What a difference - and also how alike. Strange, GregD, that you felt no effect, I wish it helped you too. Maybe you should try it again, like Indigogo did.

Thank you Robert, for the speculations. Your Amantadine experience is probably also remarkable. If you were to stop taking it for a while, I think you would find what a difference it makes. For me the difference in balance is decidedly the most dramatic.

Your cruise sounds wonderful, Chris. But that is a lot of medicine, both of carb/lev and Amantadine. Have you tried to cut back instead of increasing? It is counter intuitive, and my doctor, like most doctors, is ready with the pen and prescription pad to add more pills and to increase the mgs., but our medicines can make us feel so much worse. Taking more carb/lev made me feel very debilitated and handicapped. Taking the smallest amounts possible of Requip, sinemet and Amantadine keeps me feeling rather well.

Lee, how did you ever manage to cut out the other PD meds. you must have been on before Amantadine? Its effect on you is very encouraging.

And Indigogo - I am green, or purple, with envy. I didn't stop taking Amantadine because it had stopped working for me, I stopped because of vanity! It makes my ankles purple....

birte

Birte - I hear you! The worse thing about taking Mirapex after I was first dx'd was the edema in my ankles and feet - it made one much larger than the other; I needed new shoes, but was too embarrassed to shop for them. My doctor said "wear support hose!" I cried, "I'm only 41!"

My ankles were a huge reason (and they were huge!) I titrated back on the agonists.

Today they are the only completely slim thing about me, and my feet fit into all of my old shoes again. This makes me very happy!

It's the small things in life sometime that are the most important.

Birte,
I was on 1200mg sinemet per day plus agonist and COMT inhibitor pre DBS.
The increasingly longer offs despite the meds plus dystonia and when on dyskinesias were giving me a prettly appalling quality of life so I had DBS 3 1/2 yrs ago with excellent results hence very little need for drugs now except the Amantadine for gait and balance.
Regards,
Lee

Birte,
If and when the time comes to try Amantadine again, I probably will. It was very early on when I tried it. It might work now. Who knows? I'm a firm believer in if it gives relief from the symptoms and the side effects aren't worse than the disease then it's worth a try.

GregD

Birte

When I stopped taking the amantadine my symptoms definately got worse and when I increased the Madopar (similar to Sinemet) I definately saw no improvement but I had not considered reducing my Ldopa intake. As you say for someone only dx just over 3 years I take an awful lot of it. I have just retired, early, from working as fatigue attacks were making being effective at work impossible, so I can risk a bit of further drug fiddling. Especially as I am in no hurry to acquire dyskinesia. So I think I will drop from 4 to 3x125mg and see what happens. Thanks for the advise. Nothing ventured nothing gained.

Chris

Chris
Drop down SLOWLY, please...very slowly... so you can find your plateau of comfort. I cut down Requip from 12 mg daily to 8.5, and it helped - I feel much better on less. And I cut down Amantadine from 200 mg to 100 mg, and it works just as well. Good luck.
And GregD - you will probably not mind the purple ankles too much, if you get them.
Winter is coming soon, so I can hide mine - in purple socks!!

birte

husband is taking amantadine 200 mgm/day since June 07. He initially attempted to titrate up to 300 mgm/day, but experienced some vision problems, thought to be due to the anticholinergic effect of amantadine. He finds the drug has reduced his tremor and makes movements smoother.

Olsen, you are the only person to mention Amantadine's effect on vision. My neurologist told me to have my eyes checked when I said I had strange visual reactions from Amantadine. I had just had my eyes examined at the time.
At 100 mg per day I see only very faint green and pink tracings in the bathroom sink and in the tub. At 200 mg per day I saw green and pink paisley lace patterns on white walls and ceilings. The patterns were very clear and visible, very symmetric and very beautiful - but disturbing all the same. I hope your husband's visual disturbance was pleasant enough too.

birte

Hi Birte, the vision problems my husband experienced were disconcerting--in his lateral vision, inanimate objects moved. Whenever he decreased the dosage of amantadine to 200 mgm/day again, the vision problems disappeared. The visual effects you experienced are more delicate, though I do not think my husband would know a lacey pattern if he encountered it. Madelyn