Thiamine Pyrophosphate (TPP) Stopped My Tinnitus!

[Azariah]

Hi everyone.

I'm new here. I've been lurking. This is my first post.

I have had tinnitus since 1985. Yes, 31 years! It has gotten better and worse over that time period--- sometimes to almost unbearable levels, sometimes not so bad--- but never disappeared entirely. That is, until the middle of December 2015! It totally disappeared for almost the first time in 3 decades! I was so shocked by this--- and what seemed to cause its complete remission--- that I decided to come here to share this information.

I am a physicist by training, and have read all kinds of science about tinnitus. Nothing has really seemed to help, though I did notice some correlations about things which made it worse.

I recently read a thread here by EngineerLA where he discusses Eustachian tube inflammation as a cause for tinnitus. I think he's on to something there. I'm not certain, but I suspect that what I am about to share is related to helping decrease inflammation in the Eustachian tubes or nerves.

The miracle substance that helped me is called Thiamine Pyrophosphate (TPP.) This is also known as Coenzymated Vitamin B1, Thiamine Diphosphate, and Thiamine Cocarboxylase. I bought this from a company called Source Naturals on Amazon. I think it was 11 bucks.

Brief primer on TPP:

Thiamine that you ingest in food or supplements is usually some sort of free thiamine compound. Most supplements are Thiamine HCl, and many foods are usually fortified with thiamine mononitrate (like flour and rice.) This is not the ACTIVE form of thiamine in the body, though. Your body needs to attach TWO phosphate groups to free thiamine; TPP then enters the Krebs (Citric Acid) cycle and can be used by the body.

Why did I decide to try taking this?

Well, because of allergies, I don't eat a lot of fortified foods. I suspected I was deficient in thiamine. I figured this out years ago, and have been taking a thiamine supplement for many years---- Thiamine HCl, though. I did not notice much of a difference one way or the other, but was just taking it as a preventive measure. Well, I ran out of that kind. I came across the idea of "activated" B vitamins somewhere in my research, and the logic behind them seemed to make sense to me. Because of genetics, some people can't process Folic Acid into active Folate, for example (those with the MTHFR gene mutation.) I thought "hey, maybe there's similar issue with Thiamine." Anyway, I decided to give it a try.

So, here's what I did. I ordered that supplement mentioned above. Each pill has 25 mg of thiamine, which is like 20 times the USRDA. I decided to start out super slowly, since I didn't know how I would react to it. I crushed the pill up into powder, put the powder into a dropper bottle, and added 200 drops of water. I started out taking 1 drop a day, which was like 0.08 mg of TPP (about 1/15 the USRDA.) Then over the course of a few weeks, I upped it to the USRDA.

Within about two days of starting this protocol, my tinnitus totally disappeared! After 31 years!

The tinnitus remained gone a long as I was on this protocol, for about a month. Then, I stopped taking the TPP because I got a cold and thought that that might have had something to do with it.

Within two days the tinnitus came back.

Three days ago, I started back on it, but the tinnitus has not disappeared yet. I'm still on a super low dose, and will slowly increase over the next week. I have hope that I will have a similar result the second time around.

I have some thoughts about what TPP does and why it has seemed to help, but I'll leave that for another post.

I just wanted to share this.

 

[Cheza]

Seems to have decent reviews as far as being a B vitamin.

Link to Amazon: http://www.amazon.com/Source-Naturals-Coenzymated-25mg-Tablets/dp/B000K96XPC/

Link to iHerb: http://www.iherb.com/source-naturals-coenzymated-b-1-60-tablets/1077

 

[Azariah]

Yes, Cheza, that's the stuff.

I shared it with a local friend who has had tinnitus in one ear for about 6 months. It, sadly, did not help him.

Those of us who have been dealing with this for years know that there are many different causes, and not every treatment will work for everyone. I'm hopeful TPP will help someone as it has helped me.

I'd appreciate any feedback if anyone decides to try it.

 

[Karl28]

So do you have issues with your eustachian tubes Azaria?

Also looking at that Amazon link there seems to be two types of this specific Source Naturals Coenzymated B-1 ?

The other being a pink bottle Sublingual Tablets so under the tongue?

Maybe im looking at the same product im confused.
Both go under the tongue?

 

[Azariah]

Karl28:

I don't know for SURE that I have Eustachian tube issues. However, part of the comorbidity with my tinnitus is a physical feeling of fullness in the ear like I'm kind of under water, which is actually sort of uncomfortable. If I squint my eyes or kind of tense up the muscles inside my ears, it feels similar to there being water from a swimming pool in there, or like it might feel when you're on an airplane, except swallowing doesn't fix it. It is constant, and actually mildly painful--- very very mildly, but still. From what I've read, this second symptom--- fullness and pressure--- is a dead giveaway that the Eustachian tube may be involved.

I didn't really go into my history with T. It started in 1985 or so. At first, it was just after loud noises, like a concert. It would go away after a few days. Then it would take longer. Then it was just always there. I'd many years ago given up hope that anything would help this. Even medium level sound would make it worse--- like in a movie theater or using the vacuum cleaner. So, I just always keep a jar of earplugs everywhere--- in my car, in the living room--- and kind of learned to live with it. For many years, it was an annoyance which I tolerated, but then this last two years it got worse. I even had to quit playing the guitar--- a great regret, as I had been a professional musician (not full time, but still got paid for my music.) That was a joy in my life that I had to give up. Think about the thing you love doing the most in the world, the thing that you do EVERY DAY because it makes you HAPPY, then realizing you have to stop because it is apparently hurting you. (The tinnitus would become unbearably worse after just 10 minutes playing at moderate volume. Then that new level would not dissipate for, sometimes, weeks. The level of tinnitus would go from like a 4 to a 10 after 10 minutes of playing, then not subside for a month. Then it would eventually settle down. I would miss playing the guitar, and try again. Misery would ensue. Every time. I finally gave up playing altogether.)

The worst part of this, as many know, is the fear that it would progress into something worse, like deafness. This is why I quit playing music.

This last fall, the tinnitus reached a new level of misery... going from what was like a constant 4 to a constant 8 to 10. I don't know why, after 30 years, it would do this.

This is why it was such a shocker that after starting this vitamin B1 supplement the tinnitus would entirely disappear. After a week of it being gone, I even tried playing the guitar again. No tinnitus! I pushed it and even upped the volume to what would be considered "loud." No tinnitus!!! Understand, this has been a CONSTANT problem for 30 years, with almost no periods of silence. It was like a weight had been lifted.

Then I quit taking the supplement after a month. Return of tinnitus in 2 days.

Now I've started taking it again, but the tinnitus has not disappeared. I'm hopeful that it will, but I will certainly report back here either way. The tinnitus does seem, perhaps, a LITTLE muted since I've resumed this a few days ago, but it's still there, as is the feeling of fullness.

As far as the type of B1 from Amazon: The one I have is in a blue labeled bottle. It is also sublingual. I don't know what the difference is between the blue and pink label. I went to the Source Naturals website, and they only have one with a blue label. I suspect (though I can't be sure) that they are the same product, but the pink label is an older label and now they've upgraded to a blue label. That's just a guess. In any event, the one I have been using is sublingual and has a blue label on it. I hope that is helpful.

 

[Azariah]

I've been lurking here, as I said, for a while, and I also just want to say, to the folks whose tinnitus has started recently, that while it's bad, it is entirely possible to get used to it and live a fairly normal life with it. I'm not saying you SHOULD--- if you can fix it, then fix it!!!!! I don't wish 30 years of tinnitus on ANYONE! My point is one of hope, though. You CAN still live a good life with it for many years.

Yes, it totally sucks I have had to quit playing music. Really sucks. But I'm still walking around, doing many other enjoyable things. Having relationships. Working.

The worst part of it is the fear, fear that things will get worse. But here's the thing: Either things will get worse, or they won't. Either way, it's only this moment that you have to deal with. It's been a real growth experience for me, very Zen. Three decades of dealing with this has brought me to this point.

I've sort of looked at tinnitus and sound the way a very pale friend of mine looks at the sun. For me, one of my great joys is spending the day at the beach, feeling the sun on my skin for hours. I can burn, but not easily. For my Irish friend, the sun is an enemy. He can't go out at solar noon for more than 10 minutes without getting a blistering sunburn that takes weeks to heal. He simply can't experience the joy I feel being out at high noon without sunblock without paying a price. I kind of look at my relationship with loud noises the same way. So I can't go to concerts or play music--- for whatever reason, my body (right now) can't handle that without damage.

But I can go out in the sun for hours!

Nevertheless, I am hopeful that TPP will again return the silence to me that I experienced in December.

 

[RaZaH]

This is quite amazing ...how did you not completely lose it when T disappeared after 30 years

 

[Azariah]

RaZaH:

It was more a sense of ease that came over me. Like a great RELIEF! There is a very low level of stress that comes along with T--- very subtle, but it's there. When it stopped, it was like I could finally RELAX!

After a few days, it felt like the new normal! I was actually ecstatic! I just felt so full of life. I blasted music in the car. Played my guitar again--- Jimi Hendrix loud! The thing is, your body, somewhere deep inside, intuitively KNOWS what it feels like to feel normal. So it just felt... normal! I mean, there was a period in my life (many years ago) when I DIDN'T HAVE TINNITUS. It felt like that---- like a distant memory of happiness.

 

[RaZaH]

@Azariah man , must have been awesome .
And yeah I totally know what you mean about the "normal" thing ..I miss that soooooo much .
Musician myself , still trying to not give it up , my whole life is music and has always been.

For how long did this silence stay with you ? Has this stuff had any effect since starting again ?

 

[Azariah]

@RaZaH

It was totally gone for about 4 weeks. Not only was the tinnitus gone, but the hyperacusis was gone as well. Meaning, before a loud noise would not only make the tinnitus worse, but it would also feel like someone smacked me in the head. My ears would sort of flinch or tense up (on the inside-- I could feel this) when a loud noise would come. Super sensitive to noise. That also was gone!

All that stuff came back again two days after stopping the supplement.

Since starting again four days ago, the tinnitus seems to, maybe, have become a slight bit less intense. The feeling of fullness in my ears is still there.

It's interesting, because last time, in December, the tinnitus disappeared almost immediately, within a day or two, of starting a very low level of TPP. As of now, I've built up to a level HIGHER than I had been taking at the beginning of December, and the T has not disappeared.

Here is where the fear comes is: Will it work again? Will I ever get that beautiful silence again, or will those four weeks be a one time gift and another 30 years of T is ahead of me?

I have no idea. I do know this, though, which gives me hope that I'm on to something: Within a day of starting this stuff (for other reasons, NOT T--- which is why I discount the placebo effect here--- I was not expecting this to help with T at all) my 30 years of T disappeared. Within two days of stopping it, the T reappeared.

I have hope!

I totally feel for you, being a fellow musician. It's probably tougher for you, that being your career and life. That's tough business. I still do my physics and teaching, and the T hasn't affected that---though I still miss the joy of playing and recording. All I would say is to try to make accommodations as best you can--- keep the volume lower than you might want to, if loud noises affect your T. Wear earplugs in your non-musical life and avoid all non-musical loud noises (vacuum cleaner, movie theaters.) Save your ears for your music. I read that Clapton has T constantly. He still manages to play and record. You can't predict what the future will bring. You can only deal with what's in front of you this moment.

Oh! One thing which did help me for a while was buying custom made musician's ear plugs that are attenuated equally at each frequency. They were expensive (like $200) but worth it! Cheap ear plugs that you buy at the pharmacy attenuate (meaning deaden) higher frequencies more than lower ones--- so sounds are distorted and sound muffled. These custom earplugs (they take a wax impression of your ear canal) make every frequency less loud EQUALLY--- which means that the music still sounds the SAME, just at a lower volume! That way, if you need to play in a band and they (obviously!) can't turn the volume down, you can still play with them, get every nuance, but just have it be less loud in your ears.

I'll see if I can find the information on them if you want.

 

[RaZaH]

Here is where the fear comes is: Will it work again? Will I ever get that beautiful silence again, or will those four weeks be a one time gift and another 30 years of T is ahead of me?

I am rooting for you , bigtime !

I have stopped playing live , I did music for game trailers and such , producing mostly in the studio.
I have 3 speaker systems , tiny Avantones ,Adam midsize and then a large system with a sub.
Ironically I did/do all my work on the tiny system at such low levels that it annoys people working with me. Still got tinnitus ....so.

 

[stewart_uk]

I wonder whether your initial technique of dissolving the tablet in water had an effect as this vitamin is water soluble it may have got into your bloodstream better?

 

[Bertman]

@Azariah update?

 

[vttbx]

Always happy to see someone get relief especially after 35 years of suffering. But I'm a bit skeptical on your logic of discovering an obscure B vitamin has never been used to treat T to my knowledge. Never the less, I'll order it and add it to my "I'll try everything" list.

 

[Jahhsoul]

Always happy to see someone get relief especially after 35 years of suffering. But I'm a bit skeptical on your logic of discovering an obscure B vitamin has never been used to treat T to my knowledge. Never the less, I'll order it and add it to my "I'll try everything" list.

Keep us informed please ^^

 

[stewart_uk]

Although Vitamin b1 is fairly common the coenzynated form is really quite new commercially. The coenzynated part means the b1 has already been converted into a form the body uses in the bloodstream. The argument being that some people may not be able to convert b1 well.

I'm on day 3 of trying it, No change yet.

 

[Philip]

Wow what a great story but also sad how you ended up back in the tinnitus strait jacket.

I think my tinnitus is also eustachian tube related.

Mentally I think you have the right idea... go with the flow.

I am in a good mental place with my T these days.

The last scare was back in June last year when I decided to finish my drink in a place I knew was way too loud.

Off the charts the next day...I could feel the panic creep up on me. "will I be able to keep livi...STOP thinking like that"....but I said to myself either it goes back down or it doesn't. You gotta take every moment as it comes.

Its how you react to your T that is often the biggest problem.

If a chemical cure came along Im not so sure I'd trade my current peace of mind for a life times dependence on a very new medicine.

 

[Codaz]

Informative post. So this is not a drug but a supplement?

 

[Henry1492]

Dear readers:

I purchased the above product two months ago from Amazon:
http://www.amazon.com/Source-Naturals-Coenzymated-25mg-Tablets/dp/B000K96XPC/

I am on one sublingual pill per day. After 10 days my Tinnitus decreased to about one third of initial volume. It did not cure my Tinnitus, but improved my condition significantly. I am very happy.

I recommend the above product to everyone. It costs only 7 dollars per months, including the postage, which is nothing compared to exorbitant fees scammers like Dr. Shemesh and Dr. Wilden charge.

I will keep you posted.

 

[Mithrandir]

That's a great new Henry ! But don't car about Shemesh & Wilden, just enjoy the decrease !

 

[Cityjohn]

I recently read a thread here by EngineerLA where he discusses Eustachian tube inflammation as a cause for tinnitus. I think he's on to something there. I'm not certain, but I suspect that what I am about to share is related to helping decrease inflammation in the Eustachian tubes or nerves.

That's actually quite an interesting hypothesis. Ever since my tinnitus (and massive headaches) started after eating I felt like one of the few reasonable explanations was an inflammation in the sphenoid sinus or eustachian tubes. Especially since my right side hurts most and has the loudest tinnitus. Yet sadly also structurally more hearing damage in the higher frequencies so the ototoxicity claim my ENT made still holds up well.

I don't know for SURE that I have Eustachian tube issues. However, part of the comorbidity with my tinnitus is a physical feeling of fullness in the ear like I'm kind of under water, which is actually sort of uncomfortable. If I squint my eyes or kind of tense up the muscles inside my ears, it feels similar to there being water from a swimming pool in there, or like it might feel when you're on an airplane, except swallowing doesn't fix it. It is constant, and actually mildly painful--- very very mildly, but still. From what I've read, this second symptom--- fullness and pressure--- is a dead giveaway that the Eustachian tube may be involved.

I have been annoyed to death by possibly the exact same sensation. I don't feel any water leaving my ear but the eardrum seems to produce the same crackling sounds as if I just came our of water, @Azariah is this the sensation you also have? It happens every time I yawn or turn around but a little inconsistently. Two days ago I went temporarily deaf in one ear twice and after that I didn't have it for an entire day.
I've been trying to figure out what could possibly produce this sound with autopsy images but it's unclear. It sounds like the sound could come from the ossicle tendons. I compare it to the crackling joints produce sometimes.

Congratulations with the good news.

 

[swc5150]

I just ordered some, and will keep everyone posted on how it works for me. This time of year, my allergies kick in hard, making my T get louder.

 

[Cityjohn]

Just my luck... can't find it anywhere in the Netherlands and Amazon doesn't ship to my address..

 

[undecided]

Oh come on... It's a B1 vitamin. Just go to your local pharmacy and you'll find some. They sometimes hand them out as free samples when you buy something expensive.
SPOILER: it will not do much.

 

[Bobby B]

@Henry1492

Maybe dr Shemesh was onto something after all - he is the one who claimed that vitamin b pills will help reduce tinnitus and "scammed " people with his pills but now you claim that vitamin b pills reduced you t by 1/3 !

How ironic after all the posts you wrote on him...
Next thing we know a 7 dollars laser pointer will finish off the 2/3 leftover of your tinnitus

I have the same pills at home , tryed it once like the op said and felt no difference but perhaps it needs more days so will do 10 . It does taste nice at least.

 

[Cityjohn]

Oh come on... It's a B1 vitamin. Just go to your local pharmacy and you'll find some. They sometimes hand them out as free samples when you buy something expensive.
SPOILER: it will not do much.

I was looking for Thiamine pyrophosphate, Cocarboxylase, or B-1 co enzymes. I can find them but they're packaged in low doses in a big pill with a load of other crap and that would be a bad experiment.
If it doesn't do much that's a good thing, if the lack of effect was recorded under controlled conditions with exact symptoms we will have made the list of possible treatments smaller and thus easier to find.

 

[mintblue]

Just ordered some. Let's see what happens!

 

[click]

@RaZaH

It was totally gone for about 4 weeks. Not only was the tinnitus gone, but the hyperacusis was gone as well. Meaning, before a loud noise would not only make the tinnitus worse, but it would also feel like someone smacked me in the head. My ears would sort of flinch or tense up (on the inside-- I could feel this) when a loud noise would come. Super sensitive to noise. That also was gone!

All that stuff came back again two days after stopping the supplement.

Since starting again four days ago, the tinnitus seems to, maybe, have become a slight bit less intense. The feeling of fullness in my ears is still there.

It's interesting, because last time, in December, tyhe tinnitus disappeared almost immediately, within a day or two, of starting a very low level of TPP. As of now, I've built up to a level HIGHER than I had been taking at the beginning of December, and the T has not disappeared.

Here is where the fear comes is: Will it work again? Will I ever get that beautiful silence again, or will those four weeks be a one time gift and another 30 years of T is ahead of me?

I have no idea. I do know this, though, which gives me hope that I'm on to something: Within a day of starting this stuff (for other reasons, NOT T--- which is why I discount the placebo effect here--- I was not expecting this to help with T at all) my 30 years of T disappeared. Within two days of stopping it, the T reappeared.

I have hope!.

@Azariah - did the T go away again? Nothing from you since February...

 

[Azariah]

Hello Everybody!

Folks have been asking for updates as to how I'm doing with the TPP. Here's how things are going, as well as some new thoughts about tinnitus, thiamine, TPP, magnesium and the citric acid cycle, and some new experiences.

The last time I posted on February 19, 2016 I had stopped the TPP; the tinnitus came back in a few days. I then slowly started taking it again and the tinnitus did not disappear, but it did get less severe.

Since then I've been reading a lot, and had some other experiences that I wanted to share.

Right now, today, I am taking about 0.50 mg of TPP per day. (Yes, that it a very small amount--- less than half of the USRDA for thiamine. I'll explain below.) My tinnitus is about 1/3 what it was when I started TPP, but it has not fully resolved itself like it had for a month in December of 2015. Even so, understand: this is a major improvement! I am significantly less noise sensitive, though I still am. The feeling of fullness in my ears has not entirely resolved, though it does seem better.

In short, the TPP has improved my quality of life. I feel like I'm onto something, and I'm going to figure this out biochemically. Because, you see....

In my "real life" I am a scientist. I stumbled upon this treatment almost by accident, but now my experience has convinced me that the effect of it is real. I've been learning as much about the biochemistry of this as possible.

Here are couple other personal anecdotes which have given me some more clues:

There are two reasons I stopped taking TPP the first time and one subsequent time that I haven't mentioned yet: First, it seemed to initiate a systemic yeast infection. The second time I started increasing the dose, I proceeded to become seriously constipated.

The second time (when I became constipated) I stopped the TPP and starting taking a supplement which had helped me in the past with that issue: Magnesium citrate. Although the constipation resolved, the tinnitus became much more severe in less than a day. (I have tested this a couple times since--- there is something about citrate that affects my T negatively.)

Another thing I have noticed, personally, is that when I exercise a lot (run a mile, for example) my T gets worse.

Here are my theories about this. (Understand, these are just theories at this point):

Tinnitus (at least mine) is related to the energy production of the citric acid cycle and (possibly) the accumulation of lactic acid. The citric acid cycle is the biochemical cycle in the body that produces energy... well, one of two cycles. The lactic acid cycle is the other. (This is about to get science-y.) There is a substance called pyruvate (which your body makes from glucose) which is the input molecule for both the energy producing citric acid cycle and the lactic acid cycle. Pyruvate has two options: it can enter the citric acid cycle if there is enough oxygen or cofactors, or it can enter the anaerobic cycle (ie. lactic acid cycle) if there is not enough oxygen or cofactors. It preferentially enters the citric acid cycle because you get more energy out during that cycle. A normal body typically only shunts pyruvate to the lactic acid cycle when there is not enough oxygen around. This happens when your muscles have been exercising a lot, like lifting weights hard or running a long time. When this happens, lactic acid builds up in your muscles-- lactic acid is the chemical that makes your muscles start to become sore and burn. Anyone who has ever exercised for a long time knows this burning muscle feeling. That is lactic acid buildup.

Here's the thing, OK? Guess what molecule is needed to convert pyruvate into acetyl CoA (which is the actual molecule that enters the citric acid cycle)? Thiamine Pyrophosphate! Yes, that's right, TPP is needed to shunt pyruvate into the citric acid cycle.

Here's my thought:

If there is NOT ENOUGH TPP, then pyruvate will enter the lactic acid cycle instead. This will cause an accumulation of lactate, which, I theorize, may be a cause of tinnitus. Just as a build up of lactic acid causes sore muscles during exercise, a buildup of lactic acid in the ear can cause tinnitus. Or, if not that, at least the lack of aerobic energy produced when the citric acid cycle is not working properly.

This theory would explain a few things I've observed:

Exercise makes my T worse. (During heavy exercise, as mentioned, the lactic acid cycle is engaged.)
Citrate makes my T worse. (If you look at the citric acid cycle, the next step after Acetyl CoA is a conversion to citric acid. If you supplement extra citric acid, this gums up the works and will shunt pyruvate to the lactic acid path--- that's my theory.) (Google citric acid cycle and you can see the biochemistry yourself.)

OK, so why would supplementing TPP cause constipation?

Because TPP now has turned on the citric acid cycle to help it run more optimally--- but magnesium is also needed in that cycle. If you are taking extra TPP, your body now also is using more magnesium since the citric acid cycle is working again. Lack of magnesium can cause constipation.

If my lactic acid theory is correct, then that would also explain why TPP doesn't work for everyone. There are a LOT of reasons (biochemical reasons) why the citric acid cycle might not be working properly. For example, magnesium is needed, as well as coenzyme Q10. If TPP does not work for you then maybe that isn't the spot in the citric acid cycle that you have a problem with.

Finally, here is a new thing I came upon: There is a supplement called benfotiamine-- a thiamine analog--- that is supposed to increase TPP in the cell more than taking just extra TPP alone. (In fact, I've read that taking supplemental TPP actually doesn't increase TPP within the cell. I don't know what to say about that, since TPP has definitely helped me when regular thiamine didn't.) Benfotiamine Is is used extensively to treat diabetics and nerve pain-- there's good research that it increases TPP within the cell. I'll write more about this in another post. That is the next thing I'm thinking of trying.

For now, I'm trying to up my magnesium intake and slowly increase my TPP intake.

I'd be curious to know if exercise makes your T worse.. or if anyone has any other symptoms besides T, like sore muscles or fatigue.

I hope this was helpful to everyone!

 

[Azariah]

By the way, there is another way pyruvate can be produced and enter the citric acid cycle: The processing of branched chain amino acids: valine, leucine and isoleucine. TPP is needed for this reaction as well!