Quote:
Originally Posted by soccertese
that's an interesting observation on stalevo niggs, i added ENTACAPONE to my 150mg- 200mg sinemet only drug regime, with the goal of getting at least 3 hours of on time but quit after 4 days because i was feeling much worse in kind of a hard to describe way, more nausea, fatigue. i did get maybe 30min. of more on time but it wasn't "quality" on time. i mentioned that i was dropping the entacapone to my neuro and he said ok, no encouragement to give it more time but i think he feels i'm ready for DBS and nothing i do in terms of adjusting drugs is going to make much difference. i might try entacapone again based on your experience. i've given up on everything else i've tried if i felt worse in the first few days. amantadine was my worse experience, couldn't sleep and had no appetite,
has DBS been brought up to you, just curious when the brits think it is time.
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Hi Soccertese
No mention of D.B.S, I think it's very much a last resort here in the UK. I'm in two minds re my Neuro, whether he's mad or a genius ! I pushed the care team to give a ball park figure for this latest adjustment. Guess what, they have a rule of thumb system which for introducing entacapone is give it a minimum of 4-6 weeks before they can say yes/no.
It is hard going mate but personally I would rather tough it out for 6 weeks than face surgery that has it's own problems.
Just as a point of interest, I have had, like you significant side effects with ropinirole. I now know it takes me two months + to settle a requip xl adj, generic are to be avoided and most of that time I'm feeling 'more' parkinsonian and constantly saying "this can't be right". But I'm wrong and now I'm actually getting somewhere.
Finally, I'm 7y post diagnosis and on 150mg 3 x daily + 12mg requip xl. I asked about lower more frequent dosing and was told not needed,hence mad or genius.
So far he's right and I'm so glad I weathered the storm.
Nigel