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Topic Amantadine Go to previous topic Go to next topic Go to higher level

By Dixie74 On 2014.04.28 09:23
My husband has been on Amantadine three per day along with his carbo-levo for three years and now they want him to go off since the DBS surgery. He did it gradually and yesterday he was totally off and by last night he couldn't get off a chair, in and out of bed, legs hurt and couldn't sleep. Finally at midnight he took a amantadine and went to sleep in 1/2 hour. We trust Mayo but some changes are too fast and aggressive and yet they say come back in 4 months etc. Will give them a call today. Things are not as smooth after the DBS as the book promises and yet he does feel so much better over all. Ug!

By jcoff012 On 2014.04.28 18:36
This is so interesting to me...When Carl was first dx, they put him on Amantadine and it literally did nothing...I mean, nothing...His new doctor asked him about it, but that's all he did...ask. Please let us know how it goes for your husband...PD is such an strange disease..no one size fits all, that's for sure.
Jane

By Dixie74 On 2014.04.29 07:55
I called Mayo yesterday and they said to go back on Amadadine three times a day. The MD asked if we wanted her to put thru a request to start the evaluation for DBS on the other side and we said yes because the window of time might close. They had said before to come back in August. That long doesn't work for me!! We have their attention so I imagine we will be going up in May....a two hour easy trip. He is better since he added back in the med but I see that we have entered into a new PD stage. Our support line here in a retirement center is good and I have things in line but having kids in Georgia and NY is far from Iowa. With PD you know another stage is on the way. There are seven other people in this retirement community living close to us and they are all at different stages, much worse than my husband.

By parkinit On 2014.04.29 18:30
Reduction of meds is normal with someone who has had DBS, but they should be aggressively monitoring changes. That is the scary part, when changes are made, it can be for the better but just as equally can be for the worse. Close monitoring is a MUST, but seems to not be as high a priority as it should be with MDs.

We've been there with DBS good and bad. Hang in there!


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