Five days ago, my husband stopped taking sublingual B1. His head has been foggy and his balance had been getting progressively worse for many months, falling to the side weekly of late and of course we put it down to his PD getting worse.
We have been trying to get the ‘right dose’ of thiamine for 4 years. Dr C had started him off on thiamine HCL, 1000 mgs daily and his constipation was resolved after 3 days, so we knew he was a responder.
Now getting back to why we changed over…I’m not sure really. I just felt the sublingual wasn’t working any more. (Please see the link below where Gcf51 and dadcor commented on their findings)
After 2 days on 1000 mgs of HCL, I noticed he wasn’t stumbling and he said he didn’t feel foggy in the head!!?? Could this be the HCL or just coincidental? Non-believers of B1 would say it’s the placebo effect. That night, he was kicking and thrashing around in his sleep, and he hadn’t done that for maybe a year. Hmm… so the sublingual B1 had kept that at bay. But also it could be the 1000 mgs of HCL was too much, so we cut that down to half yesterday and today and voila! Fingers crossed that this continues. Early days, I know.
Has anyone used the sublingual B1 as well as the HCL at the same time? Could they work on different symptoms? .
See post and comments by Gcf51 and comments by dadcor…
my husband is using both but not in high amounts- he does not have leg movement-he does not have constipation- his walking has been fairly good and his hand tremors are still there and for the most part the tremors are less than they were although he will sometimes have times when they are a bit worse - he does not take levodopa- his diagnosis was September 2021 but he did see a neurologist in 2017 who would not say if he had essential tremor or Parkinson's. His tremor started with a very mild hand tremor over 30 years ago and the change in the tremor was very gradual
Thanks for your reply. Is there a reason why your husband takes both the sublingual and the HCL, or merely to cover both bases? My husband doesn’t have a tremor, he is rigidity dominant. The slow progression your husband is experiencing over 30+ years is amazing!
I've used thiamine hcl since November of 2018. My maximum dose has always been 1 gram (more than that, and my symptoms get worse). I find that now I often need only 500 mg (2-3 days per week, always based on my symptoms). I've experimented with the mononitrate form (100 mg quick-dissolve), and recently I've been substituting 1-2 doses of the hcl with mononitrate each week just to see if it makes a difference. So far, I haven't noticed any changes.
I tried Sublingual B1 for a couple of months. It is almost impossible to find the right dose with sublingual (in my experience) . Initially it was good but gradually there were more ups and downs so I resumed oral Thiamine and I am glad that restarted the oral instead of sublingual. And after that all those ups and downs disappeared..
Thanks for sharing your experience. I’m very happy at this stage that my husband has gone back to the HCL. I still can’t help but wonder if maybe, just maybe, the different forms of thiamine could help with different symptoms? Just a thought.
What is the difference between the sublingual and the HCL please? I have been trying to find the right dose of EZmelts, but I have a feeling they are just the wrong kind.
Sorry, I’m not the right person to explain the difference between sublingual (mononitrate) and HCL (hydrochloride).. Daph Bryan had checked with the firm and was told the EZmelts are not sublingual, they go through the digestive system.
My main concern with the pure formulas one is that it starts at 100mg and I felt like I overdosed when I took the 25mg of EZmelts. So how would I start on a lower dose taking that one? Can they be cut into quarters or something?
I can’t make any recommendation to you regarding this, but if you were my husband I would maybe say to start off slowly once or twice a week. They are really small tablets and would be difficult to cut them uniformly. Good luck working it all out 😊
The EZ melts are a very low dose and too expensive if you're going to be taking a high dose as the therapy recommends...they are not "sublingual" just because they melt...they are not absorbed into the bloodstream...they go through the digestive tract just like oral HCL.
Yes, I understand that now. Thank you. If the does is too low as you say, I'm very puzzled why the 25mg they contain, gave me a much worse hand tremor. I was actually feeling better when I started them (maybe placebo). But when I took 4 of them in one day, the tremors in my hand became severe enough that I could no longer write.
I really can't help with that unless you're just super sensitive to it. I'm at 3,000mg currently and still increasing trying to find my sweet spot...everyone is so different that it's hard to suggest how to proceed.
Understood. Plus, that one site keeps being out of them too. I just had to order it from amazon, which I vowed never to use again. Will try taking it once and see what happens.
He was taking 100 mgs of the mononitrate daily then we tried cutting back to 5 per week, then every other day. His balance was getting worse over time, as was his foggy head.
As for the HCL, we’ve found small tablets that are 100 mgs, so he just takes 5 in the morning. As you say, very simple and easy to take as he has swallowing issues with tablets.
Hoping this time around it will be easier to observe if it’s over or under dosing. It gets very confusing at times with so much constantly going on.
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