Totally fed up my mirapexin tablets have stopped working and the doctors say there is nothing else to help me !!
I looked in to going private but when I was asked the reason and I told them they to said they could not help me!!
They just don't care and don't have interest in what RLS is!!!!
I am going mad with these legs and can not cope any more with them.
Any suggestions please?
It would help if we knew what you have taken in the past if anything besides the mirapexin....If you havent tried anything other than mirapexin, believe me there are others meds you can use for RLS...
Ropinerole, Neupro Patch, Gabapentin, or pain killers, Tramadol, for one.
Too true, Rish change your GP!!!
Hi im kinda in the same boat im finding ot so hard to make my doctor realise that this is serious. So far all i have been givin is zopiclone which makes my head want to fall asleep and i do for a few seconds then legs alwaus wake me up its a constant battle i feel for you its so hard when people espixally doctors and family dont understand. To me the situation is totally helplass cause no one listins constantly banging my head against a brick wall. I am going docs today cause cant carry on like this theres gor to be something i can take to calm my legs without plying myslef with zopiclone and painkillers both of which dont seem to do anythong apart from sometimes masking ir for only for it to come bk again sooner than i would like!!!!!! I will post what the doctor says later on!!!!
Perplexed, change your GP!!!
Hi , I have been on Ropinerole , gabapentin, tramadol, zopiclone and many others the only thing I have not tried is neuro patch I was told I am to young to have that ??? I am 35 !
I ahve heard someone else say that they were told they had to be 35, which is crazy, but that must be how they regulate it across the pond. In the US, it will be back on the market on July 1st. Too bad Tramadol does not work for you. I am one of the ones who also has no meds that work for me, except for narcotic pain meds, plus a sleep med, plus an antidepressant that induces sleep and does not bother my RLS. someties a combo works better. Have you been able to see a neurologist or a sleep doctor or have you just been dealing with this one doctor? Am also, wondering how long a trial of each med that you did, and was it side effects that stopped you, or did they just nt all work? You said your Mirapexin has stopped working, which means it was working and now you are experiencing (most likely) augmentation, which means when the dose gets too high, it actually will make your RLS worse, so then a drug holiday is in order. So, will any dopamine agonist, so that includes Ropinerole and Neupro.
If you have used Ropinerole and Mirapexin then i cant see why you are not allowed to have the patch even if your doctor thinks you are too young...!!! All those 3 meds. are similar as they are dopamine agonists...just the with the patch you dont swallow it...lol...I would ask your doctor WHY he/she thinks the patch is unsuitable and why age comes into it...
Try BACLOFEN 10 mg. Recommended to me by a Neuro specialist and has worked for the past 6 months. Tried premipexole and ropinerole but these made it worse after some months. (one of the side affects). I just take one Baclofen before bedtime and although I have 1-2 pit stops in the night I can go straight back to bed and can get stretches of 3 to 4 hours sleep.
The neupro patch has been a complete miracle for me. I never heard of an age issue but was over 35 when I started it so no reason. Being in the US I have followed the withdrawal and (HOPEFUL) return and do not recall seeing an age issue. I have been fortunate to be in a trial of it, so didn't have to go long without. The huge benefit is you don't have the 'wearing off' and waiting for a new pill to kick in for a couple of hours. Maybe try calling UCB - the maker or check on the internet for contraindications. Sleep deprivation can be fatal. KEEP TRYING & good luck.
If you live in the UK especially Scotland the neupro patch is considered too expensive. My daughter gets sick with the Ropinirole whereas its my savior. My doctor tried changing me to the patch but it was worthless. Bearing in mind your not supposed to give prescribed meds to others i gave my daughter some of the patches i had left to try. The are perfect for her but when she told her doctor that's when it came out about the expense of them. She had to fill in a form for them to judge how severe her condition was and they are making her try the Ropinirole along with an anti sickness tablet (not doing any good) and she has to do this for so many months before they will consider letting her have her patch. As for getting the doc to understand i got fed up with that, looked up everything i could on the internet about it, printed it off, went into the doc and plonked it on his desk and told him to read that and he might understand what i was talking about lol. He handed it back to me then dictated a letter for me to see a consultant about it. Result ........ i got my medication and the satisfaction of going back to tell him i was right.
I don't recognise any of the medications mentioned here, so I apologise in advance if I'm duplicating someone else's information.
After suffering with RLS for most of my life I finally got a formal diagnosis last month and was prescribed Pramipexole Teva tablets. They have had a miraculous affect: my legs are still all night! I haven't yet taken them during the day as I'm taking medication for other conditions, but for solving night-time RLS I highly recommend these tablets.
You said you'd tried most things but I wondered if you'd tried clonazepam. It's the only med that works for me. It does make you drowsy but if you time it right that's not necessarily a bad thing and if it works for you then you'll at least get some good sleep. It's not the most popular med for this. I've noticed on this website that a lot of people don't rate it at all but I swear by it. It's not a dopamine agonist, it's actually an anticonvulsant mainly prescribed for epilepsy but in much higher doses obviously. When I first went to my GP with this problem she told me that this was the only med that she'd found that actually works for RLS and certainly in my case that's true as I've tried most of the others available in the UK. I take it as a cocktail along with Gabapentin and it does the trick although the dose I have to take varies with how bad it gets that particular night.
Good luck
Have you tried the compassion stockings
How best to manage ?
In my belief this is what caused my RLS!
PLEASE HELP ME TO KNOW WHERE TO TURN NEXT! ROPINEROLE WITHDRAWAL AND I CANNOT TAKE IT ONE MORE DAY!! I AM OPEN TO ANY ADVICE PLEASE!!
Unable to sit. Anyone else have this?
Nowhere else to go
