Quote:
Originally Posted by aftermathman
try Stalevo as a constant release, you should be evening out the Ldopa rush as much as possible.
I know it is a personal thing to decide whether to have DBS but with the associated risks of brain surgery you have to be 110% sure. This form of communication is not ideal but you sure don't sound 110% sure to me.
Personally I would try every drug option, the fact that your Neuro hasn't even suggested CR drugs but has suggested major brain surgery staggers me. I wonder at peoples motivations sometimes and I would seek advice from another MDS.
No one will ever persuade me that DBS is anything other than a last resort.
Neil.
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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