Dear all,
My mom who has Parkinson's was on 1500mg B1 oral. We moved from 1000mg to 1500mg and suddenly sleep was a problem. We then stopped B1 Thiamine and for a week. For a day or two after stopping she was doing fine. But then from day 3 to 6 she started having PD symptoms. We started her again on 800mg of oral, she felt fine for three days and today she has cramps and fatigue. Is this a sign of over dosing ? She takes magnesium 400mg daily. She weights around 62Kgs. Thanks
First question, has your mom benefited from B1 at all?
You said she was at 1,000 mg and you moved her dose up to 1500 mg, why did you move her dose up? Was she getting benefit at 1000 mg/day?
The issue of sleep can be caused by taking the second dose later than noon.
Art
Yes we saw her fatigue improving, masked face was almost gone, showed more cognitive sharpness. We moved since her sleep wasn't better at 1000mg, it remained the same as it used to be. At 1500mg, it got worse. Three days in a row she didn't sleep.We supplemented her with 5mg melatonin, she vomitted. Then we stopped all medications for about a week, except c/l. Then after a week's time we started her on 800mg B1. The following days symtoms are what I presented in the question.
thanks
If she was improving or steady at 1000 mg, a 500 mg increase was likely too much or not even needed. Noticeable improvement of symptoms is normal with a dose that is optimal or very close to optimal. It doesn't sound like she was having any problems at 1000 mg/day??? If no problems and some improvement, why alter the dose? Improvements in symptoms do not normally come all at once, but rather individual improvements over time as in months. Trying to speed that process up by needlessly increasing the B1 dose can create unneeded problems. You didn't mention how she is responding to the pull test? That is another step in trying to optimize the dose of B1
If you haven't already read the following link, you should, as it will answer many dosing questions for you :
healthunlocked.com/cure-par...
Stop her dose again for 3 days and see if those two symptoms, cramps and fatigue go away to try and narrow it down.
Lastly, B1 may not improve her sleep and that may not be a reasonable expectation for her or you. It helps in some people and not in others.
Art
I agree with Art: B1 after noon impacts my sleep and I take my two doses (2.5g in total) at 7am and 11.30am. Could the timing of the doses be the reason why your mother’s sleep is disrupted?
Yes you might be right. She was taking her afternoon dose of 500mg around 3 pm. She took 1000mg around 10am. So probably its late enough. However, she says she sleeps well these days at 800mg. Only noticeable effect is fatigue - by which she means an unusual feeling of tiredness in her calf muscles. Makes her feel that she couldn't stand for long.
So it appears that cramps are no longer an issue and the only issue is the feeling of fatigue in the calves. Had she ever had that issue before? If not, stop the current dose for 3 days to see if her muscle fatigue improves. If it improves, the dose is still a bit high. If it doesn't improve, the dose may be a bit low or the problem is caused by something else. In any case you are close to her optimal dose which means potential for further symptom improvements over the coming months. When symptom improvements happen over months, the patient often doesn't notice the improvements because they come on so gradually and it is often friends and family who will notice improvements if they don't see her frequently. That is why Dr. Costantini used regular video recordings to give a clearer idea of how the patient used to be before B1 compared to how they are after each month of use. Reviewing the videos makes the improvements obvious to the patient. Using your phone to make those weekly or monthly videos is easy.
To help narrow down her optimal dose at this point, normally Dr. Costantini would start using the "pull test" as outlined in the previous link I posted.
Your mom is very fortunate because some people simply do not respond to B1 and she is clearly a responder! Keep us posted on your mom's progress.
Art
Thanks for your reply. I will consider your suggestions, to see if the situation improves. Yes, she was better off at 1000mg. One noticeable thing that I would like to mention was, when we stopped 1500mg, following two days immediately after stopping the 1500mg dose she was much better, she told me as if there was no PD at all. Its only by day 3 to day 6 the fatigue returned. Day 7 we started with B1 800mg She was better off and again decline occurred . Makes me wonder if the right dosage is around 1000mg yet again.
Interesting, so this is something to work with when you figure her dose. I might try to get her to 1200 for example. Or she may do well with 1 or 2 day breaks each week. Dr. C used to give some patients breaks didn't he..
What you describe means that the 1500 mg dose is significantly too high.
If sleep remains an issue even at the reduced dose, you can test the full daily dose in one dose in the morning to see if that will resolve the sleep issue.
Art
Great idea. Yes, we will try that.
In one comment by Dr. Costantini, he mentioned that he would almost prefer one single morning dose rather than two, but he felt taking the second dose by noon could significantly lessen the chance for B1 related sleep issues. On the other hand, a couple of forum members have mentioned that B1 actually helps them sleep. Your mother takes her morning dose relatively late in the morning so one dose per day may be doable for her.
Art
I see. We decided to split the dose because we heard that there is better absorption when the dose is split. We recently ordered sublingual and planning to switch to it as the window of possible dosage is shorter.
Yes, that form is usually one pill per day for some people and a very significantly lower dose. Some forum members have reported the thiamine mononitrate form as more effective than the HCI form.
Art
Do you have a suggestion as what could be the starting dose if we were to use sublingual B1?
The best person to ask is forum member Daphne as she has written a book specifically about using melt in the mouth B1 mononitrate. For myself, I would start at 100 mg dissolvable tablet per day. It is thought that it has sublingual absorbability and therefore avoids most gut and first pass loss. Some people using this form of B1 use less or more than 100 mg/day, but to me that is where I would start and pay close attention to how I react to that dosing level. At least one forum member has clearly stated it was significantly more effective than thiamine HCI, the type you are taking.
This is the product :
pureformulas.com/no-shot-b-...
They don't taste very good, but you adjust to the taste fairly quickly and especially if they are effective for you. Imo, it is a more efficient and possibly more effective form of B1 for this particular purpose and it costs the same or less than thiamine HCI.
Art
Great, thanks for all these astounding information!
Agree, Art. My improvements came gradually over a period of 7 months, and B1 has never helped my sleep issues (or tremor) in the 4 years I've been taking it. I've never been able to go higher than 1 g/day, and after being on it for a year, I had to start taking little breaks (usually just one day here and there).
May I ask why you couldn't go above 1g?
Because my PD symptoms begin to return if I take more than 1 gram.
I have been taking Fatty15 for seven months; caused B1 Therepy problems
B1 and anti anxiety pills
High-Dose Thiamine Protocol IM Injections
Giving regular Thiamine HCl / B1 another go, stopping Sublingual B1.
