Ropinirole Cold Turkey

Just thought i'd ask if anyone else out there has come off there DA's (Dopamine Agonists) cold turkey and what symptoms you had and for how long?

Reason for this is, I've been diagnosed with RLS and a REM sleep disorder (unable to get into repair sleep) , but to be quite honest I've always been under the impression I don't have RLS, I think most of the RLS symptoms are coming from a lack of quality of sleep i'm not getting? As when i do have a quality sleep (which doesn't happen a lot) my RLS symptoms disappear, so last Sunday 6 days ago after being on Ropinirole for 6 months I decided to stop my daily dose of 1mg as a test for this and just keep taking the sleeping tablets im prescribed (Zopiclone 7mg, 1 at night)

Obviously for the first few days I felt okay with no pain at all and slept okayish , but over the last few days I've had constant burning knee and leg pain, to combat this and also as a test I went Holland & Barrett and brought some Gentle Iron (Bisglycinate) , Calcium Citrate and Magnesium Chelated to see if these could relieve some of my pain, to which after taking the Gentle Iron low and behold my pain stops after about half an hour I feel the pain just being flushed away.

Any thoughts on this and your own situation are welcome, But please state your doses and how long you have been on them for.

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  • Hello there,

    I have been using paramipexole since last August. I have started with0.25mg and decrease to 0.125 and now for the last 5 days I have gone cold turkey! No medicine at all! I can tell you that I have gone through hell first 3 days! No sleep first 2 nights. 4th night I had 10 hours sleep! Last night I had a bit of rls but took my iron bisglycinate before bedtime and slept well. It took me a while to settle down but it did good. I had a lot headache though last 4 days! But this morning I woke as a different person completely! I can't believe it myself but I feel so good for the first time in a long time! I have a leg pain feeling cold and numb and a little pain from my hip but apart from that I FEEL SO GOOD! :)

    I am taking 300mg magnesium around dinner time and iron bisglycinate before bedtime. I am also following lowmap diet which I find it hard but I can put up with not eating my favourite food if it carries on Making me feel good and back to feeling human again!

    Also I must add that I couldn't do without these lovely people support!

    Good luck...

    Keep in touch.

    B.

  • Bkc - Fantastic news - long may it continue.

    Mark- I came off Prami slowly without too much bother.

    What you are experiencing would be normal - and a huge bonus with the iron reaction (@tredlight will be doing somersaults of delight)

    Just keep going- take it very easy and take multivitamins and vit c. And hydrate loads- flushing away all rhe toxins.

    Well done for getting this far.

  • Thank you madlegs. :) this couldn't happen without your help so thank you ! X

  • Thats good news glad you didn't get much pain, I told my neurologist of my plan and he welcomed the trial and error approach but did tell me to come off the DA slowly but like most people I thought best :) but now im in this far without them i'll just ride it out....

    Yeah tredlight did comment a good few times on my other post about using Iron lol

    Thanks for the support

  • Thanks Madlegs, you are the best! No somersaults. 2 out of 3 isn't good enough. The goal is "global elimination." You going cycling today?

  • Cheers for the info Bk , I wasn't to sure of the withdrawals but thought as much, got an app with my Dr next week so i'm just going to keep going as I am for now and tell him of my finding and see what he has to say about this and how the iron affects me and why, also he should of had my more intensive iron blood tests back by then and have a bit more insight as to whats going on and if there's something that's been over looked?

    Thats another thing ive been doing for the last 3 months , my diet I've changed completely to include lots of leafy greens, veg and slow release carbs and protein and feel its helped a lot!

    You say you take Magnesium on its own? I read that you should always take Calcium with it on a 1 to 1 basis as the two go hand in hand?

    Also thanks for your input, peoples own personal views and management go a long way in helping others find their way through all this , like i have by finding this site and just reading then cross referencing certain points i think will be valid to my situation!

    All the best mate.

  • Hi Mark,

    I take 300mg magnesium only not with calcium. I do take b12 and folic acid too.. I will have to look into magnesium and calcium thing. At the moment I am doing great without it. :))

    You have been having DA 6 months so you will clear it out from your system as quickly as I did.

  • This is the video i watched abt Magnesium & Calcium hand in hand getting the right balance, after watching that you get more understanding of how they both work on a cellular level. and then I read lots going from link to link.

  • Also look at this:

  • Thanks Mark, beter visit Holland and Barrett again :)

  • Funny how the iron works for some and not others.... it did nothing for me.

  • I think the thing is RLS symptoms are very similar to many other symptoms from a lot of different disorders! The way I look at it is to try and narrow down the root cause of your own symptoms looking at the bigger picture and triggers though trial and error and researching intensively!

  • I have a fair good knowledge of RLS. I have Primary RLS, the genetic type, inherited from my father, also have a brother who has RLS too. As we always say in RLS land, what works for one will not help some one else. :)

  • Keep strong El

  • Hi I tried coming of my medication 7 years ago it was torture but I was wanting to start a family so I was giving it a try with no meds. I never slept for 3 nights then the 4 th night I slept in a bath of very hot water but only for about 3 hours and even then my legs were slightly twitching the next two nights and days I never slept I was crying and aching so I went back on the medication ! I just couldn't do it! My legs never stop I have Rls 24/7 with out my medication I think I would have been a gonner if you know what I mean 😞

  • I can really empathize! I have been taking ropinerol, then cinamet and for at least 10 years Pramipexol.The prampexole has een great ntll the last year when agmentaton Why s the we ste dong ths? t s not enerng what type. Please assst. Sorry Rsh

  • Hi Mark370,

    So great to read your post !!! I too have been testing and pushing my boundaries.

    I've definitely found keeping off the sugar, cow dairy and wheat has helped combined with Magnesium with B12 125mg one am and two pm, Liquid Iron one teaspoon twice a day and Turmeric once a day.

    I hate to say it but I was definitely augmenting with 2.5mg Repinerole which I know is too high and trying to go over to Gabapentin and it was causing a lot of trouble sleepwise. I was even doing night time walks to control the rls.

    I have to admit it's all really helped as I now get a good six or seven hours sleep but It's taken just over two months to get me to where I am now. I know I'll have to come off the Repinerole eventually but I've been advised by the Kinesiologist to not attempt it yet as the system is still rebooting itself.

    Good luck with your rls too. I've found this site has helped me so much.

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