RLS started on ropinirole. Does it help??

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Looking for some advice as to whether or not ropinirole helps with RLS and what the side effects are upon starting these?

Thank you.

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  • Posted

    Hi Kerry, Roprinirole was the first drug that I encountered, unfortunately I had bad side effects, almost like when you get a dry throat and try to swallow, kinda makes your eyes water? Hard to explain, but this feeling didnt subside and it went on to cause nausea. I'm now on 3mg neuro patches and codeine phosphate. The patches are well tolerated but does kinda make you a little detached/sleepy, which isnt too bad as I didnt sleep properly for many months. Sleep is hit and miss now, but 2 hours is alot better than none. I think here in the uk patches are a last resort as they are the most expensive. Augmentation happened very quickly for me, fingers crossed for you kerry, I know here in the UK very little is known about RLS.
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  • Posted

    Dear Kerry

    Sorry to hear about your RLS.   It seems that there is little really known about RLS by the medical profession anywhere.   If you read the posts on this forum you will see that doctors are trying a wide range of drugs with highly variable success.   Some people have one drug and it gives them relief for years while others try lots of drugs and have bad side effects or no relief from them.   I have had bad reactions to both of the two drugs I have tried.   I dont want to experiment with others because some of them cause dopiness all next day.   If you start a new drug READ the information agreement to see what the side effects might be.

    I have had some success with diet.    There is a discussion on this forum called ""RLS and Diet"   I suggest you read that and see if you want to try a FODMAP diet.   It worked for me but I don't know anyone else who has tried it although others say that food has something to do with their RLS.   I am now getting 6 or 7 hours sleep and many nights with no RLS.   When I do get RLS its much milder and I can usually walk it off in 10 to 30 minutes and go back to sleep.

    If you want to try it let me know and I might be able to gshare some experience.

    Cheers

    Graham

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    • Posted

      Hi Coral

      There is a diswcussion on this forum called "'RLS and diet"' that has some details but briefly the FODMAP diet has been developed by Monash university in Melbourne Australia and is supported at London Bridge Hospital.   Google ""FODMAP Monash Melbourne""  and ""FODMAP London hospital"" to get lots of links.

      Fodmaps are types of sugars that some people have problems digesting properly.   The diets were developed for people with irritable bowel syndrome.

      I have RLS and I noticed a connection between indigestion and RLS.  I tried a gluten free diet and I had a significant improvement but many lapses when I couldn't see that I had eaten gluten but I still had bad times.   I then found out from Monash that it was probable that gluten intolerance had been misunderstood.    It suggested that there is no midpoint in gluten intolerance - you are either celiac or your problem is not with gluten specifically.    There is this group of sugars that mess people up and many of the foods that contain these sugars also contain gluten.  Hence the confusion.

      So I have been experimenting with the FODMAP diet and found it has been a great improvement.  I still have bad nights and some RLS but its nothing lkike what it was 12 months ago.   Unfortunately I am not a good test subject as I have some other problems with my legs that produce similar symptoms.  I sometimes find it hard to be sure if the feeling in my legs is arthritus, sciatica or RLS.    This is a remarkable improvement from the old days when my legs were thrashing around and I had to keep walking until 5 or 6 am.   

      I would encourage anyone with RLS to read the other post and try the FODMAP diet.   There is no downside to trying it out except that your choice of foods is limited for a month or so.  The idea is that you go on a strict FODMAP diet and then if your problem is alleviated you start to introduce each sugar group and see if it affects you.     I think you need to get help from a dietician so you are sure you have it right.  I haven't been able to do this reintroduction yet partly because I haven't had a really involved dietician and every time I've tried its made it worse.   I think you need to ask the dietician if they have experience with irritable bowel syndrome and FODMAP diets before you make an appointment.    That might just mean that I have reactions to every sugar group so I have to avoid them all.   I hope not.  

      You will make mistakes and be pounished for them but don't give up.   For example a week ago I had a salad that was made with rocket rather than iceberg lettuce,   I had a bad night and then realised that I am only allowed a limited types of lettuce.   Another night I ate a gluten free pizza forgetting that the mozarella cheese was not allowed and I was punished.   Sometimes I think I deliberately forget because everyone else is eating food I'd like but I know its not worth it.    Of course sometimes the resturant doesn't know what's in their food but they tell you its wheat free or whatever you want to hear.

      I also cut out caffiene and that helped when the RLS was quite bad.  I am also taking extra iron (100mg per day) in the hope that will encourage extra dopamine generation in my brain.   Before I was on the diet I found that the iron made a definite improvement for a month or so.   I didn't have a measured iron deficiency before taking the supplement but I have been told it wont hurt me.

      I have seen a neurologist who told me there was nothing that could be done except drugs that made me nauseus or too sleepy during the day.   He was sarcastic at the suggestion that diet might help.  So this theory is not based on medical advice.   

      I need some expert advice on the amount of allowable food you can eat.   My curretn understanding is that almost everything contains some FODMAPS so you can eat reasonable amounts of low FODMAP foods but you can overeat them as well.   For example I started eating 4 or 5 bababas per day becaus ethey are easy.   teh RLS returned and I think I was just overdoing one food type.   Now I try to eat a bit of many things and it seems to be better..Some foods, like grapes, you are only allowed a small quantity (three cherries) and I would rather just take that as zero.

      I am also part of an trial group for an experiment run by Monash to investigate the possible benefit of some excercises on RLS.   It shows some promise but I'll report to the forum when the trial is complete.

      Good luck

      If yoiu have more questions please ask.

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    • Posted

      Dear Coral

      I have replied but its gone for moderation.   If its deleted I will send another

      I can't put links here so I suggest you search for ""Fodmaps monash melbourne"" and you should get a good explanation from the original researchers..

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  • Posted

    I have been on the Foodmap diet for 4 days now and have had no bad nights. I have also not had any alcohol. I will keep up the diet for another 3 days and then have an alcoholic drink and see what happens. I have cut out all gluten and lactose in this diet. 

    Lactose free milk is easy to drink but the gluten free bread is not so good. Rice crackers does the trick though. Good luck

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    • Posted

      Dear Shirley

      That's great news.    Be careful of the type of alcohol because beer has gluten and I'm not sure about whiskey.    Rum seems to be OK but I dont drink more than i rum and coke.

      If your in Melbourne then there is a brand of bread Alpine that is marked FODMAO friendly.   I have tried it and at first got a bit carried away but a siongle slice might be allowable.   They have a few varieties and I think their Spelt upsets me.

      Please let us know if you get a week with no bad nights!

      Good Luck

      Cheers

      Graham

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  • Posted

    I have been on ropinarole for about 4 months and they have changed my life I don't get any side affects from them I take 4 tablets spread over 24 hours I only get RLS if I miss a dose or take a pill later than I should just give it a go 

    regards coral

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  • Posted

    I am still on the Fodmap diet with great success. I am following quite strictly cutting out all gluten and drinking lactose free milk. I have had RLS for 30 years and taken all the drugs. For The past 3 years I have been taking a 50mg slow release Tramal 3 hours before bed. Tonight I will not take the Tramal and see how I go on the diet.

    Shirley

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  • Posted

    I tried Roprinirole last night and I literally felt like I took a crazy pill or acid or something. I had hallucinations and my RLS went from a dull ache to a sharp pointy ache. ugh. I've had very good luck and a good night's sleep with Clonzapam but I am hesitatnt to resign to just using that because I would like to find a more natural cure. 
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    • Posted

      The most natural cure is to get your diet right and if you need to follow a FODMAP diet then you will see by the other posts in this discussion that it can help.

      Its cheap and only takes 8 weeks or so to see if it solves your problem.

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