Emotional Wellbeing Tinnitus Feedback Loop

[JohnAdams]

So I basically figured out on my own that the chemical compound that causes cochlear hair cells to regrow was called LY411575. I found several labs online that sell it, but self administering was out of the question, besides there are many other complicating factors, such as how to properly handle the chemical, infection, pain, and I also knew that there are more components than just the LY411575.

So I felt like a hungry dog looking at food behind glass. It made me anxious, and the lack of knowledge about the current state of the medical trials just had me almost angry because I just wanted to know.

Another user posted the patent information about FX-322 yesterday and it does a great job explaining what it does. This was the information I've been craving and I do believe that this will probably be the cure we have been all needing. Beyond that it may also cure many other debilitating inner ear diseases like vertigo.

Knowing that this stuff is in trials right now and has been proven safe per phase 1, I was elated. I was also happy for all the others out there suffering from tinnitus, vertigo etc. All of us. I was crying out of happiness.

I was and still today am in such high spirits that the intensity of my tinnitus has gone way down.

So there definitely is a Tinnitus emotional feedback loop, and fear and guilt and anger turns it into a positive feedback loop, like a microphone held up to a speaker, but calm, happiness, and especially love turn it into a negative feedback loop, like an automatic thermostat.

So the best advice I can give is to not be afraid or angry at yourself, waiting for your tinnitus to quiet so you can have a "good day". Have a good day so your tinnitus will lessen. It is all based on nervous system health.

 

[Wolfears]

So the best advice I can give is to not be afraid or angry at yourself, waiting for your tinnitus to quiet so you can have a "good day". Have a good day so your tinnitus will lessen. It is all based on nervous system health.

When I got it, I wasn't afraid or angry at myself...I was 100% angry at Tinnitus...that hasn't changed.

Also, having a "good day" is not possible with loud unwanted sound inside your head..
It simply does not work if we try to cleverly turn it the other way around, because then it falls out of the "action and reaction" logical sequence.
That would require some heavy Orwellian "double think" type of mental gymnastics, which most people are not capable of.

This is how it works for most people:
Loud Tinnitus = bad day
Mild Tinnitus = good day
There is simply no sugar coating that one.

 

[JohnAdams]

When I got it, I wasn't afraid or angry at myself...I was 100% angry at Tinnitus...that hasn't changed.

Also, having a "good day" is not possible with loud unwanted sound inside your head..
It simply does not work if we try to cleverly turn it the other way around, because then it falls out of the "action and reaction" logical sequence.
That would require some heavy Orwellian "double think" type of mental gymnastics, which most people are not capable of.

This is how it works for most people:
Loud Tinnitus = bad day
Mild Tinnitus = good day
There is simply no sugar coating that one.

Some people i understand have very severe T. Others like me have T that fluctuates dynamically. I meant no offense.

 

[Wolfears]

Some people i understand have very severe T. Others like me have T that fluctuates dynamically. I meant no offense.

No offense taken my friend...
I'm simply pointing out, that for those with intrusive Tinnitus the whole "have a great day and don't worry about your Tinnitus" type of approach will not work....it will most likely only agitate them.
For the milder cases it might, as it is pretty easy to forget about it during the day anyway.

 

[JohnAdams]

No offense taken my friend...
I'm simply pointing out, that for those with intrusive Tinnitus the whole "have a great day and don't worry about your Tinnitus" type of approach will not work....it will most likely only agitate them.
For the milder cases it might, as it is pretty easy to forget about it during the day anyway.

Somedays my T is very intrusive and feels like a medical lazer is slicing through my brain and destroying every thought that I have. Other days like today, it is so low that as long as I'm working, doing something it's out of my mind almost entirely. May I ask what your general diet is like?

 

[glynis]

I understand both aspects and always around for anyone who needs support on or off the forum.
love glynis

 

[Wolfears]

Somedays my T is very intrusive and feels like a medical lazer is slicing through my brain and destroying every thought that I have. Other days like today, it is so low that as long as I'm working, doing something it's out of my mind almost entirely. May I ask what your general diet is like?

I'm trying to avoid sweets and in general my diet is pretty good (lots of greens, low carbs, avoiding processed foods as much as possible) etc..
But I don't think my diet influences my Tinnitus very much...
I went from loud debilitating Tinnitus to mild/moderate hissing in about 7 months, but much of it I attribute to my Lyme diagnosis and the subsequent treatment.
Allthough I still believe, that cumulative accoustic trauma was the original trigger.

 

[JohnAdams]

I'm trying to avoid sweets and in general my diet is pretty good (lots of greens, low carbs, avoiding processed foods as much as possible) etc..
But I don't think my diet influences my Tinnitus very much...
I went from loud debilitating Tinnitus to mild/moderate hissing in about 7 months, but much of it I attribute to my Lyme diagnosis and the subsequent treatment.
Allthough I still believe, that cumulative accoustic trauma was the original trigger.

The reason I ask is because I'm just trying to nail down why mine is so gone sometimes. I also eat healthy.

 

[fishbone]

No offense taken my friend...
I'm simply pointing out, that for those with intrusive Tinnitus the whole "have a great day and don't worry about your Tinnitus" type of approach will not work....it will most likely only agitate them.
For the milder cases it might, as it is pretty easy to forget about it during the day anyway.

I have horrible, loud, intrusive tinnitus every second I live. I'll be very honest with you, I still cannot believe how my low hiss/ barely noticeable tinnitus has turned into the demon it is today. I cannot lie and say that the noise is lost in the shuffle of every day living. I will say this much, i am not angry, sad, agitated about it either. Yes, I am still in shock, but yes i am at peace with myself and the demon that is ruthless.

Also I do not worry about my tinnitus. I would worry if i had a HIGH fever. I would worry if my house got ruined by a storm. Tinnitus will never worry me, it does make life harder for me. My hearing is covered by this tinnitus, that is my only gripe. I don't get worked up because this demon is screaming at me. Yes, I have had 30 years to learn, grow and deal with this venom.

Time is the mother healer of them all. Our attitude is the king of the realm. Our dedication, willpower ," I AM GOING TO BE OK AND LIVE MY LIFE" is the key to it all.......

 

[Wolfears]

I have horrible, loud, intrusive tinnitus every second I live. I'll be very honest with you, I still cannot believe how my low hiss/ barely noticeable tinnitus has turned into the demon it is today. I cannot lie and say that the noise is lost in the shuffle of every day living. I will say this much, i am not angry, sad, agitated about it either. Yes, I am still in shock, but yes i am at peace with myself and the demon that is ruthless.

Also I do not worry about my tinnitus. I would worry if i had a HIGH fever. I would worry if my house got ruined by a storm. Tinnitus will never worry me, it does make life harder for me. My hearing is covered by this tinnitus, that is my only gripe. I don't get worked up because this demon is screaming at me. Yes, I have had 30 years to learn, grow and deal with this venom.

Time is the mother healer of them all. Our attitude is the king of the realm. Our dedication, willpower ," I AM GOING TO BE OK AND LIVE MY LIFE" is the key to it all.......

Sure thing bro..but you are rather the exception to the rule.
I know that your intentions are good, but you have to remember that not everyone is built the same....
There are things at play such as personality, genetic make-up, built in tolerance levels..etc
Not everybody is able to do the same things..Tinnitus is no exception.

Some people can handle a 12 pack with no issues, some people get tipsy after one can.
Some people can handle the sun, some people burn easily.
Some people are deathly afraid of heights, some people can do pull ups off tower cranes and scale buildings with no safety ropes.

The fact that you are able to cope is excellent, but the "if I can do it so can you" approach does not work as well here for reasons mentioned above...
Especially with something as subjective as Tinnitus.

I'm just being realistic here...

 

[fishbone]

Sure thing bro..but you are rather the exception to the rule.
I know that your intentions are good, but you have to remember that not everyone is built the same....
There are things at play such as personality, genetic make-up, built in tolerance levels..etc
Not everybody is able to do the same things..Tinnitus is no exception.

Some people can handle a 12 pack with no issues, some people get tipsy after one can.
Some people can handle the sun, some people burn easily.
Some people are deathly afraid of heights, some people can do pull ups off tower cranes and scale buildings with no safety ropes.

The fact that you are able to cope is excellent, but the "if I can do it so can you" approach does not work as well here for reasons mentioned above...
Especially with something as subjective as Tinnitus.

I'm just being realistic here...

I'll be very blunt with you and all of the people on this forum. My tinnitus has gotten so LOUD now, that I don't even want to talk or communicate with people. This monster has covered my hearing and most of it.I have -75 to 80db loss of hearing from 4ks to 8ks.

I am normally a very outgoing person, but my hearing is pretty much gone and the tinnitus is a savage beast. If you want suffering, I got it. If you want struggle, I got it.

I have no one to support me daily, its just me and my 3 dogs. All of us are social creatures and NEED someone to love us, care for us, motivate us and push us to greatness. I have NON of that, just myself and my strength to carry on and live while being AFFLICTED with this horrible noise.

My back is against the wall with this situation, I don't go to gatherings anymore. I am not socializing that much anymore. I am just lifting weights and doing martial arts. All those elements listed would shatter anyone's soul.

SO, even though my soul wants to be in hell, my moods want to scream and say WHYYYyyyyyyyyy. I don't, I am keeping it together and trying to figure out how I can manage this newer level of PURE hell that the ringing brings on.

I might need permanent hearing aids, maybe more masking....who knows, I'll figure it out.

I was someone that use to not be able to handle some of life easiest tasks and horrors. I never imagined in my wildest dreams that id be in the spot I am currently in. It's not pretty AT ALL. It's sad, scary and it's reality. so when I motivate this board, trust me....I am in the same boat as many of you and even worst.

Point of this reply is this, yes life is VERY hard. We still have to do our best to push through it.

Bless all that suffer (including myself!)

PS - even with all this madness, I am still keeping my cool. I am not getting mad or raising my blood pressure. I am using a rational mind to solve/figure out my issue. This is key to tinnitus and life!

 

[Wolfears]

I'll be very blunt with you and all of the people on this forum. My tinnitus has gotten so LOUD now, that I don't even want to talk or communicate with people. This monster has covered my hearing and most of it.I have -75 to 80db loss of hearing from 4ks to 8ks.

I am normally a very outgoing person, but my hearing is pretty much gone and the tinnitus is a savage beast. If you want suffering, I got it. If you want struggle, I got it.

I have no one to support me daily, its just me and my 3 dogs. All of us are social creatures and NEED someone to love us, care for us, motivate us and push us to greatness. I have NON of that, just myself and my strength to carry on and live while being AFFLICTED with this horrible noise.

My back is against the wall with this situation, I don't go to gatherings anymore. I am not socializing that much anymore. I am just lifting weights and doing martial arts. All those elements listed would shatter anyone's soul.

SO, even though my soul wants to be in hell, my moods want to scream and say WHYYYyyyyyyyyy. I don't, I am keeping it together and trying to figure out how I can manage this newer level of PURE hell that the ringing brings on.

I might need permanent hearing aids, maybe more masking....who knows, I'll figure it out.

I was someone that use to not be able to handle some of life easiest tasks and horrors. I never imagined in my wildest dreams that id be in the spot I am currently in. It's not pretty AT ALL. It's sad, scary and it's reality. so when I motivate this board, trust me....I am in the same boat as many of you and even worst.

Point of this reply is this, yes life is VERY hard. We still have to do our best to push through it.

Bless all that suffer (including myself!)

PS - even with all this madness, I am still keeping my cool. I am not getting mad or raising my blood pressure. I am using a rational mind to solve/figure out my issue. This is key to tinnitus and life!

Again bro..I'm not questioning your mental toughness at all and I hope that you don't take this the wrong way.

I'm pretty sure you are tough enough to bitch-slap Lucipher himself around and then piss on the hells gates on your way out.
You are a true warrior in every sense of the word, but let me also be equally blunt:

This Tinnitus thing simply isn't for everyone...if mine didn't drop to manageable levels, I would not be talking to you right now.
Everyone wants to live, but that was no life..it was pure 100% survival mode.
I want more out of life than just to survive day to day....each to their own for sure.
All I'm saying that that level of Tinnitus just wasn't something i could (or even wanted) to handle for any sustained amount of time.

 

[Bobby B]

@JohnAdams

Can you tell us more about LY411575
how does it work ?

 

[JohnAdams]

@JohnAdams

Can you tell us more about LY411575
how does it work ?

Our inner ear hair cells are capable of regenerating but they have an internal chemical on and off switch but after we are born the chemicals in our body hold it in the off state. Ly411575 is a gamma secretase inhibitor that allows the cell to go from off to on and our inner ear hair cells start regenerating like the lining of our intestines. They have already accomplished this in living mice.