I was diagnosed with young onset PD IN 2010, at age 40. Then,10 years later, I found I was losing my balance and re-diagnosed as Parkinsons plus, only they don't know what the plus is. The suspicion is ataxia, of which there are over 300 varieties. All of this to say I have nothing to lose. I am trying thiamineand am looking for personal experiences with it. How does one find that magic dose? I took two weeks to get up to 1,000mg oral pills. At 4,500 mg (a miscalculation) I felt the experience was miraculous, but the next day I regressed and symptoms were worse. How do you know if you've taken too big a dose? Is there a link to better sleep? I was waking every 2 hours, vitamin b1 has improved my sleep. How long does it take to notice effects? Do they last, or come &go? Because my prognosis/diagnosis is fuzzy, if I have a bad day, I instantly assume I am getting worse. The "rollercoaster" of symptoms frightens me. I'm on Rytary 95's and Sinemet. 8 Rytary and 4 Sinemet per day, nothing at night. Thanks so much, if I'm repeating FAQs I apologize.
Personal experience with vitamin b1, thia... - Cure Parkinson's
Personal experience with vitamin b1, thiamine?
eemove,
Exactly what you experienced is exactly what too high of a dose of HDT will do, decrease your symptoms quickly and increase your symptoms quickly after the initial improvement. Some members have reported new symptoms that were not previously seen until an HDT overdose. The best thing about your experience is that you got an initial positive response which clearly expresses that you are a responder to HDT! Not everyone responds to HDT, so you are off to a good start! Btw, where did you find 1,000 mg oral dosing of thiamine HCL? I have only seen 500 mg tablets and capsules as the largest dose available.
Better sleep has been reported by multiple members, but taking the second dose too late in the day can have an opposite reaction. It should be taken around lunch time for most people. In some people, they have reported effects as soon as the first day of supplementing while others have reported up to 6 or 7 months to see their first improvement and then steady improvement from there on for up to a year to a year and a half before leveling off. Taking 20 minute videos of yourself doing multiple different daily tasks initially for comparison later can be very useful for clarifying and documenting your progress!
Dr. Costantini's standard response to such an action would be to stop HDT for 3 to 5 days and then resume at half of the dose that got such a response and wait again to see how you react. If your response to that initial dose happened in just two days, the dose was way too high.
Here is a link to a ton of information on HDT including 58 FAQs generated by this forum and answered directly by Dr. Costantini when he was still alive :
healthunlocked.com/parkinso...
Post your questions as needed and please come back and let us know how HDT is working out for you and good luck!
Art
Great insight. I have injected hdt 2x per week for past 3wks. Little +change l, some neg change (constipation and loss of words).any thought s.? I plan keep doing s for 2 months. Diagnose 4yrs ago. I'm 57 years old
bigl62,
I have no experience with the injections, but other members do and may have some ideas for you if you tell them your dose. Dr. Costantini said that most patients who started injections could tell a difference within an hour or so of the first injection. He also said that a worsening of symptoms after starting thiamine was almost always due to a dose that was too high.
Lastly, not everyone responds to HDT. Have you noted any benefit at all since your first injection?
Art
Am I correct in my understanding that if you have the right dose of B1 then the pull test will be normal? So shouldn't this be used as one of the parameters for knowing that your dose is adequate?
Yes, on the HDT FAQ page, Q&A #34 and #48 addresses the push/pull test. You are correct, Dr. Costantini, in his office, used the pull test to help determine the optimal dose for the patient when applicable. Obviously not a consideration for more advanced stage patients, but definitely used for earlier stages. Ideally he was looking for a good result on the pull test in conjunction with significant symptom reduction too in order to reach his conclusion of an optimized dose. He did this with his email patients also via the videos they would send him.
healthunlocked.com/parkinso...
I think he also mentioned it at other times, possibly on the HDT primer page and in emails, but that was clearly one of his criteria for determining an optimized dose.
Art
Thanks for your response, Art. Clearly I need some guidance. I could make excuses why it's taken so long ti respond (this site hard to navigate, every time I come I get distracted and go offf down a rabbit hole, typing takes F O R E V E R... )
I am still trying to find that magic sweet spot. My results have been that my balance is better (I went from falling several times a day to almost none, and no injuries ) I feel sturdier, I seem to stand straighter, no more freezing of gait, less shuffling, and the biggie, sleeping all night long and therefore incontinence (or fear that I would not make it in time). which I seem to have stumbled upon.
h ave you heard of Dr. /Gominak or rightsleep?
I was using 2,000mg per day of vitamin B1, then increased to 2,200 mg per day and started falling. Plus I am reading about people takingvery low doses (<500mg/day) and I wonder if I should just restart at a very low dose and work my way up?
Based on what you said, it sounds like you were getting a good response at 2,000 mg and the problem occured when you increased your dose to 2,200 mg and this is suggestive of the idea that 2,000 mg is close to your optimal dose. You can experiment at 2,000 mg or slightly less to see if it improves your pull test also.
Dr. C said that a good pull test in combination with symptom improvement was his typical basis to determine an optimized dose.
I am not familiar with Dr. Gominak or his work.
I am not clear on what you are saying regarding incontinence.
I don't know how long you have been taking B1, but generally speaking, forum members have reported cumulative benefits to just beyond one year.
This link contains all of the data that Dr. C left with this forum.
healthunlocked.com/parkinso...
Art
was dx Diagnosed 2012
My regimen:
The positives after B1: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more (less) constipation. Parkinson's progression stopped. Suppressed most motor and non-motor symptoms...
My 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.
- subject to change/evolution -
I follow this regimen:
4x day, C/L 25-100mg IR.
2 x day (8 am 2g and at noon 2g) vitamin B1 (as thiamine HCL) 500mg easy swallow capsules.
My last dose of 25/100 is at 6:30. Two hours later I take one 50/200 controlled release. This helps with sleep as tremor is reduced if ever so slightly. Like many PwP I am lucky if I get three hours of sleep.
Hi eemove,
The underlying idea of finding the right dosage is to allow b1 (whichever form) to be where it needs to be whether by passive diffusion to your brain via large enough dosage or having to modify the dosage with slowly restored enzyme function while watching the methylation balance. Many report increased tremor, jitters, back/leg pain, change in BP, or other worsening symptoms which you take as a queue to cut back on the dosage, but short-term b1 overdose is mostly benign so there's no need to panic. You also need supporting nutrients since b1 alone can’t accomplish much on its own without required cofactors such as other b vitamins (try active Bs such as PE B-Complex Plus), magnesium (l-threonate is good for passing the BBB and helps with sleep), zinc (affects myriad enzyme functions), copper (activates B's), etc. Please visit the below links for more relevant info.
Ciao , ti consiglio di leggere con attenzione il forum che ti ha consigliato cartista.
Tieni conto del tuo peso per trovare la giustizia ta dose di b1. Io ho notato i primi benefici dopo 15 gg. Auguro anche a te il raggiungimento di ottimi risultati
Try hardys daily essential nutrients with the thiamine for other nutrients you may be needing and cut any processed food out of your diet, and eat only fresh vege, whole grains, and non processed meat. See if it helps. Be strict.
My cat developed ataxia died, and we are pretty certain it was the dried food that’s got from the vet which he ate as his sole diet since he was a kitten. We think it was missing some nutrients or had an additive he couldn’t tolerate. Our other cat was very sick at the same time. He was at the vet for 2 weeks on a drip and they thought he would die. He has strange bloodwork they though was precancerous. I changed his diet to raw meat And he recovered over time and now 5 years later he is fit and healthy and his blood tests are normal.
I know humans and animals aren’t the same but it taught me that processed food regardless of being science based is not good and real food is what the body needs. Having said that it may be you are deficient in some nutrients so the multi is worth a try too.
If you read posts in my profile you'll see i metitulously monitored my journey with B1. You have to record changes as not always obvious Dr C himself said to video self before starting regime.
I now take 200 mg 5 days a week with 2 days off which stops a build up of B1 and am in best shape i have been in for years. It takes work but heh i'm worth it.
Good luck
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