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Hi, Gary,
Pardon me for copying/pasting your post, but I wanted to respond to some of the things you said.
– I have been on extended release carbi/levo for close to two years, was on Rytary before that (a brand name extended release). For me personally I was finding no difference in benefit between the two (Rytary is way more expensive as you know). Being on extended release of either kind was somewhat helpful over ‘regular’ carbi/levo. Modest change in dosage, more or less, doesn’t seem to affect level or frequency of my akathisia in any case.
I’ve been on Rytary for several months now (and oh gawd is it expensive now that I’m in/out of the Medicare donut hole). It took a while to get my dosage right, but now that it is, I find it significantly better than C/L extended released because it lasts much longer in my system and my “off” periods with akathisia are fewer. They aren’t gone, though. I still get breakthrough akathisia when the meds are wearing off or haven’t kicked in yet. That makes me think the akathisia is related to the PD, not the meds. The meds only help to keep it at bay.
– I believe my skin sensitivity to cold (air, water) is part of the overall akathisia condition because it can set off the akathisia; there may be other aspects of PD that cause the skin sensitivity, too, I don’t know
I do have an extreme sensitivity to cold (weather, air, water), and the cold can definitely set off my akathisia.
– On the other hand, I came across a study once that said about 30% of people with PD have it to some degree. From which I conclude it’s rather mild, except for a few of us.
Yes, it seems that we are the chosen few. 😉 On the upside, at least we now know that we aren’t alone!