I have added comments to other posts but not written specifically on the subject of taking B1 sublingually, so, as I had received questions on the subject, I thought I would write a post.
In 2017 when I first read about Dr C it was in connection with treating Parkinson with injections of B1. Injections weren't an option for me, so taking B1 sublingually, so that it enters the bloodstream rather than going through the digestion, seemed the next best thing. I began with one 100mg tablet placed under the tongue each morning, leaving it to dissolve there while I took my shower. After four or five months my friends, independent of each other, remarked that my smile was now reaching my eyes! A sign of the reduction in rigidity. I also had so much more energy that I had enrolled in a couple of classes, painting and Italian. My sense of smell also had returned. At the beginning of 2019, I reduced my intake by missing some days a week. Currently I take a 100mg tablet on Saturday, Sunday, Tuesday, Thursday, - four days out of seven, a dose which suits me now. If I take too much I become hyper, if not enough I am tired. As far as I am aware, Dr C did not comment on sublingual, either for or against. I did write to him to ask his opinion but that was the day he had his stroke so I had no reply.
The sublingual B1 is not HCL, but it doesn't need to be. I believe the HCL version is needed to help the vitamin through the gut, and the sublingual b1 goes straight into the bloodstream not through the gut. You will also notice that not so much is required because when you swallow a capsule or tablet so much gets lost in digestion. I wouldn't like to hazard a guess at how much the equivalent dose between swallow version and sublingual would be, but would suggest that one 100 mg sublingual tablet a day would be a good place to start. If you did decide to increase, do not take more than one tablet at one time as the bloodstream can only absorb so much at one time, I would space them through the day. I have a friend who started on sublingual B1 at the same time as me and had considerably more symptoms, yet one 100 mg tablets helped him as well. It may be that the sublingual version is much more of a one size fits all than the swallow version.
The sublingual B1 comes from 'superior source' and is available from amazon.com, healthmonthly.co.uk, or evitamins.com. They are very inexpensive!
All I can say about them is that they worked for me and if anyone is finding it difficult to find their correct dose in swallow form, they might be worth a try. In fact they have more than "worked for me", they have been a game changer. It is 10 years since my diagnosis. I have lost all rigidity, regained totally my sense of smell, and am full of energy. Currently my only symptom is a slight tremor easily managed by the 200 mg of L-dopa I take a day. I have also noticed that I am still getting better. I keep a check that my dose is right and I'm quite prepared to alter it again if and when necessary.
I hope this helps someone!
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Dap1948
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B1 hcl you swallow and it goes through the gut. B1 sublingual you put under your tongue and it goes into the bloodstream. I chose sublingual originally because I thought it was nearer in method of transfer to the body to injections which is what Dr C started with.
I wasn't expecting to feel better. It was just something I was trying because I'd read this article about an Italian doctor. After two months I looked for classes to join, so I must have had more energy. Then after two more months people remarked on my smile. Soon after that my Bowen therapist said my soft tissue was less rigid. The silly thing was I still didn't attribute it to B1! So as you see it was a slow improvement.
From what I've been reading bitter taste is supposed to be good for you - it stimulates your digestion (think of herbal digestive bitters) and we need to retrain our taste buds because they are used to sweets. So, you may want to think about digestive bitters when having issues with bitter taste and how it might be good for you. Here is one of the many articles on the subject which states: "Bitter foods help stimulate our taste receptors on the tongue, which subsequently stimulates enzyme production and bile flow."
I started in June 2017, had a break during 2018 for six months because stupidly I didn't appreciate that it was the B1 making me better, restarted B1 in swallow tablet form, couldn't find the right dose and returned to sublingual over a year ago.p
I take my B1 by opening capsules and puting straight onto tongue. I came by this by not wanting to consume the capsules and then the dose was to large so opening them to split dose. People complain of taste but in scheme of things it only lasts a few seconds and it works so taste not an issue. Saying that i did try them dissolved and that made bad taste last longer so on the tongue it is. Easy.
Thank you for this incredibly helpful info! What firm do you take your levodopa in? 200mg a day after 10 years is amazing! My dad is on 12 years and requires a lot more levodopa. Have a good day!
About half an hour. B1 first thing and ldopa with breakfast, only because I want to give the B1 time to be absorbed into my bloodstream without other things in my mouth.
No I never took Now. I did try mucuna for a time for half my ldopa daily dose but as I was on such a small daily ldopa dose, and the mucuna wasn't helping my tremor as much as the madopar, and in the UK the madopar is free and I had to buy mucuna, I went back on the madopar for all 200mg!
Thank you. Great post. I think this is now my preferred route for trialling B1. Can i clarify a couple of points?
1)You are 10 years post diagnosis now so were 7 years post when first trying B1 and your medication then and now is 12.5/50 madopar qds (4 times a day)?
2)you tried macuna pruriens in place of madopar at 50mg qds, approximately 1/5 of the equivalent madopar dose, and although you found it a needless expense with no benefit it was equally effective. Or did you take 250mg MP qds?
Yes, i was seven and a half years post dx when I first took B1 and I was on and am still on 12.5/50 madopar 4x daily. I was dx early 2010.
I tried mucuna in place of half my madopar, it was in drop form which I mixed with water. I got it from a local herbalist. It is quite likely that it wasn't equivalent to two madopar, the amount of dopamine in it was a little vague. At the time it didn't remove my tremor. I could have increased the mucuna dose but it was quite expensive though very pure.
I hope this answers your questions. I wish you luck with your B1 trial. Don't expect a sudden noticeable change. It was quite a time before others were noticing improvements in me. It does taste bitter for the first few days. Keep it well under the tongue and this won't be too bad. By day four it didn't bother me.
Thanks. Really helpful again. I have ordered some but probably won't start for a few months. I recently started Doxazosin (earlier than planned), the "new"(?) SPARK trial dosage, and a probiotic with bacillus simplex, and I want to let things settle. There is no great urgency - things are comfortably manageable for now. I will probably try to keep a log, maybe with some videos when I start.
Hi Daphne, Would it be possible to know where you got the mucuna at the time, the one you say was very pure? I'd like to buy it to take along with the B1 (unless you think it's a bad idea), but I read somewhere not all sellers of mucuna are reliable and that some sell stuff that's either not pure or might not even be mucuna at all. We spend so much money on supplements and stuff, and it's so important to get the proper stuff, that I don't want to risk getting it from an unknown source. Thanks.
Thanks. Sorry if I'm a pain, but... I take it that means you don't remember the make or where you got the Mucuna from...? I don't want to assume. Thanks again.
Thank you Dap1948 for this discovery that I hope will make available to all the advantages of b1 with ease of application perhaps even better than I.M. injections.
Hello Dap1948 thanks for this info. I looked up Amazon and found one product which might be the one you recommended but it doesn't say sublingual it says dissolves and it's about $11 per bottle. Are you able to say whether or not this is what I should order? thanks
Thanks Dap for your very enlightening and encouraging posts. I'm off to buy some B1 for my husband (58yo diagnosed 4 years ago, on 8g Ropinirole and 50/12.5 Modopar). He only started the Modopar 10 days ago and the results have not been amazing, in fact his gait is worse than before taking. But he's a fighter so it's got him back into fighting mode - exercising especially. Hopefully B1 should help him along. Do you take B12 by any chance too? Just wondering if he should take them at the same time? Would it hurt to take all 3 (B1, B12 & Modopar) at the same time?
If I remember correctly, the madopar took a time to work, as though it needs time to build up and have an effect.
With reference to gait problems I have a book coming out April 21st which clearly explains how music can be used to improve gait problems amongst other things. It is called "Music as Medicine particularly in Parkinsons" and will be advertised on this forum.
Wow, that was fast! Thank you! Look forward to reading your book my husband loves music and walking so it's an obvious choice to combine them both ! Will get some multi B for a couple of times a week and B1 for every day. As a starter, do you think 100mg is about the right dose? I've just read how complex it is to get the correct dose. Is there any risk that food sources of B1 could "interfer" too?
Maybe I should wait for the Madopar to kick in first?
The B1 dose depends firstly on what sort of B1. If it's B1 hcl which you swallow Dr C was recommending starting on 500mg just before he had his stroke. If you're going to try sublingual B1 then 100mg a day is a reasonable start. It takes some time to arrive so don't wait till the madopar works before you order!
Thanks so much for posting this. I take 100 mg B1 thiamine and arrived at that dose after starting at 500 mg. It has certainly helped my balance and sense of smell. I think I might get more benefit from a higher dose but it makes me jittery. I ordered this and plan to try it. My experience with music is very positive and I look forward to your book! You are inspiring!! Thanks for sharing. Carol
My book will be out April 21st. I will write a big post around that time! I'm hoping it will give people ideas to empower them to reduce some of their symptoms.
Thanks for posting this, Dap. I’ve just ordered the sublingual B1 as we are trying to work out what it is that has been upsetting my husband’s stomach for 6 weeks or so. Narrowed it down to either the B1 or the mucuna. Definitely don’t want it to be the B1, or the mucuna for that matter 😢
Hi Dap. My husband has been cruising along with the sublingual B1 for approx 6 months now, so much easier to take and with good results until recently when his voice has become very week, and that was one of the signs previously to cut back. In your opinion, would it hurt to increase the sublingual dose to maybe 2 at a time , say three times a week to see how he goes?
Just a reminder that many B1 users in the 6 month to 18 month range have shown a propensity to have to either take a mini B1 vacation or slightly reduce the dose if symptoms increase or worsen. Not a ton of data on sublingual B1, but you said,
>>> ' My husband has been cruising along with the sublingual B1 for approx 6 months now, so much easier to take and with good results until recently when his voice has become very week, and that was one of the signs previously to cut back. ' <<<
Your statement falls right in line to the post linked to below.
Sorry I haven’t replied earlier, even carers become ill from time to time 🙂
In fact, when I reread my previous comment, I think I may have answered my own question, and because he now takes the B1 sublingually, who knows what I was thinking at the time, I certainly wasn’t thinking clearly.
Thank you for your reply and for putting me back on track as well as the link to refresh my brain.
You’ve already had a good reply from Art (chartist). I would say that if your husband has had good results at that dose, to try taking a break first. The temptation, when things get worse, is to increase the dose. I know, I have felt this knee-jerk reaction myself. I’ve always managed to resist, and have taken a break instead with good results. Give him three days off, and see how the symptoms are. Good luck
It’s strange how we had been adjusting the powdered B1 dosage so many times over the last 2 years trying to find the optimum amount, yet because it is now sublingual and a smaller dose, I was thinking to increase it? Clearly doesn’t make sense.
We had a conversation awhile back, which I can no longer find, about sublingual B1 tablets. Due to the relatively recent study on the effects of B1 on the inflammatory cytokine IL-17 in terms of very significantly reducing IL-17 (4 fold), I decided to start B1 again at lower dose in the hope of getting this benefit. I decided this time I would try Superior Source Microlingual B1 since I had not previously tried it.
You were quite right, not the greatest taste in the world! My solution to make it slightly more palatable was to pop a couple of the newer and smaller Peppermint Altoids in under the tongue with two of the Microlingual B1 tabs. It does not get rid of the B1 taste, but it does seem to make it more tolerable!
I would be cautious about putting anything else in the mouth with the sublingual tablet because the B1 has to pass through the skin to the bloodstream and having anything else in the mouth could block this action. You will get used to the flavour! It takes less than a week to accept it and a bit longer till you enjoy the flavour!
I think as long as the molecule is small enough, it should be able to pass uninhibited. Since I am mainly trying to replicate the IL-17 study, I should be absorbing more than enough to reach that goal. I know when I was testing oral B1, at 4 grams I developed tremor and I was jittery. I have not reached that point yet with 400 to 600 mg of the microlingual tabs. It is early yet, but there is a slight indication that it is helping me at about two weeks in. The test continues!
...also... 100 mg of sublingual B1 is not necessarily a low dose. I don’t know what quantity would be it’s equivalent in swallowed capsules/tablets but, as nothing is lost in digestion, I would think it would be considerably higher, perhaps 1000 mg. I can only take 100 mg of sublingual every other day.
Just started taking B1 sublingual. I have been sitting here for an hour with it under my tongue. What do I do with the extra saliva? When do I swallow? Please help. Thank you in advance
Instructions...1. Don’t eat or drink anything or clean your teeth for an hour before. I take mine when I wake to get round that.
2. Drink a glass of water
3 Wait ten minutes.
4. Place tablet under tongue. It will dissolve quickly. Try to keep that under the tongue so that it passes through the skin into the bloodstream. Try not to swallow any of the mush down!
Thank you so much for your reply. Yes, starting today. I tried not to swallow. I had tons of saliva in my mouth and I didn't know if I swallow or spit. What do you do?
I manage to swallow without swallowing the mush! I kind of swallow just the saliva that’s at the back. A bit like taking a sneaky swallow at the dentist when I’ve been told not to!Just keep the mush under the tongue for as long as you can up to 30 minutes. Don’t spit it out! It won’t get into the bloodstream that way!
You’re welcome. Did you know I’m writing a book “Parkinson’s and the B1 therapy”? I’ll be putting no spitting in it now! I didn’t think anyone would, but you are not the first to ask!
I'm so sorry to keep bothering you. Today was the second day of taking B1. I kept it under my tongue for half hour. Didn't swallow. After half hour there was quite a bit of spit in my mouth. Do I swallow that?
Yes, swallow after half an hour. That should give a decent amount time for the B1 to pass through the skin. I'm sitting here with a tablet under my tongue as I type! At least you're not complaining at the taste!!
Hi Daphne. Got your book. You say that not to brush your teeth before taking B1. Unfortunately, I have to be out the door very early in the morning. Why is important to take it before brushing teeth? Can I take it 2 hours after breakfast?
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Happy for you!
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