about the replies given to the many RLS sufferers who are struggling with their medication. All medications, if you read the leaflets, have side-effects and complications and at the end of the day, we have to weigh up which ones are going to be effective for each of us individually.
1.Dopamine Agonists (DA’s). We all know they may cause Augmentation, particularly when increasing the dose. However, for many years (I am talking about 10-15 years) DA’s seem to have helped most of this RLS community, even though not entirely satisfactorily. Contrary to what is being said on this Forum, DA’s are actually still first line treatment according to the UK NICE Guidelines, together with:
2.Alpha-2-Delta-Ligands (A2D Ligands). These drugs may be effective for new RLS patients and are generally preferred for people with severe sleeping problems. However, I notice that for nearly 18 months many of us have been encouraged (and still are) to come off the DA’s (with scary stories about Augmentation) and to switch to A2D Ligands, although we were not told that according to Dr. Buchfuhrer (and I quote from my recent correspondence with him): “Gabapentin-like drugs do not work as well once a patient has been on a DA”. My concern is the many upsetting stories from people trying to come off the DA’s and onto Gabapentin or Pregabalin. Apart from suffering terrible withdrawal symptoms from DA’s, they often find that Gabapentin-like drugs do not work well and/or may cause side effects, such as memory loss, vertigo and in my case, deterioration of eyesight.
3.Opioids (such as Codeine, Oxycodone, Tramadol, Methadone and Buprenorphine). My real concern is the amount of Morphine these contain. 0.1-0.125 mg of Buprenorphine already contains 10mg of Morphine, as does 3.4 mg of Methadone, 100 mg of Tramadol and 7 mg Oxycodone, whereas 20 mg of Codeine (or Dihydrocodeine) only contains 3 mg of Morphine. According to the article The Appropriate Use of Opioids in the Treatment of Refractory RLS, sent to me by Dr. Buchfuhrer: “the comparative effectiveness and side effects of different opioids in patients with refractory RLS needs to be determined” and “larger studies are needed to assess the risk of dose escalation and abuse of opioids prescribed for RLS”.
4.Combination Therapy: According to the above article: “studies are needed to confirm the clinical impression that maintaining a low dose of a DA or A2D Ligand may allow a lower dose of opioid to be used”. I would really welcome further research in this line of treatment, as it means that before people choose to go onto quite strong opioids, they first try and stay on DA’s or A2D Ligands and supplement them with a much lower dose of opioid.
TRIGGERS to be avoided: Anti-depressants, anti-histamines, artificial sweeteners and any foods with high sugar content, such as grapes, raisins, dates, apples, pears as well as margarine, mayonnaise and anything containing Soya Lecithin plus onions and garlic.
Supplements which may help: Slow-Release Iron, Magnesium, Turmeric, Vitamine B12 and D.
So, may I share with you what works for me and has been working for nearly a year: Combination Therapy: I take 0.28 mg of Prolonged Release Mirapex, 0.5 mg of Clonazepam and 2 Co-dydramol. I take one high strength Senokot in the evening for constipation.
I also fast from 11 pm till 1 pm the following day, which means I have my breakfast at lunchtime. My RLS is not perfect, but at night I put my head on my pillow and sleep like a baby, sometimes for 9 to 10 hours. Long may it last!
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Felicity21
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DA's almost destroyed my life - they are used because, well they are used. Augmentation is very common and many people have had their lives ruined with gambling and fidelity problems. They caused my RLS to get worse to the point where I Just wanted to die. Mirapex caused me such deranged thoughts that even years later I can still vividly remember driving to work and having to keep myself distract from the thought of driving my car into another, or even better - a lorry.
Opiates are MUCH more effective with out the life destroying side-effects of DA's. There is much hysteria around opiates, mostly due to the pharmaceutical companies and Drs in the USA prescribing them willy-nilly without due regard. If prescribed and used properly opiates are quite safe and have little negative effects and low levels off addiction. Unfortunately media hysteria (do they ever do anything else?) has left many people suffering. For me there are few drugs as effective as opiates for treating my RLS.
Dietary wise - alcohol, caffeine, gluten and sugar have all been found to be triggers as is stress.
Good list and like you say we have to try and see what drug works for us as are bodies are all different and work in differing ways.
NOW - the problem with your post - sleeping 9 or 10 hours, not fair!! Could you please PM a couple of those hours so I can get a little more sleep
May you always sleep as long as you please without disruption from your body.
Thanks Raff, I cant express how much I appreciated your post. I am going to share your post with my wife. If you don't mind my asking. How long do you think it took you to mentally recover from DA drugs? PM if you prefer an offline discussion.
It's very hard for me to say how long it took to get over the DA's. I can still remember the thoughts on Mirapex, and man they were not nice.
After that and some other drugs I was on the Rotigotine patch which seemed fine until it lost efficacy. When I stopped it my thinking and memory improved but that could also be down to an improvement in other health issues.
Not be too disheartening but it probably took years to come back round, but then again I am on Targinact, Lyrica and Cannabis so God knows what that mash of stuff is doing to me, (although it is better than being on a DA that's for sure). It can be hard to put a finger on it as, for me anyway, it happened slowly not all at once.
A final thought: Even though I know how bad a DA can be, if I was going through a bad time with RLS and it would ease it I wouldn't hesitate to take one, but I'd have exhausted other routes first.
Thanks for your post.I would reassert my constant advice to anyone on this forum, regarding DAs, is to continue using them , as long as they work, BUT ,not to increase the dose if augmentation starts- ie ,the need to increase dose if current dose appears not to be effective.
For me ,the greatest trigger is raising agent. Followed closely by MSG. And then all the usual suspects. Oddly ( but then ,I'm an extremely odd animal) coffee is not a trigger. Just keeps me awake.
The more research the better.
Like Raffs, who, I'm glad to see ,is still alive, low dose opiates ( oxycodone 25 mg pd) has been incredibly effective- and no requirement for laxatives.
My one experience of codeine was extremely unnerving, I really ,really enjoyed the rush and feeling of euphoria, and quickly swore off it as soon as possible.
Research is so important, but needs to take into account the extremely varied nature of this syndrome.
I absolutely agree with you regarding not increasing DA dose if Augmentation starts. That is why I am on Prolonged Release Mirapexin. I take it once a day at 8 pm and like the Rotigotine Neupropatch, it has less chance of Augmentation.
Regarding Opioids, the low dose opioids group is apparently equivalent to 5-30 mg morphine, so anything above that, such as 25 mg of Oxycodone I regard as belonging to the high dose opioids group.
I am sorry your experience of Codeine was rather unnerving. I wonder what the dose was. The 2 tablets of Co-dydramol I take each contain10 mg of Codeine and 500 mg of Paracetamol.
The aim of my post was to promote a balanced view on this forum.
In the interest of fairness, I understand that currently the evidence as to whether slow release dopamine agonists have a lower incidence of augmentation is not conclusive.
Can't kill a bad thing Madlegs1 - sure don't they always say the good die young!
Thanks for sharing your concerns, I see no problem with healthy skepticism and it is good to debate these issues.
As regards the DAs. My approach to these is that if somebody is taking a DA already, then I like to forewarn them about the possible major complications which they can cause. That is how the NICE CKS describes augmentation, major complication.
If any other drug caused you a major complication you'd stop taking it.
Doctors generally don't warn you.
If somebody isn't having problems with their DA, then it's their choice to carry on if they wish and why not. However, if augmentation (for example) starts to occur then at least they can recognise it if they've been forewarned. I believe that many people suffering augmentation don't realise that they are. I didn't when it happened to me, I'd never even heard of it.
If I read of somebody's taking a DA and apparently suffering augmentation, without realising it, then I suggest that they consider weaning off the DA, amongst other things. That is, what's advised in the "augmentation" page of the NICE CKS.
For example, I recently read a post by a member writing against other members who post negative comments about DAs calling them "naysayers". The argument they gave was that if you suffered terrible synmptoms day and night like them, then how could you manage without sifrol (pramipexole) with no apparent recognition that they were actually suffering augmentation.
If I read that's somebody's considering taking a medication for RLS for the first time, again I warn them against starting a DA. Doctors are supposed, by law, to warn people of the benefits and the drawbacks and possible complications of treatments they prescribe and alternatives. People ethically, should be given a choice and legally need to give informed consent.
Doctor seem to do this rarely, many still seem to prescribe DAs without any warning and without any mention of the alternatives.
As regards the ligands. The NICE CKS does mention loss of efficacy, augmentation and ICD and does suggest the ligands as an equal alternative.
Research into DAs shows they are effective in most cases. Research into the ligands also shows they can be as equally effective. It's true that the ligands don't work for everyone. It's true that DAs don't work for everyone. It's true that the ligands cause side effects. It's true that DAs cause side effects. It can be said though that the ligands do not cause major complications to the same degree as DAs.
What you write about combination therapy is interesting and positive. Thanks.
I won't dwell on opioids, I have no great deal of knowledge of these and no experience. However I do know that opioids such as codeine, oxycodone etc do NOT contain morphine.
The way in which the potency of an opioid is measured is by the "equivalent" amount of morphine that would be needed to have the same effect. This is known as its MME (Morphine Milligram Equivalent). It doesn't mean they contain morphine.
The NICE CKS is not actually developed or written by NICE, it's develped by an organisation called Clarity Informatics and it's not necessarily entirely up to date. It still recommends DAs but it also still recommends ligands and people are entitled to a choice. They should be given sufficient information to enable them to make an informed choice.
The latest update of the NICE unfortunately fails to acknowledge the following
Before replying to you, I must compliment you and many others on the amount of time and effort you put into helping people on this forum.
My post was intended to look at the effectiveness of the various treatments whilst at the same time expressing concern about them. We are all different and we are all groping in the dark. Even scientists themselves are admitting that more research needs to be done. So by giving a balanced view of the various options, RLS sufferers will be able to decide what is best for them.
You are absolutely right that we should be thinking in terms of MME (Morphine Milligram Equivalent). And MME is a very good indicator of which opioids are high dose and which ones are low dose.
Let us all hope that future research may shed a light on Combination Therapy or better still come up with new treatments.
NICE CKS is as WideBody says. It's a national government funded organisation, part of our National Health Service. It publishes information to help guide NHS health professionals on managing health conditions. It also publishes the British National Formulary - information about medications and treatments which are licensed for use in the NHS including prescribing guides.
I often give links to the CKS for restless legs, howeverunless you live in the UK you will not normally be able to access it. Which is a shame. Not only is it informative but it enables RLS sufferers to inform their GPs (PCPs) and to challenge their errors with authority.
This is a courageous post and I am delighted to see the praise of the combination system which I myself find very effective. The post does also provide some apparent balance.
However, I would like to point out that most of the posts I read about the downside of DAs are addressed to people who are displaying symptoms consistent with augmentation or may be in danger of experiencing augmentation in due course. It is undeniable that there is a distressing number of people who have been encouraged to take an ever increasing dose of DA by their medical advisors without any apparent consideration to the fact that they may be in augmentation or in danger of it, experiencing impulse control issues and/or would fare better on a different treatment.
It may be that this results in an impression of pure negativity towards DAs but, as both Raffs and Madlegs point out, I have seen many posts where people have been reassured about their DA and given good advice about managing this potentially tricky treatment drug.
Likewise, there is such a strong negative view of opioids amongst the general public (including many rls sufferers) that there may be a tendency for those among us who have found their lives so positively changed when they overcame this bias and agreed to take an opioid, to sing the praises a little higher than if it were a more conventional drug treatment.
Whenever I post about alpha2delta ligands, I try to remember to emphasise the research that shows that they tend to be less effective for those who have suffered augmentation and I have seen others do this also. For myself, I found that alpah2delta ligands were ineffective against RLS and induced deeply unpleasant side effects. I have read many accounts from others who had the same experience. It is certainly not the case that that family of drugs receives unequivocally positive reviews on this forum.
Like you, I am a DA returnee even though I am convinced that the drug caused permanent damage to my dopamine receptors. I take a small dose of mirapexin in conjunction with other treatment drugs. I was encouraged to do this by Dr. Buchfuhrer who, as you point out does see this as a viable option in some cases and there are many posters on the US forum (bb.rls.org) who have done this. This works well for me but I think that my constitution is particularly resistant to augmentation and at the opposite end of the spectrum there are people who start to augment almost as soon as they resume the drug and it must always be treated with caution. I would say as much caution as any opioid or alpha2delta ligand.
Thanks for sharing Felicity and I am delighted to hear pramipexole is helping you & you aren’t suffering augmentation.
I think the main reason many on this site are against DAs is because they have been through horrendous augmentation (like Raffs I seriously & logically considered suicide as it was complete torture). I only advise people to get off the DAs where they are clearly suffering during the day and say they can’t sit still.
Dr Buchfuhrer advised me that Gabapentin and pregabalin might not help as I had such bad augmentation and withdrawal on DAs and he was right. Gabapentin didn’t help & gave me bad side effects . Pregabalin initially helped me sleep but then caused augmentation as well. I came off it in November.
OxyContin is controlling my daytime RLS but doesn’t fully cover my night times.
Interesting that you avoid sugar- it actually improves my RLS.
You’re right that we are all different and have to be aware that all meds for RLS cause side effects. It’s just a shame that most of the suffering on this site is caused by over prescribing of DAs & doctors having no idea how to treat augmentation.
There is currently a research project in the USA to find a drug which will prevent DAs causing the D1 receptors to overreact. This would stop augmentation. The holy grail of RLS research.
Fingers crossed they find it soon & we can all enjoy 8/9 hours sleep.
Stefan Clements of E. Carolina University has been awarded a patent which targets the increased D1 receptor levels in RLS patients suffering augmentation, leading to reduced activation of D1 receptors.
He is planning to run a small pilot study.
It was reported in the Fall 2020 issue of Nightwalkers magazine.
I have no information or details of how anyone can join the study/trial but if you’re in the USA you could try writing to Professor Clemens.
Hi Ranjits, if the co-codamol helps you, then that is great and you won’t have to increase the dose. The great thing is that is a very low dose opioid and works well with the Neupropatch. Forgot to say you can get the Senokot Maximum strength over the counter. Tesco and Sainsbury also stock it. What also helps me is having 6 soft prunes with my cereal in the morning.
I don't believe there are any senokot tablets stronger than the ones you can buy over the counter. Since the only senokot then are over the counter your GP will not be able to give you a prescription, I'm afraid.
Taking cocodamol for RLS isn't a good long term option. Firstly because codeine isn't particularly potent and also because there's not much of it in cocodamol.
Furthermore to increase the amount of codeine you take, you wojuld have to increase the amount of cocodamol. You MUST not so this since this would mean too much paracetamol which is dangerous.
Cocodamol isn't intended to be taken long term. If you wish to use an opioid regularly for your RLS then best to approach your Dr about a more appropriate opioid.
If you do wish to counteract the constipation mre effectively then it can help to drink more and to eat more high fibre foods, gfrains, vegetables and fruits.
There are also a couple of products that may help, lactulose or fybogel can be taken daily ro several times daily.
Strong laxative should be avoided as long term use can cause problems.
Rotigotine patches do tend to cause skin problems I hear.
If you want to stop using them then your options are
1) switch to another dopamine agonist e.g. ropinrole, which (see the discussion above) is possibly not the best option.
2) try switching to an alpha 2 delta ligand i.e. pregabalin or gabapentin.
3) switching to a more appropriate, more potent opioid. Not the eaisest option
Sorry back however, I can find no evidence that oxycodone is converted into morphine. I have read though that the two act on different receptors and hence work differently. This could not be if oxycodone was converted.
I can confirm that Codeine IS converted into morphine. This doesn't mean that there are molecules of morphine IN codeine anymore than there is glucose in a potato.
Ultimately, the debate is about the relative merits of medications for RLS.
I admit to being biased, I had a horrendous augmentation with a dopamine agonist. I switched to gabapentin with which I am entirely satisfied. I've never tried an opioid so have no bias towards or against them.
It is interesting to note that oxycodone, for example, has a higher MME than codeine which might make it a better choice for RLS.
Hi Covenant, Mostly prescribed by my Neurologist who always gives me hope and confidence that if one thing does not work, something else will. My history is Sinemet, then Pramiprexole for many years, then switch to Ropinerole which made me feel so drowsy, then switch to Neupropatch. Switch no problem. He also prescribed Clonazepam to help with sleeping. The patch worked for a while and I eventually was on 3 mg and I did not want to increase but clearly RLS coming back. Adding the 2 co-dydramol worked like a treat. That was in October 2019 when everyone on this Forum was talking about A2D Ligands and I felt I should try that, which turned out a bad idea. My own Neurologist had once given me the name of an RLS specialist in London, Mr. Chaudhuri but he could not see me so I saw his no. 2 who was hopeless and very expensive. He prescribed Gabapentin and advised how to come off the patch slowly. I had a terrible 6 months coming off only to find that Gabapentin (eventually on 1200 mg) did not work and realised that it caused deterioration in my eyesight. So back to my own Neurologist who suggested coming off Gaba and onto the 0.28 mg Prolonged Release Mirapex. So yes I am back on a DA but I am so much better. Again I am adding 2 co-dydramol which just works like a treat. I think combining meds is the answer. I am concerned about going on higher strength Opioids. But there you are, this works for me for the moment. Everyone is different. Take care
Inspired by reports of cannabis helping rls sufferers and unable to access the illegal market here, I started to grow my own and I make my own cannabutter. Unfortunately, it doesn't greatly assist my rls (I note a great variety of responses to cannabis in this community). It does help with sleep sometimes and I find I enjoy it quite a lot. However, for me it is a huge appetite stimulant which is a nuisance and a significant disincentive to taking it.
RLS has rendered me rather lawless and I use kratom (stealth posted from the Netherlands) as one of my main treatment options. For me it is much more reliable than cannabis for my rls symptoms. It doesn't seem to cause the same alerting issues that I experience on opioids and the side effects are fewer. It is also significantly easier to discontinue with fewer and shorter withdrawals.
Thanks for sharing your experience. And, thanks to Raffs for giving me support when I was down.
Here's my story.
I was on low dose opioids (10 mg of Norco) for a decade and that controlled my RLS pretty well. Then I moved and found a new neurologist at the prestigious Mayo Clinic. She extolled the virtues of getting off narcotics and onto DA's, new wonder drugs! Mirapex didn't work but Requip did - for a while. Then, the symptoms would return and we would up the dosage little by little. Then they came back in the morning and then the whole day, and we kept upping the dose more and more. Over 6 years I gained 40 pounds, went $42,000 dollars in debt [mostly Amazon purchases - nothing too extreme but they add up; I always kept track of my money before but somehow the drug made me not care anymore], and slept less and less which made my workload loom over me.
At 6 milligrams of Requip, my legs were straight up torturing me; I despaired. Raffs can attest to that, he saw my post about how I was losing hope - before the mods removed it for "disturbing content" - and very kindly sent me an email that made me feel less alone. I went into the scholarly databases, read the last two years of journal entries, and realized I had to stop trusting my doctors. Against their advice, I begain tapering off Requip and found a new doctor 5 hours away in another state who specializes in RLS; he put me back on opioids.
It took over two years to get DA free, to lose 30 pounds [gained back most of it during Covid isolation but that's another story] and to work my ass off - and rent out my house while living in a friend's guest room - to pay down my debt and repair my credit enough to get an equity loan against my house so that I could move back into it, pay the mortgage, and have money for food, etc.
DA's took 8 years of my life. Now, life with RLS is far from perfect - but I no longer despair so much that mods need to censor my posts. I have found an okay dose of oxycodone [with Horizant, Welbutrin, Lamictal, and Magnesium] and I'm NOT addicted. On the few nights a month my legs stop bothering me after my first dose of oxys, I don't take the second or third dose.
There seems to be a wide variety of experiences with DAs and opioids. Research shows that sufferers of RLS rarely abuse prescribed opioids and I'm still angry that, because of anti-opioid hysteria, I was taken off of a medicine that was working without many side effects and put on one that had a black box warning and almost ruined my life. Frankly, most people who do get addicted to opioids seem to get sick and/or die because they can't get clean and consistent dosages, and treatment is hard to come by and not nearly funded enough. It's the stigma that kills them and it's the stigma that almost took me out.
So, I'm glad to hear so many of us discuss our varied reactions to different medicines [and, yes, opioids are medicine]. Hopefully, we can all agree that it is good to have a wide range of options, to increase INFORMED consent to all the options, and that we should avoid torturing people because of stigma and a lack of awareness of the positive research results about RLS and opioids.
I am so sorry to hear of your awful experience with a dopamine agonist. All the more because the 10mg Norco you were on is clearly a low dose Opioid and it worked for you!
In my post I tried to give a balanced view of the various RLS treatment options, clearly stating that increasing DA's is not a good idea and may lead to augmentation. Regarding Opioids I expressed my concern about high dose Opioids and the MMR (Morphine Miligram Rate) is a good indicator of which ones are low dose and which ones are high. So when people on DA's experience augmentation, I wonder whether instead of increasing the dose, adding a low dose Opioid might help, rather than coming off and going onto a high dose of Opioids.
I agree with your last paragraph and by expressing my concern, it was certainly not my intention to upset anybody. I wish you all the best.
I'm so glad you have found a solution that works for you. I just want to point out that we are all different and what is effective for one RLS sufferer may not work for another. I have been on Pramipex for a number of years. My RLS is getting worse. It affects my arms now and starts earlier in the day when I'm sat at my desk working. That sounds like Augmentation to me. It's affecting my work life my sleeping and general quality of life. I am considering talking to my doctor about coming of the pramipexole and trying gabapentin to see it will manage my RLS better.
Hi there, You are replying to my post of 10 months ago. I am happy to say I am still on the same combination drug regime. I don’t ever get restless during the day but might be a bit restless in the evening. I sleep like a log at night. I found going onto Gabapentin did not help me. It was a terrible 6 months coming off DA and onto Gabapentin. I wish you all the best.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Here's Dr Buchfuhrer's response to Temgesic use
How to escape Augmentation?
Looking for advice, yet again, please.
From oxy to buprenorphine
buprenorphine for RLS 
