I am new on this forum and am suffering like hell with augmentation. I've had RLS slightly since I was 27 now 74. GP diagnosed cramp in those early days and told me to drink tonic water. Things got worse and saw a neurologist (at my expense) some 12 years ago and put me on Rotigotine patch 1mg. Things worked well then medication didnt work and GP put me on Ropinirole at 1 mg then things got worse & put me on 2mg slow release. Things got better for a while, then augmentation raised its ugly head only knowing what it was by reading up on it. GP had no knowledge of this at all. Meanwhile I've been on Pregabalin for neuropathic pain during this time and still on it with increasing doses. Went back to neurologist who seemed none the wiser and told me to increase Ropinirole but to me that seemed going in wrong direction. So I decided to decrease by 0.25 Ropinirole as I find I am sensitive to this. Now got another week to go before I finally come off Ropinirole but suffering like hell with augmentation both day and night, my whole body swings into action and cannot control.
Wondering if I can start on 1mg patch Rotigotine while weaning off Ropinirole as only 1 more week to go before I finish. GP's have no idea what to tell me so I ask if they could spend time in reading up on this condition. I'm totally lost and chronically depressed. So tempted to start Rotigotine but could feel a lot worse. I know we are all different. Bur I'm in a very bad way.
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Hi , my story is pretty much yours. Been on dop agonists for 26 yrs . Neurologist wouldnt accept augmentation . In March made this huge decision to get off my 4mgs ropinirole and ive done it ! The dark suicidal nights still haunt me but you can do it. You need to be on Gabapentin now and I also take 2mgs Clonazepam at bedtime and 10mgs of Targinact. I had to pay AGAIN to get this as my gp woulnt. Days are perfect now and nights 80% better. I had endless suicidal thoughts and still very traumatised but this group (mostly Sue ) got me through it. Dont take Rotigotine its another dopamine agonist . Keep going , dont give up , it will be worth it. Im still juggling my meds but I am getting sleep and very little restless legs . Good luck , be strong , you can do it but you will need some Gabapentin or Pregabalin which is first line treatment to help you . Angela
Tysm for your reply. So kind of you to spare the time. I did go to gp and she said reduce by o.25 for a week. Problem here in UK Ropinirole in this dose is hard to come by now. I was on slow release 2 mg and now reduced down to 0.50, next week to 0.25. I guess no one knows how you personally react to this but perhaps stay on 0.50 for another week (totalling 2 weeks). Just want to come off altogether I’m so bad. Family don’t understand at all. I’m on pregabalin 400mg for fibromyalgia and anti inflammatory for acute osteoarthritis so I don’t always know what pains are associated with what. Although with rls you certainly know. I’ve used hw bottles, they help, magnesium tablets made my stomach bad so turned to spray but didn’t notice any difference. Blood is ok. Had tests. Another reply here which I’ve just read is don’t go on rotigotine as it’s similar. So how do I manage this? Perhaps once off Ropinirole rls May have gone altogether 😊. Though probably not. I’m on maximum pregabalin, oxycodone (1 at night) which I forced gp to give me and cocodamol. Yes I get suicidal thoughts. Does all this go away once you’re off Ropinirole? Have a break and see what transpires? I’m still coping with my knee replacement due to arthritis so a lot going on plus over the past I’ve had 4 major ops on my spine and having to learn to walk again.
I have a lovely garden and feel some peace there but always worse in winter when you can’t do anything a lot to digest and what’s best who know till you try, but then what direction do you go in if you’re back to square 1? At the moment I just want to die and be at peace
Yes as Sue said you need to slow the reduction down of Ropinirole . Like you I just wanted to get off it asap but then withdrawal is bad . Im still constantly juggling my meds . If i take Targinact 10 and 22 as directed Im like a zombie and cant drive . If i start my gabapentin at 16.30 I sleep most of the evening. My husband and I have finally moved into seperate bedrooms which eases pressure off me but hes not reallyhappy . Tonight is a bad night and I dont know why . Im not so suicidal but my mood is very low and Im just so irritable, dont want to go anywhere or see friends . Im better just left alone . I love housework but cant see the point anymore. Even good friends get sick hearing about my legs . I sent one a video of them going crazy and not even a reply ! Unless you have it yourself its a waste of time . Take care. You are not alone
You are probably coming off it too fast. The normal way is to reduce by .25 mg every two weeks an wait until the symptom settle before going further. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
As you get near the end you will probably need a low dose opioid temporarily to help. Some have used kratom or cannabis temporarily to help.
So I would advise you to go back up to a dose you can live with and then after a few days start reducing as above.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. 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 some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and 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.
hi Sue Thank you so much for your help it does alleviate the thoughts that you’re not on your own
Had blood counts all normal except showed had a low thyroid so meds for that. I bought a massage gun that helps but quite heavy to hold for a long time. Also have a tens machine that helps a bit but not when the whole body goes into a spasm. Over the counter stuff I don’t get, hot water bottles help Can’t bath as don’t have one. I’m on 400g pregabalin for fibromyalgia, oxycodone for pain (1at night), anti inflammatory for osteoarthritis and still recovering from a knee replacement albeit 2.1:2 years ago. Hasn’t worked efficiently enough. I tried magnesium tablets but made my stomach bad so got spray but didn’t notice any difference. Would like to try cbd but not sure how that interacts with my meds. Might need gp advice on that don’t know. They haven’t been great to date. Have no idea what it’s all about so I tell them to read up on it like I’ve done. I don’t smoke, no sugar, little caffeine and don’t eat late. So not sure where I go from here other than reduce by 0.25 every 2 week not 1 Well coming up for another day of hell
I tried Gabapentin but made me depressed and was not going to start Dopamine Agonists and be worse off in the future. The only thing would be opioids and I am not ruling them out one day as I am 75 now and don't have a massive amount of life left. What helps me is CBD/THC and I need a good strong dose. CBD on its own did nothing for me also. My doctor is prepared to give me high strength. This is amazing for putting me to sleep and calming my symptoms - the tension I feel when the RLS surge goes through my legs and back is so annoying, I can also get some relief by going on my exercise bike and tiring my body out, doing yoga and hot baths - enough that I can get to sleep. I wish you well - I know that feeling of it all getting too much. Hang in there.
THC is better than CBD for RLS. Buprenorphine is better than THC. Search for the recent post citing article by Dr. Berkowski. He points out that the "opiod scare" has resulted in people (and doctors) avoiding buprenorphine, when it is really a major tool in getting people off DAs and in ongoing RLS therapy as well. It was aa life-saver for me.
Look at the results of your blood tests and check for ferritin. It is not normally tested. Even if it is, doctors will say it is normal, but what is normal for others is not normal for those of us with RLS. Testing for ferritin is the first priority and is what doctors should do first for RLS.
Trying to get gp appt today which will be end of week so I can get blood test. Results last time for a full blood count were normal. I’m going to reduce Ropinirole every 2 weeks but now on .50 so few more weeks to go which is hell. What do I do once I’m off Ropinirole? Options: leave it for awhile to see how things go. Then where do I go from there? If rls returns what do I do? So many on here with different meds, ideas that I’m totally confused tbh.
I strongly suspect the pregabalin and the oxycodone will be enough after things settle down. Don't worry about it now. You have enough on your plate just getting off the DA.
I’ve just come back from gp with little help. Had no knowledge of the problem which doesn’t surprise me but I went in hopeful and came out tearful. I asked what the latest blood tests were and said normal. After asking what they were she said 170. Asked for another test with informing them it was for rls. and needs to be 200. Labs over here just name it as normal 170. Told increase weaning off but I said no. Keep every 2 weeks. Neurologist said in his report couple months back reduce Ropinirole then try 1mg rotigotine and see how you gl. Aren’t I going back to square 1? Tried yesterday 5mg bunorphine patch but cut a 10 in half as didn’t have any 5mg left. Felt even worse diarrhoea, cold sweats etc., so took it off. Really ill so waiting for a blood test, see results. What next? Nowhere else to turn. UK is useless. Sorry it’s so long winded.
Yes rotigotine is just another dopamine agonist like ropinirole.
On your ferritin, Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout.Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months
Ty for your time. So I’ll wait for results, not expecting anything tbh, and then try this but if results come back as ‘normal’ whatever that means not sure which way to go.
I though it was 170? or was that an older test? If it was a new test then again ask what your ferritin was. Also ask what your transferrin saturation percent (TSAT) was.
ok. Sorry about confusion and so grateful for your help. Do so appreciate you being there for me. I’m all over the place. Chronic depression. Just so worried where I go from here after I’ve finished this wretched meds. I took half a 10mg patch - 5 mg cut it in half and felt even worse so worried about taking that later on. Never happened before.
My ferritin results showed just under 210 say 208. So guess that’s ok? What’s best to do Sue? This week I’ll reduce 0.25 so will take 0.25 for 2 weeks then I guess I finish. So appreciate your thoughts.
You will continue to have withdrawal symptoms for a few weeks and then your RLS will be as it was before you took ropinirole. That is why you want to continue to take the oxycodone to help you through it.
Ask for more. Print out the section on normal amounts for opioid on the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...
Others have used used kratom or cannabis temporarily to help. Kratom is illegal in the UK but Joolsg said can buy from kraatje.eu/contents/en-us/d... and are discreet. Unfortunately although cannabis is legal and can take over a month to get it.
I’ve stopped Ropinirole now and find my body, limbs are jerking all over the place. Got 2 hours sleep last night and nothing really works to help. Hot water bottle eases it a tad but difficult to balance. Still take 1 oxycodone at night plus all my normal meds like 400 mg pregabalin a day and cocodamol but don’t control rls. I did download the link you gave me and gave to my gp. He did flick thru it and commented that the meds mentioned I am on. He apologetically said he didn’t know much but will leave copy of link in the dr’s lounge. But he suggested I went to clinic I think it was in Queens square, London and pass on my info on for reference. So now I wait to hear, could be in 9 month’s time! After all it is the NHS. Can’t afford to go privately, already spent £650 for nothing
So having chronic problems , no sleep, walking around house in night to walk it off so need some help it’s driving me mad so depressed too it just helps a tad writing to you on this What am I to do? I’ve got 1 mg patch Rotigotine in cupboard and so tempted. Is it worth going on this? Read in the d/l that patches don’t give so much augmentation than Ropinirole.
No don't go on the rotigotine patch. That's not going to solve anything unless you have a lot of them - if so reply back here and I will give you some different advice on how to reduce from them.
You didn't follow my advice and change over from the slow release to the regular release so you could go more slowly. That is why you are suffering. To repeat what I said 10 days ago since this thread is so long: "A 25 mg slow release tablet is equivalent to taking .25 mg twice a day, so when you reduce by 25 of the slow release tablet you are in effect reducing by 50 mg. Instead you need to ask for regular 25 mg tablets and you need twice as many so you can take 50 mg a day. This is why you have been suffering so. You might even want to go back up to 75 mg and wait until your symptoms settle before starting to reduce again."
Can you phone your doctor and ask for a prescription for the regular ones? If so then I would go back up to what ever dose it takes so your symptoms aren't so bad and start over reducing by ,25 mg every 2 weeks.
Ty for your time here. I was originally on 2mg slow release. I reduced down eventually over period of time to 1mg regular then reduced to 0.75 then 0.50, then 0.25 at a time every 2 weeks. So now my 2 weeks are up on last dose of 0.25 Hopefully that makes sense. Midnight here not much sleep, my own fault I guess. I don’t think severe fibromyalgia and osteoarthritis in legs don’t help. I’ve got 2 months supply of rotigotine 1 mg but not using them and see what happens with me. My gp who was understanding more of situation is now away for 2 weeks. Other ones won’t prescribe if they don’t understand. Cocodamol help.
I'm sorry. I made an assumption and I was wrong that you hadn't gone on the regular ones. Were your symptoms manageable on the last 25 mg? If so you might want to go back on it and then get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. It will take you longer to get off it, but your symptoms won't be so bad. Be sure to wait until your symptoms settle before making each reduction even it it takes 3 weeks. If longer than that then you are reducing by too much. Take your time.
Did your GP refuse to prescribe more oxycodone since you are on a low dose? When he is back you might phone him and ask for zopiclone which is a sleeping pill if needed. Tell him it would just be temporary to help you during this time, You could also ask for trazodone which is an antidepressant again telling him it would just be temporary.
Ty Sue for your help. Much appreciated. I seem to be ok coming off altogether on Ropinirole but have small sessions late afternoon which I’m trying to work on. At night intermittent too but more aggressive. Also osteoarthritis and fibromyalgia set in badly on my legs and always at night so little sleep. It’s 3am here trying to distract pain. I will ask for more oxycodone but had to persuade gp big time. Others wouldn’t prescribe at all. Sleeping pills are a big no no here in uk but I’ll ask. Simply because too addictive. Would you mind telling me how I manage this wretched RLS ? Without the Ropinirole and Rotigotine please. Ty.
Ok ty. Been on pregabalin for years it didn’t make any difference. Oxycodone not that long. Hope so don’t hold much luck tbh. If that’s all then when it gets bad I may well use rotigotine
Pregabalin doesn't work for RLS until you have been off ropinirole for several weeks and your symptoms have settled. If after that you are still having problems I may have another suggestion.
Thank you so much for that glimmer of hope. So grateful. Seeing gp Monday about sleeping tablets. They are so anti on them which I understand but need them to understand where I’m coming from. Also asking for more blood tests.
I have used Hylands restful legs. It helped for several months and then stopped working. At that time however my RLS was still mild and I wasn't taking any medicines for it. No harm in trying it but I doubt it will help with your severe RLS from augmenting.
Again if it is too bad, go back up a step and use a jewelry scale to make smaller reductions.
So you reckon it’s just for mild rls. Which you have now? Or did? What meds are you on now then? I’ve ordered them to try out & hope no interactions with pregabalin & oxycodone. If I may can I let you know how I get on?
I was on ropinirole increasing to 4 mg and then augmented and came off them. I am now on 1500 mg of gabapentin. There shouldn't be any interactions. Of course you can let me know how you get on.
Gabapentin completely controls my symptoms. I also occasionally use pregabalin when it is inconvenient to take gabapentin in divided doses. For me they work the same.
You’re so very lucky and fortunate to have it under control. Pregabalin doesn’t do much for me. Guess it helps fibromyalgia. I can see myself going on rotigotine tbh. Wretched OA is big time. Get quite suicidal tbh. Sleeping couple of hours a night and looking after husband with severe health issues. Let’s hope otc stuff may help me. Take care.
Saw gp today with little help other than told to talk to a therapist. I’m in a very bad place still and I know it’s not right and May regret it later on but went on rotigotine over w/e. Obviously feel so much better and sleep better. It’s a short lifeline and did read rotigotine has less problems than Ropinirole for augmentation but now have appointments with Queens who are the top people in nhs to understand and give tests etc. tried hylands with no effect unfortunately. Gp wouldn’t prescribe antidepressants or sleeping meds. Don’t know length of time with rotigotine on 1 mg but in need of something. Gp won’t change my meds. Not at all happy about this but everything has been checked and they won’t treat me any further. Relying on Queens. They do ct scans, all sorts. What can one do.
Not sure. Waiting to hear. Sent an email to them as didn’t understand why I should have an appointment at Chalfont St. Peter when London by train is probably 45 minutes away and being disabled too would be a problem. Heard from them saying there was a cancellation and 09/24 was available, then another email saying appt now available 04/03 in another clinic at the queens! Surprising what you can achieve but did reply that it has to be for rls and not epilepsy .so now waiting. Do so hope this is a positive step forward. Gp told me she knows a professor there! What’s that got to do with it! What are your thoughts about rotigotine? I know it maybe a wrong move but under the circumstances I was willing to take a chance for short term as gp won’t change anything as she knows nothing about it. Soon as I hear I’ll msg you. Think it’ll be just a clinic name.
There is a Professor Matthew who is also a doctor who treats RLS but he believes ropinirole is safe from augmentation up to 2 mg and he won't prescribe buprenorphine which is the best opioid because it lasts 24 hours while the others only last 4 to 6 hours and he won't prescribe oxycodone unless you have tried the rotigotine patch first.
Call and ask as I sure wouldn't advise you see him. Instead ask your doctor to refer you to a neurologist. Can you afford to go private?
And no - being on the rotigotine patch through 4/3 will be enough to make it harder to come off of and yes it takes longer to augment but is harder to come of. If you absolutely have to cut it in half.
Been on rotigotine now nearly 2weeks and rls started up. Started patches as so desperate but not working as I thought Started on 1mg then after a week on 2mg with no difference. Not feeling happy at all. Seeing neurological hospital next Monday but devastated.
Hopefully the neurologist will be able to help you. I'll keep my fingers crossed for you. You certainly have been through a lot and deserve some relief.
Had meeting with neurologist and tried a different way of taking my meds. She thought I had extreme rls and suggested I take more pregabalin. I’m not understanding what she has written. I’ve asked pharmacist and told email her office but no reply will be forthcoming for a long time under the nhs.
My gp is away and I’m now on 2mg patch rotigotine with last few days suffering from augmentation. Never had that before with the patches. Suffering quite badly and no sleep. Today I took 1 x 1mg patch off to see what happens. I’m hoping I’m able to copy the paragraph from neurologist to you to see if ur able to help me. Is that ok? I’m at my wits end.
I’ll write it out best way I’m already on 200mg pregabalin am and 200mg pm + oxycodone at bedtime.
In view of serious augmentation ideally be on as little dopa agonists as poss increase pregabalin dose and splits this in 3 doses per day. Take evening dose later abt bedtime but instead add an additional dose later afternoon, early evening abt 6pm. Start at 50 mg and can if needed increase in 50mg steps no faster than every week, max total dose 600mg/day when reach pregabalin 500mg/day suggest reduce Rotigotine patch to 1 mg. Don’t go on Buprenorphine patches .
She sent a script for 50mg 1 to be taken 3 times a day. This is what’s confusing me . How & when to incorporate it all
I remember you are taking the pregabalin for your fibromyalgia. Does the 400 mg you are taking cover that? If so there is no point increasing it for RLS as it won't help much until you are off the rotigotine patch for several weeks and your symptoms have settled and 400 mg is a lot for RLS and you may not need more than that. Also the evening dose should be taken 1 to 2 hours before bedtime.
Dropping the patch from 2 mg to 1 mg is way too much of a drop. It is the equivalent of dropping by 1.5 ropinirole or 6 times the recommended amount to drop every 2 weeks of .25 mg. If you have 1 mg patches cut them in sixths - easiest way is to draw lines on them. Then drop by 1/6 of a patch every 2 weeks.
Next time see him/her show him/her the Mayo Algorithm section on reduction after augmentation although it recommends reducing ropinirole by .5 mg which would be the equivalent of 1/3 of the patch every 3 days and experience has shown that is much too fast. Still it is a lot slower than what your doctor said to do.
Her name is Dr S Eriksson. She’s put me on the waiting list for polysomnography to review my overnight sleep but waiting times are a year+ my next appointment is in September. I’ve sent an email to her secretary but don’t expect an answer for a long time. This is nhs! Yes 400mg covers pain management for fibromyalgia + rls I guess. I did reduce yesterday down to 1mg from 2 but after your comments I’ve changed it. When I was on rotigotine many years ago I never had any problems like this.
You may remember me from a few months ago and need advice pls. I have gone down to 1mg patch rotigotine now and as told by dr in London hospital to introduce a pregabalin dose of 50mg for 2/3weeks then increase to 100mg around 5-6pm. Still to take 200mg after breakfast and to take 200mg at bedtime as usual. My next appointment with her isn’t till September so I contact her Secretary by email and have asked what happens next? Reply is that she doesn’t know how I will respond to this and taking 1mg Rotigotine. I’ve asked her do I continue with patch or reduce down but still have rls at bedtime and goes on for hours every night. Waiting for reply. But what’s best meanwhile? Is it like this cos I’ve reduced and need to increase patch to stop the rls at night or could it be augmentation and reduce slowly the patch altogether. It’s like Russian roulette. With increase in pregabalin should rls have stopped? Doesn’t seem like it. My hopes are dashed on this. I just don’t know what to do anymore. I’m on 500mg a day now and 600 is max so do you have any concept on the situation
I tool cannabis during augmentation, I don't think I'd have managed without ot, also GREEN NYTOL really helped me NOT BLUE .....I took 2 .....I had an iron infusion to raise my ferritin from 12 to 179 .....symptoms still raging, I take 200mg pregabalin now which after several months of crippling drowsiness 24/7 has now levelled out.
It's a lottery but absolutely would not go on another DA ...hopefully once you are through augmentation you can explore other options x
People. I am going through hell. All i want is to sleep but just impossible. Body, limbs all over the place and pain. What do people do when they are like this? I turn to walking in the garden which is massive but soon get cold this time of year -4 here..I eat all the time, weight goes on and now started going again to Slimming World next week which is free for me. I reduced further by .025 after 2 weeks at Sue's suggestion today (perhps thats the reason why Im like this), so now on .025 for 2 weeks then thats it. Do I laugh or cry!Read the link that Sue gave me and it did say tht Rotigotine low dose isnt so bad as Ropinirole. Not sure whether Id give it a go again once all this rubbish has stopped for awhile. When I was on it, I certainly dont recall augmentation and on it for a few years. Only annoying thing was tht the patches kept coming off. I fully understand the problems that this can cause. Ive doubled up on Oxycodone too tonight but no effect. On here to vent my thoughts, sorry it's so long winded.
In reading over your original post again I realized I completely missed that it is the slow release tablets that you are on. A 25 mg slow release tablet is equivalent to taking .25 mg twice a day, so when you reduce by 25 of the slow release tablet you are in effect reducing by 50 mg. Instead you need to ask for regular 25 mg tablets and you need twice as many so you can take 50 mg a day. This is why you have been suffering so. You might even want to go back up to 75 mg and wait until your symptoms settle before starting to reduce again.
My raging RLS became totally under control when my GP gave me an opioid. Some on this site don't necessarily think this is a good idea, but as long as I take it every night I am RLS-free. I have been taking it for some 25 years - Dihydrocodeine 30mg. I take two, sometimes topping it up during the night. I'm also an insomniac, but at least I can lie still in bed. Good luck.
Dr B is Dr Buchfuhrer. He is in the US and a whole renowned expert on RLS as well as one of the authors of Mayo Clinic Updated Algorithm on RLS but responds to people's emails from the UK asking questions.
Mark J. Buchfuhrer, M.D. has an office in Downey, CA, and reports an over 90% success rate in treating RLS patients, often using low-dose opioid therapy in refractory cases. In the US, this often means employing methadone, but the UK has yet to overcome the stigma regarding methadone but does sometimes allow the use of buprenorphine with similar good results.
In my opinion, Drug War hysteria prevents more widespread employment of low-dose opioid therapy, which has a high success rate in allowing RLS sufferers to achieve normal sleep patterns.
Hi Guys, I have suffered for many years with rls and been down the Ropinerol route. Again my GP had no idea what to do .Went to a Neurologist and he suggested Ropinerol patch and Colasmapan. This kasted about a month before I felt to sick to carry on. I was vomiting and felt so bad. Another Doctor suggested Ropinerol and for a few years it was fine as the Doctor slowly increased the dose to 4mg per day.
Then came the Augmentation, I was in agony, sleepless nights pain in every part of my body. Then I found this site and thanks to everyone who has contributed I now RLS free.
I printed off the stories of suffering with RLS and gave them to my GP to have a read of.
To be honest he was sceptical at first and dismissed the information but I persevered and now he understands the severity of RMS symptoms.
It took me a year to come off the Ropinerol but now I take 1600mg of Gabapentin and a 15mg patch of Buprenaphine. This has worked wonders, I see my GP every 4 to 6 weeks and he checks how I feel and adjusts the dose accordingly. I have now settled at this dose and only have any RLS symptoms and the end of the 7 day patch. I tend to change on the 6th day and all is well.
I know this is long winded but I feel grateful now and just wanted to share my thoughts.
What dose of ropinirole were you on? A year seems a long time. I was on 2mg slow release but gradually increased to that over a time. More I took I seem to get worse. Been on ropinirole for about 4/5 years. Over a month of reducing Im on 0.75
Thank you for your time in replying. Its good to know there are people out there who undeerstand. Not sure if Gabapentin works alongside pregabalin as i take this for severe fibromalgia. Something perhpas i need to chat about to gp if they undeerstand. I tried the patches but came off as gave me severe irritation Got to 10mg patch and couldnt manage. Do you suffer with irritation over your body with the patches?
Hi Marmot, I was on 4mg of Ropinerol and gradually reduced by 0.25mg this quite a while but I suffered quite badly with the withdrawal symptoms. I'm now on 4x40mg of gabapentin
15mg patch of Buprophemine and I also take 4x60mg of Dulexatine which is an antidepressant but very good for nerve pain in smaller doses. Forgot to mention I have no irritation with the patches.
Duloxetine is an anti depressant. All anti depressants worsen RLS. The only safe options are trazodone and Bupropion.Many doctors prescribe anti depressants for nerve pain without realising they are triggers for RLS.
There are a few that can tolerate a low dose anti depressant, but RLS websites recommend they are best avoided.
Thanks for the info Jooolsg. I'm seeing my Doc this week and was going to ask him if I could come off the anti depressant as the side affects are ruining my sex life 🙃.Thanks again
Gabapentin (neurontin) is the same thing as pregabalin, just in a slightly different form and it has to be taken in 600 mg doses 2 hours apart. So no you can't taken them together.
I was on 1800 to 2100 mg of gabapentin while weaning from Neupro patch. I was also taking it for neuropathy. I ended up using some cannabis when I did reductions in the patch and when I finally stopped the Neupro. Just don’t rush the reduction schedule, take it slowly so you can tolerate the changes. Last September I got to consult with Dr. John Winkelman, a RLS expert. He put me on 2 200 mg of Pregabalin at 7:00 p.m. then 300 mg gabapentin at bedtime. I am happy to say I am not sleep deprived anymore. I might use cannabis when symptoms break through, but now I’m thinking my breakthrough symptoms might be from taking atorvastatin. But they’re really quite manageable. All the sleepless nights are a thing of the past, and will be for you before too long. I’m 78 and did it and proud of that. Keep at your goal!
I suffered with terrible augmentation on ropinirole. My doctor took me off. From what I've read if you have augmentation from a dopamine agonist then the last thing you should do is go on another dopamine agonist. We then tried the lyrica. It started to work but was too strong for me and made me feel loopy. Plus I've read alot online about lyrica causing teeth to rot and fall out. I'm now on neurontin 400mg once daily and it seems to be working. Its one of those things that you just have to gradually go up on the dose till it works. It also takes a couple of weeks to work. Maybe you can try neurontin. I also take a hot shower letting the water run on my legs for a while. That has really helped alot. I understand how you feel. I have severe rls and it will make you go crazy. People don't understand what its like. Try the neurontin....it may help you.
Yes Ill have a go with neurontin but not sure if it interferes with other meds Im on especially pregabalin which I take 400 g daily for severe fibromalgia. Guess this would be a gp visit.
Lyrica (pregabalin)does not cause teeth to rot and fall out. I think you are confusing it with buprenorphine where one does need to take steps to prevent damage to teeth.
Lots of good advice there. My twopennyworth is 1) you might have tried the "wrong" sort of magnesium, it should be mag bisglycinate, I take it every night 2 hours before bed, no stomach issues at all 2) I have found the Therapulse to be very helpful, not expensive, light and easy to use, a small but major investment for me.
Thankyou for your reply and time. Thought over the counter stuff wasnt a good idea but tbh not sure what magnesium I got. Threw it away as out of date. I did use magnesium cream but no effect.
magnesium glycinate or the type above are the ones to try. My personal preference is magnesium glycinate as my stomach is quite sensitive. I take 100mg during the day, the the same amount again at night approximately 2hrs before bed. You want to have a total intake of 300mg per day of magnesium, no more. So make sure that you're getting adequate sources in your diet, walnuts are a good source.
And, for a better bang for your overall health its good to pair it with vitamin D3 for bone & heart health. Some find D3 helps their RLS, I can't say its done much for me.
Listen to Sue’s advice nothing you try will work til you are off the Ropinerole. The withdrawals can be brutal but once off the Ropinerole you feel a lot better. As you can see the support and help here is brilliant.
Yes Sue's advice is briliant. Knowing there are people here to talk to helps tremendously. Just dont know yet which direction to take once off Ropinirole if any
I've not augmented on the same medication as you but I did on Tramadol which I'm sure is nowhere as bad as what you're going through therefore take what I say with a grain of salt and a dash of your millage may vary:
Taking a hot bath (40c), soaking for 15 - 20mins from shoulders down meant I went into deeper sleep, when I was able to sleep. If you need me to find the research about this, I'm happy to. But it works in a similar way to a sauna and promotes deep sleep. When I did this several days in a row, I began to notice a difference. My legs calmed down, weren't as bad. And my PLMD was more segmented/in blocks, rather than constant.
2grams of Glycine 2 x hours before bed. If you're taking magnesium glycinate, you can try taking less. I don't do this long-term, just short term when everything is quite bad.
Constant breathwork in bed. I use the physiological sigh method, be aware that you don't need to push or fully empty your lungs on the exhale. Just a gentle exhale, leaving some air in your lungs. I do this to calm myself down because I'm so wound up from my legs I want to tear my hair out! I just keep repeating it, over and over again. This helps when things are at their worst. It doesn't stop my legs, it just calms me down which in turn doesn't make me feel like I'm close to breaking.
Last note I only buy supplements that are third party tested. They're unregulated, we don't know what we're getting and in truth even I can't say if third party testing is legit. But I'll buy Thorne or Swanson over a generic at the chemists. And, I don't buy off Amazon or eBay because there are so many fakes out there. All that said, not everyone can afford expensive supplements and I'm not here trying to shame anyone! Use what you can, understand that there are risks but also understand that you need rest.
Wishing you nothing but the best getting through this!
Hi thanks . Its difficult to give opinion by reading but augnentation haunts all DA treatment in RLS with rates as high as 33-45% with PPX and Ropinirole and over 70% with Ldopa . The usual wisdom is to try low dose RTG (augmentation rates are < 20%) with a non DA drug such as tramadol or targinact (under supervision as these are opiates), gabapentin, pregabalin or in some cases carbamazepine and do a very slow reduction of the offending DA. Its diificult as there is often massive issues with sleep onset and maintenance insomnia and and one may need an additional sedative. We are now planning a nighttime infusion trial of apomorphine in RLS, apomorphine is remarkably effective but never been trialed. Inspoite of name, apomorphine is not an opiate and is a dopamine agonist effective by infusion and widely used in Parkinson's similar to PPX, Rop and RTG.
If we do get any funding we will reach out to RLS sufferers who may wish to take part . The trial will be at the Movement Disorders centre at Kings College Hospital and a new trial in RLS is long overdue . Mubasher Qamar from my team is coordinating ( if we are funded ) . "Mubasher Qamar"
And why would one want to take a DA like apomorphine by infusion? And like other DAs it can lead to gambling problems or other intense urges or behaviors that were compulsive or unusual for them, such as increased sexual urges or behaviors. medlineplus.gov/druginfo/me...
RTG=Rotigotine: (I know you know what rotigotine is: I've only come across the abbreviation occasionally e.g.) "Rotigotine (RTG) is a dopamine agonist that is used as mono and adjunct therapy to treat Parkinson’s disease"
But if it's a dopamine agonist, then augmentation will happen again quickly. Some may get a few years, but most will augment within months.How on earth will you stop augmentation if you're giving a DA intravenously? How will they reduce/get the drug out of their system?
This website follows the Mayo Clinic Algorithm and the views of Dr Buchfuhrer, Winkelman. Earley and Berkowski.
All of them have stated expressly that dopamine agonists will result in Augmentation for ALL. It's simply a matter of time.
Can you explain why infusion of dopamine agonist might be beneficial? It’s difficult to understand because of the four main treatments, iron, pregabalin/gabapentin , dopamine agonist, and opioids, dopamine agonists have the highest rate of side effects and complication as far as I’m aware with irreversible damage to dopamine receptors and hideous withdrawal symptoms . It’s therefore not clear to me why anyone would want to do any sort of trial, or what the possible benefit of DA infusions would be, vs. normal oral ingestion.
My hope is that you return to answer the questions that others have raised here, as they're not requesting medical advice but asking relevant questions and raising serious concerns about this trial that you're purposing. Listening to patients is important to you, I'm sure.
I agree with Joolsg - How on earth will you stop augmentation if you're giving a DA intravenously? How will they reduce/get the drug out of their system?
Don't try to recruit people on this site to take part in your trial of apomorphine!!! We follow the Mayo Clinic Updated Algorithm on RLS as Joolsg says, and we DON"T BELIEVE IN DOPAMINE AGONISTS TO TREAT RLS. We will fight you tooth and nails on this. Go elsewhere if you want to recruit the unaware.
Its nor intravenous , Subcutaneous . Its the mode of delivry that matters , Slow steady dopaminergic stimulation not pulsatile which you get with oral drugs ,
But, if a patient is augmenting on dopamine agonists, injecting another will just prolong their suffering. Why would you consider such a cruel trial? The D2 receptors are already over stimulated by Ropinirole. Dr Stefan Clements at East Carolina University is trialling Ecopipam, in an effort to down regulate the over excited dopamine receptors.
Apomorphine sounds like it will further upregulate receptors and prolong suffering.
Nearly ALL the top RLS experts in the USA have abandoned DAs completely. Dr Earley is clear that they ALL eventually cause augmentation.
Surely it's time to stop the suffering of patients and ban dopamine agonists?
Where can i find where Dr Early says all DA’s will eventually cause augmentation i am trying to convince someone on the RLS-UK fb page of that and told not to believe everything i read and the experts are wrong. 🤔
Sadly Elisse, you won't be able to convince her. In maybe 8 years, she will notice her RLS becoming more severe etc. It creeps up so slowly and insidiously.Deep down, I knew it was happening 4 years before I sought help. But I was in denial and couldn't face the thought it was happening to me.
We see it on here so often. People come on, mention their RLS is playing up, we say it's augmentation, they disappear for 5 years, and only when they come back do they start to listen.
We're up against top neurologists who insist there's no problem. They consult the BNF and it doesn't mention ICD or augmentation.
So right she is not the only one who think they wont augment because the have been on it for years but i have to let her know she is wrong it’s what i need and should do, after that she will find out herself for not believing a expert, yes it is sad when someone doesn’t have to suffer from augment and the withdrawals 🙁
Couldn't have written it better myself. This trial is using Apomorphine. Apomorphine is a Dopamine Agonist. And, 'augnentation haunts all DA treatment in RLS'. - Hidden
If this trial goes ahead, ALL patients on the trial have the risk of augmentation. No trial follows patients for longer than a few months, if the augmentation hits them in 3 months or 3 years, it's coming. And, they'll be left go through hell doing it.
If the augmentation doesn't harm them the risk for gambling, compulsion disorders, addiction surely could. Worst case is the patient has both augmentation and other complications that are common with DA.
We should be treating patients based off the current research, no trying to get more published work on medication that has been repeatedly shown to cause harm.
I find it very presumptuous to propose a trial with yet another DA to people whom almost all have suffered (suffered!) through augmentation followed by getting off the DA. I am tempted to report this post to the moderater. But I won’t. I hope you get - and READ!- all the replies to your contribution to this post. Maybe you’ll learn. You meed to, as we all know you are a specialist medical doctor (neurologist) supposedly specialising in RLS. It would help if you learn to listen to each individual patient. Here on this forum we have a saying; we are all different. This means that averages based on small short-term trials DO NOT work for many of us, people with RLS.
If you are still reading this thread even though you have decided to leave as your username is now Hidden, it is against the forum rules to recruit for drug trials without permission from RLS-UK . In this instance, the replies to you will be left up so others can see what has happened.
Do NOT be tempted to use the patch or Ropinirole.Sadly UK doctors and neurologists are a decade behind. They still cannot accept that ALL dopamine agonists WILL cause drug-induced worsening. There are only a few who are up to date with the latest research.
All dopamine agonists over excite the D2 dopamine receptors and once that has happened, you have to stop taking them. They increase the severity of RLS and your RLS will never settle until you're completely off them.
Follow SueJohnson advice.
Most of us have been in your situation and followed the advice on here to slowly reduce dopamine agonists.
It's difficult to accept that the neurologists we are supposed to trust do not understand how to treat this disease. Even the 'so called' top RLS clinic in the UK is still pushing the Rotigitone patch when patients have suffered augmentation on Ropinirole or Pramipexole.
RLS UK is trying to get these drugs demoted to last place in treatment, after ALL other medications/iron infusions have failed.
So, slowly reduce by 0.25mg every 2 weeks. You are already on pregabalin, which may help once you're through withdrawal from Ropinirole.
To settle the increased RLS at each dose reduction, a low dose opioid can help. Also, having serum ferritin above 100, preferably 200.
Good luck. Stay strong and you will get through the withdrawal and your RLS will be so much better.
I am now completely RLS free on 0.4mg Buprenorphine. I had to jump through several hoops to get it, but it has been life saving.
I think others are better equipped and experienced than I am to answer this but in case this gets missed my understanding is that as long as you take care of your teeth, you'll be fine. This includes but isn't limited to rinsing your mouth out after consuming the medication. Making sure you keep hydrated. Brushing and flossing your teeth, brushing your tongue. And, of course seeing your Dentist and Hygienist as you should (regularly).
There's some products that you can use to help build enamel back up. But they're not great as in they're not good enough to combat serious enamel loss so it's better to stay on top of your oral hygiene and get checked out if you think you might be having issues.
What I would also add is poor sleep significantly raises our risk of all cause mortality. It's bad for our brains, heart, bodies and teeth! I would rather keep on top of taking care of my teeth while on buprenorphine than not sleep. The risks of not sleeping out weigh the risks of tooth enamel loss - in my opinion.
There has been an FDA report saying they believe 'acid' in Buprenorphine causes tooth decay. I don't believe it's acid at all. It takes about 2 minutes for the pill to dissolve and that's not enough to cause enamel erosion. Sipping a glass of orange juice doesn't cause such erosion, so why should Buprenorphine.?
There are people using the Buprenorphine skin patch who also report tooth damage/loss.
Buprenorphine, like most opioids, does cause extremely dry mouth for many people. It does for me. I think the dry mouth causes gum and tooth damage, which is why those using the patch report teeth problems.
I use products for dry mouth that do help. Sprays, toothpaste, mouthwash and lozenges.
I personally haven't had any teeth problems and I've been using Buprenorphine for 3 years.
I suspect there is a small percentage that experience the very dry mouth and they will need to monitor closely.
As with all RLS drugs, side effects are different for all of us.
I've been on Temgesic for quite a while now and it causes two things:
1. Dry mouth, for which I've found Boots Dry Mouth Spray to be a cheap, effective solution. I keep it by my bed and will use it a few times during the night. It really helps.
2. Itching, for which I have not found a solution and which keeps me awake ☹️
I'm on pills. The patch is more suitable for constant pain. But RLS affects most of us mainly in the late evening and during the night. The pills produce most of their effects for the 8 hours after taking them, which is ideal for RLS. Then they continue to work and have a 24 hour half life. So we don't get mini opioid withdrawals the next day.Some find the patch works well, especially if they have daytime RLS or if they suffer fatigue/drowsiness.
15mcg patch releases 15mcg each hour evenly. That is equivalent to 0.36mg of Buprenorphine in pill form.
please DO NOT be tempted to take another dopamine agonist (DA).
Apomorphine was the 1st DA and was launched in 1970. Even if trials have not been done, I would avoid it like the plague that augmentation is.
I would be much more keen to have first been advised to sort out your iron status. Please would you tell us your ferritin and Transferrin Saturation percentage?
I also wish it was possible to get controlled access to methadone , low dose and strictly prescribed. Almost impossible with today’s opioid bias and epidemic .
Is the ropinirole you are on now slow release. If so you can't cut it like I suggested. In that case if you want to use a jewelry scale and cut it, you would need to switch over to regular ropinirole.
400 mg. pregabalin is not the max dose. 600 mg is.
Since you are already on pregabalin which is the first line treatment for RLS now, you may find once you are off ropinirole and your withdrawal symptoms have settled which will take a few weeks or longer that the pregabalin may control your RLS, and if not, you can try increasing it by 25 mg every couple of days.
Oxycodone lasts 4 to 6 hours so most people have to take it that often or they will have mini withdrawals. You say you are taking 1 at night but don't give the size, The usual effective dose is 10 to 30 mg at least if you were using it to control your RLS.
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...
I’ve just checked oxycodone and it’s 5mg 1 at night. Was very concerned about giving it to me but told her I needed some sleep. For the first month it helped tremendously with pain and still does to some extent but another gp told me I was on too much pain meds and really concerned about me increasing to 400 mg of pregabalin from 200. Being in a practice different gp’s give different advice. Leaves me in gaga land
5 mg oxycodone is a low dose. You may need to increase it. As I mentioned above 10 to 30 mg is the usual effective dose. Print out the section on the Mayo Clinic Algorithm that says this to show to whichever doctor you need to . For the pregabalin for fibromyalgia you can print out the info at aafp.org/pubs/afp/issues/20... What country do you live in?
It's not addictive in the amounts prescribed for RLS.
See the pinned post on the right side of this page "Opioids For RLS - Some useful information."
And many UK GP's will, as evidenced by the number of people from the UK on this forum who have been prescribed them in higher doses than 5 mg. You might have to go private if you can afford it. If so create a post and mention specifically where you live in the UK and others will give you recommendations.
But again this is premature. You may not need any more after off ropinirole and your withdrawal symptoms settle.
There is light at the end of the tunnel. Like you, I was extremely down while going through withdrawal. Renember these drugs increase dopamine in your brain and as you reduce, you take away dopamine which is the 'pleasure' hormone.Once completely off dopamine agonists fot around 3 to 4 months, things do settle.
Your RLS is probably linked to your back problems and arthritis so iron infusion may not help, but is still worth a try.
Methadone and Buprenorphine are the most common treatments in the USA for refractory RLS. If increasing pregabalin and/or adding a low dose opioid like Oxycontin doesn't help, you can ask for a referral to a Sleep Clinic or a neurologist who is aware of the benefit of Buprenorphine or methadone.
I know that the MS team at Bart's Hospital in London will prescribe either methadone or Buprenorphine for RLS. They no longer prescribe dopamine agonists because they are aware of the very high rates of Augmentation and Impulse Control Disorder ( Gambling, over spending, over eating, hypersexuality).
Is Sevodyne Buprenorphine patch better than the pills? Haven’t heard of the pills here in UK. But then haven’t gone down that road with gp. Got appt now for 17/1 so asking for blood tests for ferritin & B12 lack of. And other questions not that I expect any answers. Are there question you think I should ask her with regards onward journey after Ropinirole has stopped. ?
Buprenorphine is available in the UK as pills or skin patch. For RLS, pills are probably better because they deliver most of the dose over the first 6 to 8 hours. So taking pills in the evening provides best cover for when RLS is at its worst. The pills continue to release the dose over 24/25 hours, so covers you during the day as well.Your GP should do full panel, morning, fasting blood tests and then raise your serum ferritin above 200 via pills taken once every other day in the evening, or via an iron infusion. Your GP can refer you to local haematology dept for an iron infusion, or you can pay privately. The Iron Clinic in Harley Street will do infusion for around £800 -you send your blood results to them first.
Ask your GP to monitor your withdrawal and whether he/she can prescribe Buprenorphine without referring you to a neurologist. In some areas, it's red listed, so can ONLY be prescribed by a neurologist.
Print off the Mayo Clinic Algorithm and ask your GP to read it.
In your case, I suspect Buprenorphine would work well for RLS and your back issues.
Many doctors in the US prescribe Buprenorphine while patients are reducing Ropinirole. It stops the hellish withdrawal symptoms. So do ask.
Are the Buprenorphine pills different to the Sevodyne transdermal patch Buprenorphine? I was given these for pain 5 or 10 mcg/h. Am I misunderstanding the 2?
They are the same medication. But delivered differently. You are on skun patches, which deliver a steady supply of 10mcg an hour, which is equivalent to 0.24mg of Buprenorphine pills.For pain, the skin patch is better as you need constant pain relief.
When you come off Ropinirole, your RLS will increase severely, that's expected with withdrawal.
You can ask the GP to consider a short term increase in the patch to 15 mcg or 20mcg while withdrawing. You could then slowly taper down if necessary, once completely off Ropinirole.
However, most people do need to stay on meds for life if they have severe RLS.
I have a supply of 10mg of Buprenorphine and started today. So will this help me? Was on this b4 but itching too over and couldn’t manage it but I have citrizine so shall I take a tablet pm to stop this? Will the patches stop rls once I’m off Ropinirole?
I presume you mean 10mcg patches? I thought you were already taking Buprenorphine patches for your back?If you stopped taking the patches because of itching, you will have experienced opioid withdrawals, and RLS is a symptom of opioid withdrawals.
So don't stop opioids suddenly. It worsens RLS.
If you go back on the patch, it should help settle the Ropinirole withdrawals.
And yes, you can take cetirizine for opioid itching. Was the itching only at the application site or general opioid itching?
general itching all over. Drove me crazy at night. I stopped patches some time ago but used a 5 today so hope withdrawals maybe less ferocious. Gp didn’t tell me that when I stop patches withdrawals could occur. So whenever in the future I stop patches, will I be going thru all this messy business again?
If the general itching caused by Buprenorphine was unbearable, it may not be suitable for you. Suddenly stopping any opioid can cause opioid withdrawals. The main symptom is increased RLS.
However, you are suffering augmentation as well.
So keep reducing slowly.
First line treatment for RLS remains iron therapy. Get the full panel morning, fasting blood tests and raise serum ferritin above 200. It may well help with your fibromyalgia and arthritis. Iron infusions are the fastest way to achieve this and if you live near St George's or The Royal Cornwall in Truro, you might get one on the NHS. Otherwise, the Iron Clinic in Harley Street will arrange for around £800 if you send blood test results.
Usually, opioids are used to settle the severe RLS caused by withdrawals from Ropinirole. As you have oxycodone, ask your GP for a prescription to help.
10mg at night during the worst withdrawals at each dose reduction of Ropinirole.
If the itching was tolerable on Buprenorphine , you could ask for it again. Some members say it helped stop the worst of the Ropinirole withdrawal.
Have you applied for medical cannabis for your fibromyalgia? It's legal now in the UK, but expensive. It can help with sleep during Ropinirole withdrawal.
Thank you for your time. I’ve written all questions on my needs down ready to see gp tomorrow. Not expecting anything much tbh. They don’t have time. I’m not taking cocodamol with patches but paracetamol. Hope that works as I’m in a chronic situation now with rls.
I seem to have hit a blip.. Fri and Sat nights were pretty perfect but last 2 nights have been crazy with restless legs . Took an extra Gapa and Targinact and got a few hours , now woken at 4.30 am with crazy legs . It just seems never ending at times .So disheartened .
Sue , im Angelas husband . I know that you have literally got her through the last few months . She is still on the same drugs Gabapentin in evening , 1 oxycodone before bed and 2 targinact at night . Her sleep has improved so much because her legs have calmed right down which is great but today and for no reason she is terribly depressed and thats not her at all . She has sobbed nearly all day , wont eat anything and put herself to bed at 7 without her phone . Im so worried , I dont know what to do .She says she isnt suicidal but feels dead and has no feelings for anything or anybody .What can i do ?Im so sorry to bother you , you are so busy Regards D
That's terrible. I have no idea what is going on or why she is feeling this way. I hope she took her medicine before she went to bed. If not, I would wake her up to do so. Unfortunately the only advice I have is to see if she improves tomorrow and if not perhaps take her to the emergency room. I'm at a loss.
Thank you for your quick response , yes she has taken them aĺl.Could any of the meds be making her feel this way ? Is it possible her brain is missing the ropinirole ? She sleeps a lot in the evenings on and off and sometimes sleeps til 10am but she is rarely asleep until1am ish as reading or listening to music. Heres to a brighterday tomorrow ! Thank you .
I thought i was kind of fixed . I def need 1800mgs Gab starting at 16.30 , 18.30 and 20.30 thats when i take 2mgs clonazepam .At bedtime 22/23 hrs i take 10 mgs of Targinact. The problem i have is staying awake during the evening . Going to cinema is a nightmare . Driving isnt safe .Any amazing suggestions ? Ps thanks for chatting to hubby ! I almost wonder if we get ptsd after going through months of withdrawal hell .I have never felt so depressed in all my life ,not suicidal but just totally emotionless and needed to be alone .Thanks you are awesome.Ps my nhs appt with neurologist has been moved !!!
It might be the clonazepam since it has a 40 hour half life. You might want to try zopiclone instead. It takes 1 hour to work. I'm glad you are feeling better. You had me and your husband worried.
You might also move your gabapentin doses 1 hour later.
Hi sue , im absolutely gutted as although nothings changed ,my legs are now kicking off every night after couple of hrs sleep. Next appt for pharmacist and neurologist is March . Only good thing is evenings are still good . Just feel so sad and helpless as thought I was sorted j
Hi Sue , things seem to be getting worse and its so upsetting. If I take 600 of Gaba at 16.30 18.30 and 20.30 plus 2mgs Clonazepam at 20.30 then 10mgs Targinact at bedtime 22 -23hrs legs are pretty good but Im then often awake til 3am ish and then could sleep all day which I cant . If i sit down afternoon or evening Im out cold . Cant speak or see anyone til March . Any magic solutions ? Im guessing not ! Angela
I thought gabapentin made you sleepy? Only thought I have is you might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. You can switch directly and the equivalent amount is 300 mg,
Gaba does make me sleepy in the evenings and mornings just not at bedtime. Have tried Pregabalin but it made me feel very low . Just a constant juggle with drugs . Not sure Targinact does much or Clonazepam .Roll on neurologist although seems a bit clueless on rls !
Out of the drugs im taking , which is the most likely to be making me feel so low and depressed ? I have never had this in all my life and its no fun .
As well as checking and treating for any low vit D, you could try vit C and E if not already tried, and with a thyroid issue you will almost certainly be low in vit B12, so should get that properly tested (serum B12 alone is not sufficient to rule out a deficiency although may rule one in). Best wishes
I understand what you are going through it’s so painful and frustrating uncomfortable having that creepy crawly feelings in your skin it’s so unpleasant
What do you mean by augmentation
My consultant has mentioned augmentation I’m waiting for consultant to call me because consultant did mention iron infusion
I’m on dose of Ropinirole I take 0.5mg four at night time they are ok, when I take medication it knocks me out
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