B 1

[akgirlsrock]

Was doing 500 mg morning and afternoon, for awhile, tried going up to 4000mg, didn't notice much , kept me up at night if took to late , but when I go off for a couple of days, and back on I took 1000mg morning and felt a bit dizzy and seeing white out, but could still see.

[chartist]

This is why Dr. Costantini recommended not taking HDT later than lunch and he once said his preference was to take the full dose in the morning dose, but he said he had patients who did not do well with that high of a dose in the morning so he settled on taking at or near breakfast and the same for lunch. He said for some of his patients, taking it later than lunch caused sleep issues while other patients reported that B1 late in the day helped them sleep. This information is on the HDT FAQ page.

You didn't say how long you took B1 for, but some people took up to 7 months to see any results while others saw benefit the first day.

Lastly, some people do not respond to B1 at all, but the majority do respond.

Art

[ForViolet in reply to chartist]

Yes. My husband is taking 1000mg when he gets up. Then, he takes 1000mg after lunch. The first thing he noticed was better sleep. Then, less nighttime peeing. And he was able to swallow his supplements without choking.

It has taken a year and a half to adjust his dose. Most people seem to be able to adjust to their optimum dose in much less time. The last time we adjusted his dose from 1500mg to 2000mg was about 4 months ago. This dose adjustment was to hopefully help with his bedtime drool. He said it did help. He still drools at night but not as much.

Another symptom that improved with the last adjustment was his speech. It got clearer with 2000mg. He weighs only 123 lbs. so I think we started him on *(5000mg) a day for several weeks. Worked up slowly and several times reduced the dose, then raised it again.

*Should be 500mg/day rather than 5000.

[chartist in reply to ForViolet]

ForViolet,

That is quite a dosing range you have been through and that 5,000 mg is quite high at that weight or any weight for that matter! I am glad to hear that he is seeing continued improvement as he gets close to his optimum dose. How has he done on the "pull test"? That is one of the ways that Dr. Costantini determined when the dose was optimized, a good pull test result in combination with noticeable improvement of symptoms.

I'm always happy to hear that people are improving from PD symptoms! I think that is a major point of this forum, trying to help each other to a better quality of life!

Art

[ForViolet in reply to chartist]

Oh!! I was having trouble dropping my zeros. I had too many 100s, so I edited them to 1000 and added one to the 500 too. Yes, 5000 would have been a whopper.

I did the pull test on him before he started his 500mg dose. Then, after he got to 1000mg he improved. The day after he took his first 500mg dose, he was able to take pills without choking.

I'm unable to redo the pull-test but I'm sure he's doing well with it. We are going with the bed/sleep time drool and his speech for testing.

[reedboat2]

I was on HDT injections for about a year, 2019, pre-COVID. By the end of that year I was noticing diminishing returns. Then in 2020 it was difficult to go to a clinic to get injections. I went off HDT for a year. I started up again with oral use in 2021. Studies I have read indicate improvement in symptoms at 500mg per day Thiamine HCL. That’s what I’m doing now. 250mg in the morning and 250mg in the evening. It seems to help. No noticeable adverse effects.

[FawnLily in reply to reedboat2]

Glad to hear that 500mg is still a therapeutic dose. I am doing 500mg 2x daily but still not sure if that’s correct dose for me. I have gone up to 2000mg daily but have backed down. I am newly diagnosed and on c/l and rasagiline. I have so few symptoms right now it’s difficult to see any changes with B1 dose changes. My biggest issue right now is insomnia and poor sleep quality.

[reedboat2 in reply to FawnLily]

Sleep quality is very important for neuro healing. Going to bed early is the key. 1.5-2 hrs after sunset is the advice of my MD. It’s not easy but my wife and I are moving in that direction. I’m fortunate that I don’t require much in the way of sleep aids. I use Mucuna at night and sometimes Chamomile extract. And Melatonin at bedtime. My wife uses Ambien at times, which I’ve never tried. But whatever you need to do to get a decent amount and quality of sleep is worth it. Best of luck and be well- JG

[Hidden in reply to reedboat2]

I found a number of useful tips in this video -- one has been very effective (too effective) in making me sleepy at bedtime, and that is to reduce lighting in the home starting 2-3 hours before bedtime and then absolutely no bluelight for one hour before (not even filtered by anti-bluelight means):youtu.be/bEbtf7uS6P8(Not working as expected?)

FawnLily may be interested in this too. It's a long video, but it is chaptered.

This episode features Matthew Walker, PhD, who is a professor of neuroscience and psychology at the University of California, Berkeley, and serves as the Director of the Center for Human Sleep Science. Formerly, Dr. Walker served as a professor of psychiatry at the Harvard Medical School.

Walker's research examines the impact of sleep on human health and disease. One area of interest focuses on identifying "vulnerability windows" during a person's life that make them more susceptible to amyloid-beta deposition and, subsequently, Alzheimer's disease later in life.

In this episode, we discuss how sleep plays a critical role in learning and memory, in the regulation of emotions including loneliness, in the function of the immune system, preventing the formation of amyloid beta plaques in the brain and Alzheimer's disease, glucose regulation and insulin sensitivity. We also discuss how certain dietary macronutrients affect sleep, the effect of sleeping pills and alcohol on sleep, the accuracy of sleep trackers, and so much more.

[reedboat2 in reply to Hidden]

Thanks for the Mathew Walker link. Where are you? Alaska?

[Hidden in reply to reedboat2]

Not quite, but daylight savings time really messes us up our winters.

[FawnLily in reply to reedboat2]

I know I need to improve my sleep hygiene. I am at least retired now so don’t need to get up early or set an alarm. I am naturally a night person my whole life so it’s difficult to go to bed early. I seem to be more awake after dinner than after breakfast. I’m really going to try to work at shifting my schedule. Going to bed 2 hours after sunset would be too early here in the winter.

[Hidden in reply to FawnLily]

Both the video that I linked, and this post from Bolt (linked below) about using melatonin for REM sleep behavior disorder, the person's chronotype (whether they are an early bird or a night owl) is the basis for deciding bedtime. If I remember correctly, the researcher in the video I linked even speaks about adverse effects of trying to change your natural chronotype.

healthunlocked.com/cure-par...