I have severe PLMS and have had an iron infusion (ferritin level remains good five months later), pregabalin 100mg (couldn't cope with the side effects) and ropinirole 1mg. I barely slept for the month I was on ropinirole and, from what I can find here and on the net generally, this isn't usual. So I wondered if anyone else had experienced this with dopamine agonists generally or just on ropinirole?
After the ropinirole my consultant gave me melatonin at my request, because I came across a recommendation for its use in patients who have only PLMS (not RLS) in best practice guidance issued by the British Medical Journal. It is not available over the counter here in the UK and is off-label for PLMS/RLS and doctors are very reluctant to prescribe it. (As an aside, my gp refused to give me a prescription to cover the two week gap between the consultant's prescription running out and my next appointment with her, although he quite happily gave me diazepam (vallium) to help me with the stress of not melatonin. The NHS has gone mad...but I just ordered melatonin online from the US anyway.)
The melatonin definitely helps me to get to sleep, reduces the amount of arousals, and makes it easier to fall back to sleep from arousals. However, it is not stopping the PLMS and my sleep remains unrefreshing and the pain in my legs is even worse than usual. I guess if I am spending more time asleep that equals more leg movements and more pain!
I suspect my consultant is going to want to try pramipexole or neupro patches next and I am really worried that they will have just the same effect as the ropinirole, ie wide awake all night with a period of fitful REM sleep just before the alarm clock goes off.
If anyone has any experience of insomnia with ropiniriole or other DAs I'd be really grateful to hear about how you overcome it what drugs might have worked better for you.
Thank you as always for all the knowledge and support there is on this forum x