11 days off mirapexin.

[jippyleg]

I am now on day 11 of complete withdrawal from mirapexin and all meds as I want to try and go back to managing them without these heavy drugs having been on them for nearly 3 years - augmentation and rebound is well set in.

I am by no means back to normal - I spent between 12 and 4 with a severe jerking left leg and was up and about doing all the usual restless leg past times .....stretching, baths, cycling, massaging etc. However it is getting easier. Slept for 2 hours before midnight and from 4 til 7 this am. Last week I was lucky if I got 2 hours.

I have spent hours sobbing in the night and it has not been at all easy but I just wanted to encourage anyone else out there as things have turned a corner and I feel as if I am going to be able to finish this off

My GP has also been supportive and signed me off work until Christmas so that I can rest and sleep as I need to.

[Hidden]

Well done you.!! I know how hard it is the get of the dopamine meds. sleep goes completely out the window for days, or even weeks.

[Rish]

Well done

[jippyleg]

Thank you for your good wishes - they actually mean a lot. As I know you know how difficult it is. x

[Halli]

Please keep us updated on your progress. I would love to try getting off the meds at some stage but can't afford to take time off work at the moment. Am really interested in how you get on long term. good luck

[jippyleg in reply to Halli]

Will do - day 13 and things are much much easier than last week. I'll let you know how long it takes. Dr B - rlshelp.org. said it would probably take me 2 weeks to 2 months. Hope you get the opportunity as some stage.

[roseyapple]

Good for you but can I ask what do you intend to do to control the RLS because I have gone cold turkey many times with different medications because of the horrendous side effects but always have to go on to something else because I can't live without something.

[jippyleg in reply to roseyapple]

Hi,

That's amazing that you have gone cold turkey many times. The thought of doing it again for me is unthinkable. Well done.

My plan is to not go back on meds as up until 3 years ago I never knew they existed. I have had it since I was a child and somehow got through. However I don't think I was as vigilant about no caffeine, alcohol, etc as I am now. I totally understand your experience of feeling that you can't do without. However I know that I also don't want to be dependent on these drugs as I don't really think they are the answer for me either.

A short answer to your question is probably lifestyle, food, exercise, massage - as natural and holistic as is possible. I don't expect it to be perfect but I feel happier and more in control of my own body.

[roseyapple in reply to jippyleg]

Well the best of luck jippyleg I hope it works for you I know that it wouldn't for me, I've had mine for about 46 years and call it my curse I also went years without any meds because no-one knew what I was talking about, things are not perfect now but so much better than it used to be the thought of going back to that sends shivers down my spine.

[Hidden]

I dropped my pills into the dirty dishwater. I suffered 2 nights off the pills

It was miserable. Emotionally after two nights of no sleep, I was sobbing,

couldn't function at all. I sat in a ball crying until the refilled pills were back

into my system. They are failing me quite a bit though lately. I can't quit them

but they are not doing enough. I take 3 -5 X.88. To get through a movie

or a longer car ride, I have to take 2 -an hour before I do those things.

I'm in discussion right now about a next step for me. My Vicodin prescription

may not get filled again by my doctor. He told me that I should take them

only when I reach the point of not being able to function at my appointment

just an hour ago. He believes that I built up a tolerance to my current dose.

[Sheelaghj]

I really admire you! I am on day 6 of trying to come off Mirapexin. I have got down to one tablet 0.088 mg a day, and so far it has been horrific. I don't know how I'm going to get down to zero Meds. I asked the GP for help and he gave me clonazepam to take at night but if anything, it made it worse!! I am truly at the end of my tether😢

[Pippins2 in reply to Sheelaghj]

I would not attempt to drop dose any further without a proper back up med eg Tramadol x

[involuntarydancer]

Congratulations, jippylegs. When I came off mirapexin I felt so much better (though it did take a while) and in ways I didn't anticipate. I had been on it for about 10 years and hadn't appreciated just how much of a struggle life was on mirapexin. I was tired and 'muggy' all the time. It did strange things to my appetite (weight has fallen off me since I stopped). I had an internet shopping compulsion which stopped as soon as the drug left my system. I hope you experience similar benefits.

I admire your determination to stay off the drugs. You could also consider some of the recommendations for dietary changes which you will find on here - many swear by fodmap diet and also avoiding salicylic acid food.

I have a Relaxis pad (very expensive unfortunately) which is another non-drug treatment.

Finally, you could consider getting your hands on some Kratom for those occasions when the legs are unbearable. Unfortunately it is illegal in UK and Ireland but with some determination it can be ordered from Holland and is a great fall back option if you are going down the non-pharmaceutical route.

Good luck going forward and keep posting.