have a check this time

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Ferritin levels Operababe, not iron levels. Ferritin is the iron storage protein. They normally just test your blood iron to check for anaemia. We have 'iron deficiency without anaemia'. You must aim to get ferritin up to between 100 and 250, and check that you remain there.

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Hi Joolsg,

Please can you tell me about the vegan diet and how it's suppose to help RLS.....or point me in the direction of Raffs previous post that you mentioned?

I have primary RLS and have tried all the natural ways (iron, magnesium etc), so I'm keen to do anything that will help with my symptoms.

Thanks, Katie

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Hi Katie,

I can’t find Raffs’ post but he wrote that his very, very severe Primary RLS had completely quietened down since following a vegan diet.

As Raffs has tried EVERY med, and is very knowledgeable, I thought I would give it a go.

I also take 150 mg pregabalin at midnight and 25 mg of OxyContin so I have to say it could be the timing of the meds or a cyclical change in the disease BUT I have notiya definite improvement with 4 or 5 nights a week without RLS.

So, I would definitely give it a go.

It’s easier these days as so many people are vegan so there are plant milks and creams in most supermarkets.

Jools

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Ok, thanks Jools....I’ll give it a go then. I too have primary RLS and I feel as if it’s severe (although maybe I’m just being a wimp about it) 😂.

How long into your vegan diet did you notice the change in symptoms? It would be amazing to find a real treatment that works long term!

I’ve just started back on Pregabalin in an effort to come off ropinrole....but so far it’s not working. I’ll give it another few weeks and if there’s no change then I’ll try the diet.....I don’t want to try both methods together as I want to know for sure what works and what doesn’t!

Thanks again. Katie

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Hi KatieR,

Sorry to hear you are experiencing a recurrence of problems.

I would have thought it might be worth your while introducing pregabalin again and trying a couple of days break from the ropinerole every week or so as you are on such a low dose. You could increase the pregabalin slightly on the days you weren't taking the ropinerole or better still get a prescription for tramadol or codeine for those days. If you do have to stop ropinerole again you could then use the tramadol and pregabalin as your primary treatment.

I have heard it suggested anecdotally that aiming for complete coverage of symptoms can

ultimately mean they reappear. It is said to be better to achieve about 90/95% coverage.

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Hi Involuntary dancer,

Thanks for your advice again.....I'm seeing my doctor next week so I'm going to make notes from what you've said (and indeed what others have said), and take it with me when I see her.

You are obviously very knowledgeable on the subject of RLS. Even though I've had it all my life, I m only recently getting to grips with all the possible treatments. It's a complete mind field! So many drugs have been mentioned and so many different cocktails of drugs, doses and times to take them. I feel like I will never find a course of action that works for me.

Ever since I experienced augmentation a while back, I have been holding back on my drug intake and therefore am always having symptoms. I wait until the very last minute before taking my meds (usually just before bedtime after having an evening of pacing the floor, instead of relaxing on the sofa with my husband). Then I only take a tiny dose and after an hour of twitching in bed, I final sleep, only too wake up super early with symptoms again.

I want so badly to take my drugs before the symptoms start and to take enough drugs to see me through the evening and night...… but I'm just so scared of augmentation! What frightens me even more is the prospect if this getting progressively worse with age (I'm 42). Is this going to be my struggle for the rest of my life? Does every RSL sufferer live like this? Is there a way of living without having the symptoms or do I just need to accept that this is it for me until the end?

There's so much advice being given out, that I just don't know where to start. Or like I've just said....does every RLS sufferer live like this and am I just expecting too much by wanting complete and total 24 hour relief?

Please enlighten me if you can.

Cheers, Katie

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I so relate to the sentiments in your message. I am older than you (53) but still have a good few years ahead of me (hopefully) and don't want to spend them as a sleep-deprived zombie or in a drug addled haze. Like you, it took me years to get to grips with my rls. I merrily relied on ever increasing doses of pramipexole, prescribed by my sleep consultant and subsequently my gp surgery. It was only when I had to come off pramipexole and I realised how few straightforward treatments there were that I started to inform myself. Pregabalin did not really get my symptoms under control and I found it difficult to manage on opioids as they induced alertness at night and I would lie awake all night even though my rls was under control. They also induced central sleep apnea. I really panicked then because I thought I was virtually out of options.

That was when I started to look into it in earnest. I am lucky to have a sympathetic and trusting GP who is prepared to be guided by me as to what medications I want to try. I read very widely, particularly on this and a US rls forum and on the Johns Hopkins website. I also contacted Dr. Buchfuhrer. I experimented with loads of different combinations and systems of drugs. I have no doubt I will end up changing the one I am on in due course. One thing I keep coming back to is that difficult rls seems to respond better to a cocktail of drugs at a low dose than a single prescription drug at a higher dose. This also helps with side effects as the lower doses have fewer side effects. Unfortunately many of the rls drugs do carry side effects.

I totally underestimated the importance of iron in my rls treatment and I now try very hard to ensure my serum ferritin is as high as I can get it with oral supplements. Unfortunately I have encountered difficulty finding anyone here in Ireland who will give me an iron transfusion.

For me it was important to come to terms with the fact that my rls is a chronic condition which has a serious impact on my daily life. I think of it as being akin to suffering a disability - one that is not visible to the general public. The invisibility has both positive and negative aspects. I also think of my life with rls as a journey. It has certainly taken me to some unexpected places and it has shown me aspects of myself that I would not otherwise have encountered. I now almost enjoy using myself as a guinea pig to try to find the optimal treatment regime.

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Hi involuantarydancer,

I didn’t know you were Irish.....I’m from west cork, but have been living on the UK for over 20 years now (and married to an Englishman). Small world eh!

Anyway, thank you for your advise. I think my problem is that I’ve never really read up on RLS properly.....I think I sure read that book you mentioned. I read a lot of random websites and the posts for this site too obviously....but there are so many different combination of drugs being suggested....it’s difficult to know which to try and for how long before you decide it doesn’t work!

I too have a very understanding gp and she does generally give me whatever I ask for (largely because I’ve cried in front of her more than once)! I will do some more reading up before my appointment !

You mentioned Kratom in a previous post. If it’s illegal in the uk, then I assume it is too in Ireland. So how do you get it and can you get in trouble with the law if caught with it?

Katie

Ps: I too have thought of RLS as a disability, but I would never I dare say that to a non sufferer, as they would only think me a drama queen!

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Katie,

Mad that you are from Cork. My brother lives there. Do you miss it?

I agree that there is no point in trying to convince a non-sufferer that rls is a disability. Mentioning my rls to friend tends to end with me hearing about their insomnia and how they have overcome it.

It’s good advice by Parminter to join rls.org. They are funding research (currently into a possible positive impact of ecopipem on augmentation), hold regular webinars and disseminate lots of useful information.

Regarding Kratom, it was criminalized here two years ago (sigh). I order it from Amsterdam (dekratomshop.nl) and they post it in an annonymous parcel. It has no smell and I think it is unlikely to be detected in the post. Raffs says it’s only illegal if used for consumption and that it can be possessed legally as a fabric dye. I’m not sure if it’s true but it helps me to believe it!

If you have a good GP I would second the advice of the others to get prescriptions for everything including opioids. I have stashes of every prescription drug useful for rls thanks to my accommodating GP and it is really helpful in tweaking systems.

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Involuntary dancer,

Ya, I do miss home from time to time. My parents and 3 siblings live there still, so I do go home at least twice a year if I can.

Not sure I'm brave enough to order kratom.....but that's a good suggestion about asking for loads of different drugs. I have always just gotten 1 type of drug at a time, and stupidly I brought back to the clinic, the stuff that didn't work (but now I think maybe I didn't give them enough time to kick in as I was expecting the instant relief of ropinirole). Anyway, at my next doctors appointment, I plan to bring in a list of all the possible drugs and a copy of some messages posted on this site....just to prove that I've done some research and not just looking for random drugs.

Thanks again for your advice and support. Katie

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Katie, no, it doesn’t have to be like this. Don’t be afraid, although there are a few ‘rules’ you may have to keep in mind. ID basically points to towards rotating two different and successful treatments, to avoid tolerance and augmentation. I have very recently started doing that, so I can’t comment on the long term effectiveness. But it is a strategy mentioned in the Clinical Management of RLS book by Lee et al. I take ropinirole (lowest dose) on Fri-Sa-Sun and oxycodon (also lowest dose) on Mo-Tue-Wed-Thu. Bith meds before symptoms start. Once symptoms start it seems harder to get them under control.

Re the huge amount of info, I’ll paste here a few links to articles and a website that are from the most reliable sources and hold the most essential info on the treatment of RLS. Basically, they are several different ways of presenting the same basic info and general approach - but including info to allow for individual finetuning.

ncbi.nlm.nih.gov/pmc/articl...

sleepreviewmag.com/2015/02/...

sleepreviewmag.com/2009/10/...

hopkinsmedicine.org/neurolo...

mayoclinicproceedings.org/a...

Still quite a bit. But you may be able to extract te headlines. The Sleep Review papers are the most ‘accessible’ ones still presenting most if not all of the essential information. I hope this helps you getting on top of the info. If not, ask!

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Thank you Lotte,

I will have a read though everything you’ve sent....and will try to get my hands on that book you mentioned.

I think I just need to find a new approach, as I’ve been stuck in the same 2 med for a few years now...and with debatable success.

Katie

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Katie, I am 73 and I have had this all my life. It does get worse with age, but you have time on your side and research is picking up fast. It is complex, maddening and fascinating in a ghoulish sort of way. We suffer, we weep, then we pick ourselves up and start again.

I would suggest you join the Restless Legs Foundation at rls.org and equip yourself with masses of knowledge.

Meanwhile, do not be so afraid that you suffer so much. Take your meds early, not late, they take a long time to kick in. I take mine in two doses, the first three hours before bedtime. If you leave it until the last minute you will lie down and go straight to hell.

Augmentation is not pleasant, but it is just a fact, a fact that can be overcome when you are good and ready. We all face coming off the meds and the lonely misery of that. You are not alone, many of these good people have done it and survived,

Inform yourself from the best sources such as rls.org, then inform your doctors with a well-organised file of evidence-based medicine.

Inform yourself in particular about low-dose opioids. They can help enormously - if you can get them. America's love of drugs has done us no favours.

Bless.

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Katie, I agree with Parminter r trying to get prescribed a low dose of an opioid. You mentioned before that your gp is helpful. Read and bring the opioid articles and ask for either tramadol or targinact (=oxycodon/nalaxon). The latter is officially licensed (?) for RLS in the UK (and NL where I live, maybe in all of the EU). Otherwise consider buuing kratom as ID mentioned. Falls more or less in the same class of medicines as the opioids.

And consider seriously rotating the opioid with the ropinirole. Your ropinirole dose is still rather low and the rotating may well prohibit tolerance and augmentation. And as Parminter implies, you now know the signs of augmentation, thus can stop fairly quickly if you observe these. I’ll ask my neurologist this afternoon during my appointment for the best rotating schedule ( days as I do now, months or maybe even every day). If she doesn’t know I’ll ask Dr Buchfuhrer. I’ll post the answer.

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Lotte, I have never heard of targinact. What would be the benefit of the combination? Does each opioid act in a different way, on different receptors?

Information about a rotating schedule from a revered source would be a great blessing, to patients and doctors.

BTW, I remember some time ago going onto a site (?) to attempt to contact Dr Buchfuhrer, but I lost my way. How does one do that? He sounds to be both expert, passionate and compassionate - our ideal physician.

Do you have his book, Lotte? I did find it online, but it was published several years ago, and I wondered if, with the new science arriving regularly now, at last, it might not be up-to-date.

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Parminter, the oxycodon in the Targinact is the opioid that is active against the RLS symptoms. The naloxon (not an opioid) is ‘simply’ added to counteract the constipation effects of the oxycodon.

Others may point you to the UK/USA sites that give you such info about meds. Maybe drugs.com?

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Lotte, if you rotate oxycodone over any period longer than a few days I would think you will experience considerable difficulties when the time comes around to discontinue it. I found I very quickly developed a dependency on that drug and I am blessed with a reasonably strong non-addictive metabolism generally. Kratom is much easier to discontinue with significantly easier withdrawal symptoms (I withdrew only twice from OxyContin - wouldn’t want to do it again - but multiple times from Kratom).

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Thanks. That is useful info. I had no problems stopping this past weekend after taking oxy 5mg for 4 nights. And since day before yesterday I have even diminished my dose to about 2,5mg. Last night I took the lesser half (halving a small pill well proves difficult) and it was not exactly enough, but almost.

Following up on your comment, would you think switching every day the preferable option?

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I’m not sure about rotating every day. I never tried that. For some nebulous reason it sounds counter-intuitive - maybe a bit too fractured for your body? But I suppose best way to find out is to try it.

At the other end of the spectrum I think 4 days is probably about as long as I would trust myself to take OxyContin before I would become anxious about physical dependence.

When I was taking it my GP suggested varying the time when I took it so that I didn’t develop a routine around it. I’m not sure how much use that was really as i’m Hopeless with routine and still developed dependence. Thought I’d pass it in however.

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Do you use a Red Bali? At night?

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I started with red vein Borneo but now I also have red Thai and red Sumatra. I havent noticed much difference between the strains. I only use it very rarely at the moment as my current system doesn’t require it often.

When I was taking it I took just before bedtime. I needed nearly two teaspoons (about 3.5grams) to deal with my symptoms at the start of the night (I dissolve it in a small measure of grapefruit juice).

It lasts about 4 hours so I would have to take another dose in the middle of the night - usually I would only need about one and a half teaspoons then. Depending on what I had on the following day, I might take a third dose in the early morning to get an additional few hours rls free rest.

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Dancer, thank you for the specifics. I think I have been taking too little.

Was this piggy-backing on other meds?

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No, the amounts I gave were when I was using kratom on its own. When I first started I began with one teaspoon but that wasn’t enough for me. My rls tends to require quite a bit of medication so I quickly ended up taking two teaspoons. Occasionally when I am relying on Kratom alone, I have to take an additional 1 teaspoon about an hour after the first (2 teaspoon) dose to get control but that is unusual.

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Lotte, That would be amazing if you could post what your neurologist/Dr Buchfuhrer says. I am completely clueless about opioids...but I have started looking through all those links you sent me (it's hard to find the time with a full time job and 2 small kids), and revelling in the knowledge.

Thanks again for your help.

Katie

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Parminter, Thanks for your advice. I have taken that advice and looked at rls.org. There's a world of information there, so it'll give me great food for thought.

I am going to research opioids especially, as I've not tried them. I have tried an array of drugs, vitamins & minerals, lifestyle changes etc....but not opioids!

I will also take your advise about taking my meds early. I presently take them late, in the hope that my small dose will see me through the night.....but that inevitably means an evening of pacing the floor and difficulty dropping off to sleep.

Thanks again for your support.

Katie

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Raising iron levels definitely helps to alleviate symptoms for many sufferers so it is well worth getting your serum ferritin tested (make sure to get the actual figure - they invariably tell you you are 'normal' which is anything from 20 to over 100 - normal for rls sufferers is totally different from the general public). If your levels are under 100 you should start an oral iron supplement, ideally taken every second day on an empty stomach with something acidic - or take 'gentle iron' (iron bisglycinate) which does not require the acidic addition.

Rls often responds better to a cocktail of drugs - each at a low dose - than to a single drug at a higher dose.

I never had much luck with pregabalin on its own but it is helpful for me if I take it along with other drugs. I have started taking mirapexin again at a low dose (0.044mg which is a quarter of the maximum recommended dose) after an 18 month break following augmentation. I take a 2 day break from it every week in the hope of avoiding augmentation this time around. So far it is working well (but I have only been taking it for about 4 months). I also take 100mg of pregabalin and 150mg of dipyridamole. On the days when I don't take mirapexin I get symptoms. Sometimes I take kratom for them which I find extremely effective but it is not for everyone as it is not legal in the UK and has to be ordered from Amsterdam by post. I also have some oxycontin left over from when I was using that to treat my rls. I tell myself that I can take the oxycontin if the symptoms get too bad but so far I haven't actually taken it as I don't hugely want to go through another withdrawal from that drug.

In addition to pregabalin and mirapexin/kratom, I take dipyridamole which was found to be helpful for rls sufferers in a small study. Dipyridamole is a blood thinner and again isn't for everyone consequently. I find it helpful for the creepy crawley symptoms. It also has the effect of making me feel much more myself during the day. Less exhausted and strung out. I also take ldn but to date it is not having any impact on my rls though I think it too is helping with daytime fatigue.

Based on my experiences (but please bear in mind that we are all different), I would definitely not increase the ropinerole dose - if anything I would reduce to 0.5mg - however, rather than discontinuing straight away you could try continuing at that dose but introducing regular breaks from it to avoid any further augmentation. At a low dose your body should be able to cope with short breaks from the dopamine agonist which would not be recommended if the dose was higher. You will need to introduce an additional drug such as pregabalin or gabapentin or a mild to moderate opioid such as tramadol or codeine at a relatively low dose to cover break-through symptoms (assuming that you won't want to try kratom).

If you do decide to discontinue ropinerole, you should try to secure an opioid prescription to help with the awful symptoms that invariably occur when withdrawing from a dopamine agonist. A lot of people on here have success treating their symptoms with a combination of pregabalin and tramadol without a dopamine agonist.

Good luck.

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I should have said that I suggest trying a regime in which you don't completely discontinue the dopamine agonist straight away only because your dose of ropinerole is really quite low and consequently it might be worth playing around with it before giving up on it. This suggestion would not apply to someone whose dose has gradually crept up to anything beyond about 1mg. In such a case, I think the only course is to discontinue completely once the drug ceases to be effective.

I would also second JulesG's suggestions about diet. A resctrictive diet seems to be helpful to a large number of sufferers.

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Thank you so much for your reply, its such a mine field as the symptoms and the treatments vary so much from person to person, but unfortunately no cure. Having a little more knowledge of drugs used when visiting my GP I am sure will help.

Fingers crossed.

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Hi Operababe, do you like opera? I have been listening to Callas singing Lucia and it has cheered me immensely. Music is medicine.

I think that .75mcg is not so little. In my case augmentation started on day one. I am not sure about all dopamine agonists, but mine has 'insomnia' as the first listed neurological side effect, and 'common'. Hum.

I am going to wean with the help of a low-dose opioid, probably starting in the next ten minutes.

When I have a breakthrough, which is all the time now, I take 10mcg methadone, and it disappears like magic.

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Hi Parminter

I love music I sing, light opera, musical theatre and jazz and actually that really helps me, it is a release, but not something you can do in the middle of the night with a sleepy husband upstairs. Appointment with dr. this morning hope he can help not sure if I need to come off ropinirole because I'm pretty sure I'm augmenting on it or weather they can mess around with dose and also take something else. All you guy on this site are so helpful and knowlegable but as everybody is different it just all feels very confusing.

Good Luck with come off your meds

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Go to the doc and sing 'Nobody knows the trouble I see' in a deep mezzo as you sashay into his rooms.

That should blow his hair back.

It gets less confusing if you stick with it.

I am going to polish up some words of show songs.

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Laughing is good med too

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Well saw a lovely doctor today, he seemed really interested but said he know nothing about rls so I told him I thought I was augmenting on ropinirole and asked if I could have my ferritin levels checked they were 91 on my last check so not too bad. He told me he would speak to some of the other doctors and phone me this afternoon. Well I was delighted when he phoned back he had discussed my case and they thought Pramipexole would be a suitable alternative, he also thought it would be a good idea for me to see a neurologist and that they would explore the fact that I had cracked a vertebrae many years ago may have some bearing on it. Well I'm happy to explore any avenue but then I looked up Pramipexole - another dopamine, so I guess he just didn't take it on board. Have to go back to him next week so will try again then

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Well it is fantastic that he is interested but, as you appear to already know, it wouldn’t generally be recommended to change from one dopamine agonist to another.

In fairness, however, you are not a typical case because your dose of ropinerole is so comparatively low (mercifully). Be cautious with pramipexole, if you do decide to take it, as it is stronger than ropinerole. I don’t know the exact relationship between them in terms of dose but it would be a shame if the lowest dose of mirapexin was stronger than the dose of ropinerole you are currently taking.

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Thanks will bear that in mind not sure that it would be a good idea to swap anyway

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