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Old 01-12-2010, 12:20 PM
Fiona Fiona is offline
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Join Date: Oct 2006
Posts: 492
15 yr Member
Fiona Fiona is offline
Member
 
Join Date: Oct 2006
Posts: 492
15 yr Member
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Well, I spent some years on a very high dosage of Mirapex. I have told this story before, but my behavior completely changed. I started staying up all night doing wacky stuff, lost my job, went into unbelievable debt -my life completely disintegrated to the point where I dislocated my hip and didn't know it, and wound up in the hospital for over a month with pain so acute I couldn't move at all. I am amazed I'm still alive really. And it was worse than I'm telling it, too.

All of these behaviors COMPLETELY went away when I stopped taking the agonists. There is no way they are part of advancing disease, at least from my perspective. But see, that's how they use fear and a patient's self-doubt to corral us into not questioning the treatment. And I agree with you, Laura, I'm trying to keep the meds as simple as I can. Because when the smith hits the fan, and you're struggling with side effects or interactions or withdrawals because let's say you're in the hospital and the nurses don't believe your medication schedule, who is going to be there to help you out then? I spent hours writhing in absolute dystonic agony from enforced medication withdrawal, with a doctor watching the whole time and smirking because she thought I was faking. I was so desparate I got my husband to dial the emergency room in the SAME HOSPITAL I WAS IN to try to get help. When he finally managed to run to the corner drug store and get some Bendaryl in my mouth to at least stop the intense cramping, and my limbs suddenly softened and relaxed, you should have seen the look on that doctor's face when she saw I had been for real.

BUT beware, if one is going to stop the agonists, you have to do it glacially slowly ...very, very, very gradually. And if you can get help, do so. No one helped me. And when the Neupro patch was suddenly found defective and pulled from the American market overnight, was there ANYONE to assist people with that? The company told people to take three days to titrate off it. I'm sure somebody died from that.

BUT Imad, thanks for posting that. I am so happy that the perils of the drug therapy itself are finally starting to be recognized. And for the record, now that I am off agonists, I have probably less off periods and dystonia. And I may be still struggling with the depression, but I was somewhat crazy and irrational while on Mirapex (and this is just me and my description of my own state of mind), and I am not that now.
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"Thanks for this!" says:
highlake (11-11-2012)