What do you do when your medication s... - Restless Legs Syn...

Restless Legs Syndrome

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What do you do when your medication stops working?

magggzzz profile image
5 Replies

I've been taking clonazepam for RLS for many years now. For a long time just one tablet a night did the trick but then I started to need more and more to have the same effect. I stopped taking it and tried every other medication the doctor had in his repertoire but nothing worked. I had very high hopes of Requip but sadly it had no effect at all. I've ended up back on the clonazepam with a side order of gabapentin but I'm not sure that has much effect either. It seems that for me it's clonazepam or nothing. The problem is that it's taking higher and higher doses to have the same effect. Like most people some nights are worse than others and try as I might I just can't seem to pin down any cause.Too much exercise is bad, too little is bad. There's no food I can pin it to and I don't drink anyway. Most nights I take between 2 and 3mg but just a few nights ago I had to take 5mg before it went away. This means I have no evening as the time between my legs calming down and the medication knocking me out is shorter the more I take. Also I'm 53 so hopefully I have many years to go but I can't keep upping my dose indefinitely even if I could persuade the doctor to give me more which is doubtful. I don't get any pain with it and also once I'm asleep I'm OK even if I wake in the night.

I know some people will recommend me trying the medication that works for them but frankly I'm scared of stopping the clonazepam as I really don't think I could go through again the way I felt last time I tried to do without it. What I really need are some suggestions for something I could do that would reduce the amount I need to take.

Help please!!!

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magggzzz
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Tpebop profile image
Tpebop

Hi. It's 05:07 and even after using a 3mg Neupro patch and two 0.088mg Mirapexine tabs, my legs are still kicking and I've been relegated downstairs to the sofa by my wife so she can get some sleep as my kicking was disturbing her. My legs are still kicking and I've had probably minutes of sleep tonight. The point of this? Like you I now wonder if my meds have stopped working. I remember when my RLS was not treated and it was a hell that I'd got used to. Perhaps the treatment I've had over the last couple of years has been a short term blessing. Like you I am a 53 year old man and want a few years yet. I'm hoping my sleep physician will sort me out and I can see moving into a treatment like yours: a combination RLS teatment and sleeping pill. What can you do? Try getting refettal to a sleep clinic if there's one near you. Otherwise the suggestion from another member here seems interesting: going off your present med onto an old one that worked, then returning to the other drug but on a lower dosage. Hope you get yourself sorted. Regards, Tpebop.

jumpylegs profile image
jumpylegs

I understood that a sleep clinic could not diagnose RLS, and that diagnosis was simply a case of do you have all 4 of the criteria required for rls diagnosis. i.e. symptoms start at night, get worse at night, are helped with movement, and you have an urge to move which cannot be ignored.

However, with regard to medication, is it possible to add a low dose of another rls drug to your clonazepam, rather than increase the clonazepam. Thus avoiding the side affects of a high dose of any particular medication. I take a cocktail which quite successfully (most of the time) deals with my 24/7 symptoms.

magggzzz profile image
magggzzz

Thanks jumpylegs.

I mentioned I already take gabapentin along with the clonazepam. I can't imagine adding anything else to that as they are already 2 heavy duty drugs. What cocktail is it that works for you? Bear in mind that I live in the UK and some of the drugs often mentioned on this site are, as far as I know, not available here. I get co-codamol for migraines and sometimes I take two of those and it does help a bit but if I take more than an occasional 2 they make me itch all over. Not fun!

jumpylegs profile image
jumpylegs

I also live in the UK.

For rls 24/7 I take ropinerole 4.5mg daily and this is spread over the 24 hours being stronger in the afternoon and evening, I also take tramadol starting at 1pm and the last dose at bedtime. This works more or less. If I have breakthrough or I'm going to a movie etc etc I take a codeine 30/500. The codeine is prescribed for neck and shoulder pain but in all honesty I get it and use it as an rls backup. Tho my GP doesn't realise this.

Also at bedtime I take 20mg amitriptyline (for fibro) and it is also good in promoting sleep. Couldn't sleep without it. Yes... it is considered not good for rls-ers but I seem to be not affected by it.

Also I have zopiclone sleeping pills but I rarely need to take them since starting the amitriptyline.

Taking a cocktail means the dosages of each are kept as low as possible to minimise side affects. And also each medication is attacking the symptoms from a different angle.

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