Hello fellow sufferers where ever you are in the world. I have been reducing my Ropinirole dosage by 0.25mg every 2 to 3 weeks depending how it’s going and am now taking 4.75 mg / day a reduction of 1.25 mg / day from 24 October 2022 and am in for the long haul. I used to spread my dose out during the day as RLS could kick in at any time but found that the reduced dosage before bed was causing issues so started to take a teaspoon of Red Vein as a mug of tea 40 minutes before bed and it did help me sleep but left me feeling less than alert in the morning. I’m retired so not an issue as don’t have to drive but I live an active life and Kratom was affecting it so have since stopped taking it. What I have found but not sure if it’s universally available is Solpadeine Plus’s a soluble tablet made up of Paracetamol 500mg. Codeine Phosphate Hemihydrate 8mg and Caffeine 30mg. I know Codeine was banned in Holland many years ago but I find it helps during the day.
My routine is Generally take 2 Solpadeine anytime between 3 and 5pm and that usually calms things down until I take my full reduced dose of Ropinirole an hour before bed, but sometimes have to take earlier and watch TV or sometimes eat dinner standing up as RLS can start anytime and impossible to judge when. Usually bed at 11pm but RLS wakes me any time between 3am and 4.30am so get up go down stairs make a hot decaffeinated drink sometimes have breakfast, scrambled eggs on toast 🤣well it does save time later, absolutely no more Solpadeine owing to the level of Caffeine. Go back to bed after 1 to 2 hours and sleep until the devil gets me again around 7.30 then get up and start the routine all over. RLS is generally at its worst for a few days after each reduction. I’m not currently taking any other RLS medication other than Ropinirole and the Solpadeine. One other thing that screws up my routine is if we go out for a meal and I eat later than I usually do and sorry to say eat more and that combination has me dancing around sad but I should have learned by now. May I take this opportunity to wish you all whatever your faith, or no faith and wherever you live in this troubled world Blessings for an easing of your troubles and improvement of your RLS
HipHop1972 (Pete) 🤗
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Hi you will most likely find over the counter Cocodamol to be cheaper than Solpadeine ,it also is 500 Paracetamol and 8mg Codeine but don't think it contains Caffeine
Hi Pete, thanks for your account. I think you are doing quite well. Keep it up!
Incidentally, the codeine was not banned in Holland (I am from The Netherlands) but you do need a prescription.
Also, I have some experience with kratom and I use it as an additional go-to when my standard treatment is insufficient for some reason. Too bad about the effect of feeling less alert in the morning. Did you also try half a teaspoon? Sometimes lower doses work as well and with fewer side effect.
Please be also warned about the effects of longer term daily use of paracetamol. I can't remember the negative effect, but I do remember that it is not without its risk when used daily for a prolonged time. Worth looking into?!
I hope your RLS will improve eventually with the reduction /cessation of the ropinirole.
Hi LotteM, Thank you for your reply. Ah I see I couldn’t buy codeine as I didn’t have a prescription when I was in Holland. It was rather a long time ago and we stayed with my Wife’s pen friend she’s had for55 years.
Thanks for the warning about paracetamol I only ever take 2 in a day and it kept me RLS free today from 2 pm until now 11.20pm and now taking my Ropinirole. I do still have some Kratom left which I bought on line from Holland and will use again later when things get worse as i reduce Ropinirole further.
I don't take medication for my RLS so can't offer any advice on your approach (though it does seem that you have good control over your symptoms). I just wanted to thank you for your good wishes to us all and to wish you well in return. Your mention of standing up to eat dinner struck a chord with me, as I am often standing up to watch TV, read the newspaper, work online, etc. We struggle on! Very best wishes to you in this bleak midwinter.
RLS has such devastating effects on peoples quality of life. While reducing my pramipexole and on to gabepentin I have had such severe symptoms with RLS at all times of the day with no consistency! My evenings are usually painful or sleeping if I have to take my meds too early because of symptoms, I often spend 1/2 the night and the other half in bed, wake up wide awake for 2 or 3 hours , wake up with pain and buzzing legs. It is great if I can have a "normal" several hours of life before it starts all over again. I don't think many people understand the effects of this mess! Usually when I am active or busy like many others things are ok but then the minute I get to sit down BAM! My life is unpredictable and it is wearing on me physically and mentally! Ugh
Hello Aujamw. I know exactly what you mean and I know what you’re going through as I was suffering like that some time ago. It’s a dreadful dreadful affliction that ruins lives.
I wish you well and that you will find some well needed help
hi hip hop,’ this doesn’t exactly fit with your post but others might find it helpful? I was on here a few weeks ago discussing the devastating effect that an increased dose of Venlafaxine (prescribed to help with RLS) and Sue J was helpful as ever, so I was about to see my GP and request the Mayo Clinic recommendation- stop Ropinirole and start the new combination meds (haven’t got the names to hand).
Last week (Monday) I emailed in my repeat request (1x 2mg tds), went to get them on Thursday, none, not just there but any of the chemists chain. Okay, I thought I have a few left and they’ll be in tomorrow-Ropinirole helps , but only a bit.
Friday- still none and my lovely young lady at the chemist even rang other well known chains - none. This is southern England!!! I have used codeine/paracetamol and a supply of diazepam i “acquired “. Minimal effect- but the withdrawal of going straight to zero on top of the RLS returning and out of control (I’m in the top level) I cannot describe. Off to see if any has arrived in an hours time- if it hasn’t I will now beg for an appointment or a script of anything to take a bit of this away.
My message- always reduce Ropinirole (or any drug slowly) and don’t be stupid like me and think I can be without this for a few days- just don’t!!! Alex
Hi Alex, that must be upsetting to run out pf ropinirole. Have you considered discussing with your gp or through your pharmacy to replace it temporarily by another dopamine agonist (pramipexole). Be warned that pramipexole is far stronger, so you'll have to ask your pharmacist about an equivalent dose in terms of strength.
My understanding from a post a few days ago is there is a big shortage of pramipexole. If there is now also a shortage of ropinirole, that is really bad.
just a thought. When you go out for a meal do you have wine with it? I find more than one small glass of wine makes my RLS much worse when I get to bed.
Hi HipHop1972,thankyou for your kind wishes,I wish you all the very best,I think we all seem to deal with this awful syndrome in our own way.my family can't believe it when I tell them that I can't even use the toilet without moving around, I'm taking Pregablin at present and still weaning off Pramipexole. If I go for a meal late in the day I'm sure to have a restless time,it happens all the time but I still go for a meal🤔
Good for you Whymelord, it’s difficult I know but we have to have a bit of fun and eating out is such a joy, even if it’s a Gasto Pub. As I’m a member of RLS-UK I carry a very useful Medical Alert Card explaining my RLS (Willis-Ekbom Disease) requesting that where possible the card bearer be given enough room to stand or move to help alleviate their symptoms.
Hi,HipHop1972,I didn't realise there was such a card but it's sounds a really good thing to have.I was discussing RLS with my niece who is a nurse for a number of years,she said that ,generally the Syndrome is not really taken seriously as a condition at least the hospital and the health clinics where she has worked.That is my experience also when talking about it to my gp,so it's seems to be left to sufferers to help themselves.
Good morning Whymelord. Your Neice is quite right although RLS affects a vast number of people to varying degrees it’s not truly recognised or understood by the medical profession, therefore treating RLS is a gamble trying to find a practitioner who is willing to listen and do a bit of research.
I too have had success reducing ropinerole by taking CBD at night. Generally I only take 0.5mg of ropinerole early evening now. The leg pain has reduced so I no longer take codeine/paracetamol. I'm convinced the ropinerole was causing the horrendous pain keeping me awake at night. Good luck!
Hi, thanks for your post. May I ask you why you are reducing ropinirole? Was it strictly augmentation or were side effects involved. I ask because I am reducing now also, but from 4 mg at night. I am doing it again due to side effects. I am also at 3.25. I take 900 mg gabapentin, 300 at lunch and 600 at night when I take my ropinirole. Also use medical marijuana all day and that helps alot. Did or do you hear voices screaming at you? Especially around fans, machines or oscillating motors?
Hello discgolfrules. I was originally taking 6mg per day and was augmenting and During the Zoom AGM of RLS-UK it was suggested by the chairman who happens to be a Doctor that I should reduce the dosage and Sue who advised how to go about it. On the side effects no, I don’t hear voices but sometimes feel as if someone has just walked past, emotions can be a bit up and down and can sometimes do things out of character. I think you say that you’re taking several medications while reducing Ropinirole and also Kratom throughout the day so could that be contributing to the voices you hear. Anyway I wish you well and hope you find a way through all the side effects and something that works fully on your RLS. Reading your post makes me feel very fortunate that at the moment I can reduce Ropinirole without anything more than CoCodamol.
thank you for sharing your experience. Just to put it our their for medical info. I talked to my neurologist and looked it up my self and also experimented myself. The medical marijuana does not have any reactions with ropinirole or gabapentin. Gabapentin has a moderate reaction with ropinirole, drowsiness I have did not use medical marijuana for months and still experienced auditory hallucinations. It does help with the nausea from the medication and it helps reduce the severity of my RLS and dystonia symptoms. I have to say that after about 3 weeks of being on the gabapentin. I have been able to sleep for about 5 hours every night, even when reducing only the first night I had issues but still got 2 hours sleep. That is really good for me as far as sleep. So I have to say adding the gabapentin to the ropinirole has helped me step down safely so far. Wish you the best on what your trying to do and thank you again.
Thanks for clarifying how you have gone about your medication. This is what’s so great about this forum, we sympathise with, support, advise and share research.
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