Recently I have first good indication that better days may be ahead. At the same time each morning I have no tremor. This lasts for two or three hours. I must be doing something right. Hope it continues and expands to all day and night 🌙. 😂
Such a short time of relief but definately a time to be embraced
My tremor never stops
Same here and the past two weeks or so noticed tremor on right leg also.
does that mean that thiamine is not working for you? I have not seen any follow ups since you said you were going to start thiamine a while back?
Sorry to disappoint Art. I've been planning to start September, but my symptoms seem to be progressing therefore I'm thinking to start very soon. You know Parkinson's brings with it a blood relative called procrastination. I'll definitely keep you posted.
The good in your procrastination is that you have now seen some mistakes that people make while testing thiamine and as such, you may now be able to avoid them. A big one being not staying in contact with Dr. Costantini while trying to find that optimum dose!
Same here...feel it in right leg also and curling of toes on same side
A wonderul gift! Embrace it!
Yes, the dark times are may be over.. I have a bit similar situation, yet not every day... Also recently I have days with much less need of Ldopa ..
Are you saying that you are having some tremor reduction?
Yes, this is what I am saying. Since a month yet not in regular periods and not every day, it is mainly in the mornings. Either no tremor at all or very mild and easily controllable. Lasts about an hour or a bit more. Three times last week. I am using thiamine i.m. since almost 3 months..
That is good to hear! You are the 19th forum member using thiamine who has reported improvement in tremors!
Thank you Roy for you contrubution to PWP . How long have you been on B1 medication .?
I do not recall exactly, maybe 7 months. I' d have to look/search my posts.
ah ah the attention goes to the future, something will mean!
In a post that was dated "7 months ago" you said the following :
' Next week exclusive of other forms of B1 I will start/follow Doc Costantini's recommend: 2 x day (4 tablets am and pm) Solgar Vitamin B1 (as thiamin HCI) 500mg '.
So you are correct, you are about 7 months in.
How long ago did you start to notice a tremor improvement?
why remembering the past time when there is much better in the future, all to write ... bad idea for a delicious Saturday evening in August 🍀🍀🍀
The reason I asked Roy that question is because there are forum members with tremors as a major symptom that might like to have an idea of how long it might take to see if thiamine might also help their tremors or not, if they decide to try thiamine. 😊
“There is a time man must fight, but also a time to enjoy the victory" GioCas now!😀
The time was not noticed.
That’s great I hope it continues for you
My husband has been on High Dose Thiamin for 1 month now, and he too has periods without tremor.
Walking quicker, some return of arm swing, no longer shuffling.
C/L seems to kick in faster, too.
We did see increased tremor at 3 grams and rather then cutting back, decided to restart his Jarrow brand B-Right complex
to balance the other B-vitamins.
This worked for him, now on 3.5 grams in divided dose, along with one B-complex.
Life is good, and praying it will stay this way.
Please keep posting about your successes!
If you haven't already added your post to the "who is taking thiamine thread", can you add it or can I?
Easilly, I think I found the Thiamin thread, but not sure how to move my comment...cut and paste? Where’s a teenager when you need one??
Thanks and feel free to move my comments!
Thank you, Kattripp!
I will just copy and paste it so it remains in this thread also!
Thank you for your kindness!
Thank you for posting your results!!!😊😊😊
They will be very helpful for others who are considering testing thiamine!
Here is your post in that thread:
The drawback to me doing a cut and paste of your post is that my icon appears with the post instead of yours which will make it harder for you to find your post in that thread if you ever need to reply to it to with an update. Even though I copied your icon with the post, when I paste it, instead of the icon, it shows your name twice .
I’ve been in high dose B1 Thiamin for Over 2 months w improved gait and arm swing on affected areas/right side.
My tremor abated w Selegiline /Eldepryl a year ago. Starting a trial without Selegiline to test effects of Thiamine, alone, on right sided arm/hand tremor.
Thank you for sharing your progress and instilling hope! May we look forward to more good news in the future!
So happy for you ! You so much deserve it, Roy.
I love news like that one.
I am glad to hear that Roy.I hope it will last little bit longer then 2 3 hours maybe forever. I think that you really close to recovery from this condition.
Best post ever!!! Thank you for sharing the hope. 🤗. Tremor is my most frustrating symptom.
Translated? Is this a Doc Costantini comment?
Increasing the doses of levodopa to what extend? Sure it is individual, but anyway there should be some upper limit...?? Curious what Dr C may think about that?
That is great to hear, RoyProp. Even though we all get different results and don't really know what to expect next, when I hear about any positive results it keeps me looking forward to some more good times in the future.
Wonderful to hear.
Superb news Roy. Onwards and upwards. Early days for me on the B1 as you know but yesterday in the pool my arm remembered how to swim- i must have swum some 30 lengths with no effort whereas few days ago 4 lengths was hard work. We need to keep the faith and keep working on re-building wasted muscle and muscle memory. Well done Roy.
Do you take solgar brand? I see that brand but it has no hcl on the end of the word thiamin on the label. Does it have to state hcl?
Vitacost thiamine hcl in 500mg easy swallow capsules
Hi Rosabellazita, if you are taking Solgar vitamin B1 500 MG if you will look under supplement facts on the side of the body it says thiamine HCL. Vitacost a very good brand as well
Mine is spring valley and it doesn't have hcl in the supplement facts.
If your B1 is this one it contains thiamine mononitrate rather than thiamine HCL:
Spring Valley Natural B1 (Tablets)
Vitamin B1 (as thiamin mononitrate), calcium (as calcium carbonate), cellulose, maltodextrin, hydroxypropyl methylcellulose, magnesium stearate, croscarmellose sodicum.
So what I have the wrong kind??
Yes. You want thiamine HCL. Look for it on Amazon.
I cannot find any with hcl
Last time I checked, 49$ on Amazon and 29$ at Vitacost.com
Here is a link to one ad. If you search on thiamine HCL you may be able to find a better price.
300 capsules...Vitacost thiamine hcl in 500mg easy swallow capsules...29$
I am glad to hear about your improvement, and hope you'll get even better. It should be thiamine.
I am afraid, unless some foremost Neurology scholars in the U.S. study thiamin on a large scale and bring unequivocal proof to its efficacy for PD in the form of research papers published in major medical journals, so robust that could lead to its addition into treatment guidelines, thiamin therapy will never reach most Parkinson patients.
Our efforts to spread the word and Dr. Costantini's website are all actions with good intentions, but may not suffice. It is the neurologists who can rutinely implement this therapy, yet most do not know about thiamin, let alone believe and endorse it.
I am sure neurologists do know about Thiamine hcl, but figure the odds them acknowledging its efficacy. NO PROFIT for neither the doctors nor the big pharma. In the meanwhile, we will continue contacting Dr. C. and follow his therapy protocol.
i know what it stands for.Just that my husband only takes azilect.My husband still does not admit he has it and that makes it very difficult.He does not want toread anything about it even though hes a qualified pharmacologist years ago.
You referred to "it" 3 times without saying what "it" stands for
"I know what it stands for"
"My husband still does not admit he has it..."
"He does not want to read anything about it..."
What are you referring to?
So sorry .I was asking Roy what cp stood for and then found out its abbreviated for carbidopa levodopa. ‘’It “stood for Parkinson’s Disease..my husband had it for a year now and he still doesnt want to admit it
God bless you Roy. This is indeed a very good sign .
Hand tremors is my main symptom how much thiamine do you take and how often! I have had the same tremors for 7 years with slow progression that is hindering my hand writing at this point.
Thank you for the information.
2g morning, 2g evening; er C/L 50/200 three times day
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