I've been taking high-dose thiamine HCl since early November of 2018. I began by taking 500 mg/day for several months, then increased to 1 gram/day. I've tried to increase my dose many times over the years to see if I might experience even more improvements, but that has always quickly resulted in a significant return/worsening of my symptoms (increased tremor, severe fatigue, left leg drag, no left arm swing, urinary urge incontinence, headaches and joint pain, apathy, brain fog, and word-recall problems). As long as I've stayed on B1 at 1 gram/day, my only symptoms have been left-side (primarily left hand/arm) tremor, moderate bradykinesia, and occasional mild dystonia (which are all eliminated with mucuna plus carbidopa, when I choose to take it). FYI, I have also experienced some major depression and anxiety, but that's totally controlled by taking mannitol.
Over the past 2 months, I've been experiencing brain fog, fatigue, urinary urge incontinence, and very noticeable word-recall problems. It was really scaring me because it felt like the B1 wasn't working anymore and my PD was suddenly progressing.
I decided to try increasing my B1 dose to 1500 mg/day, and I started to feel better. I then increased to 2 grams/day, and all of my symptoms have again resolved with the exception of my "normal" left-side issues. I've been taking 2 grams/day for almost 2 weeks now and am feeling great again.
I've been wondering if my increased need for B1 could be the result of my taking mucuna plus carbidopa since the end of September 2022. I don't know, but I thought someone might find my story interesting and/or helpful.
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1LittleWillow
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Apparently my need for B1, which held steady for over 4 years, increased recently. I don't know why. Possibly due to other supplement/medication changes, possibly due to the way I'm metabolizing the B1 (e.g. gut health), possibly because of disease progression? I have no idea.
Yes, I've generally taken about 400-600 mg/day. I usually take malate or citrate in the morning, threonate in the afternoon, and glycinate at bedtime, but I take other forms every once in a while just to get some more variety.
That's why the amount that I take varies. If I'm eating a lot of magnesium-rich foods, then I take a bit less. There are occasional days when I skip it altogether. I base a lot of what I do on how I feel each day. I'm not trying to tell anyone else what to take or how much to take. I think the need for supplements is highly individualized.
I appreciate your concern, but I generally just go by how I feel and what my body is telling me. I've been doing this for almost five years and have taken various supplements throughout my life prior to my PD diagnosis, and it's going pretty well, all things considered. I've also had blood work done, and everything looks good. I prefer not to mess with success lol.
Early signs of excessive magnesium intake can include low blood pressure, facial flushing, depression, urine retention, and fatigue. Eventually, if untreated, these symptoms can worsen and include muscle weakness, difficulty breathing, irregular heartbeat.
Doses less than 350 mg daily are safe for most adults. In some people, magnesium might cause stomach upset, nausea, vomiting, diarrhea, and other side effects. When taken in very large amounts (greater than 350 mg daily), magnesium is POSSIBLY UNSAFE.
I am taking 2 grams a day since a couple of months. I have stated taking b1 in February and have increased from 1 to 2 slowly. I also think it depends on body mass , kg. I am quite tall and big build and definitely not slim .
Last month I went to see Dr Fancellu in Italy, I am Italian but I live in Portugal, Dr fancellu worked with Dr Costantini, the Dr that discovered the vitamin b1 therapy for PD.
He suggested, Dr Fancellu, that I should take 3 gr. Per day but it is impossible for me because there’s a side effect that I don’t like , meaning by taking vitamin b1 in 3 gr a day dose , I need to go to the toilet every 10 minutes as I find it strongly diuretic, so I have returned to 2 gr a day for the time being. I will try and see if I can increase by taking another half gr in the night without side effects.
When I first started taking 1 gram per day (in 2019), the benefits continued to increase for 7 months before they finally plateaud. They then remained fairly constant for 4 years.
May I ask what is name of the the city in Italy Dr Francellu practices in? I can look him up. I live in the US but would travel there in order to see him. I was diagnosed in 2005 other than the “ frozen feet “ I have recently developed I’ve been okay through out the years except when I play around myself with the doses, thus the interest in seeing him in person. Thx
Can you tell me how you drink 2gr B1? I was taking 500 grams of B1 along with levodopa every 4 hours, but I had rubber legs. Now I drink 1 gram before lunch and 1 gram after. It's always around 4pm when I get home from work. What is the right way to take it? Best regards.
I usually take 2 to 3 teaspoons per day (sorry for my English measurements, I don't know how many grams that is). I divide the doses throughout the day. I don't take it all at one time.
interesting, I mirror your symptoms dates and timings with B1, all right side, have been toying with moving up to 1500mg recently. will try anything to ease tremor.
MY PARKINSONS NURSE AT MY REQUEST, PUT ME ON 1 MG PER DAY OF RASAGILINE WHICH HELPED MY R/H TREMOR CONSIDERABLY PLUS MADE ME A BETTER PERSON TO LIVE WITH-SO MY WIFE TELLS PEOPLE!! - MAYBE WORTH A TRY. GOOD LUCK .
B1 has never helped my tremor. It helps all of my other symptoms, but not my tremor or bradykinesia. I occasionally get mild dystonia, and it seems to help that a little, but it doesn't eliminate it either.
good news but probably short term lease,I hope not in your case.problem is everyone DNA structure responses different way to these vitamins.i started with 4oo a day until 2000 barrier mg result was tremendous success until 2 weeks past,than square one again. it is dependent on your age also your body systems responses. I changed my diet became vegetarian and I used take 250mg stalevo every 3 hours as a young on set patient, now I m down 50 mg every 3 hours.what I figured out las 6 years which is I my Parkinson's appeared, stay away from stress,all types meats and junk foods also alcohol, unfortunately difficult but you got to do it if you want manage your illness.
I appreciate your telling us of your experience with B1. I am constantly updating my understanding of the therapy. I wonder if you belong to my facebook group?
I haven't come across anyone who has successfully increased their dose overtime. Most have a similar experience to the one you had initially if they try to increase - worsening symptoms we like to call 'overdose' symptoms.
Presumably you didn't consider trying a reduced dosage? When I started B1 six years ago I was on a dose 28 times greater than I now take. I reduced it in steps everytime my symptoms worsened a little. By reducing the dose I have managed to maintain my good results for six years. My doctor says that I am a-symptomatic. Not bad for over 13 years since diagnosis.
would you mind sharing if you take medication or mucuna and how much how often? When your doc says you are asymptomatic is that when on medication? Thsnk you so much! Just for information purposes not to replicate what you do. Trying to figure out some stuff for my hwp.
I take 250 mg a day of levodopa meds a day (100 mg, 100 mg and 50 mg). I sometimes have a bit of a tremor late at night but wake up without a tremor. I have no rigidity or bradykinesia anymore thanks to this now very tiny dose of B1.
Hi Daphne I write from Italy and I bought your book which I read with interest. If the purpose of Vit. B1 is the replacement of Levodopa in the treatment of symptoms of PD and you are taking a small amount of Thiamine, don't you think you can increase it and go down from the 250mg. of Levodopa? Sorry
Thiamine doesn’t replace dopamine, that’s what your meds do. I am not myself a scientist, but Dr C suggested that thiamine saves ailing neurons and encourages them to function once more. In Parkinson’s, individuals seem to have a threshold, which, if you go over, causes over stimulation. This seems to increase agitation, tremors, disturbs sleep etc. What I’m saying is that levodopa and thiamine do different jobs.
Yes, I'm a member of your group and Roy's as well (have been for years).
When I take mucuna, my MDS says that I'm asymptomatic (I just saw him last month), so it sounds like we're pretty similar. My UPDRS last month (on mucuna) was 1. He says that I'm actually doing much better than his patients who take Sinemet, which both surprised and encouraged me. I had taken Sinemet for only 2 months and probably never really reached a therapeutic dose, but my UPDRS while on it was 37. My UPDRS on mucuna without carbidopa was in the teens.
I've tried reducing my B1 dosage in the past many times, but my symptoms that are so completely controlled by B1 always come back. One gram/day has been a constant for me for 4 1/2 years. I did try reducing my dosage when my symptoms started to get bad a couple of months ago, but it just made it much worse. As I said, I finally decided to try increasing my dose instead, and I am feeling really great (again) now. If I notice any more changes as time goes on, I will definitely share them here.
Hmmmm... I was just thinking back on old symptoms, and I actually HAVE experienced tremor reduction from B1 because I no longer have internal tremors or slight tremor in my jaw (left/affected side) and tongue that I had early on after my diagnosis. 😊
Hello - I am fairly new to this forum so I hope you will forgive me if I am asking too basic a question. You say that your remaining symptoms are eliminated by taking Mucuna plus carbidopa if you choose to take them. I am curious as to why you should choose not to take them if they have such a positive effect.
My symptoms just aren't that bad, and because I have to time my B-complex supplement (because of the B6) and protein intake so as not to interfere with the L-dopa, it's simpler to NOT take it. I prefer to only take mucuna when I want to be 100% tremor-free. If I'm at home cleaning, cooking, hanging out with my family, etc, the tremor just isn't that big of a deal (yet). The other day, I was able to install new fill valves on two of our toilets without any meds--I generally function pretty well without it unless I'm trying to do really fine motor stuff. I was diagnosed in August of 2018, and I am basically at exactly the same level of functioning (and in some ways better) than I was at that time. My tremor is a little more pronounced now, but not much. When it gets to the point in the future that it's really bothering me, then I suppose I will take mucuna on a regular basis.
Editing to add that I do take it when I'm going out shopping because I get a bit self-conscious with the tremor (I'm an introvert, so I REALLY don't like to draw attention to myself), and I definitely take it if I have doctor or dentist appointments or social gatherings.
Yes, I'm still taking 2 grams/day and feeling great. My energy levels are back to normal, and all of my symptoms (except tremor) are definitely gone again.
I have no explanation for it. The only things that have changed (relatively) recently are that I started adding carbidopa to my mucuna at the end of September, and I started using an estrogen patch a few months ago. All of the other supplements I take have remained the same. I had been experimenting with citicoline, but my results became too unpredictable, so I've been taking a break from that for now.
What have been your side effects from the thiamine? I get a warm sweating feeling from my head. I am just starting the thiamine and am doing it sublingual because I had some stomach issues from the pills. Thanks in advance
I don't experience any side effects from B1 (thiamine HCl). If I take too much, my Parkinson's symptoms that go away with the correct/optimal dose start to reappear, but that's an "overdose" reaction, not really a side effect.
Yes, I'm planning on writing a follow-up post! I have more/new info to share as of this past week. I just haven't had time yet because we had company this weekend, and now I'm trying to get caught up on laundry, grocery shopping, etc. 😜
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B1 and FUS reduced 95% of my Parkinson
New website to share information about high dose thiamine(B1) therapy: www.B14PD.com
