When the Cure Comes...

[John Young]

What if someday within a few years a complete cure happens? Will we continue communicating on this site? If Frequency Therapeutics or Decibel Therapeutics get their cures to work we need to plan a giant week-long party at some fancy resort or on a cruise ship. Anybody else agree?

 

[dpdx]

What if someday within a few years a complete cure happens? Will we continue communicating on this site? If Frequency Therapeutics or Decibel Therapeutics get their cures to work we need to plan a giant week-long party at some fancy resort or on a cruise ship. Anybody else agree?

oh god I cant wait for the cure. I am going to throw a party and drink so much. My T is so loudddd I would do anything to get it reduced to a 2/10 or 3/10

 

[John Young]

oh god I cant wait for the cure. I am going to throw a party and drink so much. My T is so loudddd I would do anything to get it reduced to a 2/10 or 3/10

I float around 1-2 on good days and 3-4 on bad days. This is what I take everyday.

Zinc
200% vitamin B
Biotin
CBD oil - expensive
Apple cider vinegar with the mother
A huge mouthful of fish oil - yuck

I really feel like it does something. I could be wrong. If I'm feeling good by the end of the day, I will usually make dinner for my family and then I'll take 3-4 shots of vodka and play guitar or this race car sim game until bed. My T is sometimes gone when I wake up. I fool myself into thinking I'm healed or rewired but it usually creeps back around 12-2pm but decreases towards dinner time. That is my life right now.

 

[Contrast]

I don't think all forms of tinnitus will be cured at once.

But if hearing loss is the most common and reversing hearing loss helps in most cases then it is certainly worth celebrating when it happens.

Also Susan Shore and her device could be a huge breakthrough for us within several years.

Any actual treatment that reduces the volume of tinnitus without worse side effects should be celebrated!

 

[Contrast]

Yeah lets say 10 years from now hearing restoration, TMD correction, and devices like UoM and epilepsy drugs help the majority of people. Would this site successfully shutdown as mission accomplished, even if there was a super small minority of tinnitus patients that didn't not get help from treatments?

The ultimate goal of this website is to find a cure, so we wouldn't have to be here in the first place. Maybe they'll just archive the entire site with a mission accomplished, thanks MPP!

 

[dpdx]

I float around 1-2 on good days and 3-4 on bad days. This is what I take everyday.

Zinc
200% vitamin B
Biotin
CBD oil - expensive
Apple cider vinegar with the mother
A huge mouthful of fish oil - yuck

I really feel like it does something. I could be wrong. If I'm feeling good by the end of the day, I will usually make dinner for my family and then I'll take 3-4 shots of vodka and play guitar or this race car sim game until bed. My T is sometimes gone when I wake up. I fool myself into thinking I'm healed or rewired but it usually creeps back around 12-2pm but decreases towards dinner time. That is my life right now.

Wow that is really good. My Tinnitus used to be a 2/10 every day from October 2018-Jan 15, 2018. From Jan 19-Feb 4 it jumped to a 4 then a 5, 6, 8, and eventually a 10/10 like a blasting jet engine noise. I couldnt work anymore as it was just too loud. typing on computer was extremely hard as was concentrating. I developed Visual Snow and Dark Eye floaters. I also have moderate hearing loss from the ear test I have done which brought about these rapid changes. . Now I have 5 severe days and 2 moderate days, on moderate days my tinnitus is a 5/10 and on severe days like today it is a 8 out of 10. I can hear my T over running faucet full blast and over peoples voices...sometimes I cant understand the tv how loud my T is. Nothing can mask it but shower and loud traffic.

 

[Contrast]

The goal of this website should be to root on research to find a treatment so we won't have to be here or having tinnitus in the first place, however i'd hate to be here 10 years from now and find out no treatment exist, the same merry go round and TRT hugbox's with people saying help is on the way.

That's why I'm paying attention to what happens so if there isn't going to be progress within 5 years I can just off myself rather then ride Jastreboff's merry go round.

 

[John Young]

Yeah lets say 10 years from now hearing restoration, TMD correction, and devices like UoM and epilepsy drugs help the majority of people. Would this site successfully shutdown as mission accomplished, even if there was a super small minority of tinnitus patients that didn't not get help from treatments?

The ultimate goal of this website is to find a cure, so we wouldn't have to be here in the first place. Maybe they'll just archive the entire site with a mission accomplished, thanks MPP!

Why do you think it will take so long? We dont know what happened with the last fx 322 test. What if they cured the person entirely and the drug gets fast tracked?

 

[robHing]

Too many sufferers are here.
Hoping the CURE can come soon !!!

 

[Manny]

What if someday within a few years a complete cure happens? Will we continue communicating on this site? If Frequency Therapeutics or Decibel Therapeutics get their cures to work we need to plan a giant week-long party at some fancy resort or on a cruise ship. Anybody else agree?

This is a conundrum I would be very, very glad to encounter. Yes if we are ever healed we will party for weeks. Forget that, if I would ever be healed my whole life would be a party. Legit.
Alas...

 

[RicoS]

What if someday within a few years a complete cure happens? Will we continue communicating on this site? If Frequency Therapeutics or Decibel Therapeutics get their cures to work we need to plan a giant week-long party at some fancy resort or on a cruise ship. Anybody else agree?

When there is a cure I wish you all the best and will never talk to anybody again (except from a few which became close friends). I will pick my life up where it was dropped from a cliff....and will not look back ever again.

I wish you all the best and a happy life and forget this whole ordeal ever happend.
I would go on a holiday and go to the most silence and beautiful place I could find and just enjoy the silence and view and my son screaming to play with him

Nothing against you people... but it is like when I had bad floaters and did surgery on both eyes. I kept a diary after my surgery and informed everybody on the board about it.

This thread still exists after 12 years and might help a lot of people with floaters
https://www.tapatalk.com/groups/floatertalk/i-had-fov-jan-27-in-leuven-by-dr-stalmans-t949.html

But when I was cured I closed that chapter and never came back again...and even forgot all about it. It was a terrible time and I do not want to live in the passed.

I cannot be friends will all of you....but I sure would leave a big message.... WHERE TO GET THE CURE, THE COSTS and any other information you people need, but after that I am out of here...I would not go to your party sorry.... I am just being honest hahaha I rather give my son a great time and my wife then go to a loud party which can induce T again. And I made a promise with somebody here that I we would meet if we ever get cured from T and I will stick to that.

But until that time I will support here when needed ... we do not all have to be friends...but we all understand each others suffering in some degree.

And I hope that when I am cured and a year later somebody asks me "Have you been on TT lately" that my response would be. "Nope haven't been there in a year..... it is a dying place anyway because there is a cure for T now. If you want to see where , how and how much it costs I can give you a link to a thread of the site where i posted it."

That would be my answer with a big smile on my face....I will properly forget 99% of you because I am doing other stuff .... I have at least 5 years of T to catch up with.

We are partners in crime here...I do not chose to be here.... it is like a hospital for T people and when I am in a hospital I want to be cured, get out asap and never come back again. I can get support there and info and what ever, and I am glad it is there but it is not my fun place to be...... I want to get cured and get the F out.

I can talk with other patients in my room who have the same. We can have fun watch some tv together since we are there anyway....but after that it is adios ....hope you also get better and I am out.

Perhaps I make a career switch and quit programming and help animals or something... I do not know..but I would not be here

 

[Bill Bauer]

My T is sometimes gone when I wake up. I fool myself into thinking I'm healed

If there are periods when it is gone, chances are that eventually it will be gone for good.

 

[John Young]

If there are periods when it is gone, chances are that eventually it will be gone for good.

I really hope you're right. It was basically down to a 0-1 for two days and I thought I was better but then yesterday it was back. The ratio of quiet days to loud days is increasing though in favor of quiet days.

 

[John Young]

When there is a cure I wish you all the best and will never talk to anybody again (except from a few which became close friends). I will pick my life up where it was dropped from a cliff....and will not look back ever again.

I wish you all the best and a happy life and forget this whole ordeal ever happend.
I would go on a holiday and go to the most silence and beautiful place I could find and just enjoy the silence and view and my son screaming to play with him

Nothing against you people... but it is like when I had bad floaters and did surgery on both eyes. I kept a diary after my surgery and informed everybody on the board about it.

This thread still exists after 12 years and might help a lot of people with floaters
https://www.tapatalk.com/groups/floatertalk/i-had-fov-jan-27-in-leuven-by-dr-stalmans-t949.html

But when I was cured I closed that chapter and never came back again...and even forgot all about it. It was a terrible time and I do not want to live in the passed.

I cannot be friends will all of you....but I sure would leave a big message.... WHERE TO GET THE CURE, THE COSTS and any other information you people need, but after that I am out of here...I would not go to your party sorry.... I am just being honest hahaha I rather give my son a great time and my wife then go to a loud party which can induce T again. And I made a promise with somebody here that I we would meet if we ever get cured from T and I will stick to that.

But until that time I will support here when needed ... we do not all have to be friends...but we all understand each others suffering in some degree.

And I hope that when I am cured and a year later somebody asks me "Have you been on TT lately" that my response would be. "Nope haven't been there in a year..... it is a dying place anyway because there is a cure for T now. If you want to see where , how and how much it costs I can give you a link to a thread of the site where i posted it."

That would be my answer with a big smile on my face....I will properly forget 99% of you because I am doing other stuff .... I have at least 5 years of T to catch up with.

We are partners in crime here...I do not chose to be here.... it is like a hospital for T people and when I am in a hospital I want to be cured, get out asap and never come back again. I can get support there and info and what ever, and I am glad it is there but it is not my fun place to be...... I want to get cured and get the F out.

I can talk with other patients in my room who have the same. We can have fun watch some tv together since we are there anyway....but after that it is adios ....hope you also get better and I am out.

Perhaps I make a career switch and quit programming and help animals or something... I do not know..but I would not be here

I understand. My sentiment is that we are all in this boat together. Hope you have a good day.

 

[Joe Bananas]

Wow that is really good. My Tinnitus used to be a 2/10 every day from October 2018-Jan 15, 2018. From Jan 19-Feb 4 it jumped to a 4 then a 5, 6, 8, and eventually a 10/10 like a blasting jet engine noise. I couldnt work anymore as it was just too loud. typing on computer was extremely hard as was concentrating. I developed Visual Snow and Dark Eye floaters. I also have moderate hearing loss from the ear test I have done which brought about these rapid changes. . Now I have 5 severe days and 2 moderate days, on moderate days my tinnitus is a 5/10 and on severe days like today it is a 8 out of 10. I can hear my T over running faucet full blast and over peoples voices...sometimes I cant understand the tv how loud my T is. Nothing can mask it but shower and loud traffic.

I remember the days I could mask my T in the shower. I took long, beautiful, relaxing ones. Now I can hear it loud and clear there. Shower, bus, car with the window opened, voices, musi, tv... You name it. Nothing, absolutely nothing mask my T.
Mine is noise induced. I've been completely obsessed about protecting my ears since onset. I always have earplugs with me and use them when at the slightest loud environment.
Crap

 

[TuneOut]

I really hope you're right. It was basically down to a 0-1 for two days and I thought I was better but then yesterday it was back. The ratio of quiet days to loud days is increasing though in favor of quiet days.

Do you find any pattern in the worsening/improvement? Any possibly causal factors? Or is it seemingly random?

 

[BobbyH]

What if someday within a few years a complete cure happens? Will we continue communicating on this site?

I think it depends on the price for that cure and who may not be able to afford it. The reason I say this is because I am fortunate to be supplied with very high-tech hearing aids with maskers and related hardware to help me cope. It breaks my heart to read that someone else suffers because they can't afford to pay for relief from their hell.

I truly hope and pray that a cure is found and I also hope and pray that the powers to be in both the medical and political leadership see fit that no one goes without relief due to an inability to pay.

Bobby

 

[Contrast]

I think it depends on the price for that cure and who may not be able to afford it. The reason I say this is because I am fortunate to be supplied with very high-tech hearing aids with maskers and related hardware to help me cope. It breaks my heart to read that someone else suffers because they can't afford to pay for relief from their hell.

I truly hope and pray that a cure is found and I also hope and pray that the powers to be in both the medical and political leadership see fit that no one goes without relief due to an inability to pay.

Bobby

once regenerative medicine becomes a reality I hope it goes to everyone in the mainstream public, not trickle down from the wealthy.

 

[GSC]

What are we all going to do on here when all of us are finally cured??????

 

[JohnAdams]

What are we all going to do on here when all of us are finally cured??????

Go back to our miserable lives, but with better sounding music and higher quality sleep.