Hi again Peter and Gus
Thanks for the rapid response. I've been back for stays in Southmead several times, either with or without meds.. All with similar effects, except one period when I was shaking so badly I had to be fed (which my wife now reminds me followed the infection of the first (Medtronic) device) so I only had the electrodes and wiring from ear onwards still in place between March and August.
'Right place' seems to vary, including calling it 'optimum position'. Which for me has not changed - even though it is now controlled by the 'more sophisticated' device from Boston Scientific) so the same electrode position is being used, although we should remember that we are talking about an area the size of a grain of rice. What they failed to tell me about the new device was that no MRI could be used with it, which would make repositioning difficult/impossible. Which reminds me that there is a significant disadvantage to being under general anaesthetic as opposed to local when finding the right place.
I was not expected to be able to bear the device being turned off for more than about 3 days, so imagine their surprise when I reported that I had turned off for a week, initially, then going on 6 weeks now, without great difference. I've still been afflicted by the eye closures, which can happen as many times as 150 in a day, and never fewer than 70 times, although presently waiting to see what happens after the latest injection of Botox into my lids.
As for medication, I have kept about the same, which is 5 Sinemet daily, including one slow release at night, 2 Trihex, 1 Pramipexol - the latter deals with restless legs, and good old Paracetamol. So I'm shocked to be told yours has increased by 50%. It would be interesting for you to discover how much longer you could be turned off...
In solidarity, Stephen