A friend of mine and a PWP has severe dyskinesia and I was wondering if the high dose thiamine protocol would help her? I understand that HDT is meant to prevent developing dyskinesia but I'm not sure if it helps decrease the movements once you have it. She was considering deep brain stimulation but they informed her that she needs to put on weight, she weighs 94 pounds at 5 foot one, so she has enough fat over the chest wall to cover where they implant the battery device.
I would like to encourage her to try HDT but was unsure if it would help her. She has been diagnosed about 14 years.
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Shaky-hand
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Sometimes, dyskinesia is thought to be caused by levodopa products and some members have reported that HDT has allowed them to reduce their levodopa dose significantly after establishing their optimal HDT dose. In such a case, where the dyskinesia may be caused by levodopa, testing HDT seems worth considering.
At 5' 1" and only 94 lbs, starting with a low dose and slowly working your way up may be one way to consider.
I have experienced slightly more dyskinesia since proceeding from 100 mg per day to 200 mg per day. I have presumed speculated that the increased dyskinesia reprents a wee bit of better functioning mitochondria.
Hard question: will the molecular processes that induce my postprandial hypotension be more powerful or will they be lessened?
The reason I ask is to try and determine if the synergy between levodopa products and B-1 may be the cause for the increased dyskinesia at high dose B-1 that you experience. Some members have reported being able to decrease their levodopa product dose by as much as half after initiating HDT , apparently because of the synergy between levodopa and B-1?
I have heard other members report that too high of a dose of levodopa has caused dyskinesia and it just made me wonder if this may be the cause in your case? The added B-1 might be improving the efficacy of the Sinemet and essentially similar to increasing the levodopa dose itself??? Just thinking out loud and trying to connect the dots!
In The beginning with high doses of the B1 my dyskinesia was out of control.
You are right Art by lowering my sinemet when taking high HDT and for a brief time the dyskinesia would seem better not gone but less but then i would worsen in general and have to lower the amount of B1. Dr. C said to me that my situation with dyskinesia was a bit more challenging to treat it’s certainly not impossible. I’m still taking B1 just in a lower dose. At some point maybe I’ll try it again higher or try the injections . Thanks, Connie
In The beginning with high doses of the B1 my dyskinesia was out of control.
You are right Art by lowering my sinemet when taking high HDT and for a brief time the dyskinesia would seem better not gone but less but then i would worsen in general and have to lower the amount of B1. Dr. C said to me that my situation with dyskinesia was a bit more challenging to treat it’s certainly not impossible. I’m still taking B1 just in a lower dose. At some point maybe I’ll try it again higher or try the injections . Thanks, Connie
I guess one way to try and find out would be to ask the people like park_bear who have lowered their dose of Levodopa after the initiation of HDT, how they knew to lower their levodopa dose and how much???
I was definitely able to lower it and my neurologist said I’m not taking too much sinemet more on the low side for having PD symptoms for 7 years and having sinemet for 4-5yrs. I definitely think people should try B1 and I’m still taking a low dose myself. Something I’ve not really seen discussed on HU as far as HDT or maybe I missed it but I do have one copy of the MTHFR gene which I know I’m unable to process folic acid which is a B vitamin so maybe it interferes with other b vitamins for me too. Thanks Art you have been a true friend to all of us!! Connie
We observed that the right dose of thiamine can lead to an improvement of the symptoms between 50 and 80-90%, but in order to push towards the complete regression of the symptoms the correct dose of l-dopa should be coupled to power the dopaminergic motor circuits. L-dopa then shall no longer lead to dyskinesia if used together with the high dose thiamine.
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