Levodopa =? Dyskinesia: I take levodopa (... - Cure Parkinson's

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Levodopa =? Dyskinesia

b-erec profile image
65 Replies

I take levodopa (2 pills x 200 mg throughout the day) to turn me on. Also it helps to reduce my arm's tremor. It does help, but also brings involuntary movements, even hyperactivity I'd say. Mostly it's my upper body (like I'm dancing or something). And it seems as such a waste of life energy. Is there anything can be done with it? Thank you, mates.

P.S. Besides levodopa I take 2g of B1 HLC daily. I live quite an active farmer life and constantly involved into some sort of physical activity.

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b-erec profile image
b-erec
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65 Replies
Juliegrace profile image
Juliegrace

What dose do you take and how often?

b-erec profile image
b-erec in reply to Juliegrace

200 mg twice a day

Juliegrace profile image
Juliegrace in reply to b-erec

A more specific time schedule would be helpful. Have you considered trying to take 100mg four times a day?

b-erec profile image
b-erec in reply to Juliegrace

Here's my approximate schedule (well it's actually 500 mg).

5 am - 200 mg

11 am - 100 mg

2 pm - 100 mg

6 pm - 100 mg

Juliegrace profile image
Juliegrace in reply to b-erec

Are you tuned into when it starts, when it is the worst and when it eases off? Have you tried amantadine or anything else pharmaceutical? Is it a recent occurrence or something that’s been ongoing for a while?

b-erec profile image
b-erec in reply to Juliegrace

No, it's not something recent. I guess I got this experience from the first days I started taking levodopa two yrs ago. Before levodopa I tried amantadine, but it had no noticeable effect on me at that time. As far as when is the peak and when is the ease, it's hard to say, but I think the peak of dyskinesia comes +/- to the middle of period between levodopa's intake.

Juliegrace profile image
Juliegrace in reply to b-erec

It sounds like you are one of the unfortunate 15% (like me) who suffers from dyskinesia almost immediately. Amantadine is used to lessen levodopa induced dyskinesia. It didn’t work for me, but there are several members here who take it successfully. It might be worth trying again as an adjunct to your levodopa. For me, after a while I found B1 was making my dyskinesia worse. Pretty much everything shown to increase on time makes my dyskinesia worse.

As Marc suggested, have you tried a controlled release version of levodopa. It might also be worth trying.

Best of luck.

Smittybear7 profile image
Smittybear7 in reply to Juliegrace

How safe is amantadine? Does it work with C/L. What are the side effects? Are you still able to drive with those medications? I have no problem with the 3pills a day of c/l and 5mg of baclofen and driving. Thanks for your help.

Juliegrace profile image
Juliegrace in reply to Smittybear7

Amantadine did not work for me. As for its safety profile, I suggest you do an internet search.

Smittybear7 profile image
Smittybear7 in reply to Juliegrace

Thanks

Hikoi profile image
Hikoi in reply to b-erec

That is a rather unusual schedule. You have gaps of 6hrs, 3hrs and 4 hrs then 11 hours.

in reply to b-erec

Was one tablet 8x a day. No dyskinesia. To reach the desired effect, two tablets 8x a day. No dyskinesia.

MBAnderson profile image
MBAnderson

Some people think levodopa induced dyskinesia occurs when levodopa is at it's highest level. Others, myself included, believe levodopa induced dyskinesia can occur when the concentration is on its way up, peaking, or on its way down. As I see it, there are three options. Try a continuous or extended release levodopa, try adding another drug such as Amantadine, or make the trade-off decision, that is, how much benefit from levodopa versus how much discomfort from dyskinesia, which amounts to the decision as to whether or not to reduce the dose of levodopa.

I have no idea which is preferable for you, nor does anyone else. Try each and see which one you like best.

Pa-zzi69 profile image
Pa-zzi69 in reply to MBAnderson

THANK YOU Marc A. for the clear expression of your sound reasoning !

Smittybear7 profile image
Smittybear7 in reply to MBAnderson

Iam taking 1 c/l every 8 hours and developed some involuntary movements when they increased the c/l by 1/2 pill in the am .Trying to determine if it's too much or too little c/l.I started on medication in October. Which would you try first? cut back on the c/l, to 1/2 pills every 4hrs. Try controlled release,

add amantadine to current 3pills a day

How long will it take to see if helps?

Is it safe to drive with amantadine? I am driving with no problem on 3 c/l( 25-100) a day, 1 every 8hrs and 5mg baclofen twice a day.

Thanks for your help.

MBAnderson profile image
MBAnderson in reply to Smittybear7

I am not qualified to say what you should do. (Above, I meant only to delineate his/her options.)

My understanding is that dyskinesia can occur when levodopa dose is ascending, peaking, or descending. If you are confident about the connection between the increased dose and the involuntary movements, it seems as though the increased dose is responsible. Receiving too little levodopa would not cause dyskinesia - I suspect.

The only thing I can suggest is that you try each option. No one knows whether or not you would be better off with controlled release or if you should add amantadine. You have to try it and see.

Driving may be safe for some and not others on amantadine.

Sorry, I wish I could be more helpful.

Smittybear7 profile image
Smittybear7 in reply to MBAnderson

Thanks for your response. How long would you suggest I try each option?

MBAnderson profile image
MBAnderson in reply to Smittybear7

I would expect you would know within 3 days on reducing the dose and adding amantadine options. It may well take 2 to 3 weeks to be sure you like the controlled-release better.

Smittybear7 profile image
Smittybear7 in reply to MBAnderson

The neurologist suggested cutting the Carbidopa levodopa in half and taking it every 4 hours instead of once every 8 hours. I'm a little concerned that cutting 2 half and going every 4 hours might exacerbate the original problem. The other suggestion was to try amantadine. When I read about the side effects I'm a little afraid to try it. I currently have no problem driving my car anyone taking amantadine still able to drive?

MBAnderson profile image
MBAnderson in reply to Smittybear7

Sorry, I cannot help you. I do not take amantadine.

Smittybear7 profile image
Smittybear7 in reply to MBAnderson

Thanks for responding

johntPM profile image
johntPM

Yes, Marc is right: at the end of the day, this is an experimental science. Try it and see, but talk to your doctor first.

But, we may be informed by the levodopa induced dyskinesia theory. I think the reason that amantadine is used for dyskinesia follows from its long half life (847 minutes, cf C/L 81 minutes). C/L gives a graph with steep spikes, amantadine's graph is much smoother. You may be able to replace some C/L with some amantadine, in a 1:1 ratio to maintain the levodopa equivalent daily dose. This will reduce the maximum levodopa concentrations, and reduce spikes in the graph. And, hopefully, you won't cross the LID threshold, while still being "on".

Pa-zzi69 profile image
Pa-zzi69 in reply to johntPM

LID = Levodopa-Induced Dyskinesia

Smittybear7 profile image
Smittybear7 in reply to johntPM

Is amantadine safe to use? What side effects? Can you drive a car while taking both? Thanks

Smittybear7 profile image
Smittybear7 in reply to johntPM

Is it safe to drive if taking amantadine?

Juliegrace profile image
Juliegrace in reply to Smittybear7

You need to address questions like that to your doctor.

MBAnderson profile image
MBAnderson in reply to Smittybear7

I totally agree with Julie.

chartist profile image
chartist in reply to Smittybear7

Take this with you when you discuss Amantadine with your doctor and have him go over it with you.

drugs.com/sfx/amantadine-si...

Art

Smittybear7 profile image
Smittybear7 in reply to chartist

Thanks

suggest you consider Gastrodia elata to help alleviate your dyskinesia

some PD research on it:

bmccomplementmedtherapies.b...

Juliegrace profile image
Juliegrace in reply to

Have you or do you know of anyone who has tried it?

in reply to Juliegrace

I have tried it for PD, but not for dyskinesia, as I don't have that symptom at the moment. All we have to go on is the research, but it does look compelling. No side effect issues when I tried it.

Astra7 profile image
Astra7

Have you ever been given azilect or praximole? Maybe ask your neurologist.

Intrepid200 profile image
Intrepid200

Try Gocovri working for me

Intrepid200 profile image
Intrepid200

Follow up.I had those same problems until recently when my Nuerologist told me about Gocovri 137MG Cap ER its Amantadine Hci

At first I was hesitant about adding another pill to my daily regiment but am glad I did

I swallowed two capsules at bedtime every 24 hours

Hardly observing much Off Time.

Hopefully its available in your Country

Juliegrace profile image
Juliegrace in reply to Intrepid200

Did regular amantadine work for you at some point?

Intrepid200 profile image
Intrepid200 in reply to Juliegrace

Yes

b-erec profile image
b-erec in reply to Intrepid200

So you take levodopa during the day and Gocovri (Amantadine) 2 x 137 mg at night. Is that correct schedule / dosage?

For some reason I thought that one is supposed to take Amantadine together with Levodopa as long as it is used to lessen levodopa induced dyskinesia.

Intrepid200 profile image
Intrepid200 in reply to b-erec

I'm 2012 I was diagnosed with PD the very first medicine my Nuerologist prescribed was Alizect and Amandatine unfortunately I woke up with a serious pain in my ankles. Come to find out that Amandatine was the reason.That forced me to stop talking it ,about 7 months ago out of nowhere I shaking badly and Nuerologist prescribed Amandatine I took a few no use all it was offering me was Hallicunation.

And so I was given Hci 1tablet nightly for 7 nights and 2 thereafter nightly no complaints

JohnPepper profile image
JohnPepper

Your unwanted movements are caused by too much levodopa. It is called Dyskinesia. The more levodopa you take the worse it gets.

How do you overcome this? There is only one way I know and that is Walking.

If you would like to know how I overcame most of my Pd movement symptoms then send me your email address and I will send you my videos and information on how to do this, at no cost!

kevowpd profile image
kevowpd in reply to JohnPepper

How many people have reported to you that they have overcome their dyskinesia with walking?

Resano profile image
Resano in reply to kevowpd

I am afraid John is right. There is an 81-year old meds-free PwP (Psychiatrist with Parkinson's) who has been inspired by his method.

His name is Dr Chris Hageseth:

youtu.be/AG04uIeQVz4

kevowpd profile image
kevowpd in reply to Resano

If he is med-free, what was causing the dyskinesia?

I note he has another video where he does HIIT, which john of course would advise him not to do.

Resano profile image
Resano in reply to kevowpd

As John, he realised later that high-intensity training was not as helpful as fast conscious walking and yoga also.

Resano profile image
Resano in reply to Resano

Regarding dyskinesia, he discontinued meds after he tried them out, several times, according to what he says in one of his talks.

Hikoi profile image
Hikoi in reply to Resano

Thanks for posting the video of Chris H. Can you tell me when it was made? I cant find anything recent, all 2017 or earlier. I’d be interested to know where it says fast walking is better than high intensity exercise. Perhaps he is just getting old :). He certainly has a benign version of PD.

Resano profile image
Resano in reply to Hikoi

Given the short periods he has referred to, one can almost say he hasn't used meds at all. I don't know the date of his GPS Conscious Walking (consciousness is the key, more than speed) action shot but everything was detailed in a great site he used to have: shiftpdmindset or sweatingout or something like that. I'll try to find again the information. In the meantime you may check this one (interview):

listennotes.com/podcasts/pa...

PS: at 81, and med-free, he is not so "old"...

Hikoi profile image
Hikoi in reply to Resano

At least he has PD, (he has a masked face and lopsided smile and one sided resting tremor) whereas John Pepper has essential tremor which is why he is well.

in reply to Hikoi

Agreed

gomelgo profile image
gomelgo in reply to Resano

Somehow while checking on this I got this video which I learned SO MUCH from. chriskresser.com/a-function...

Beckina51 profile image
Beckina51 in reply to JohnPepper

John

.I suffer tremendously with dyskinesia. I would love your information sent to me.

Thank you

Rebecca

b-erec profile image
b-erec in reply to JohnPepper

Hey John. I read your story and saw your videos on youtube. You do a really great job! But as I mentioned, being a farmer I live quite an active life involved lots of walking and many other types of physical activities. In fact, I really feel better after active walking. But it doesn't seem enough.

JohnPepper profile image
JohnPepper in reply to b-erec

In order to repair the brain, the only way I know is to do SUSTAINED FAST WALKING FOR ONE HOUR EVERY SECOND DAY. Mere exercise of any kind, unless it does the same as stated here, will not work.

I was going to the gym for 90 minutes, six days of the week, in addition to the normal exercise carried out in order to do my job. That did not work!

As it costs nothing and nobody but you is benefitting in any way from you doing it, try doing it exactly as I say.

kevowpd profile image
kevowpd in reply to JohnPepper

Please stop spreading misinformation. There is absolutely no evidence that "SUSTAINED FAST WALKING FOR ONE HOUR EVERY SECOND DAY" will 'repair the brain', nor that all other exercise is inferior to 'fast walking'.

JohnPepper profile image
JohnPepper in reply to kevowpd

Well! You appear to be well-informed.

Have you spoken to anybody who has done the fast walking? If you haven't then how do you know it doesn't work?

I have hundreds of emails from people who have turned their lives around, but like others, you are not interested in anything that is different!

AS it costs nothing to do and nobody gains a cent from you doing it, then where is the PROBLEM?

The only problem I se is the pharmaceutical industry Neurologists losing customers. Is that a bad thing?

If you are correct that what I am telling people does not work, then what reason would I have to go to all, this trouble if it does not work?

kevowpd profile image
kevowpd in reply to JohnPepper

The PROBLEM (as you put it) is that you actively discourage people from doing any or all other exercise. Why do you do it? Becuase you claim that your time in the gym didnt help? So what? Even if we accept your version of events as accurate, why do you think everyone should do exactly what you did?

"Mere exercise of any kind, unless it does the same as stated here, will not work"

JohnPepper profile image
JohnPepper in reply to kevowpd

Do you have any experience or knowledge of a Pd patient getting better as a result of doing any other form of exercise?

kevowpd profile image
kevowpd in reply to JohnPepper

Thousands of people are doing Rock Steady boxing with very good results. There are literally trials that demonstrate that high intensity treadmill running and high cadence cycling likely slow the progression of PD. I am not going to bother finding the links as it would be a waste of time.

JohnPepper profile image
JohnPepper in reply to kevowpd

Have any of these people doing boxing or Treadmill exercise been able to reduce their medication or even come off medication?

kevowpd profile image
kevowpd in reply to JohnPepper

Of course! Thousands! Many of them have emailed me their fantastic results.

How many people have come off medication thanks to fast walking?

JohnPepper profile image
JohnPepper in reply to kevowpd

That does not answer the question. Have they reduced their Pd Mefication? How many have com off theur Medicataion?

b-erec profile image
b-erec in reply to JohnPepper

> SUSTAINED FAST WALKING FOR ONE HOUR EVERY SECOND DAY

Got it, John. Will be giving it a try. As fast as I can go, one hour, day after day. Thank you! ✊

JohnPepper profile image
JohnPepper in reply to b-erec

That's it. Don't ever walk any further than when you cannot walk fast any longer. Build up slowly to the one hour maximum.

Goof Luck!

Hikoi profile image
Hikoi in reply to b-erec

Good luck. It would be amazing if you could cure yourself with fast walking because I haven’t yet heard of one person who has.

CuriousMe12 profile image
CuriousMe12

😄These spats are quite amusing. I wouldn't dispute fast walking probably helped John but I know other exercise helps me.What's best for one person is not necessarily best for another. Whatever you do, that you enjoy it is important

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