I am currently taking clonazepam half a tablet every other night as my GP was concerned about the addictive nature of the drug. It does help a little but still up every night 2/3 times but managing to get about 5/6 hrs which is a lot better than I've had at other times.
I had a private neurologist appointment a few days ago (been waiting 18mths for NHS). He suggested going back on to Ropinirole as I've not been on it for over 2 years despite suffering DAWS. He suggested the best way forward was to take Ropinirole increasing as necessary to max dose, then swapping to a different agonist if necessary and building up again to max and then a third agonist can be tried before then switching back to initial dopamine agonist again at a low does. I was told the augmentation can often settle once the drug has had a rest.
Please what are your thoughts on this? It sounds like a recipe to disaster to me but if there is any chance of it working will to give it another go.
The other suggestion was to continue with the clonazepam as part of a combination of medications, Pramipexole was mentioned as was Amitriptyline.
They are organising some nerve conduction studies and blood test for the time being.
For the moment I am incline to continue as I am but I moving forward most treatments become ineffective and would love some advice on the suggestions that have been made.
Thank you
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Trust your feelings. I would think the proposed actions would be a road to disaster too. Read the story by Cees Jongenelen on the EARLS website (yesterdays post by Daragh). He takes drug holidays from the DAs, but the times to the next need for a holiday gets shorter each time. I am quite sure a similar thing will happen when you rotate various DAs. Official published treatment of augmentation still recommends switching to another longer lasting DA as one of the (the first?) option. From our pooled experiences here and those of several medical experts in te US, augmentation usually comes back sooner or later, most often far more quickly than the first time. Also, the US experts think it may cause more or less permanent damage, as refractory RLS after severe augmentation is notoriously difficult to treat effectively.
It would be better to come of all DAs completely and try to switch to gabapentin or pregabalin. They take several weeks to become effective. But as said they don't always work after augmentation. Also, side effects can be difficult to handle. Personally I got depressed on already a low dose of gabapentin and just couldn't tolerate pregabalin. The final and strongest option is opioids. In the UK Targinact (a combination of slow release oxycodon (Oxycontin) and naloxone) is licensed for RLS. Recently, several people in the UK succeeded in getting Temgesic (general name buprenorphine) prescribed. In most (not all) it successfully suppressed their symptoms. I am in The Netherlands and also take Temgesic successfully. The side effect of that for me is that it gives me fatigue and makes me mentally slow, but I sleep very well. Look through replies by Manerva for the various links to NICE guidelines.
Before all this, and this is important!, get a full iron panel of your blood, including ferritin, TIBC and percentage saturation. Ask for the actual results, as especially ferritin should nit be just 'normal' but high in the normal range, preferably above 100ng/l and higher wouldn't hurt. If ferritin is below 100 and percentage saturation low, you even qualify for an iron infusion according to the IRLSSG guidelines sciencedirect.com/science/a.... After your blood has been taken, you can easily supplement yourself with iron. Iron bisglycinate is usually best tolerated. It should be taken on an empty stomach, at least 1h before or 2h after food and best in combination with vit C to further enhance absorption. The body has a feedback mechanism that if it works normally it is impossible to get iron overload this way.
If you want more links to the science / studies on which my remarks are based, let me know. I'll track them down and provide links tomorrow.
So what now? Do some more reading on this forum and follow the various links to get yourself thoroughly informed. Ten decide what route you may want to take. I suspect not the one presented by your neurologist. If the neurologist is not open to your information, maybe turn back to your gp A gp is fully able to help you provided she/he is willing to listen to you and read up on recent and formal information (eg NICE). I 🤞🏼iron works for you and after coming off the DAs (slowly!!!) and getting the remains out of your system you will find that your RLS is far better than it has been for a long time. That may not be so, and you may continue to need medicines, but one can always hope.
I have already tried taking pregabalin but unfortunately had very bad side effects from it and had to come off it. I have tried managing with zopiclone and now clonazepam but it helps a little with sleep in as much as I get back to sleep quicker in between bouts of getting up walking around with RLS. Both my GP and the Neurologist are against opioids in any form, I have asked. I was told there was no "magic pill" which I get, but when your constantly on the border of sleep deprivation 1 night of just a couple of hours just seems to tip you over. I think unless you suffer this awful disease no one really understands it. I do read many posts on this community and it is heart breaking at times, but I have gain a large amount of knowledge, certainly enough to question the suggested line of treatment.
My last ferritin level was 90 I believe and I have been taking iron. Do you know anything about Amitriptyline as a treatment?
Thank you for taking the time to give me the advice you have it is extremely helpful
Avoid Amitriptyline like the plague. All tricyclical anti depressants worsen RLS and every RLS organisation lists it as worsening RLS.I really don't think the neurologist has any knowledge or expertise about RLS.
Once you've augmented on Ropinirole, you'll quickly augment again. I don't think the receptors reset themselves in the same way as when you take an opioid drug holiday because DAs overstimulate D1 receptor and they believe that's what drives augmentation.
Dr. BUCHFUHRER & Dr. WINKELMAN both point out that Alpha2Delta ligands like gabapentin and pregabalin aren't as effective for those who suffered bad augmentation and withdrawal and low dose opioids are therefore the best option.
I'm stunned at how many neurologists know so little about RLS.
Thank you Joolsg, its awful to think that these specialists are offering such bad advice particulaly with regards to drugs that worsen RLS. I have learnt the hard way not to just accept their advice hence the post.
Sounds counter-intuitive to everything I've experienced and learnt on this forum! The idea of going to a maximum dose on one DA and then dropping to a minimum dose of another, sounds pretty disastrous to me. My doctor once tried to change my DAs and got the equivalent dose all wrong and I ended up in a terrible state for a few days until I ignored their advice and went back on the prami.
Why not send an email to Dr Bruchfuhrer saying the same as your post here. He's always replied promptly to my enquiries in the past with sound advice and he must be one of the world leading authorities on RLS. I'd be interested to read his reply!!
Hi, Yes he name is Dr Buchfuhrer (I may have mis-spelled it before) and his email is somno@verizon.net.He is at the Mayo Clinic in America and is often referred to on this forum. He's an advocate for low-dose opioid use for RLS - which is why we contacted him - but he seems to be very knowledgeable on RLS medications.
His responses are usually concise and to the point. I hope he can advise you regarding the DAs.
I can't believe your neurologist suggested amitryptiline. This typically worsens RLS. In the interests of fairness there are a few (a very few) people who find it helpful but against those are many who report their rls worsening appreciably on amitryptiline. I would be suspicious of any recommendation from a medical practitioner who would suggest amitryptiling for rls.
I agree with all the comments above concerning returning to a DA post-augmentation. It is to be avoided for all the reasons set out. However, I resumed pramipexole 2 years after discontinuing it post-augmentation. I take 0.088mg daily which is the lowest dose without splitting the tablet. I don't propose to increase the dose and when I feel it is becoming ineffective, I take a break. At that dose it's not sufficient to control my rls on its own but it means I can keep my opioid dose low (I take temgesic and/or kratom) and avoid the worst of the exhaustion, cognitive impairment and other side effects I experience on opioids.
I have been taking this dose of pramipexole for about two and a half years - with breaks. I do think that pramipexole damaged my dopamine receptors (prior to discontinuing it in 2016 I was on a very high dose and had been taking it for about 10 years) and I wish I had never been prescribed this drug in the first place. I am also not sanguine about what the long term impact will be of resuming the drug but certainly for now it allows an almost normal life in my difficult to treat rls.
Good question! I usually try to ensure my serum ferritin is high before starting a break. I cut back by about a quarter of a pramipexole tablet every 10 days or so until I am off the DA (about 30 days from when I start). Then I remain off it for between 3 and 6 weeks depending on what's going on in my life and how much I need to be able to function. I resume by taking a half tablet. It's never long before I need to go back up to a full tablet (usually about a week) but I always resume first with a half in the hope that it will be enough - I am optimistic by nature.
I don't at any stage experience the awful increased symptoms that are attendant on post augmentation DA withdrawal when, typically, a higher dose is being withdrawn from.
However, my symptoms do increase and it's hard to bring them under control with opioids and kratom alone. It's not the worst I have experienced (I went through months of DAWS after I first discontinued pramipexole in 2016 after 10 years on a very high dose) but there is always a sense of things being out of control and a feeling of chaos in my management of my rls when I am on a break.
I also suffer from profound 'alerting' induced by opioids so even though my rls symptoms may be controlled, I will lie awake all night in an opioid induced fug unless I keep to a low dose. It's not unpleasant (not like when being kept awake by rls) but it means the days are a write off because of lack of sleep. If I do manage to get to sleep, I experience opioid induced central sleep apnea.
Alpha2delta ligands do not control my symptoms at all so they are no use to me. I hate the side effects of those also.
I hope that answers your query but please don't hesitate to ask for further elucidation. It's not always easy to know if one is supplying the required detail.
Many thanks involuntarydancer, your reply has helped a lot. Can I ask what opioid you take and do you have any withdrawal symptoms when you come off? Is your routine 6 weeks on DA and 6 weeks off?
At present I primarily use kratom rather than an opioid. It's not actually an opioid but, as I understand it, it operates in a similar way and I tend to lump it in with opioids for shorthand. I find the side effects of kratom less severe - I do not experience the same degree of daytime tiredness and cognitive impairment - and I also find it easier to discontinue. I had awful withdrawals coming off oxycontin a couple of times - not as bad as withdrawing from a DA post-augmentation but ... not something you'd do for fun. The kratom withdrawals are much less significant.
My rls symptoms wax and wane. When they are not too bad I only use kratom and the DA. When they are bad I supplement kratom with either oxycontin or temgesic as I like to avoid taking too much kratom (I already take quite a lot). I probably need to take a supplementary opioid for a few days at a time about every 4 to six weeks or so.
I do not come off the DA anything like so frequently as every 6 weeks. More like twice a year, maybe even less often than that. The process of taking a break - from start to finish - can take as long as 3 months. It takes 30 days to wean out the DA, a further 3 to 6 weeks off the drug and then a little while for symptoms to settle down again when I resume the DA. During that time I have to increase my opioid use which I don't like doing. Last time I came off was over Christmas (2020) and I primarily used temgesic and kratom to cover my symptoms. I find the side effects of temgesic less pronounced than oxycontin and my daytime impairment is less significant but I function much better when using a DA as well because much less kratom/opioid is required.
I should say that I am quite resistant to effects of drugs generally - the opposite of sensitive. It took quite a high dose of DA (I got up to 1.8mg of pramipexole for a few years) before I experienced augmentation and a compulsive disorder (shopping addiction). This may mean that I remain generally fairly resistant to augmentation and, for this reason, others should be cautious about following my example of resuming a DA post-augmentation. It does also seem to be important to keep serum ferritin high when taking a DA.
Many thanks for sharing, I’m fairly new to moderate to severe RLS and currently working on establishing a treatment regime. It occurred to me that rotating medications is one way of lessening augmentation risk and withdrawal symptoms. Your reply gives me hope and more detail on how I should go about it. Can I ask where you get Kratom?
I agree with all everyone has said above. My comment is on the clonazepam. I took .5 for many years (decades actually) and had no problem coming off it slowly when I no longer needed it. I wouldn't worry about getting addicted. So I would suggest increasing it to a full tablet since it helps you.
I would not go back onto a dopamine agonist medication again. Been there, done that and never again. I took Sifrol (Pramipexole) for over 10years. Ended up well over the recommended dosage. It took me 2years to slowly wean off. I used Endone 5mg (oxycodone) to assist me to wean off towards the end.
While on Sifrol I put on 30klgs in weight approx, I developed a shopping addiction and suffered with increase in anxiety and depression.
I now use Temgesic sublingual 200mcg tablets to control my RLS.
I place two Temgesic tablets under my tongue an hour before bed. Temgesic is micro dosages of Buprenorphine and here in Western Australia I needed to get an authority form completed by my GP to gain permission for me to use a controlled drug.
I have suffered with RLS for 50 years now and have tried most of the various recommended medications on offer.
I avoid alcohol, sugary drinks and too much sugar intake in general.
Some food additives and preservatives can be a problem also.
Thank you, I am sure you are right and that going back to DA s is the wrong thing to do. My GP is adamant that opioids are not advisable to use but can't be any worse than suffering with DAWs.I do watch my diet no caffeine, alcohol and very little sugary items but not sure it makes much of a difference.
Appreciate your advice think I need to work on my GP
Hello, here in Australia the majority of Doctors and Neurologists know very little about how to treat RLS. I was fortunate to come across "Shumbah" who is a member also on this site. Her name is Kester and she traveled from Australia to America seeking help from the specialists at the John Hopkins Medical Center. They are at the forefront of research into helping people who suffer with RLS. This is how I heard about opioid treatment for relieving the symptoms of RLS. Kind regards Julie McGowan
I have been taking clonazepam for about four years. Started with 0.5 and now onto 1.5 dose two or three times a week. Definitely less effective and I think 2.0 is max dowse. I have not found them addictive but considering alternative options now.
I have been on ropinirole for 3 years. Every night at 7pm 2.5mg. When I have a bad night I take 10mg of amitrytline in addition as required. In bad bad night's I do as above and put my feet in ice for 5 mins. I get 6 to 8 hours sleep now on that regime opposed to 2 to 4. Hope that helps x
I have had RLS many times and had to wrap my legs in elastic bandages at night. This would create a risk of blood clots for some people. I do find that taking iron pills helps with the RLS more than anything does.
Hi, I can see you've had lots of good comments which can be very helpful.
As regards my own opinion clonazepam is not really a good option for RLS. It is only recommended as a short term measure if there is insomnia.
You will get contradictory remarks about it being addictive. However, even though apparently some people take it for years and although they may not be "addicted", they will definitely be physiologically "dependent" on it. They have to keep taking it to avoid withdrawal effects, whether it's actually doing anything positive is dubious.
Tricyclic antidepressants like amitriptyline are known to make RLS worse and in fact most antidepressants do, this includes SSRI antidepressants and others.
Iron therapy is a well recognised treatment for RLS as iron deficiency is the main cause of RLS.
Opioids are recognised as a treatment for "refractory" RLS in the UK. Neurologists may be reluctant to prescribe one as a matter of personal choice, but they can prescribe one if they're willing.
I'm not aware of any official guidance on this, but Targinact, which contains oxycodone IS licensed for refractory RLS.
As evidence follow this link to the British National Formulary prescribing guidance for targinact published by NICE.
Some members in Australia and some in the UK have been successful in getting a prescription for low dose buprenorphine (temgesic in the UK). This appears to have less problems than oxycodone.
If you choose to pursue getting an opioid then you will need evidence to support your case. Dr Buchfuhrer and the BNF may help.
Another option is to contact Shumbah in Australia. Follow the link below and click on "Message", top right, to send her a private message, she has done a lot of work into getting buprenorphine accepted.
Many thanks Manerva, I have now sent an email to Dr Buchfuhrer, and will check out the links you have provided, insomnia has very much become a problem with the restless legs so the clonazepam does help to address that but I realize it is not helping the RLS. I do to some extent feel that the DA's have caused the insomnia, not sure if that's possible. But thank you again always good advice.
It really can’t be right. IVF been on Clonazapan for over 7 years for RLS. It was prescribed by a a Professor after all else had failed. I take one o.5mg per night and haven’t had RLS once since. It is not addictive. I haven’t had any side effects whatsoever Angela
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