B1 dose adjustment

Yes, it is possible to take too much. Yesterday I was considering stopping my test of temporarily stopping B1. The first day that I stopped, bedtime tremor more troublesome. Each night after the tremor seemed to be less. This morning I have no tremor. I expect it will return as is normal. But the relief from tremor convinced me to go further without thiamine hcl. I worry that other symptoms will raise their ugly head if I go without B1 for too many days. I will risk it in order to further test the issue. When I restart B1 it will be half my normal dose.

[Grumpy77]

Hush hush, the real conspiracy news is here.... and this is no fake news, I repeat this is no fake news...

A top notch HDT B1 evangelist is stylishly considering dumping the well publicised protocol. Unconfirmed reports reaching us indicates that this might be related to some bizarre side effec...

All efforts to interview the evangelist has so far proved futile

Stayed tuned for the latest

🤓🤓 Sign off: this is really just humour 🤓🤓

Note:: 2g B1 works just fine for me

[Gioc in reply to Grumpy77]

LOL😃 I remember that at the end of a my visit with Dr C, in 2017, He mentioned to me a patient who used b1 in pills calling him "the American".

I think Roy was one of the first who bravely contacted Dr C and experienced b1 a lot. I believe that without Roy you would never have heard of it. 😃

In my opinion, for the damaging characteristics of PD on the brain tissue LDopa and b1 are synergistic. Personally, my symptom of tremor is well controlled by Ldopa. My tremor varies with stress, flu, reflux, cold, physical fatigue from work, agitation due to excess b1. Moral: the exogenous balancing of neurotransmitters is not easy with an active life that has many unexpected events. The human brain is a very complex machine that also reacts based on an external stimulus.

[Hidden in reply to Gioc]

It is a welcome thought to think i, Roy Propsner, may be "the American"

[Despe in reply to Hidden]

You must be, Roy. I for one learned the B1 protocol from you back in 2017. Thank you!

Husband is down to 150mg/d now and still experimenting. Is rash on the back a sign of too much B1? I believe it is.

[Hidden in reply to Despe]

"Funny" thing. I have a rash on my back and shoulders. Not so much a rash as it is red bumps. I asked wife, before or after I started B1. She said after.

"Funny" thing. I have a paralyzed diaphragm. One lung is affected. I have a new doctor, a physician assistant. I saw him for the first visit last week. I told him that my lung volume improved recently. He is not well experienced. What he told me was a surprise. He said my recent c/l dose adjustment may have played a role.

When doctor years ago discovered my lung issue he voiced surprise and wondered how that could occur. I have not seen where Parkinson's might cause paralyzed diaphragm.

My wife just said would you ( I ) rather have a rash or the Parkinson's symptoms?

[Despe in reply to Hidden]

I would ask you the same question! Guess a small price to pay, rash or PD symptoms.

What about your voice? Did you notice if it gets back to "normal", softer, or what? My husband was always a soft speaking person.

[Hidden in reply to Despe]

Not back normal

[Despe in reply to Hidden]

Great.

[AmyLindy in reply to Hidden]

Hooray for The American!

[Erniediaz1018 in reply to Grumpy77]

Lol. 😁

[dadcor]

Finally you got it.. Wish you all the best with the adjustment. Do not bother and take a good rest. Thiamine will work again for you..

[ion_ion]

Roy , you owe me some Corona ... beer to get immune to the Corona virus for the clue I gave you. You have to find the optimum dose to balance the symptoms. I prefer zero non-motor and more tremor then some non-motor and less tremor. For now I still need my full brain power.

[Hidden in reply to ion_ion]

I prefer some tremor over having DBS as my neurologist is pressing.

[bepo in reply to Hidden]

Good choice! No DBS.

[Erniediaz1018 in reply to ion_ion]

Interesting 🧐

[Dap1948]

Coincidentally I have just needed a break from B1 due to the appearance of night tremors. I have stopped for four days. I restarted when I felt zapped, with no energy. I restarted on the same dose and within 24 hours energy returned, now with no night tremors. Dr C talks about the need for regular breaks in your dose. For me it doesn't signify a need to reduce the regular dose. I'd actually gone three months without a break. I remember Roy that you tried halving your dose to 2 g once before but had to return to 4g. I respectively suggest that perhaps the break was all you needed and a reduction after years of happiness on 4g might be too much?

[Dap1948 in reply to Dap1948]

Respfully not respectively Roy in above. I'm not awake yet!!

[Grumpy77 in reply to Dap1948]

What does respfully mean? Checked google with no hits

[Dap1948 in reply to Grumpy77]

Respectfully! I've had an eye procedure which has left me with no sight in my right eye. I'm having difficulties as you will have noted!

[Grumpy77 in reply to Dap1948]

Sorry to hear that, I wish speedy recovery from the procedure

[Farooqji in reply to Dap1948]

May God give you a speedy recovery

[Dap1948 in reply to Farooqji]

Many thanks, iqbaliqbal and Grumpy. I may have to get used to using one eye only. It's just taking a while to retrain my brain.

[Gioc in reply to Grumpy77]

😀

[AmyLindy in reply to Dap1948]

I’ve thought about this as well- break instead of reduction. Following.

[Dap1948 in reply to AmyLindy]

I've twice taken a break and resumed at the same dose. I think when you're trying to find your right dose then a break and a reduction is wise but I think when you've found what suits you only a break is necessary. Well that's what's working at the moment!!

[MarionP]

"When I restart B1 it will be half my normal dose."

Your normal dose being?

[Hidden in reply to MarionP]

Four grams a day is my normal dose.

I am still “testing”. Deciding what is the best approach is super complicated by the “no one size fits all” and everyone is different.

[alaynedellow in reply to Hidden]

I agree Roy, i have my normal dose, as i have said before mine is a low dose- 175mg a day. But when i need a 'boost' like travelling to London for xmas i boosted my B1 to aid all the stresses and then had a few days off once i returned to my quiet life in rural france. This balanced me out again. I take the notion that none of my PD meds or supplements are vital to life they just aid my symptoms and so can be manipulated as needed.

Maybe you need a B1 holiday to calm your system.

Good luck Roy, you are an inspiration. X

[Erniediaz1018]

Appreciate your transparency Roy, thanks 🙏

[Sara-Cd]

Vitamin B1 - overdosage symptoms - adjustment in 4 years

Hello Roy, this is Sara. We spoke a long time ago as I was too Dr C. 's patient. Sorry to hear about your tremors.. I occasionally had B1 reactions in the past. Back then, Dr C suggested to interrupt B1 assumption for about ten days and start over with small amounts at the time. (-> Ps Dr C. stated not to worry about occasional B1 breaks because its coverage continues for another three months since the interruption). Together we found that it was suitable for me taking half thiamin dosage: from 8 pills (500 gr each) to 4 per day. This worked well for a while, but unfortunately last year problems appeared again . Day and Night cramps. Moreover, I became intollerant to pramipexole (I could sleep only three hours per night) and started to have painful spasms every time I was taking levodopa. This happened so frequently and unpredictably that I stopped driving and very sadly needed to quit my job. My local neurologist didn't have a clue of what was happening to me, so I started keeping a diary of my condition related to my medicines/quantities /side effects.

I was the only person taking high B1 dosage in my city, I considered that my status was probably related to this factor.

Findings

This is what I noticed a year later - considering that I took B1 on daily basis.

1) one week of B1 strong rejection ( 40 minute cramps every three hours, day and night) occurred exactly every 4 months.

This happened when the temperature rose or decreased significantly (5 degrees up). Seasonal change?

2) In every occasion I was assuming different combinations of medicines:

a) B1, levodopa and pramipexole,

b) B1, levodopa and AZILECT,

c) B1 and levodopa.

My personal understanding is that my crises occurred depending on B1 assumption and weather temperature change only.

Dealing with B1 and managing periodical over dosage symptoms

So far I suspended B1 during the "knock out" period. From now on, I am also introducing muscle relaxants three times a day together with the normal levodopa dosage during the critical week.

I am still dealing with 10 pm and 4am calf and foot cramps, I suspect that the Modapar HBS (slow release) is not sufficient to cover my need. My neurologist suggested taking Madopar dispersable when spasms occur. I am considering this and alternative ways to get some improvements. I'll share new updates.

(Hope you don't mind, I am copying and posting my reply also in a separate post, hoping it might be of help to other people).

All the best,

Sara

[Gioc in reply to Sara-Cd]

I also occasionally have the same problem cramp in the same way last year winter, but then it resolves itself by treating it as a normal cramp, that is, by drinking much more water and adding mineral salts such as magnesium. In winter I drink less water.

[Sara-Cd in reply to Gioc]

Hello GioCas, glad to hear that a normal treatment gives you releaf from cramps. I had a complete blood test analysis, all parameters were normal. During these years I tried magnesium, potassium, iron, pickle juice, hot and cold water, turmeric, apple winegar, drinking more water, anything. No way to stop the pain, it could last even three hours. I was reluctant in taking muscle relaxants, but so far it has been the only thing working.

[Gioc in reply to Sara-Cd]

I understand, I tell you a simple thing that has given me some benefit. The recovery of minerals is not immediate and often requires a fair proportion between the elements, I am not a nutritionist, but I find relief with this product taken in the evening, calcium magnesium ascorbic acid. It is also found better on the web as individual items to mix with apple cider vinegar, but this is convenient to prepare.

Drinking lots of water helps a lot, at least 2 liters a day.

Here some example

dev.dnagency.it/naturalpoin...

gandgvitamins.com/cal-m-500...

[Sara-Cd in reply to Gioc]

Thank you for the hint. I will give it another try. I would like to share something Dr Costantini also recommended, it might be helpful in the future maybe . He once said to monitor the continuous magnesium assumption, as it could give over dosage side effects as well. In my case, cramps.

[Gioc in reply to Sara-Cd]

Ok I agree ,

What I know about Dr C is about B1 I have no data on his part of others things.

You could perhaps write to his assistant for this type of problem, I never did.

[radpooz]

My spouse has been taking twice weekly B-1 injections, after visiting with Dr Fancellu in Genoa. Does anyone know if people using injections need to periodically decrease number of I jections? Doseage is fixed per ampule, but could adjust amount put into syringe. Thanks for any suggestions.