[BEMM]

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?

[reverett123]

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.

[BEMM]

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.

[GregD]

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

[RLSmi]

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

[Suffolkchris]

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

[made it up]

Dear Birte and Chris,
I started on Amantadine in the early days of PD about 12, 13 yrs ago and found it to be a fairly unremarkable drug in helping what was then, in retrospect fairly mild symptoms.
Now it's the only drug I take. It was recommenced 18 months ago.
No amount of changes in the settings for my neurostimulators seemed to be effective (although everything else is working well now) in helping gait and balance problems but by the third week of introducing what was by then 3 amantadine/ day my gait was fantastic and I haven't felt better in 14 yrs since being diagnosed with P.D.
Robert thankyou for your ideas on how Amantadine may work.
Regards,
Lee

[indigogo]

When my doctor prescribed amantadine exactly one year ago for tremor, she said that it works well for some; not at all for others, and that she never could tell in advance who would fall into which category. (I was dx'd in 1999; 8 1/2 years ago)

A year later, I fall into the "works well" column - it controls my tremor and I have not had the side effects of swollen feet and ankles and blotchy skin. I have taken 300 mg/day since the beginning. (I also take three 25/100 generic sinemets everyday).

Amantadine acts as a stimulant for me in a good way; I felt better overall when I started to take it. I, too, was having trouble sleeping, but if I don't take the amantadine, my hand tremor keeps me awake along with restless leg. So I started 2 mg of requip at bedtime and am sleeping well.

I remain otherwise healthy.

[BEMM]

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

[indigogo]

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.