THIAMINE : STOP: After my reaction to... - Cure Parkinson's

Cure Parkinson's

25,951 members27,242 posts

THIAMINE : STOP

ecurb profile image
22 Replies

After my reaction to Thiamine, after taking 250 mg x 4, I tried a second time a day later with 1 250 mg tablet which gave me same result. I waited for another day taking half a 250 mg tablet. I woke in middle of night with pins and needles running through body and practically unable to move. I managed to swallow one quarter of a Leximil tablet which allowed me to go back to sleep. I became awake around 6 am still under the effect of Leximil all day only being woken by my wife every 2 hours to take a Modopar 125.

I have decided to stop taking Thiamide for the time being. I am disappointed because the favourable posts recently had built up my hopes.

Written by
ecurb profile image
ecurb
To view profiles and participate in discussions please or .
Read more about...
22 Replies
aspergerian profile image
aspergerian

Thank you for important feedback. We all might consider observations by William J. Walsh, PhD:

walshinstitute.org/biochemi...

MBAnderson profile image
MBAnderson in reply to aspergerian

Good post. For those dismissive of supplements.

“Even with an ideal diet, most of us have certain nutrients that are at very low levels with many times the RDA required to achieve a healthy balance.

The brain is a chemical factory which produces serotonin, dopamine, norepinephrine, and other brain chemicals 24 hours a day. The only raw material for these syntheses is nutrients, namely amino acids, vitamins, minerals, etc. If the brain receives improper amounts of these nutrient building blocks, we can expect serious problems with our neurotransmitters.

Most neurotransmitter problems appear to be genetic or epigenetic in nature and involve abnormal absorption, metabolism or storage of key nutrients. Nutrient therapy can be very potent and can avoid side effects, since no molecules foreign to the body are needed. This therapeutic approach may eventually eliminate the need for most psychiatric medications.”

MBAnderson profile image
MBAnderson in reply to aspergerian

I've read through the website and find it really quite impressive. It makes a strong case for the role of nutrition/supplements in one's brain chemistry. Have you bought the book, Nutrient Power? It's only $15 so I'm tempted.

aspergerian profile image
aspergerian in reply to MBAnderson

Walsh's Nutrient Power is on my next-up book list.

sunvox profile image
sunvox

E - Were you taking thiamine hcl tablets or some other form? Thanks - Joe

So sad you had to STOP. Now you must continue with Parkinson's symptoms and Parkinson's progression.

park_bear profile image
park_bear in reply to

Let us not go overboard here. Everyone is different. What works for one may not work for another. There are a number of different interventions that are reported to improve Parkinson's and this is only one of them.

Syncletica profile image
Syncletica in reply to

RoyProp: Your posts are encouraging. What PD symptoms have improved with T-HCL intervention. Tremors? Rigidity? ad infinitum..

Thank you for sharing.

in reply to Syncletica

See my Profile. All symptoms improved to a greater to lesser degree. Started w/ mega-benfotimin. Doc Costantini put me on T-HCL and almost immediately, no constipation. I am still looking for improvement from tremor.Doc said 1 -2 months but I am into my 6th week

stepan13 profile image
stepan13 in reply to

I am into my 6th week too. 2000 morning, 2000 evening with food

Parkie- profile image
Parkie- in reply to stepan13

Hello Pachikov. I just saw that you were in 6th wk of 4000 daily thiamin a month ago. Any benefits, any adverse effects? Many tks

Bocabarby profile image
Bocabarby in reply to Syncletica

My husband sleeps better with a small amount mixed with honey!

This was not the "same result" you reported 4 days earlier where you wrote "Yesterday morning I decided to start Thiamine and took 4 250 mg tablets at 6 am, Approx. 4hours after my parkinson's hit me like a ton of bricks : generalised muscular tension, giddiness, double vision, anxiety... and I had to lye down, until about 8 hours later these symptoms started to recede and returned to "normal" overnight. Anyone else had unwanted side effects from Vit. b1 ? and at what dose."

aspergerian profile image
aspergerian

What brand? Perhaps your body is reacting to one of the excipients in the supplement, not necessarily to the B1. Become acquainted with SJS Syndrome and watch that your symptoms aren't indicating SJS, which is catastrophic.

mayoclinic.org/diseases-con...

aspergerian13 profile image
aspergerian13 in reply to aspergerian

See also.

SJS Syndrome: meds, foods, herbs

healthunlocked.com/parkinso...

Jmwg45 profile image
Jmwg45

You are right for you to stop and this is such a shame, and from what I can tell, very unusual. I agree with RoyProp that you make sure you are taking Thiamin HCL, but as with all these things we must do our own research and must always listen to our own bodies.

My own experience with Thiamin HCL has been very positive so I hope you find a way around this complication.

Anyone thinking of trying B1, this confirms you must proceed with some caution and work up to the full dose but my own research (please do your own) suggest side effects are rare and this reaction doesn't seem to fit b1 side effects. But one thing we know about PD - everyones is different.

I hope others are not put off but it is important that we have this feedback where people have experienced problems. Thank you for letting us know and good luck.

stepan13 profile image
stepan13

ecub, what brand of b1 did you try?

Thank you - Stepan

ecurb profile image
ecurb in reply to stepan13

benerva hcl 125 mg

aspergerian13 profile image
aspergerian13 in reply to ecurb

See:

Letter: September 13, 1941.

HYPERSENSITIVITY TO THIAMINE.

jamanetwork.com/journals/ja...

Motherfather profile image
Motherfather

if you decied to try again try it with your doctor only by needle smaller doses.ill try it shortly sometime next week.

ecurb profile image
ecurb in reply to Motherfather

Thank you for advice, I think I can find 100 mg injectable here. Might try this week.

Islandhappy profile image
Islandhappy

I started with 100 mg thiamine. Taking it slow.

You may also like...

Thiamine and headache?

Thiamine as per Dr. Constantini

like to know which manufacturer to take and if it is perhaps the fillers in the capsules which...

High dose Thiamine update

3grs 6 days a week and now I am going to reduce the dosage to 2grs a day. I noticed when I take...

Thiamine B1 and the placebo effect

for the first time. It was bad on day 1 for about 8 hours and the days 6,7 and 8; otherwise it was...

I Believe High Dose Thiamine (Vitamin B1) is Helpful, But I Do Not Believe It STOPS the Progression of Parkinson's Disease.

months. I began taking high doses of Thiamine Hcl in May of 2018, just 3 weeks after I was...