I read all the posts, a lot contain information I don't understand,especially the various medications.
I take 3mgs of Ropinerole, which I have had to increase, the RLS has extended into my left hand side. I have read about augmentation, but am not sure if 3mgs is augmenting. I am seeing my GP tomorrow and would like to know what else I can take instead.
My GP does not seem to know very much about RLS and here in the UK it is very hard to see a doctor at all.
Thank you for your time
Hi i am hoping someone will reply to your post soon, and help you understand what the various meds are which help RLS. You do sound like you are starting with augmentation. I have been awake all night and some what brain dead today, so cant type all that you need to know. I am in the UK, and lucky to have no problem seeing a doctor, even tho they dont know as much as i do about RLS.
So sorry Elisse! I hope things improve quickly!
Hi Bayham,
If you go to the main RLS UK site, there is a video on Augmentation.
If you’ve had to increase your dose and it’s moved to other body parts it does sound like you have augmented. Ropinirole is ‘feeding the beast’ as Dr Early so aptly describes it.
The only way forward when that happens is to slowly reduce the dose by 0.5mg every 7-10 days.
It can be very difficult and most people will require the help of a strong painkiller ( eg tramadol ) to deal with the constant leg jerks and lack of sleep.
Once through withdrawal it can take weeks or even months for the RLS to settle down.
The RLS UK site lists meds that will help - benzodiazepines, alpha2delta ligands like pregabalin or Gabapentin and opioids like Targinact or OxyContin.
Print off the list and show your GP.
Also check you’re not taking OTC meds which can cause RLS like anti histamines.Ask for a blood test- serum ferritin should be above 100 ( ask for the actual figure).
You may find once off Ropinirole that your RLS settles to how it was before dopamine agonists and you can control it with diet or supplements.
If you can get a referral to a sleep clinic that is the best option in the UK.
Spend a few hours reading alll the posts on Augmentation- the more you educate yourself the more control you will have.
Let us know what your GP says.
This is the link for the meds list on the UK website.
Good advice joolsg...
Hi - thank you for your post. It is difficult here in UK - I understand, and we are passed from pillar to post - one doctors knowlege being so different from another. You didn`t say if you take any other meds i.e. Baclofen, codeine etc.
Finding a difinitive medication regime will be different for everyone - we are individuals and all our bodies react in different ways.
I take 1.25mg of ropinirole, baclofen, codeine, and paracetamol when needed. In the past I have tried gabapentin and pregabalin to no avail. Have you tried upping your iron - at least get it checked, as we as rls sufferers have a low `brain` iron. It is possibly the next thing for you.
Take care, enjoy the good bits of your life, thinking about you.
Good morning
I certainly suffered from Augmentation on Ropinirole (symptoms getting stronger, earlier in the day, so you just don't know how to cope) but the third time I was prepared for it and started the withdrawal, even though I was only on 1.5mg. I found the actual withdrawal relatively OK (did it very slowly over 10 weeks), with the help of Oxycodone and codeine. However, the transfer onto another medication is proving less easy.
I am in the UK. My GP was willing to listen and to learn from the information I took to him on Augmentation and how to cope with the withdrawal. Other members of this forum report that their GPs and even neurologists don't take kindly to suggestions from you, but have some confidence in knowing yourself better than they do. Go armed with as much information as you can.
There are other avenues of help. You may become aware of people talking on here about Dr Buchfuhrer in California. Even I emailed him a while ago when my new regime of meds wasn't working and got a very helpful reply back within 48 hours. If the time comes when you want to contact him, this is the website rlshelp.org (sorry I can't get it to load as a hyperlink) and on the bottom left of the page you will see a small yellow 'email' button. Do follow their advice on how to write the email!
I hope you begin to get somewhere with your GP today - do let us know how you get on.
RosieRow
I have sent a list of things that might help as a private message. Good Luck
Thank you Graham3196
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