Thiamine Pyrophosphate (TPP) Stopped My Tinnitus!

I look forward to your report!

 

I just got my bottle. Instead of crushing the pill, I divided it into 3 parts and will try doing 1/3 pill, 3 times daily. The problem is the pill takes forever to dissolve sublingually. Do I wait until it is completely dissolved or can I swallow it, say, after 1-2 minutes?

 

Hi BBApple--

I have no idea. I would follow the instructions on the bottle.

I suspect if you chew it up and then swallow it, it would PROBABLY work just fine. But who knows? (I mean, I basically chew mine up and dissolve it in water.)

The only issue with swallowing it whole as far as I can see is that there is chance it might not dissolve fully in your stomach and then you would not get the full dose.

How is it working for you?

-Az

 

@Azariah could you explain briefly the connection btw snoring and t, and does this theory means stopping the former would improve the latter?
@Samantha R / me were talking about our snoring...mine started with t...

Thanks

 

Hi Candy--

Here is my understanding.

Snoring is often associated with sleep apnea. That is, if you snore, there is a good chance you have sleep apnea. Sleep apnea is where you stop breathing while you are sleeping. When this happens, your body will release a shot of adrenaline to wake you up so you don't suffocate. You will wake up very briefly, take a gulp of air, then fall back asleep. (You don't actually remember this happening.) This waking up happens to everyone--- but usually less than 5 times an hour. If this happens to you more than 5 times an hour, you have sleep apnea. For some people, this can happen 30-60 times an hour. That is, you are waking up every one to two minutes for eight hours straight!

What this means is that you never reach the deep, restorative levels of sleep. You're always in level 1 or 2 sleep--- drowsy. You never get the restorative hormones. You're flooded with stress hormones every two minutes every single night instead. You wake feeling exhausted.

There is a solution for this: Using something called a CPAP machine. This is a forced air machine that pushes air into your throat all night. Your throat never closes, you get oxygen, and you can get good restorative sleep.

As folks who have T know, stress can make T worse. There hasn't been a lot of research on this, but anecdotal stories I've read are that those who have sleep apnea and use the CPAP machine oftentimes have an improvement in their T.

This last July (2016) I was diagnosed with severe sleep apnea. I was waking up 30 times an hour during non REM sleep and 60 times an hour during REM sleep. (This would explain why I never remembered my dreams.) Since using the CPAP machine I feel so much better. It's totally changed my life--- I eel more energetic, awake and able to think. It hasn't affected my T though--- that had already improved with the TPP.

I hope this was helpful.

It's totally worth getting tested for sleep apnea. Like 40% of men and 15% of women have it but aren't aware of it.

http://www.skirsch.com/charity/medical/tinnitus.htm
http://www.thecpapshop.com/blog/are-tinnitus-ringing-in-the-ears-and-sleep-apnea-linked/

 

Very interesting, thanks for the clear explanation. Will add it to list of possible tests.

 

Azariah you are one tough dude bro. Over 30 yrs...i dont know how youve done it.

I have been suffering extremely loud T for just over a month now and it has totally devastated my life. I am recovering from back surgery i had aug 23rd and then lucky me this dam T came on and omg. It is so loud it drives me absolutely crazy. I just recently had a session with a energy healer.... Kinda like some sort of witch doctor..... She wasnt able to take away my T but she was able to somehow help me cope mentally a little better..

Ive been literally on the verge of suicide since it started cause its just so loud and has broke me down and tore my spirits apart and lost my will to live. Just the thought of you surviving this for over 30 yrs is amazing and i give you huge props for. Doing it. This energy healer did mention to me that i should try taking magnesium and im not sure where she got that from but im gonna start taking some tomorrow and see if it helps. I was given the idea of taking lipto-flavenoid supplements as well and im getting those today to try as well.

Do you have it in one ear or both???? I think mine is just my right ear but it has gotten so loud i cant tell anymore..everyday like 2 or 3 times a day i feel a short shooting pain deep inside my ear or head . i have seen a ENT specialist and he told me theres nothing wrong with my ears and theres nothing he can do.

I will try and get this product you speak of as well and hope it will help cause i know i cannot live 30 yrs with this. Mentally it will break me long before that unless my brain learns to accept it cause right now i cry all day and night except. For the last few days since i saw the energy healer and she helped mentally to a point that i stopped crying but still living on the edge of disaster.

 

Hi Az.

I am on day 3 and so far, no change. After a bit of practice, I can now dissolve the pills sublingually without much trouble. My T has recently got louder and became reactive to external sound so I really would love for this to work, even if to bring it down to where it was before.

How long did it take before you felt an improvement? Really need some hope.

 

@Candy i have done a sleep study and I have moderate sleep apnea. I am having those episodes once every three minutes. I have the night guard which is supposed to help, and i trialled CPAP. I did a sleep study last night again to see if the guard helps alone or whether I need to make the investment in a CPAP machine, which costs over $2,000.
Also on a weight loss mission to get rid of the extra weight.
Unfortunately I can't say it has helped my tinnitus, but I believe @billie48 has sleep apnea and notices his tinnitus is worse if he doesn't use his CPAP.
Sam x

 

Hi BBApple,

For me, the result was pretty quick, within a few days. However, it then did get worse for a while, then better, until it settled in to better almost all the time. It took maybe two months before it settled down completely.

I hope it works for you.

 

Hi Sam,

Who is telling you your CPAP machine will cost $2000? That's outrageous! I bought the highest rated one, brand new, for $800. You can get a good one for $400.

If you need a BIPAP machine, those will cost more, but even the highest priced BIPAP I could find was $1700. (Most BIPAPS are around $1000.)

Try searching at CPAP.com and you'll see what I mean.

 

Hi Damong--

I want to reach out and give you a squeeze, mate. You're in a tough way right now, and I feel for you.

I'll say this:

Please keep going! Things seem black right now--- and trust me, I personally know about much of what you're going through, as do a lot of people here--- this can really drag you down--- but I am living proof that you CAN learn to live with this. I know that might seem impossible right now--- and I truly hope that it resolves for you and you can go on with the rest of your life as you were before--- but if it doesn't, please just know you CAN learn to live with it. It will take effort, but it is possible. You can't let yourself go out like this. You matter to people. It might not be easy--- I'm not gonna lie--- but you can do it. You can be in pain, but not suffer.

That being said, I'll tell you some other things which helped me.

Your energy healer who recommended magnesium was on the money. There's good research that magnesium deficiency is involved with tinnitus. The thing is, there are loads of different types to try, each one with subtle differences One type might not work for you, but another type might. I would suggest pick one type and try it for a month, steadily increase the dosage, and if doesn't seem to help, try a different type of magnesium. There is one type I've recently read about called Magnesium Threonate, which apparently actually enters your neuron/brain cells best. I personally haven't tried it, but given that T involves, as I understand it, overactive neurons in some cases, Mg Threonate might be worth a try. A type I took for many years with good results was called Natural Calm (magnesium citrate.) (Natural Calm basically saved my life at a certain point, as I was so magnesium deficient.) Other types I've read good things about are Mg taurinate and Mg glycinate. (Taurine and glycine are inhibitory neurotransmitters, which may have added benefit for T.) Epsom Salt baths (magnesium sulfate) also seem to help me, at least with my anxiety.

The fact that your T came on after major surgery is interesting, and MAY indicate it is magnesium related. (Major surgeries deplete magnesium stores in the body, so if you were already close to being magnesium deficient, the surgery may have pushed you over the edge.) Also, the fact that you are so anxious about this that, by your own admission, you have "lost your will to live" is another sign to me that you may be magnesium deficient. Magnesium deficiency is associated with anxiety and depression as well.

I personally have experience with Natural Calm (you can get it on Amazon.) When I first started taking it, it wiped me out so bad that I started sleeping 12 hours a night. If you do decide to try it, and it makes you very tired and sleepy at first, that is a GOOD sign that you need it and should keep going with it. Start with a 1/2 tsp twice a day and work up to two teaspoons three times a day or more. Start slowly and work up until you are on the verge of liquid bowels but not quite. Even if it doesn't help the T, I guarantee it will help the anxiety related to the T, which is even worse sometimes.

A second thing that has helped me with both the T and the anxiety related to T are certain binaural brain CDs and meditation CDs. The most powerful meditation that has helped me is called the Pure Awareness Technique by Frank Kinslow. It's a 17 minute guided meditation. This totally relaxes me deeply every single time. You can download it free from his website. Others which have helped me are the Immrama Institute CDs, especially the Insight Program. A third which has helped is BlissCodedSound by Marcus Knudsen (aka xPhirience.) These last you need to listen with stereo headphones.

My T was bilateral, with occasional inner ear pain as you describe. Usually one side was worse than the other, but it fluctuated.

Just keep pushing forward. The way I looked at it when the T first started was that I had two options: either I kept trying to push forward, or I quit... and failure was not an option. After 30 years of dealing with this, I've learned that all illness is an opportunity to increase your self care. An opportunity to treat yourself nicely.

I do, sincerely, appreciate how much you are suffering right now. But you can get through this. I know it. It is possible to live in pain, but not suffer. I know that sounds impossible, but it is possible.

But I hope the T resolves itself.

If there's anything else I can do to help, please let me know.

-Azariah

 

I've done it, sometimes, a minute at a time. There were times when the T was such a struggle that it kind of took over my life. After many years of practice through focused relaxation and meditation, I can usually pull myself out of the anxiety spiral that the T sometimes initiated. Magnesium also really really helped me.

(At one point, my Dr. did prescribe Ativan. I took this for a total of five days, but couldn't stand how it made me feel. It definitely took the edge off, but also left me feeling like a zombie--- I couldn't think or focus, I had no interest in anything other than staring at the wall. The magnesium citrate-- -Natural Calm---- finally ended my crazy anxiety. It didn't help the T, but it helped me live with it without feeling so crazy anxious.)

Here's a link to what helped me with the anxiety:

https://www.amazon.com/Natural-Vita...=1479789685&sr=1-3&keywords=natural+calm&th=1

 

I'd like updates from anyone else that has tried this!
Also, Azariah, I appreciate your detailed biochemical theory! Is your theory stating that the accumulation of lactate inflames the Eustachian tubes or possibly the cochlea?
I believe my T is caused by inflammation of Eustachian tubes as well!
Would love to hear any updates if possible!
Thanks!

 

I've been doing this protocol for about a week and a half and I did perceive improvement around the 4-5 day mark, but honestly it regressed back to normal after a few days :/ Don't know if I did anything wrong or if my cause is just not a B-vitamin issue. Not sure.

 

Azariah and each of you on here this is a great and intersting read thread. You beat me buy a year Azariah

30 years first 6 months thought I was going mad then habituation then 6 years ago ear infection ramped it up to walking the streets at night for 3 nights ,thing is during that period I felt like my ears were being sucked inside out couldnt lie down it was hell and its now bad bad bad,now I realise it could only have been one thing causing that feeling the eustachion tube and I really believe my ongoing fullness and pressure and crackling and louder T stems from this,but to sort that out is near impossible,,anyway I have orderd the sublingual version of the coenzym B1 and I will report back ..this will join the doezens of thing I try and keep on keeping on trying

Good Luck

 

Hi Champ,

If you read back, you'll see this was my experience as well. Things got better, then got worse for a while, then got slowly better. Now I'm at about 85-90% improvement basically all the time.

I have no idea if that will be your experience, but that was mine. I've been taking the stuff almost 12 months now... December will be my one year anniversary. Holding steady at about 85-90% improvement. Still have occasional mild ringing, but sometimes not even that.

 

@Azariah
I am in Australia, seems the machines are more expensive here!
The price I was quoted is from the sleep scientist who did my sleep study.
I have done some searching, and found them on the website cpapdirect.com.au and they are still expensive.
I checked out cpap.com and yes, they are a lot cheaper! It does say that you need a prescription though.... would they accept an Australian prescription I wonder?
Sam.

 

Hi Azariah,
I've just read this thread and have found it very interesting. It's great that we have a scientist on board here. I've just ordered a bottle from Iherb...so will see if it works for me. I'm 2.5 years into this horrible affliction and hope that one day they'll be a cure, but until then I'm just dealing with it as best I can. I'm 63..and retiring from my high school music teaching job. I'm also a guitarist...made my living from classical guitar performances and guitar teaching until deciding to teach classroom music in high school. My other passion is photography and it was in that fateful day in June 2014 when photographing a speedway event (with rubber ear plugs in) that I was exposed to really loud sound and have suffered from T ever since. Had I have purchased $50 ear muffs at the event I probably would not have T...who knows!
Anyhow, my T is always loud every morning when I wake up. After a shower it reduces to nothing or next to nothing or "it's going to be a bad day" loud T. Like others here there are times when I get 3-4 days in a row of no T, other times 3 days of mild or loud T...no set pattern. Today is a loud day, so my Sunday is spoilt to some extent. I'm hoping that retiring from work will reduce my anxiety and maybe T will decrease more...yet to see.
Meanwhile I'm going to try the B1 and hopefully there will be some improvement. Azariah, I'm a little confused...you said that your T stopped after only a few days on the B1, but later said that it took a few months to settle. Was this after stopping the B1? In any event I thank you for the info you have posted and hope that I have some success with it. For anyone else out there living in Australia (I'm in Brisbane) I orderd a bottle from Iherb: http://au.iherb.com/Source-Naturals-Coenzymated-B-1-60-Tablets/1077
Cheers,
Paul

 

Ah! I apologize, Sam. I had no idea the cost for these machines was different in other countries. I guess that does make sense. For example, here in the US we usually pay multiples of the price Canadians pay for the same pharmaceutical drugs.

Just Googling around I found a few sites that sold refurbished machines for $250. One was noinsurancemedicalsupplies. There were a bunch of others. On the other hand, they may only sell to US consumers.
As you said, the Australian sites are charging huge amounts for these machines.

I suppose you could ask if they would accept Australian prescriptions? The different in price is extraordinary! I don't know any other way around this. I know medical devices are not sold on EBAY, for example--- at least I don't think they are.

It would be cheaper for you to fly to the US, pay out of pocket to visit a US doctor, and buy the machine here! LOL!

 

This Australian site seemed the cheapest of the few I looked at:

https://supercheapcpap.com.au/index.php/cpap-machines/fixed-pressure-cpap-machines.html

And here's a site that sells to international buyers!!!!

http://www.secondwindcpap.com/

 

Hi Paul,

I stopped the TPP after a few weeks because I got a cold and thought the TPP had caused it, and then the T came back.

When I started the TPP again, it took a longer time for the T to settle back down, but it did eventually after a couple months. (The first time I took it, the T stopped immediately.)

I hope that is more clear!

 

Well, this supplement - like many others (D-vitamin, Magnesium, iodine, Zinc, B12 etc.) may help if you are deficient in it. Otherwise it won't change anything.

 

Ordered , will be here in late dec ..I hope .
Will report.

 

I'm sorry, but I must respectfully disagree in this particular case.

I was not deficient in vitamin B1 when I started taking this special activated form of B1. It still helped me... which contradicts your statement and indicates to me that there is something else going on here than simple deficiency.

There is no way you can possibly know that "it may help if you are deficient in it. Otherwise it won't change anything." You simply can't know that. You're just discouraging people without any scientific backing at all.

There are many possible biochemical causes of T. Deficiency is one of them. There are others, though--- for example, Krebs cycle issues (which I discussed earlier in this thread, and which is currently a rough working theory.)

Anyway, you can feel free to believe what you like. Everyone has to figure this out on their own.

I'm just glad that this has worked for me. In that sense, it doesn't really matter to me why it worked. In the larger sense, though, it matters a lot to me to understand why it worked... because maybe I can figure out the base biochemical problem here, which may help me even more, as well as others.

I guess what I mean to say is, if you're just gonna come on here to discourage people (including me) without adding any contribution to the discussion of the biochemistry, that isn't too helpful, is it?

 

Azaria,

I have methylation issues, and have been advised to take activated (bioactive) bs.........could this be related?

 

Hi Deb,

I do think it is POSSIBLE that these two things are related. I've personally done a lot of research on methylation issues, and been personally biochemically tested for different forms of methylation products, as well as tested for MTHFR genes. I have not found ANY published science linking T with methylation issues, but there is some anecdotal evidence I'm come across in forums and such. In short, it makes some sense that these two may be connected, but no proof as of yet. I don't think any researcher has really looked.

I would caution, though, that you should be sure, through testing, that methylation is actually an issue for you before you start supplementing methylated vitamins. Why? Well, SAM-e (also know as s-adenosylmethionine) is often supplemented when people are determined to me "low methylators" since it is the active form (well, made from) the amino acid methionine, and enters the methionine/methylation cycle. The concern with this, though, is that it eventually is removed from the cycle by binding with the amino acid glycine. Taking extra methylated vitamins can lead to a glycine deficiency. Glycine is one of the inhibitory amino acids, and may be related to T. So I suspect that taking extra methionine may increase T.

So, what I'm trying to say is, if you DO start supplementing methylated B vitamins, I would suggest supplementing between 8 and 10 grams of glycine per day as well. Most of us don't get enough of this amino acid anyway. Glycine is found in skin and connective tissue, and most of us don't eat that stuff anymore--- cartilage and skin. There actually IS good research showing that giving rats a methionine depleted diet increases how long they live. Giving them normal amounts of methionine with extra glycine does the same thing! It makes them live longer. (I can post some of these papers here if you like. Or I can PM them to you, so I don't hijack this thread. Feel free to ask me about methylation issues if you like. I've had myself tested for them every which way from Sunday, so I know a lot about that particular issue.)

-Az

 

Hi, what were your measured B1 vitamin levels at the beginning and what are they now?

EDIT: Oh and yes, I could have been a bit too exact with the comment "won't change anything". There may be some sort of changes even if you are not actually clinically deficient in some vitamin or nutrient.

 

Thank you Azariah for posting this info. I just started taking the Source naturals brand coenzymated B1. About 1/5 of a pill per day. I don't dilute it with water because having it remain in water MAY affect the bioactivity. I crush the pill and estimate how many crumbs to drop under my tongue. Its been three days now. I also spray magnesium oil under my arms and stopped taking magnesium citrate. No discernible difference yet. I got T from a 2min machine noise and got monaural sudden hearing loss a few days to weeks later. A deficiency is NOT the only thing a vitamin can act on. Vitamins can down and up regulate thousands of complex biological processes outside of the somewhat arbitrary RDA window of required nutrition. For example it's now we'll understood that the RDA for vit D is absurdly low.

 

Exercise make my t worse 100%, 10 km runs a day.

Swimming makes it quiet, 40 minutes...

I'm very interested in this because I NEED to run to keep sane!

Send me pm please