My Posting Place

[Jazzer]

@Ed209 , @threefirefour ,

On the plus side Ed, between us we've managed to infiltrate MPP with some good sound common sense !!

 

[Daniel95]

@Ed209 Don't misunderstand this, I'm just trying to understand a little better. You are very driven to fund research for tinnitus, yet you don't believe a cure is coming. Have you just lost faith because you've witnessed failures, or is it of a different nature? Why are you so adamant about helping out and activizing the tinnitus community? Don't get offended please, I'm not trying to do that. My existence solely lies in the hope for a cure right now. Or at least a far more effective treatment. I want to understand why you think a cure is not possible within our lifetimes?

 

[Ed209]

Don't misunderstand this, I'm just trying to understand a little better. You are very driven to fund research for tinnitus, yet you don't believe a cure is coming.

In a nutshell, I believe tinnitus would be hard to crack with the budget cancer reasearch has access to. But, the fact is, tinnitus reasearch has less money than the stationary budget of some companies.

This is what further compels the problem. The lack of engagement from the tinnitus community. Non-sufferers will not help fund the research towards a cure. It has to be driven by people who have this condition. I have habituated and so it no longer bothers me, personally, but it bothers me that there are people who kill themselves because they can no longer cope.

 

[Ed209]

Well we have that now. Tomorrow's world was correct there. Susan shores device doesn't work by RI btw.

But what I'm saying is, they were saying they were on the verge of a breakthrough back then, and in fact, we are no closer now then we were 30 years ago.

Where do you see us being in another 30 years with the same level of engagement we have now?

 

[threefirefour]

But what I'm saying is, they were saying they were on the verge of a breakthrough back then, and in fact, we are no closer now then we were 30 years ago.

Where do you see us being in another 30 years with the same engagement we have now?

Hopefully as an archived site, where people who are curious how we lived without a treatment can visit.

If you're seeing MPP around 30 years from 2018, hi.

 

[threefirefour]

But what I'm saying is, they were saying they were on the verge of a breakthrough back then, and in fact, we are no closer now then we were 30 years ago.

Where do you see us being in another 30 years with the same engagement we have now?

We were on the verge back then. And we passed it. We now have residual inhibition. I get what you're trying to say, but it's not a very good point.

 

[Ed209]

We were on the verge back then. And we passed it. We now have residual inhibition. I get what you're trying to say, but it's not a very good point.

You misunderstand me. They were saying we were on the verge of a treatment. Something more significant. RI is pretty useless. It doesn't work for me at all for example, but that's probably because I have too many noises, maybe?

 

[threefirefour]

You misunderstand me. They were saying we were on the verge of a treatment. Something more significant. RI is pretty useless. It doesn't work for me at all for example, but that's probably because I have too many noises, maybe?

Yeah mileage may vary I guess. Same with other newer stuff like ACRN and audionotch. The fact is things have been improving. There are more "treatments" now, but it's hard to say what their benefit is. Desynchra is on the market now, and it reduces tinnitus by 25%-33% in 70% of people who try it. That's one treatment. But it still sucks. I used to think there was no progress in tinnitus, but I'm glad I was mostly wrong. We're climbing. Susan Shore has been the subject of debate here. Her clinical results were nothing short of amazing, and in Minnesota, similar results were replicated (albeit for a shorter amount of time on purpose and with a smaller sample size). It's more illogical to assume it will fail than to assume it will succeed.

 

[Ed209]

There has been more tinnitus related research in recent years. We are now at a pivotal point.

 

[Contrast]

@Jazzer @Ed209

 

[Contrast]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4842978/

 

[Contrast]

ITT we post things that piss us off

neurotypical joe has HF hearing loss and tinnitus twice as bad and loud as i do and he doesn't complain and expect a cure. He just moves on in life. His 9-5 job and nagging wife and 3 kids are more important then tinnitus.

fast forward to 2023 when cochlear hair cell regeneration is possible

Neurotypical Joe can't afford the treatment because his wife left him with the kids and took half his money
his hearing loss is getting worse with age and now he has to get an additional part time job to go along with the 9-5 just to barely make ends meet. Neurotypical joe still doesn't care about the treatment and thinks Jebus is a better alternative.

 

[Ahat]

The last couple pages of this thread are depressing. Can we stop with that BS?

No way you can habituate to something that you always have to worry about making/getting worse. Life is not worth living if you have to spend it walking on eggshells.

Edited to add that the depressing parts are the "there will never be a cure so you should shut up and pretend to be happy" ones.

 

[Ed209]

Edited to add that the depressing parts are the "there will never be a cure so you should shut up and pretend to be happy" ones.

I think you need to re-read as you have massively misunderstood everything. The main facts are these:

• We ALL want a cure, but only the tiniest, most minuscule percentage of people, donate towards any tinnitus charities or research based work.

• Cures and treatments come from research and research needs funding, and/or at least awareness, to create some form of backing. We have neither and not many do a lot to change the trend.

• No one is saying pretend to be happy. Many people do start to feel better after a certain amount of time and adjustment. This is not pretend, at least in my case and many others'. There is NO current alternative. You have to accept it in order to move on with your life. Whilst you work on this bullet point (ie, turning your life around) you can contribute towards bullet point one and help the cause directly. Putting all your hope, entirely, into a cure will likely keep you suffering in my opinion.

 

[Ahat]

I think you need to re-read as you have massively misunderstood everything. The main facts are these:

• We ALL want a cure, but only the tiniest, most minuscule percentage of people, donate towards any tinnitus charities or research based work.

• Cures and treatments come from research and research needs funding, and/or at least awareness, to create some form of backing. We have neither and not many do a lot to change the trend.

• No one is saying pretend to be happy. Many people do start to feel better after a certain amount of time and adjustment. This is not pretend, at least in my case and many others'. There is NO current alternative. You have to accept it in order to move on with your life. Whilst you work on this bullet point (ie, turning your life around) you can contribute towards bullet point one and help the cause directly. Putting all your hope, entirely, into a cure will likely keep you suffering in my opinion.

I read all of it and would rather not read it again. I didn't misunderstand anything.

I know myself well enough to know I will never get used to living with this. The only hope I have is a treatment or a cure.

 

[threefirefour]

The last couple pages of this thread are depressing. Can we stop with that BS?

No way you can habituate to something that you always have to worry about making/getting worse. Life is not worth living if you have to spend it walking on eggshells.

Edited to add that the depressing parts are the "there will never be a cure so you should shut up and pretend to be happy" ones.

Fully agree. I'm extremely lenient about posting but this is at least Jazzers third time taking a page talking about this. If Ed and Jazzer could keep habituation shilling on a friendlier forum to it, then that would be great.

And sorry about Ed's earlier comments. He's a smart guy I'm sure, but he's not a research guy. He contradicted himself when evidence in favor of a near-treatment was provided. There's a reason all the people who focus on research like edgeofscience and Aaron say <10 years is a very reasonable estimate. It's because they keep up. Ed doesn't.

You don't need to pretend to be happy like some of these people want. I'm sure when we get a treatment you will be happy

 

[Ed209]

I read all of it and would rather not read it again. I didn't misunderstand anything.

I know myself well enough to know I will never get used to living with this. The only hope I have is a treatment or a cure.

Well then I'm lost and I give up! It seems you would all rather post memes then do some real advocacy work. And that's what I don't understand and never will. Good luck to you all.

 

[Ed209]

And sorry about Ed's earlier comments. He's a smart guy I'm sure, but he's not a research guy. He contradicted himself when evidence in favor of a near-treatment was provided. There's a reason all the people who focus on research like edgeofscience and Aaron say <10 years is a very reasonable estimate. It's because they keep up. Ed doesn't.

Quite the contrary. I've followed a lot of the research for years and know all the main developments. I'm quite dispondant, however, at the lack of real engagement, and have come to the conclusion that it's a lost cause. So I give up. Trying to motivate the tinnitus community to do something worthwhile is just too exhausting.

You want a cure but don't want to help in anyway whatsoever. And at the same time have a abnormally negative attitude to anyone who is habituated which makes no sense either.

As you were.

 

[Contrast]

@threefirefour , @Ed209

I personally am very doubtful about a cure.
We are talking about the deteriation of nerve cells.
But whether a cure ever comes or not, we can not leave sufferers without hope, without clinics, without treatments, without therapies.
If people need to be taught Jastreboff's model, and it helps them, then that's fair enough.
It gives them hope.

What would you do for sufferers, Vets who've given everything, including their health, for their country etc....
Would you 'stake them out to die?'

......perhaps there's some Apache in your blood line..?

View attachment 18700

if treating hearing loss solves tinnitus then any regenerative approach on restoring hair cells, synapses, repairing the audiotory nerve itself should reduce tinnitus.
https://blog.medel.com/cochlear-implants-tinnitus-cure/
http://www.tinnitusjournal.com/articles/can-cochlear-implants-decrease-tinnitus.pdf

 

[Contrast]

Also it will be hilariously awesome and reasonable to believe that future hearing loss researchers are the ones that will solve most cases of tinnitus and the ATA researchers trying to pin point the exact regions in the brain AKA lobotomy tinnitus cure becomes the only option for TMJ tinnitus sufferers because their tinnitus is not relating to hearing loss and neck/jaw misalignment cannot be corrected yet.

 

[Jazzer]

I don't think we'll ever see a cure but I'd love to be proved wrong. The best we can currently do is help and support each other.

Ed - sorry to go off at a tangent old sport,
but I just had a 'shoofty' at your photo,
and you look a bit respectable for a jazzer mate.
What with the suit 'an all.

Just sayin'.......

 

[Starthrower]

You want a cure but don't want to help in anyway whatsoever.

I believe @threefirefour donated to your fund raiser? So that was a big step!

This thread is their way of coping with posting having fun with memes and so on..Threefirefour and friends continue on with your memes here!!!

I'm quite dispondant, however, at the lack of real engagement, and have come to the conclusion that it's a lost cause. So I give up. Trying to motivate the tinnitus community to do something worthwhile is just too exhausting.

Can we discuss this in another thread? How about the awareness thread. I will @Ed209 you. I Won't be able to do much until tomorrow afternoon.

 

[Greg Sacramento]

I once mentioned when I was a kid I searched for old bottles, coins, spoons and whatnot by using a trowel in virgin woods, meadows, beside an old foot path/wagon road, or near streams and small ponds. This was in areas in Massachusetts where maybe the first settlers had a cabin. Many of these areas now have housing tracks.

Now living in California I play an internet billiards game and 5 roll with the sound off as I have some pink music in the background.

I would really like to hear what others do. Some have cats as I do, others have dogs and some take walks in parks.

 

[Contrast]

What are normies doing in MPP? @threefirefour

 

[Daniel95]

Hey, this means you're gaining traction. All attention is good attention when you have a cause. I say let anyone and everyone engage as long as the goal remains.

But maybe get them to make some memes that would be funny.

 

[Daniel95]

I once mentioned when I was a kid I searched for old bottles, coins, spoons and whatnot by using a trowel in virgin woods, meadows, beside an old foot path/wagon road, or near streams and small ponds. This was in areas in Massachusetts where maybe the first settlers had a cabin. Many of these areas now have housing tracks.

Now living in California I play an internet billiards game and 5 roll with the sound off as I have some pink music in the background.

I would really like to hear what others do. Some have cats as I do, others have dogs and some take walks in parks.

I'm currently trying to figure out how to get my cat to sleep next to my ear since her purring is very relaxing and a nice masker.

It's not working.

 

[threefirefour]

View attachment 18715
What are normies doing in MPP? @threefirefour

There's been a breach from the outside sir. Luckily the breach has been patched.

 

[threefirefour]

View attachment 18716

I'm currently trying to figure out how to get my cat to sleep next to my ear since her purring is very relaxing and a nice masker.

It's not working.

Spikes the hell out of mine.

btw the cat in your profile is super cute.

 

[Jazzer]

• No one is saying pretend to be happy. Many people do start to feel better after a certain amount of time and adjustment. This is not pretend, at least in my case and many others'. There is NO current alternative. You have to accept it in order to move on with your life. Whilst you work on this bullet point (ie, turning your life around) you can contribute towards bullet point one and help the cause directly. Putting all your hope, entirely, into a cure will likely keep you suffering in my opinion.

"ZAKLY SO ED"

Given that we all suffer with Tinnitus, it is very well possible to reach a position of acceptance of that reality, and to then make an adjustment to it, which means that it is actually less intrusive and ultimately less painful.

This is a fact for Ed, for me, and many others.
We are often referred to, quite jealously of course, as 'dinosaurs,' or 'normies', by those who are failing to master this technique.

What does make me smile (ever so slightly) is that when the powers that be crank up their propoganda machine, on MPP, decrying all therapies and remedies, their rebellious voice is met with, and moderated by an attitude of benign common sense.

 

[threefirefour]

"ZAKLY SO ED"

Given that we all suffer with Tinnitus, it is very well possible to reach a position of acceptance of that reality, and to then make an adjustment to it, which means that it is actually less intrusive and ultimately less painful.

This is a fact for Ed, for me, and many others.
We are often referred to, quite jealously of course, as 'dinosaurs,' or 'normies', by those who are failing to master this technique.

What does make me smile (ever so slightly) is that when the powers that be crank up their propoganda machine, on MPP, decrying all therapies and remedies, their rebellious voice is met with, and moderated by an attitude of benign common sense.

This comment is hilarious. WE'RE the "powers that be"? How are we the powers that be? We're not some sort of establishment. If anything we're the outsiders and the habituation-dinos are the establishment, because they basically run every aspect of the tinnitus community (sadly). TRT is still encouraged by establishments like ATA... Yet WE'RE the "powers that be" because we're attacking the establishment? You see how that's ridiculous right?

We're not spreading propaganda either. We're attacking an established narrative that's never really been challenged before. You're not "countering us" with "common sense" either. If you haven't kept up with the past few pages, you and Ed got your butts handed to you by a loser who LARPs as Hugh Neutron.

The reason I'm turning up the heat is because it's obvious you and Ed seem to be on some sort of personal crusade to "convert" MPP, which is really annoying. If this weren't true, you would be posting this stuff elsewhere. For the record I'm not asking you two to stop or go away. I'm just saying if you keep doing this, you're gonna lose. So what if people like you and Ed don't have one post on the whole site? Is it really that big of a deal?