What are your experiences of withdraw... - Restless Legs Syn...
What are your experiences of withdrawing from mirapexin/pramipexole and how long does it take?
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I hope to start my stop today. Don't know what to expect.+
I started on Friday night having been on 0.088mg for nearly 3 years. I have barely been able to sit/lie down at night and have got about 30 mins sleep max for every 20 mins physical activity - usual pacing. I would be really interested to hear how you get on. Good luck for tonight
I have never had to stop any of the dopamine agonists, always swopped one for another.
But from what i have read on various RLS sites, its a nightmare. Stopping the dopamine sends the RLS nuts. It can take either days, weeks or months to get your RLS back to base level from what i have read.
Good luck to both of you, i dread the day if i have to get off the dopamine meds..
I stopped using Mirapexine and changed to Gabapentine but was still using a 3mg Neupro patch. I now know what severe sleep deprivation is like. I walked around the bungalow all night, A lot of the time I was asleep whilst walking so walked into rooms that I shouldn't have been in (we had visitors), I bumped into walls and fell down steps. Altogether it was hell. I solved the problem by getting on to the Gabapentine before I should have done and then I increased the prescribed amount quite drastically. This improved the situation and I am now on 400mg Gabapentine 3 times daily plus the 3mg Neupro patch.
Good luck and hang on in there.
Thanks for this - night 4 coming up. I've been on an exercise bike in the night until I just come off it exhausted!
Thank you for your good wishes - I can understand you giving up and walking in your sleep. I would happily sleep in a sleeping bag vertically propped up in a doorway!
I don't know if I'll do it but I SO want to be rid of these horrendous drugs. Trying Valerian and other herbal relaxants tonight. I'll let you know if I get there.
I can relate to the exercise bike until exhausted; this is one of the things people cannot imagine. It has to be experienced.
how are you ? have you started your 'stop'?
I was so knackered I went to bed at 8 last night and for the first time I got a small respite until 11 which felt amazing. The rest of the night was pretty horrendous but I'm hoping that the Valerian was something to do with it and continuous use may benefit even more. Keep going - happy to be here to encourage you if it helps.
I once wanted a tread mill! Personally I find either over excercise or under excercise definately makes my symptoms worse. It just shows how very different it is for different people. I couln't use an excercise bike again. Tried it in the gym and you could see all the muscle movements in my lower limbs.
I know exactly what you must be going through with sleep deprivation because I have it. You are awake all night, moving around your feet or they are jerking. Concentration, memory becomes so bad and your eyes hurt, it's horrendous. Remember in certain countries they use sleep deprivation to torture people. It's horrible. I remember seeing a programme on it once which was not related to RLS but these people couldn't function either. I think quality of life has to be weighed up individually for possible benefits a prescribed medication may bring. I use a cheap massage foot cream and massage my feet and limbs at least three times a day. What can be useful is what you can get from chinese shops where you roll your feet over a set of balls but of course you can't do it in bed!
I dropped the pills into the dirty dish water..I was frantic. It happened after
dinner so no doctor was there to help me unless I went to the Emergency
Room which is a ton of money...so I didn't take them for 2 nights until they
could be refilled. My experience the first night was mild to medium..I
thought maybe I didn't need them after-all...the next night I was pacing,
knee bends, in tears, out of control with the core of my legs feeling like
water was fizzing all around them..I started to cry when I called my doctor
who refilled them with a sigh...the next morning. Now I doubt that I will
be able to get off of the pills without a very large dose of Vicodin or some
other equal which is not good.
Karen USA
I left all my meds at a shop near the hospital Karen but I have a small amount in reserve at home. I am frantic about it and have had to drop a note into the shop as it doesn't open to Monday !
Oh, I just took some of my pills out of the container and put them
into a safe spot so that if I ever have an event which causes
me to miss a dose (such as dropping them in the toilet =O
or the sink) then I can go to my second supply. Thanks for that
tip!
It's a good idea Yikes. You never know! It's easily done
Sorry to hear of these problems. I have tried to steer clear of this question as I had quite serious withdrawal affects that I was hospitalised. Dopamine agonists don't agree with me at all. I can empathise because although ropinerole caused similiar problems it worked on the horrible but painless sensory disturbance but the long acting pill caused insomnia. I have tried this drug three times and together with pramipexole under medical supervision. I won't go into the withdrawal affects as I do not wish to alarm anyone but those who do know my story will know that it hospitalised me and took a considerable time to recover. Remember these drugs act on the brain and no one, not even neurologists understand that organ. They think strongly there is a link with dopamine and RLS but early literature does approve of drugs that are not used such as carbergoline ( I think this may have caused concern with lung problems) and madapar. The latter two did not cause me side affects but they did not work either in the early 200'S. I found only the short acting ropinerole to assist because it did make you tired but it couldn't be tolerated. I was told that by a professor that it is only know that they are realising how dangerous these dopamine agonists can be in some instances. After all it is not that long they have been licensed, a few of them. It isn't impossible to reach your wits end even with the nasty sensory disturbance of bubbling in the veins like coca cola and shaking of the limbswith faciculations is no joke. The throbbing pain is no joke either. I don't though think these meds can just be stopped at all unless a doctor has said so. I do know I could not get the information to come off of ropinerole - longer acting, when it caused the same problems as the shorter acting one. Sorry this is so long. Be careful of using herbal medications with prescribed ones. They don't mix.
You just added another fear to my list that I can write out in an hour.
If I was forced like you were to stop the drug, I would have to sit in
a walker like a toddler does (with wheels, of course) so I could walk
until I sleep in the seat part of it. (Walk, sit, sleep in my little cart)
Sounds silly and even stupid to say but that's how desperate I was
when my pills were gone and it was too much money to go to the
emergency department of the hospital here in America....
Also, I wouldn't go to the Emergency Room Department of the hospital
because if I went in there for my leg issues, they would laugh, and
then label me as "Drug Seeking Behavior" on my permanent file.
There is a special code in America that follows you around for that...
The hospital will not make that known to the lay person however I do
have a friend who is married to the pediatric neurologist. She did
tell me that it would happen if I ever actually went there for that kind
of pain and leg disturbances. = / .
Hi,
thanks for this info. I have now been off mirapexin for a week. It has been long and exhausting. Some nights are worse than others, but I am averaging just over 2 hours sleep a night at the moment. I have emailed Dr B from the rlshelp.org site who contacted me. He just said that my symptoms were normal and that they can last a few weeks or a few months. He also said that in the USA he prescribes methadone for withdrawal but understood that this was not possible in the UK. So I just have to stick it out cold turkey.
The temporary relief I had from mirapexin in the early days was wonderful but brief and I refuse to keep changing and increasing these horrendous meds so I'm going to stick it out - horrendous as it is. It feels like reclaiming my body back. At the same time I totally understand why people would avoid withdrawal because it is hell.
I will keep posting on here and announce when things return to my old rls days.
I long for the day when they know so much more about this syndrome.
Jippyleg. You are in my prayers...I pray often and think of you going through this.
HI Yikes,
Thank you so much. What a lovely thought to know that someone is praying for me. Things have improved alot. I am now on day 16 and sleeping quite a lot. I am exhausted and my body aches but I haven't had any violent jerking of my limbs for a couple of days. I think my body is catching up and looking after it self. I am also avoiding all sugar, alcohol and caffeine. I never want to go back on meds.
glad to hear
Hi just wondering how you are now and how long the withdrawal process took for you? I have gone cold turkey for two nights now with pregablin and codeine to help. It's been so bad I've been waking every hour through the night. My rls wasn't as bad as that before the pramipexole so I know that's withdrawal symptoms. I took 150mg pregablin on the first night and fainted yesterday morning so only 75mg pregablin last night and it was equally hellish but not as dizzy.
I haven't had pramipexole for two nights, but wondering if I should introduce a quarter of a tablet tonight or if that's going backwards. Thanks for your help and advice x
I've been off Mirapexin 0,36mg for 4 days now because I'm prescribed gabapentine instead. I have the night jerks and feel very bad during the day and working and everything is very hard. My doctor didn't tell me it was going to be like that, I thought that gabapentine (my only hope) was not effective for me.
It's amazing that a physician doesn't have a clue!!
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