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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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?
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.
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.
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.
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.
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.
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.
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.
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?
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".
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.
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
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!
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.
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):
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.
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.
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.
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'.
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"
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.
😄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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