Levodopa =? Dyskinesia
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.
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.
THANK YOU Marc A. for the clear expression of your sound reasoning !
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".
suggest you consider Gastrodia elata to help alleviate your dyskinesia
some PD research on it:
bmccomplementmedtherapies.b...
Have you or do you know of anyone who has tried it?
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.
Have you ever been given azilect or praximole? Maybe ask your neurologist.
Try Gocovri working for me
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
Did regular amantadine work for you at some point?
Yes
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.
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!
How many people have reported to you that they have overcome their dyskinesia with walking?
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:
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.
As John, he realised later that high-intensity training was not as helpful as fast conscious walking and yoga also.
Regarding dyskinesia, he discontinued meds after he tried them out, several times, according to what he says in one of his talks.
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):
listennotes.com/podcasts/pa...
PS: at 81, and med-free, he is not so "old"...
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.
Agreed
John
.I suffer tremendously with dyskinesia. I would love your information sent to me.
Thank you
Rebecca
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'.
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?
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"
Do you have any experience or knowledge of a Pd patient getting better as a result of doing any other form of exercise?
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.
Have any of these people doing boxing or Treadmill exercise been able to reduce their medication or even come off medication?
Of course! Thousands! Many of them have emailed me their fantastic results.
How many people have come off medication thanks to fast walking?
That does not answer the question. Have they reduced their Pd Mefication? How many have com off theur Medicataion?
> 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! ✊
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!
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What dose do you take and how often?
200 mg twice a day
A more specific time schedule would be helpful. Have you considered trying to take 100mg four times a day?
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
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.
Best of luck.
That is a rather unusual schedule. You have gaps of 6hrs, 3hrs and 4 hrs then 11 hours.
Was one tablet 8x a day. No dyskinesia. To reach the desired effect, two tablets 8x a day. No dyskinesia.