I wonder why Amantadine works.
Does it do wonders for all PDers?
It must be significant that an ANTIVIRAL medicine is of more help to me than sinemet.

I got completely tired out on our little vacation a couple of weeks ago. I had painful dystonia, swollen feet, aching hips, no balance at all, and my feet wouldn't walk properly. Between meds. I froze, I fell and my tremor was uncontrollable.

"So this is how PD punishes those who try to do too much," I thought. "Rest, and it will start to get better."

But it didn't get better. Not until I thought I'd give Amantadine a try. I stopped taking it a few months ago and had been doing well without it.
And it works like a miracle drug. I have no more dystonia, no pain, no freezing, my feet work, my balance is fine, and my tremor is under control.
All the improvements occurred with the first pill, and I feel like myself again.

Does this mean that PD - my PD - may be a virus.....?
Why on earth does a flu medicine help this much?

No, there are other explanations. This is from Wikipedia so take it with a grain of salt:

"The mechanism of its antiparkinsonic effect is not fully understood, but it appears to be releasing dopamine from the nerve endings of the brain cells, together with stimulation of norepinephrine response. Furthermore, it appears to be a weak NMDA receptor antagonist and an anticholinergic.

The antiviral mechanism seems to be unrelated. The drug interferes with a viral protein, M2 (an ion channel), which is needed for the viral particle to become "uncoated" once it is taken inside the cell by endocytosis."

If I remember right, the cough syrup ingredient dextromethorphine is also an NMDA antagonist and of course acetylcholine being limited would purportedly help us. So there are several answers hinted at. You mentioned that you had dropped it for awhile. I wonder if it regained its effectiveness and would it be a good strategy to keep it for those "special" ocassions?

But... this doesn't rule out a virus of course. The German scientist Braak has mapped out a pattern of Lewy bodies that sure sounds like the pattern followed by the virus that produces polio.

Thank you for answering my questions. I think the German scientist Braak is on the right track. I think some, if not all, PD is caused by a virus.

Before I finally took Amantadine again, I'd tried to add another half pill to the three daily halves of 25/100 carb/lev I take. The extra sinemet made me have real OFFs for the first time in the 6 years I have taken PD meds. I began to feel like a junkie longing for my fix! The offs are also gone now I've stopped taking the extra half pill.

birte

Daily: 8.5 mg Requip, 1 1/2 25/100 carb.lev. 100 mg Amantadine, Curcumin, Flax seed oil, Fish oil, Vitamin C, Multi B complex, Calcium, Magnesium.

Hi Birte,
One of your questions was Does it do wonders for all PDers? In my case the answer is no. At one point, we tried to use Amantadine to help control tremors. It did absoulty nothing for me related to PD. However, I did not get a cold or sick during that time.

GregD

My experience with amantadine is pretty unremarkable. I started out with 200mg/day not long after dx, then cut back to my current 100mg/day because I thought it was causing foot and ankle swelling. For those who respond to it, I think it is most helpful with balance.
I read somewhere that some of its effects are apparently due to changes in cell and vesicle membrane properties, such as fluidity. That might prevent viruses from efficiently binding to cell surface receptors required for entry, accounting for its anti-viral properties.

Similar effects on membrane fluidity could enhance the release of dopamine and norepinephrine into nerve synapses by allowing the vesicles containing these neurotransmitters to fuse more readily with the cell membrane. Conversely, amantadine might be slowing down the re-uptake of DA and NE from the synaptic space.

Just having fun speculating!

Robert

Birte

I have recently had a similar experience to you.

I had been getting more and more tired with slightly worsening physical symptoms so I slowly removed 2x100mg Amantadine from my daily drug intake as I had been taking it for over two years and I read somewhere that it can lose it's effect after a short period but will sometimes work again if stopped for a period the reintroduced.

While I waited for my Consultant appointment i tried increasing Ldopa from 3x125 to 4x125 as dystonia in my left toes was driving me mad but absolutely no improvement on any front. After about 3 weeks I reintroduced Amantadine and amazingly got back to where I was symptom wise before all this started. If anything better than I was.

I then went on holiday (cruise) for two weeks and needed to try to stay up past my usual 10pm watershed to socialise so I increased to 3x100mg of Amantadine. Trouble was some nights I got very little sleep at all but it did the trick. Now I am back home I have gone back to 2x100mg a day.

My Consultant had given me a small dose of Mirapexin to add to the Ldopa and Amantadine but I have not had to introduce it afterall.

What a strange drug Amantadine is.

I know colds are not a virus and Amantadine is also an anti viral drug but I have also had only one very mild cold since I have been taking it.

Chris

Thanks Birte.I started Amantadine just 5 days ag and I too have noticed a significant improvement in my dyskenesia.However,the swelling thing concerns me.Having been brave enough to air my legs in shorts for the first time this year....BULGES...yikes yes BULGES were noticed on my knees.
Crumbs I thought. I`m growing an extra set of knee caps.
but now you have mentioned swellings...I will assume it is this rather than middle age that is the cause.
Incidentally...is the only way to stop the swelling...by stopping the druug altogether? I have been doing alot in the garden so might rest reduce this unsightly wobble?
x

Steffi, it is most peculiar what different drugs will do to different people. My feet began to swell when I stopped taking Amantadine, and until I took it again last week my feet looked as if they had been blown up like balloons, even the toes were swollen. Now the swelling is all but gone, and I have ankles again - they're going to start turning purple, but at least they're not swollen. It could be the Amantadine that's 'blowing up' your knees. I know Teresa stopped taking it because she was tired of not fitting shoes and not having a proper waist line while taking it.
I think both PD and the medicines we take can cause strange swellings and equally strange disappearances of swellings - they're shape-changing, from feet to knees to hips to waist line to hands to face. You never know what to expect.
It's only funny when the swelling has gone away again.

birte