Amantadine - first time user - haven’t tr... - Cure Parkinson's

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Amantadine - first time user - haven’t tried yet

MissRita profile image
40 Replies

Hello all!

Has anyone used this medication at all? Curious about reactions positive and negative. Thanks so much!

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MissRita profile image
MissRita
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40 Replies
ParlePark profile image
ParlePark

I did for a few years. At first stopped tremors. As time went on stopped being effective. I experienced C quite a bit of insomnia while on it. I’m on C/l now.

MissRita profile image
MissRita in reply toParlePark

Thank you! Almost sounds like an ADHD medication which is a stimulant to counteract a persons hyperactivity.

ParlePark profile image
ParlePark in reply toMissRita

At first it really worked well on tremors. Also experienced a little ankle swelling. Not a big deal though. The insomnia stopped when I quit Am.

MissRita profile image
MissRita in reply toParlePark

Ok great thx!

ParlePark profile image
ParlePark in reply toMissRita

Did not experience any other side effects. Just ankle swelling and insomnia. Just couldn’t get to sleep and when I did didn’t stay asleep.

MissRita profile image
MissRita in reply toParlePark

Ah good to know! I’ll keep you posted tonight!

glenandgerry profile image
glenandgerry

My hubby swapped to Amantadine after several years on Sinemet. Amantadine seems to work for him with no side effects which is unusual as he is usually very sensitive to medications and doesn't tolerate many of them well at all.

in reply toglenandgerry

Does amantadine help with gait issues?

MissRita profile image
MissRita in reply to

I was given it for tremor, but it made my tremor worse until I look a little Mucuna and I feel better now. I do not have gait issues or movement issues. Mine is all tremor currently. I was given C/L which made me feel drugged so I am trying to figure a better combination at the moment.

Janx profile image
Janx in reply toMissRita

What is CL?

glenandgerry profile image
glenandgerry in reply toJanx

Carbidopa/Levodopa

glenandgerry profile image
glenandgerry in reply to

I don’t think so but it is hard to say as hubby was diagnosed nearly 16 years ago. He has arthritis for which he’s had two knee joint replacements, spinal stenosis (for which he had a back op 18 months ago which wasn’t successful), one leg is slightly longer than the other, he has bad feet - hammer toes, bunions, callouses, etc.......all of which make walking difficult so he has an odd gait, but how much is to do with Parkinson’s, and how much to do with his other ailments is difficult to determine.

SGlass profile image
SGlass

I take 2mg twice a day to combat fatigue. I also take Sinemet. To much and anxiety kicks in. I have to balance Amantadine/Sinemet/ with exercise amount. Really works for me against fatigue and keeping tremors low. Been on this regiment about a year and a half.

Danska profile image
Danska in reply toSGlass

I was just prescribed Amadatine, but haven't started it yet. You said you take 2mg twice a day. My script is for 100 mg. Confused about such a large discrepancy in amount- don't know much about it, but I have alot of fatigue. Any thoughts?

SGlass profile image
SGlass in reply toDanska

Danska, Sorry forgot a "0". I take 20mg twice a day to combat fatigue. That is still a very low dose. Dr tried to get me to 100mg twice a day in 50mg steps but anxiety kicked in big time so backed down from the 50mg to 20mg and for me that appears to be a good place. I appear to be one who is very sensitive to it. Because my dose is so low I get it as a syrup with concentration of 50mg/5ml then use oral syringe to measure dose. Before it all I did was exercise and nap and now I hardly have to take a nap. Be aware that it has a 30 hour half life in your system so changing dosage will take a while to stabilize. Hope that helps. Good luck! I sincerely hope it works for you as it really has for me.

Danska profile image
Danska in reply toSGlass

Thanks for clarification- where do you get the syrup and how much does it cost? Many thanks.

SGlass profile image
SGlass in reply toDanska

I get at my drug store with Dr prescription as syrup. They order it in the 50mg/5ml strength. Uninsured cost is 71 USD for 450ml.

Danska profile image
Danska in reply toSGlass

Appreciate your feedback- thanks!

blogger_7 profile image
blogger_7 in reply toDanska

I also take Amantadine. 100 mg. X 2. The doctor told me, maybe it will slow the drooling. I still drool, but I love the way It gave me more energy than I have had for years. The doctor told me to take two capsules a day, but to not take it too late in the day. I take one when I wake up in the morning, and am able to get up in about half an hour. I set the alarm for 2:45 to remind me to take the second capsule. My husband doesn't go to bed until 12:30 or 1 am,,, So I am fine and ready to go to bed when he is. But you might want to take it in the morning until you know. Each of us are so different. I don't have the typical tremors.. mine are action tremors and c / L makes me throw up, so I do not take it. Sue

MissRita profile image
MissRita in reply toblogger_7

Boy does it ever! It’s actually widely used for ADHD which is perfect for me because I have that and that is helping it as well. My focus is incredibly better at this moment. I was also worried about the insomnia but I started taking it two days ago and I went right to bed no problems.

Zella23 profile image
Zella23

Husbands been taking it for a year to help with dyskinesia- no side effects so far.

jocelyng profile image
jocelyng

I was on Gocovri (the CR version of Amantadine) for several months. I went that route because it’s once a day. Huge pain to get the prescription, but that was fine once we got it sorted out. It worked great except when the side effects hit. I could have with the marbling of my arms and legs even though it looked like someone took a red marker and scribbled on them. The biggest issue was the ankle swelling. I didn’t worry about it in the summer and early fall when I didn’t wear socks and lived in slip-on shoes. By October, it turned out that I couldn’t wear socks above the ankles or boots. Switched to Artane which I take at breakfast and lunch. No side effects.

Godiv profile image
Godiv in reply tojocelyng

Jocelyn, that’s interesting because I was taking gocavri l. I had to go to the ER Monday night, Because my ankle was swollen and my regular doctor was afraid it was a blood clot which it wasn’t. So with my neurologist blessing I quit the drug, but my ankle is still popping up. I wonder how long it stays in your system? Do you remember if your issue stopped pretty quickly or took a while? Thanks so much!

jocelyng profile image
jocelyng in reply toGodiv

It took a while. IIRC, the marbling on my arms took over a month to go away. I feel like the swelling was shorter but definitely at least a week or two. Sorry I can’t be more specific.

Godiv profile image
Godiv in reply tojocelyng

That helps a lot thank you! I was expecting it to be better almost immediately so I couldn’t figure out why I still had a fat ankle LOL. So thank you. You actually did help a lot.

jeffmayer profile image
jeffmayer

Been on it a year no side effects I am aware of only positive

MissRita profile image
MissRita

UPDATE!

Well I took one pill last night and slept right through the night and no insomnia and no swelling of the feet.. As a matter fact it actually makes the tremor somewhat worse before it got better. So this is so crazy to me. After I took it last night the tremor got worse before it got better which in retrospect when I was taking MUCUNA that does the same thing too when I first take it because I start to tremor a little bit until I start to calm down. As I lay here this morning the tremor is back into full swing. I am going to take another one this morning and I shall see what will happen. Onward and upward!

Trixiedee profile image
Trixiedee

When I presented my prescription for it my pharmacist warned me that it was a very old drug and rarely used any more. He wouldn’t say exactly what was wrong with it but I took one and felt weird and spaced out and incapable of driving so I didn’t take it again. But some people tolerate it well.

MissRita profile image
MissRita in reply toTrixiedee

Yeah unfortunately it’s making my triemors much much worse.

Janx profile image
Janx in reply toMissRita

Any advice on what medication works better for tremors? Thanks

ParlePark profile image
ParlePark in reply toJanx

Amantadine worked great for tremors for a few years. But gave me horrible insomnia.

I’m on C/L now but not as effective for tremors, not like Amantadine was

MissRita profile image
MissRita

Update 2

Well it looks like I probably can’t take this anymore because I am tremoring like nobody’s business and it’s all resting tremors. Back to the drawing board.

Phero profile image
Phero

If at first you don't succeed, try, try, again!

EnterTheDragon profile image
EnterTheDragon

I tried Amantadine. Had severe reaction within two hours after taking one pill.

Racing/ pounding heart and trouble breathing as my chest was tightening up.

Subsided , but almost called 911.

Husbandsupporter profile image
Husbandsupporter

My husband is taking it to help with the Dyskensia that was caused by increasing the Sinemet past his "toleration" level. We've cut back on Sinemet and for the most part, the Dyskensia is gone. Amatadine didn't help, didn't have any other adverse affect like constipation for him. He'll probably stop it soon now that the reason for him taking it is pretty much gone. I've read what effects that drug can have. Each person is different

Kia17 profile image
Kia17

MissRita

Do you mind to share with us your diet?

How much protein and when do you take? Do you take any supplements like Magnesium? Sugar intake ? leafy green vegetables?

Gluten? Its been proved that people with Hashimoto's disease may have gluten sensitivity.

MissRita profile image
MissRita in reply toKia17

My diet varies and so I try to eat the best I can. I’m gluten free to a point but sometimes it’s hard. My digestion is slow so I’m careful as to how much I eat and when.

Kia17 profile image
Kia17 in reply toMissRita

In my experience there is no differences between less or more gluten. Even gluten from a cupcake will take a month to be cleaned from the body.

Leafy green vegetables help me amazingly.

Janx profile image
Janx

Amantadine can cause you to retain water and you also can have troubles of not sleeping.

MissRita profile image
MissRita in reply toJanx

I have heard that but oddly enough I don’t have problems with either.

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