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Restless Legs Syndrome
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Here we go again... and again... and again!

Yet another night when I fall into bed longing for sleep and all I get are legs! Surely there's an easier way???

This must make it five or six nights in a row since I had much sleep and I can quite successfully start to fall asleep on my feet but as soon as I hit the bed my legs play up. it's ok if I distract myself when I'm up as I don't feel my legs then but once again- back to bed and legs! How to cope with life when I can't keep my eyes open during the day and can't nap because legs start once I go to bed no matter what the time is.

I'm on less than a quarter of the dose of pramipexole so that's a huge thing and I must surely finish withdrawals eventually, once I'm off the drug. It's so hard though trying to live normally when I can't even open my eyes properly- my lids are constantly at half mast. The only things that are really awake are my legs!

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How much pramipexole are you on now? Unless it is still quite high I would consider just stopping it at this stage. I know Dr. Buchfuhrer takes people off quite high doses without much titration on the grounds that you are going to suffer whether you discontinue slowly or rapidly. A slow discontinuation can prolong the agony. Maybe you should try emailing Dr. B. Unfortunately when discontinuing pramipexole you can expect significantly exacerbated symptoms and very little sleep until the drug is washed out of your system (about 10 to 14 days after taking the last pill).

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Wonderful advice. I will stop from here on in. I was taking 2x 0.25 mg. Can anyone email Dr B.?

My symptoms are definitely a LOT worse since reducing the dose. However, I do seem to have less problem with daytime RL than before???

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Good work!

Better daytime symptoms is good news, that happened to me too.

My baseline without pramipexole seemed to be being able to go to sleep and then being woken by wriggly legs about 2hrs later, being really unsettled for 2-3 hrs then being able to get some more sleep.

A month down the line after stopping pramipexole and a week into 100mg of gabapentin...the evenings are good, I can go to sleep and when I am woken things are generally easier to settle (not last night though!)

I feel that I am getting better quality sleep, look a little less haggard and have even dreamed a couple of times! I'm hoping this will improve more as the gabapentin takes a while to build I believe, I'm holding a dose increase in reserve!

Fingers crossed for us all!

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I get off to sleep easily first thing at night then perhaps half an hour later, I'm up and that's the end of hope to sleep. I will be up, finally try to sleep, sleep, then awake about 45 minutes or so later. I didn't know there were such a lot of 'cycles' in the night!

I can't wait to be completely free of pramipexole and then start off again, trying to improve things. I have no idea how bad my legs are going to be without it but at least I will know, hopefully, what is 'real' and shat isn't. Thanks for the hope.

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That's exactly what happens to me. I get to sleep for a short while and then the legs kick in - although not at the moment - they are controlled just now.

I would think you will notice an appreciable improvement in your symptoms when the pramipexole is washed out of your system. In addition to improved symptoms, I found that I felt more like my old 'self' - I hadn't appreciated how much the drug had turned me into a different person.

I am sure you will have had iron mentioned previously but I am too busy to check. Do make sure your serum ferritin is high (over 100) or alternatively take a supplement.

My understanding is that Dr. Buchfuhrer is of the view that there comes a point in withdrawal from a dopamine agonist such as pramipexole when titrating down is simply prolonging the agony and there isn't much point in reducing slowly - you might as well jump ship (provided it isn't from too big a dose which can cause dopamine agonist withdrawal syndrome but I think you are probably out of that danger zone now). He accepts emails from everyone and generally responds within a day (he is a saint to the rls community) so in your shoes I would definitely email him - if only for some reassurance re whether it's reasonably safe to stop outright at the dose you are on. You will find his email tucked away somewhere on his website rlshelp.org. You can also see the pages of questions he has answered from rls sufferers all over the world - they make fascinating reading. If you email him you will likely see your query up there in a few days.

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Thank you. I will do that. I slept for about 40 minutes after 6 am and it's pathetic how grateful I was! :)

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Not pathetic. But totally, and I mean totally understandable!

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I am afraid I cannot offer any practical help but just want to congratulate you on sticking with reducing pramipexole whilst going through all this. Really well done.

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Lets hope it works in the long run. I am only thankful that I am not at work at the moment as I would be falling asleep at my desk all the time. Thank you for the support and encouragement.

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Are you taking any opioid to help get through the withdrawal period? If not, have you considered discussing this with your doctor?

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I do have Targin to help and have been taking one a day. Tonight have taken two and no relief yet.

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In fact this is the worst night yet! Not surprising if I haven't taken ANY of the offending drug. Going slowly mad!

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After I withdrew from pramipexole it took 30mg of OxyContin (slow release version of the oxycodine in your Targin) to calm my legs for a while. You may need more than you are currently taking.

I don’t know how much oxycodone is in one targin. In your shoes I would be inclined to use more than you are currently (depending on how much is in each tablet) BUT only use it every second or third night to reduce the chance of dependency. It is very easy to develop dependency on oxycodone. It’s fine if you decide to use it long term (in which case it doesn’t matter if you have some physical dependency as you aren’t intending to stop it) but if you only want to use it temporarily then you don’t want yet another difficult withdrawal to deal with once your post-pramipexole improved symptoms kick in.

One way or another I would suggest you stick with your decision to discontinue pramipexole. You will definitely not regret it in the long run. Though it is pure torture while you are going though it. You might like to read the experience of Nick-the-Turk who recorded his experiences coming off pramipexole daily. It is an awful process but everyone is glad when they get through it.

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There's 5 mg in one tablet. I don't think my GP would give me a higher dose!. He's vey careful about opioids. Thanks for the encouragement I'll try though and talk to my GP. I have had the most awful night and I don't' want another one like this one!

The birds are singing now and I'm thrilled my night is nearly over!!!

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It may help to bring a printed copy of the IRLSSG report/paper on opioids for RLS (Mayo clinic proceedings). Good luck.

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Thank you.

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Hi restlesstoz,

If you’re still taking Pramipexole 0.250 x 2 a day that’s still a significant dose.

I came of just the 0.250 x 1 a day , & it took me a good 3 months to completely withdraw from it. I found it best to withdraw 1/2 a 0.088 mg tablet at time , & give your body time to stabilise in between , because if you’re not sleeping 💤 very well now, a quick withdrawal could make this worse. I found the first few nights after withdrawal of the 1/2 tablet, would make my jerking legs worse, then gradually I saw alittle improvement, & then waited 1to 2 weeks depending on how my legs were before, I withdrawed the next 1/2. Any way good luck , & I hope your legs soon start to settle down. Best wishes Tim61.

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Thank you for your advice. I was on that dose . And now am on nothing! I expected some difficulties and hope that things will improve as my body adjusts. I was too impatient to go slow and some advice was that if I could tolerate it, then it may be better to go quickly. Time will tell if I've been sensible or not!

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Hi restlesstoz ,

We’re all individuals , & what works for one does not always work for others. So I wish you all the best for the future. I was not judging you, I would not like you make your symptoms worse. Kind regards Tim61.

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I didn't feel you were judging me at all. :) I'm grateful for all the advice and encouragement I can get. In this RL world where there are no road maps or sign posts, any help is gratefully accepted. Now I'm wondering if the tramadol I've been on for ages is also a factor!

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Ohhh.. you’ve been on tramadol “for ages”? There are one or two published (in the scientific literature) records that tramadol may cause augmentation. I read those, but it’s been quite a while ago. I seem to remember that it occurred at higher doses of tramadol, some 400mg daily. What dose have you been on? And for how long? It may be worth to try getting a change in prescription, maybe for oxycodon slow release? At least as a temporary measure and to see what difference a change away from tramadol will make. If you need the tramadol-augmentation papers to show to your gp, let me know and I’ll try to hunt them down for you.

Hope you start to feel and sleep better soon, very soon!

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Thank you. I've been on 250 mg daily in a 150 (day time) dose and a 100 dose (overnight). both extended release. For the last year or so it's been these doses and then for several years before that, smaller doses.

I will have to try talking to my GP about it. I would be happy to be on something different if only it would help!

I've had periods where my RL has been good with no symptoms for weeks but not lately! If a drug causes augmentation, does that mean it happens all the time or is it still a 'sometimes' event.

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No, augmentation is far from an ‘all the time’ or ‘sure thing’ event. And with tramadol, although officially published, accounts of it are extremely rare. Contrary to accounts of augmentation on DA’s.

In my opionion, prior to augmentation, is tolerance, i.e. the medicine becomes less effective. I had that with tramadol, after a few months on a low dose (50mg). Same with oxycodon, although that lasted a bit longer. I recently found an extended leaflet on oxycodon from the Dutch med-assessing committee (don’t know the English or US or Oz equivalent) that with daily and prolonged use, drs should be alert to tolerance and prescribe drug holidays to reset sensitivity. Obviously, these painkiller medicines are not ‘made’ or intended for chronic, daily use - as we need them.

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There is so much to consider! I have been altering my lifestyle to try to control RL for 10 years or so; not as long as some people, and thought I had it pretty much understood in my head. Now though with all the new information form the forum, I wonder now about how poorly understood my legs have been.

I've done all the right things that I could, such as diet, eliminating triggers- salt, sugar, caffeine etc. and now wheat and dairy. When they became too bad to control I went to the doctor who has, in his ignorance, added drug after drug to my regime and inadvertently made things worse. My neurologist who I thought had good handle of RL hasn't even suggested augmentation. Now I feel as if I'm on a dangerous river in a boat with no captain and no paddle!

I haven't slept for weeks without waking several times a night and since stopping the pramipexole I have barely slept at all except one strangely good night. I'm so tired I keep falling asleep where I stand or sit (typing on the computer!).

Added to RL is arthritis in my ankles and knees (and other places but these are what affect the RL.) and if I'm up with RL it makes the pain from arthritis worse and then it's a vicious cycle. The arthritis is getting worse almost daily and I don't know where all this will end.

Sorry to go on! It's getting to be night again and I'm so tired and it's so hard to face another night standing up with RL. I can't even sit down when they're bad.

Thanks for your help and support. I'm off to get ready for bed- though there's not much point really is there! But then, there's always the hope that tonight will be different and sleep will come blissfully and for more than 10 to 40 minutes at a time.

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Feel free to rant! And repeatedly so, if necessarily and if it helps you to let off steam. Most of us can truely say “been there, done that” as you Aussies do.

I have come to realise that with RLS, and maybe many more diseases, less (medicines) is more - in terms of health and control. But then, medical doctors are trained to diagnose and then ‘throw’ medicines at people. Change is arriving only slowly. It is the same for our ‘waad - we are all different’ adagium. Md’s are not trained much in that aspect.

Hope this will be one of your good nights with many more to come! Hang in there. You will get better. Maybe tonight, maybe tomorrow, most likely soon.

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Thank you LotteM. I do appreciate your wonderful support and wisdom. Been to bed, to sleep and now up again. The first of my one hour cycles! Sill, I DID sleep albeit for 45 minutes! :) Now to distract and get through some time. Washing to fold and put away1 At least there are endless jobs to do. :)

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Way to go! I must say the odd jobs around my house are piling up these days. Still, I don’t want to go back to a situation similar to yours.

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Yes, I'd love to have a night in bed and lots of odd jobs 'piling up'! (One more try at sleep- I did go to sleep but awake only minutes later! ) Still, I'm not feeling to bad knowing that this is what so many have gone through before. :)

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Hi restlesstoz,

I had to post to you again, because it sounds as though you’re going through hell, & I really empathise with you.

I know my symptoms are a bit different, because the Drs thought I had RLS, then discovered it was actually myoclonic jerks in my legs, some of the symptoms are very similar .

With my Drs help , I tried & now take 750mg @ night, a drug called levetiracetam; it’s a anti-convulsant medication & is in the same class of medications as Gabapentin. It is mainly used with patients with the myoclonic form of epilepsy.

Just after I started taking it , I found some interesting information saying that it had been used in research to see if it helped RLS , & it had been some help , to some patients, I actually put the research details on a earlier post I made, perhaps you might like to take a look, & see what you think.

Good luck, & I do hope you find some relief from your symptoms, & your quality of life soon improves. Best wishes Tim61.

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Thanks Tim61. I will look at your post. Thanks for your support. It all helps such a lot.

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Hi, I was on 0.088 of pramipexole for a year or so, and then started to need more, so having read all about augmentation on this site, decided to just stop taking it, which I did. I felt rough for a couple of weeks, but then was ok re withdrawal. I took codeine instead to help me.

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Hi EveW, Thank you for giving hope to some who may not always have a nightmare time going off pramipexole. My GP said he knew of no one who had gone off it and had a lot of trouble. I still think he doesn't believe what I went through is withdrawal. lucky you to have heard about augmentation before you took higher doses! I had never heard of it but was still on the 0.25 dose I was on, but took two doses a day. in Australia now, we can't buy codeine over the counter and need a doctor's prescription for it. Good luck with your legs in future. What do you take now and how are your legs?

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