Hi fellow RLS sufferers! Great to catch up with you all on here....
Well it's 3:35am...and I'm downstairs writing this. Stayed in bed until 2am and then couldn't suffer the torture any longer. I had been taking Pramipexole for around 3 years and like many considered it a 'wonder drug' but then it turned on me BIG time (Augmentation), simultaneously I suffered a stomach bug, so had virtually no sleep over four nights. G.P. is gradually introducing Gabapentin & I'm due to see him again next week. Really busy educating myself re RLS as whilst the Pramipexole was working, I considered it miraculous and just got on with life. However unless and until I can find a suitable alternative, I can't see me returning to work. I'm totally sleep deprived and at my wit's end with it all. No sleep = cannot function! My life has been turned upside down in the space of 10 days...and I'm daunted at the prospect of a future trying to manage and get the RLS under control again.
I'm by no means wealthy but I'd travel the length and breadth of the U.K to speak to someone knowledgeable who can give me advice and help.
Any suggestions please? Many thanks in advance.
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Boo-boo
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You've found a good site for advice and help. Augmentation sux big time. Of course you can't function. None of us here could either. You'll find each one of us has our own blasted story and our own ways we cope. You might ask your Dr for an additional rx for pain or sleep. Right now I take klonopin to sleep. It's good so far. But that doesn't help you right now at this moment. Getting off the Pram is awful. But you can do it. Many others will share with you here about it. Vitamins...foods NOT to eat, alcohol, iron tablets, CBS oil....we've all become desperate for sleep and a normal life. Sending the sleep fairy to you friend.
Sleeping tabs do not work on Restless legs. If they do for you, then yours are not the genuine Restless Legs. Mine still jump around when under anesthetic, much to a surgeon's surprise. Sifrol are the only tabs that work on me but they cause addiction.
Coming off Klonopin is the ultimate hell. Just go to the benzo withdrawal site and read some of the stories. I'm trying to find something non addicting to help RLS. My Dr. Abruptly stopped Pramapexole for RLS. I have been having horrific withdrawal symptoms, but nothing compared to benzo withdrawal.
Shame about starting to gaba before you cleared prami from your system as it might not work or will give bad withdrawal symptoms! Talk to GP about sleeping medicine like nomorls said.
I came off prami 4 weeks ago now and have chosen no medicine route. I am glad I did. Like yours my GP gave me gabapentin to start after coming off prami but It is still in the drawer and no plans for using them. They all have some bad side effects. I know some people don't have luxury to choose (anything to get rid off rls) but in my case I am lucky as my RLS got mild since I have given up prami.
Of course I had such a hard time for the first week. And no sleep no function was my life too. It took about 1 week to get it off my system. I feel like different person now as long as I stick to my strict diet. boring but worth it.
I was on a iron bisglycinate which is a magical stuff. I know it doesn't work for everyone but as long as your ferritin levels are low (aiming for 75, please check with GP) give it a shot. You never know. Also I take folic acid, b12 with breakfast then calcium and magnesium around 9.30pm. I have kinda stopped taking iron for the moment cause I don't need to take it as I can cope with the RLS.
Also I follow strict diet and experiment with food as I find some certain food makes my rls really bad. I stopped cafeine, chocolate, alcohol etc.
I hope gaba works for you. You are at the right place. This site makes you stronger as you feel that you are not alone.
An opiate such as Tramadol is good for getting you through the withdrawal. You need to become the expert and RLS by Buchfuhrer, Hening etc may be worth a read. Your GP may know v little but as long as he refers you to a specialist and is prepared to give you prescriptions as he gains confidence in you and your knowledge - he will do!
I like your description of the twilight world. Welcome to this place where we are all doing our best to bring a little illumination to that world.
Before you travel length or breadth of the anywhere, it would be worth spending time educating yourself very fully as even the best experts will not beat the kind of knowledge you will access on this forum, in the book recommended by John Naylor (full name: Clinical Management of Restless Legs Syndrome), on Dr. Buchfuhrer's patients questions page on RLShelp.org, the RLS section of the Johns Hopkins website and the US forum at bb.rls.org.
The two biggest topics you will encounter are augmentation which, sadly, you already seem to know about, and iron. Many RLSers (though not all) suffer from relatively low iron levels and bringing up those levels result in improved symptoms for many (though, again, not all). It is therefore recommended that oral iron is taken although IT IS IMPORTANT to get your serum ferritin levels checked to make sure you are not in the smallish category of people who already have high and sometimes too high iron levels. If you are in this category taking iron could be dangerous for you. It is a simple blood test which your G.P. should do for you. If you are anxious about being brushed off by your G.P. it might be worth ordering the book referred to above as it is a 'proper' medical text and hard for a G.P. to dismiss.
I have noticed anecdotally that in many (though not all) cases, where a sufferer is well informed when they attend their health carer, they tend to achieve a better outcome for themselves and may even eliminate the need for an expert. Obviously it is important not to arrive at your GP surgery officiously mouthing about having 'read on the internet' - I reckon this is the most immediate route to alienating your health carer - but if you can show that you have looked into your condition in detail and checked your sources carefully many GPs will work with you rather than in spite of you.
I would second what has already been said:
gabapentin may work eventually - it does for many - but it is very unlikely to help in the period while you are withdrawing from pramipexole as the symptoms will go through the roof until the drug is eliminated from your system (typically 10 to 14 days after the last pill) - don't be put off if it doesn't work for now - do try it again once you eliminate pramipexole;
tramadol is much more likely to help getting you through the horrors of coming off pramipexole if you can persuade your GP to prescribe it - you can come off it and try other routes after the withdrawal period;
you are unlikely to be able to work effectively while you are withdrawing from pramipexole;
check the list of substances to be avoided to ensure that you are not inadvertently exacerbating your symptoms with something you are eating or another med;
it is important to bring you iron levels up - this can help even during the withdrawal phase but as I said you need to get your serum ferritin levels checked first - be sure to get the actual number from your GP surgery - don't settle for being told they are 'normal' (they do this to me EVERY time I get them checked). Normal for RLSers is not the same as for normal people.
InvoluntaryDancer has Eloquently and accurately set out everything you should do. Excellent advice. Getting off prami will be really hard for 2/3 weeks with hardly any sleep BUT you will get through it and there is light at the end of the tunnel.
We are all willing you through this. You are not alone.
I am taking magnesium. Have also been on Prami and GABA for a couple of years each but had to come off when the stopped working. Read about somebody a couple of months ago who had started wearing COPPER socks and swore by them. I bought some off Amazon two months ago and am RLS free at the moment. Hope it lasts. Not sure if it is the socks but I am not taking any drugs at the moment so will have to wait and see but so far so good.
Collectively, thank you all so much for your replies. I am 'blown away' with the amassed amount of shared knowledge and information on here and in my head I feel that I'm in a better place already, knowing that there is so much support in this community, and I fully intend to embrace it. It is a huge comfort to know that I can tap into all of this in an instant.
Currently I feel that my normal day to day life is on hold, a temporary measure I hope but right now I can only take things day by day whilst I withdraw from the Premi. My anatomy feels in a total state of flux, and my body clock totally wrecked. A real train crash scenario going on - but I'll get through it. We all know there's no quick or easy fix - hit and miss, trial and error but I'll create my own pathway with all the guidance from you lovely peeps! This truly restores my faith in human nature. Again, many thanks to you all for generously giving up your time to respond. I'm taking it all on board a very frazzled brain but it is indeed very much appreciated.
We have a common goal....let's kick this RLS into touch ...Yay!!
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boring but worth it. 
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