Hi,

Thank you for the kind replies all. I should clarify that I am on CR! However,
for some reason, my initial neurologist started me on the lowest dosage at 25/100. I questioned right away that it should be more given the need for more bioavailabillty in an extended release formula. Neither neurologist has redressed this, and I think it's because my symptoms are so well controlled at the low dose.

I suggested Comtan and was told unequivocally I would get an extra 30 minutes tops with it. In my mind, not worth adding yet another pill to the mix.

My system is very sensitive to any agonist. I do get a withdrawal effect when it wears off and unless I dose right when I get that 'message'. It impacted my ability to teach until I figured out that the only thing that alleviated the room-spinning was to take a dose of Mirapex. Because of this phenemenon, I am very reluctant to ramp up the dosage of an agonist. I've been on 2.75 mg and can't fathom going up to 4.5 - I'd be sleeping all day or fighting to stay on the road.

For whatever reasons, meds are very suboptimal. I can't think of another clinically viable approach to extending the benefit of levodopa. Well, short of a pump infusion and then even that is being 'sold' as an end stage, wheel me out in a coffin or urn, treatment.

I guess any of us faced with this choice early on would be reluctant, but the potential benefits are beginning to outweigh risks for me. Note: this all serves to prove how woeful our treatment options are in the first place.

The stress from waking up each day not knowing when my relationship with levodopa will start to decline and in turn make it near impossible to maintain my livelihood- I am essentially on my own- obviously makes things worse for me. I know that if I didn't have this added pressure, my meds might actually work longer.

There is a Parkinson's Center around 2 hours from me that takes a more holistic approach to management. I wonder if I could get some of the stress in my personal life under control if it may make a significant difference in meds? It is certainly worth a try as a last gap stop measure.

Laura

Laura,
I cannot hope to tell you what meds would be best, or which way to go, but I have two comments to make.

The first is about your CR - this formulation of sinemet does not suit everybody. I was on it for ages, and only realised when I came off it that I was actually quite undermedicated. For those it works for it works really well, but for some like me our bodies/brains do not absord it properly. So the change to ordinary sinemet makes a huge difference.

The second is about Comtan. I would disagree about only getting half an hour extra benefit from this. Perhaps others can confirm this. I go a lot longer, and over time have found that my off times, with the exception of going overnight unmedicated and the usual morning issues, are less off than before. The difference between before Comtan and how I am now is huge...

If it were me I would try more options before resorting to surgery, it can take time, even a few years, to find a good meds regime and from the sounds of it your symptoms are controlled quite well, just don't last long enough...

Good luck with whatever choices you make.

Lindy