Effects from going off of amantadine - Cure Parkinson's

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Effects from going off of amantadine

mleec profile image
19 Replies

I am taking 2 tablets 25-100 C/L 4x per day and 1 tablet of 50-200 at bedtime. Back in August of this year doctor put me on amantadine starting with 2.5 ml. I was supposed to eventually get to 10 ml, but I never got past 7.5 because of the nausea. It seemed to help a little but I still continued to have cramping in my legs. I managed to keep a steady dose of 5ml liquid 2x per day. At that point doctor gave me 100 mg tablet , 1/2 a pill 2x per day. So now it’s December and the legs cramps, dry mouth, anxiety and increased depression is driving me crazy. I’ve been going to physical therapy since September, the tense machine, massage, dry needling, stretching, heat, cold, meditation, yoga, lift weights, etc. still leg cramps.

At this point I feel like the amantadine is not working so I told my doctor I was going off of it. He said that was fine but there was nothing else to try. Now that I went off the amantadine the leg tremors and cramps have come back with a vengeance. I am beyond frustrated. My doctor is a prominent movement disorder specialist but I don’t find him to be very progressive.

Advise pleas e and thank you!

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mleec
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19 Replies
johntPM profile image
johntPM

If you could give the times of the doses, it would help.

You write that you take "2 tablets 25-100 C/L 4x per day and 1 tablet of 50-200 at bedtime. Why is the final dose treated differently, 1x200 = 2x100?

I suspect that your problems are, at least in part, due to the interplay between the various doses during the day. This app will help let you "see" what is going on:

parkinsonsmeasurement.org/t...

You enter the time, the size, and the type of each dose and the app will draw a graph of your estimated, equivalent levodopa levels during the day.

John

mleec profile image
mleec in reply to johntPM

My times depend upon when I wake up. Usually around 6;00 am, but if I have not slept well my starting dose may be earlier or later. So, 6am, 10am, 2pm and 6pm. Over the summer my regular neurologist was not available and the on call doc thought that I should take the CR-50-100 dose to carry me through the night. When my regular neuro (movement disorder doc) came back he prescribed the amatadine. Wouldn't rytary make more sense and be more consistent?

Thank you for the link. I will check it out.

Margie

johntPM profile image
johntPM in reply to mleec

What problem are you trying to address? This may be something like I get dyskinesia between 1900 and 2000. Or, I can't sleep between 0200 and 0400. Or, I move very slowly between 0900 and 1000.

It can't be assumed that doubling the dose will double the duration of effectiveness.

mleec profile image
mleec in reply to johntPM

I agree about doubling the dose before bedtime. I don’t know why it was doubled but that it is a controlled release tablet. Initially, back in August, I was trying to address the leg cramps. It was like having constant charley horses. It was never under complete control with the amantadine so with the side effects of the amantadine I went off of it.

So at the moment I am still trying to fix the leg cramps, along with the increased leg tremors and rigidity. My overall “on” has decreased to about 45 minutes in a 4 hour period.

park_bear profile image
park_bear in reply to mleec

More is not necessarily better. During which part(s) of the four hour cycle do you experience your on time? When is rigidity at its worst?

Rytary can be better. If you try it, it is important to space out the doses to avoid stacking.

mleec profile image
mleec in reply to park_bear

The past week has been very inconsistent so it is difficult to say for sure. Lately , it’s about an hour in, but I might still have some tremors or rigidity. About 2 to 2.5 hours in the leg tremors start and rigidity comes back more severely.

park_bear profile image
park_bear in reply to mleec

I do not know what to suggest by way of medication. Your amantadine results suggest too much levodopa, whereas your symptom pattern suggests too little. Entacapone to increase on-time is a possibility.

Some alternative interventions that have helped my condition. Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other:

• High-dose thiamine. Dosing instructions and other information at the links. Many people with Parkinson's have benefited from this treatment. Allow four months for full effect:

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

facebook.com/groups/parkins...

A good source of thiamine HCl is here: vitacost.com/vitacost-vitam...

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

• Qigong. My story here: healthunlocked.com/cure-par...

In addition, regular exercise is very important.

Smittybear7 profile image
Smittybear7 in reply to johntPM

Could you do that for me?

johntPM profile image
johntPM in reply to Smittybear7

I'll be happy to. But the model requires the right data for each dose: Time, hours and minutes, name, dose. And to set it in context you need to report what the problem with the current regimen is. A short medical history is also useful.

jeffmayer profile image
jeffmayer

Have you tried a static bike or a treadmill

mleec profile image
mleec in reply to jeffmayer

Yes. In fact I bought a recumbent bike about 4 years ago. I use it almost every day and sometimes 2x a day. I walk a lot too. Thank you for the suggestion. 😊

TL500 profile image
TL500 in reply to mleec

Not sure if a vibration machine help? Anyone?

Smittybear7 profile image
Smittybear7

Try getting your magnesium level check and look into B1 therapy. Hopefully that'll help. Magnesium seems to help me and also the drug called Baclofen which I think is like a muscle relaxer. I take it 5 mg twice a day. I also take Magnesium Complex at night.

mleec profile image
mleec in reply to Smittybear7

I do take a magnesium in the evening. I have intermittently taken B1 with out much success. I am restarting and will try to be more consistent with the B1.

I do wonder if the Zoloft (generic version) is interfering in any way. I have been taking that for about 4 years.

Thank you for the suggestions. 😊

TL500 profile image
TL500

I have same problem getting a right dose for B1.Have you read Daphne Bryan 's book "Parkinson's and the B1 Therapy"? and try B1 again.

It seems to be easier to understand and to follow.

mleec profile image
mleec in reply to TL500

I will purchase her book. Thank you for your help. 😊

TL500 profile image
TL500 in reply to mleec

Hope it helps.

Astra7 profile image
Astra7

have you tried CBD oil and melatonin?

mleec profile image
mleec in reply to Astra7

I use melatonin on occasion and tried cbd gummies. Melatonin helps a little. Cbd can knock me out but I have not investigated that option in great detail. Thanks for the advice.

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