R.L.S. and augmentation

I have had this horrible problem since i was about 10yrs old and it took me a long long time to get a doctor to listen and refer me to a neurologist. I am now 65 and when i saw the neurologist approx 8yrs ago was eventually put on Ropinirole low dose which was a blessing but am now up to 8mg three times a day hence the augmentation. I requested an appointment back to the neurologist because of all i have read on this site re that problem and know myself i am on too high a dosage. What i am really after is what kind of questions should i be asking the consultant and what kind of info can i give him that will convince him i am not round the twist. I am petrified of having to change meds as my doctor did try me on the lowest dose of the patch over a year ago and it got so bad i really felt so depressed and felt like i could easily taken my own life it was so bad. I am due to see him next week and would like to be able to print some info off to take with me. I did this the first time round and the consultant (now retired) kept my info to study because it was the first time he had come across a case of hereditary R.L.S. Father, both sisters, brother, my daughter, one sisters daughter and my granddaughter all suffer from this in varying stages. I seem to have come off the worst so far. I really am terrified of going through a change of meds as i know how long it takes to get into my own doctor never mind see the consultant. Anyone got any ideas or info on how to get through to them how serious a problem this can be for us. Any help would be really appreciated. Many thanks in advance. Until i found this site some time ago i felt as if there was nobody else like me now i know i am not alone and can come on here and get loads of info or help if i need it.

8 Replies

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  • A lot of doctors seem not to understand what augmentation is...and wow, that is a way to high dose you are taking of ropinerole for RLS, but you have realised that yourself.

    I can only suggest you do as you did before, take info on augmentation to your doctor, and on what others medications are available to treat RLS. As you have already tried the patch which didnt suit you and you are on the ropinerole. The one left in the dopamine meds, is Mirapexin. Other than that there are others to try. Look at the NHS Choices website, i think they list the meds available here in the UK. Changing meds is scarey, i used to leave mine on the side in the kitchen for days, before i got brave enough to try them...mostly because i am sensitive to the meds. and i was warey of what side effects i would get.

    Lots of info out there on RLS and the affect it can have on our lives. I am sure you could find a good explaination on that on the NHS Choice website too....but dont quote me on that one, as i havent looked...

  • Hi Elisse, I find Mirapexin works well , started with 1 but now up to 4 a day but this has been over the last 4 yrs but lately i have tried taking 2 co cocodamol 30-500 at night before i go to bed and this seems to be helping , that along with Mirapexin does help me Elisse , good luck

  • Thanks Elisse i wasn't sure if that would be enough but as you say the only thing i can do is take in as much info as i can. The only other thing bothering me is i have noticed the name of the consultant i am seeing this time. It will be at the James Cook University Hospital and i know for fact that this guy also practices at the local hospital as an expert on Parkingsons. He in fact is the doctor my GP sent me to when i had gone onto the highest dose of the Ropinirole as my GP was worried ....not for me..........for his license in agreeing to give me such high dose and the consultant turned round and said no problem its the max for Parkinson so carry on!! I am beginning to realize there's more than just info on augmentation i may need to take with me lol. Will let you know how i get on and thanks for the advice.

  • Someone on another site has had the same thing going on with their doctor giving the dose which is for PD. The reason for the difference in dose for RLS and the higher dose for PD, is they are both different conditions. They leaflet clearly states the highest dose for ropinerole as any leaflet does for any medication. That dose is set for a reason.

    I can only suggest that if you get told by the consultant that any med he suggests you take, you will only take the dose recommended in the leaflet. Altho, he may not like it, as "they" dont like being told how to treat you....but we have to look after ourselves and its our health that could suffer...

    Goo luck hun, someone else might have some suggestions for you on here.

  • Thanks again for the support and advice will listen to all before i go near this guy lol

  • Avosyl -I only wish I had some advice for you - I can only wish you good luck with the consultant, and hope you find a solution.

  • Thank you dangermouse the fact that i have people like you and Elisse along with all the other sufferers on this site backing me i know i will be alright.

  • I have found the website rlshelp.org to be very helpful in explaining augmentation. The doctor advises those who suffer augmentation to stop the drug and switch to another class of drugs e.g. Anti-convulsants, opiods..the withdrawal process from dopamines is awful

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