I mistakenly decided my thiamine hcl (vitamin B1) needed an adjustment. I based the decision on a small change for the worse on one of my symptoms. I took the recommended dose adjustment steps without success.
This week while working on a different issue I made a spectacular discovery. A decision to increase my C/L dose improved my on time and improved the symptom that wasn't improved with B1 dose adjustment.
It's standard (though not universal) to have to increase your intake of CL over time.
That's great Roy!
I presume you are talking about tremors...
I am curious. What did you increase your dose to? And are you able to achieve multiple consecutive dose intervals without going off (ie, without tremors)?
I just started, two tabs 25/100 IR, four times a day. Still in evaluation state.
Today my neurologist writes:
"I am in favor of working with you as far as medication is concerned. Your main problems seems to be tremor for which CD/LD is superior to any other medication since developed, but as you aptly note, tends to have problems with constancy of benefit and possible problems with fluctuations and possible dyskinesia. That being said, I have rarely seen that your tremors are well controlled. Certainly, we can return to Rytary but it is not just that we want the effect to last longer... we want the effect of having your tremor treated, period. Also, my push towards DBS means nothing if levodopa has no effect on your tremor, as that is the major predictor of whether or not DBS will work for you anyway. Your friend's use of Nourianz doesn't apply to you, as I don't think it has as large of an effect on tremor as it does on bradykinesia which at least in what I have seen of you, is not a major problem. So perhaps going back to a week of movement diaries would help. This is the diary I think I have given to you before if you would use this please. parkinsons.va.gov/resources...
Hi Roy: It looks like you are in good hands! Nice to see your neurologist is willing to work with you on the details...
Please give the link to the diary again. I clicked on it but could not get there.
Using your computer and not smartphone -
Join my Facebook group Parkinson’s thiamine hcl
m.facebook.com/groups/23226...
There u will find Files. ClickOpen , the first document is “motordiary”
Just left my neurologist. She prescribed one tablet every three hours (25/100 IR), and one 50/200 CR at bedtime.
“This week while working on a different issue I made a spectacular discovery. A decision to increase my C/L dose improved my on time and improved the symptom that wasn't improved with B1 dose adjustment.”
Wow Roy you have finally discovered what we have been saying for years. C/L helps symptoms!!
Hi Roywhere do you buy your B1? I can find lots online but all in 100-200 mg. which would make achieving 200 -400 g swallowing a LOT of tablets. Can you recommend a supplier?
thanks,
Choke on Solgar tablets. Easy swallow Vitacost capsules. vitacost.com/vitacost-vitam...
Today saying out of stock
This link looks like it is in stock and I tried to checkout with it in my cart and it did not say out of stock :
vitacost.com/vitacost-vitam...
Art
where are you ordering from? it's out of stock to Canada
Solgar is also showing out of stock
Maybe need to use desktop lol
It’s out of stock!
🙃 High dose B1 is good for Parkinson's with added benefit.😃
High dose B1 therapy using Duopa pump
High dose Thiamine/ B1 in New Zealand
Low dose B1 therapy
