My Posting Place

[Markku]

Wished we were allowed to talk so openly about tinnitus.

They openly call it a debilitating condition, a neurological condition, a brain disorder - words you never see when it comes to tinnitus, too scary, too real.

And you don't see people with mild visual snow in the comments saying "this makes me feel bad".

I know you mean well, but I also think you are exaggerating and inadvertently disparaging our community and what we stand for.

Over the last seven years I've been here, there have been countless discussions about severe, debilitating tinnitus.

There have been discussions about suicide. Just recently @Ed209 organized a fundraiser in @Danny Boy's name, mentioning tinnitus suicides in the campaign (Danny's death might not have been one though, we will learn more about his cause of death in the near future).

I have myself created videos about people's severe tinnitus and posted them. I would do that more if people just sent me footage (which they rarely do).

And I bet if there was a similar forum for visual snow, that there would also be people who deal with it better and who might trivialize or not fully understand how some people are so badly affected by it.

It's not black and white. There surely is a lot to be fixed in the tinnitus communities and organizations at large, even here, and overall the message about tinnitus needs to be balanced out, to also represent the worst cases (which I agree is not done well enough among the general public and medical professionals as of now).

 

[JohnAdams]

"For it is impossible for anyone to heal the sick, if he has no knowledge of the disease of the patients."
-St. Irenaeus, On the Detection and Overthrow of the So-Called Gnosis, Book IV, Preface.

This was written in 180 AD by a Bishop in the primitive Christian church, refuting a group that claimed to be the real Christians that were trying to turn the church into a secret society. The same is true today. The same Gnostic religion still exists. The Gnostics run the medical industries hence this symbol. It is in our faces.

Perhaps we can move towards better cures if we lift the veil of Isis and overthrow these Gnostics once more here almost 2000 years later. I'm blowing the whistle and if any Gnostics in this forum want to get upset with me for profaning their religion then they can go and cry about it.

Fun fact about Gnosticism:
They recieve some Gnosis (knowledge) that "perfects" them. We, the uninitiated, the profane, are trapped in gross matter and are devoid of spirit and defective, born out of ignorance, just as they perceive the world to be. For them there is nothing they can do which is wrong, or sinful, for they are perfected. For us, everything we do of the flesh is wrong and sinful.
For instance, if they fornicate it is okay and there is no transgression, if we even have sex in the confines of marriage, or even eat meat, it is because we are in a state of material defect.
I think this is why they cover up cures for the general public and only offer us treatments that make them money because we are their lawful prey, like cattle. To them we are just animal flesh. I'm almost certain there is a different level of healthcare for these so called perfected initiates which would perfectly explain why Congress exempted themselves from the mandate of Obamacare. This would also PERFECTLY explain the mindset of the so called tinnitus "associations" and people like Pawel Jasterboff. Our continual suffering is low hanging fruit for their enrichment.

The 6th US President John Quincy Adams tried very hard to destroy this system and unfortunately failed and the history of the movement he was apart of was swept under the rug.

 

[Jack Straw]

I can barely hear it in quiet rooms now it's very nice.

I am incredibly jealous and happy for you!

 

[Manny]

I know you mean well, but I also think you are exaggerating and inadvertently disparaging our community and what we stand for.

Over the last seven years I've been here, there have been countless discussions about severe, debilitating tinnitus.

There have been discussions about suicide. Just recently @Ed209 organized a fundraiser in @Danny Boy's name, mentioning tinnitus suicides in the campaign (Danny's death might not have been one though, we will learn more about his cause of death in the near future).

I have myself created videos about people's severe tinnitus and posted them. I would do that more if people just sent me footage (which they rarely do).

And I bet if there was a similar forum for visual snow, that there would also be people who deal with it better and who might trivialize or not fully understand how some people are so badly affected by it.

It's not black and white. There surely is a lot to be fixed in the tinnitus communities and organizations at large, even here, and overall the message about tinnitus needs to be balanced out, to also represent the worst cases (which I agree is not done well enough among the general public and medical professionals as of now).

Just wanna say, I think this forum is great. Very well run, very good with free speech and an appealing UI. Thanks @Markku and the others for all that you do!!

 

[Jack Straw]

@Manny Do you play piano?

 

[Ed209]

I have myself created videos about people's severe tinnitus and posted them. I would do that more if people just sent me footage (which they rarely do).

I would add to this that we now have another excellent opportunity to create some plea videos and post them onto Prof Rauschecker's campaign page.

If someone makes a particularly good one, but can't afford to donate, I will donate again and post it for you. These opportunities are presenting themselves, but unfortunately, nobody is getting involved.

You need to get your message/s out there! Take everything you've said in this thread and tell the world so they can actually hear you! And I know for a fact that some very influential eyes are watching this campaign.

 

[Ed209]

Maybe @Markku could edit a montage (of all who want to participate) and we could post that?

 

[Ed209]

We could also raise a small fund here and then donate it in the name of Tinnitus Hub. This raises awareness of the platform we use the most. Just spitballing ideas here.

You're preaching to the choir by complaining here.

 

[Jack Straw]

I would add to this that we now have another excellent opportunity to create some plea videos and post them onto Prof Rauschecker's campaign page.

If someone makes a particularly good one, but can't afford to donate, I will donate again and post it for you. These opportunities are presenting themselves, but unfortunately, nobody is getting involved.

You need to get your message/s out there! Take everything you've said in this thread and tell the world so they can actually hear you! And I know for a fact that some very influential eyes are watching this campaign.

I think the problem with people is that some people are nervous about losing their privacy when making these videos. Or they are embarrassed to make a video about an illness such as tinnitus that isn't seen and it's more of an internal thing.

I don't agree with that line of thinking, but can understand why someone wouldn't participate.

 

[Deamon22]

We could also raise a small fund here and then donate it in the name of Tinnitus Hub. This raises awareness of the platform we use the most. Just spitballing ideas here.

You're preaching to the choir by complaining here.

I agree with Ed, i think until now just he, Greg Sacramento, Tuxedo Cat and me donated (if i see correctly). I totally understand if someone doesn't have the money to donate, but the idea of a video would surely make a great impact.

 

[Ed209]

I think the problem with people is that some people are nervous about losing their privacy when making these videos. Or they are embarrassed to make a video about an illness such as tinnitus that isn't seen and it's more of an internal thing.

I don't agree with that line of thinking, but can understand why someone wouldn't participate.

That's the paradox we face though. How can we tell the world if nobody wants to? Check how many people want the world to know how bad tinnitus is, and then look how many want to tell the world or do something about it.

Unfortunately, complaining on MPP all day doesn't achieve anything. Although I do understand the therapeutic nature of this thread. It's good to speak your mind and have a laugh.

 

[Ed209]

If anyone wants to do a video and keep their anonymity, you could always film it with a shadow over your face (like those crime documentaries do).

You could say you need to block your face as it affects your livelihood, such the devastation this condition has had on every aspect of your life, etc.

 

[Jack Straw]

If anyone wants to do a video and keep their anonymity, you could always film it with a shadow over your face (like those crime documentaries do).

You could say you need to block your face as it affects your livelihood, such the devastation this condition has had on every aspect of your life, etc.

This is a fantastic idea! I know that seeing someones face is prob better the more humanistic, but this is still better than nothing. People can even put random pictures in the background if they don't want to show a creepy silhouette.

 

[threefirefour]

(I needed to post this somewhere)

Have a look at this Visual Snow Twitter account: https://twitter.com/VisualSnowInit

They are insanely pro cure! They even use the hashtags #CureVS and #CureVisualSnow. No "VS Retraining Therapy", no CBT or mindfulness. They want a cure and they are vocal about it.

They even retweeted a post that said: "#VisualSnow is a devastating brain disorder with no known cause, treatment or cure." When they talk about CBT or mindfulness as ways to cope they always mention that a medical treatment is needed.

They also posted "Can u imagine being caught in a snowstorm 24/7 w/o a way to escape? That's what it's like to live w/ #VisualSnow." and retweeted "hey not that anyone understands or cares, but #visualsnow is a hell of a disorder to live with and theres nothing i or anyone else can do about it". Wished we were allowed to talk so openly about tinnitus.

They openly call it a debilitating condition, a neurological condition, a brain disorder - words you never see when it comes to tinnitus, too scary, too real.

And you don't see people with mild visual snow in the comments saying "this makes me feel bad".

The VS community definitely has its bad eggs but on the whole they're definitely really pro-cure. We still have some catching up to do.

 

[Jack Straw]

I would add to this that we now have another excellent opportunity to create some plea videos and post them onto Prof Rauschecker's campaign page.

If someone makes a particularly good one, but can't afford to donate, I will donate again and post it for you. These opportunities are presenting themselves, but unfortunately, nobody is getting involved.

You need to get your message/s out there! Take everything you've said in this thread and tell the world so they can actually hear you! And I know for a fact that some very influential eyes are watching this campaign.

Where can I read more about Prof Rauschecker and make a donation?

 

[Markku]

Where can I read more about Prof Rauschecker and make a donation?

Here's more about his research that this fundraiser is trying to cover:

https://www.tinnitustalk.com/posts/375987/

And you can donate here:

https://www.givecampus.com/schools/GeorgetownUniversity/support-tinnitus-research

 

[Manny]

I know you mean well, but I also think you are exaggerating and inadvertently disparaging our community and what we stand for.

I think @Autumnly was referring to a certain perspective within the community, not to the entire forum/community as a whole.

 

[Jack Straw]

Here's more about his research that this fundraiser is trying to cover:

https://www.tinnitustalk.com/posts/375987/

And you can donate here:

https://www.givecampus.com/schools/GeorgetownUniversity/support-tinnitus-research

Just donated to the campaign. I am baffled that there are only 8 donors when tinnitus is affected by "20%" of the population.

 

[threefirefour]

I think @Autumnly was referring to a certain perspective within the community, not to the entire forum/community as a whole.

Yeah not all of us are CBT-loons, but there's no denying we have them in excess compared to everyone else.

 

[Jack Straw]

@Ed209

I think more people would donate to the fund if we did one here on Tinnitus Talk and then put the funds to Prof Rauschecker. For some reason people prob feel more comfortable doing it through Tinnitus Talk than a random website. We can also sticky it to the front page. It will also legitimize Tinnitus Talk further getting our name out there.

 

[annV]

I was happy to read Bose is trying to disrupt the hearing aid market

 

[Manny]

@Manny Do you play piano?

I used to...

 

[Bam]

how in hell did TRT (which seems very evidently idiotic as a proper treatment) get so commonly accepted? I just don't get it.

TRT is born of the same mentality you will find in a compulsive gambler who has lost everything and still feeds his last 100 bucks in to a slot machine hoping to win a million dollars. In his heart of hearts he knows it's never going to happen but he's fucking desperate. So he does it anyway.

 

[Bam]

This is a fantastic idea! I know that seeing someones face is prob better the more humanistic, but this is still better than nothing. People can even put random pictures in the background if they don't want to show a creepy silhouette.

Do you think wearing some women's tights over my head while discussing suicidal ideation would be a bit creepy?

 

[Nanny chocolate]

I could donate some tights
@Bam

 

[threefirefour]

Do you think wearing some women's tights over my head while discussing suicidal ideation would be a bit creepy?

Of course not.

 

[Jack Straw]

Do you think wearing some women's tights over my head while discussing suicidal ideation would be a bit creepy?

I can tell you one thing, people will definitely be watching the video. I can't guarantee they will listen to what your saying, but they will def be watching. Most likely confused.

 

[Hazel]

hey are insanely pro cure! They even use the hashtags #CureVS and #CureVisualSnow. No "VS Retraining Therapy", no CBT or mindfulness. They want a cure and they are vocal about it.

We are all pro-cure here too, including those of us who see merit in management strategies like CBT and mindfulness - I'm one of those, as it has helped me personally and many others too. I find the division of the community into different "camps" a bit tiresome. Sure, there are different perspectives, but not so radically different that there's not enough common ground. We all want a cure. Sadly, when real opportunities to contribute to a cure present themselves (such as the Danny Boy fund), it's only a minority that jump on board

When they talk about CBT or mindfulness as ways to cope they always mention that a medical treatment is needed.

In my experience this is not much different from the tinnitus community either. Again, those of us who see merit in management strategies only see them as valuable in so far as they help to tide us over until we have a cure. Similarly, the tinnitus researchers that I spoke to at the BTA Conference who focus on management view this as an "interim" strategy only.

Wished we were allowed to talk so openly about tinnitus.

I don't believe there has been any censorship on this forum wrt to openly discussing 'dark' topics (or are you referring to other places outside this forum?). MPP is actually a prime example of that. I believe @Markku 's comment above makes that clear - he's the founder and key moderator after all.

 

[threefirefour]

We are all pro-cure here too, including those of us who see merit in management strategies like CBT and mindfulness - I'm one of those, as it has helped me personally and many others too. I find the division of the community into different "camps" a bit tiresome. Sure, there are different perspectives, but not so radically different that there's not enough common ground. We all want a cure. Sadly, when real opportunities to contribute to a cure present themselves (such as the Danny Boy) fund, it's only a minority that jump on board

In my experience this is not much different from the tinnitus community either. Again, those of us who see merit in management strategies only see them as valuable in so far as they help to tide us over we have a cure. Similarly, the tinnitus researchers that I spoke to at the BTA Conference who focus on management view them as an "interim" strategy only.

I don't believe there has been any censorship on this forum wrt to openly discussing 'dark' topics (or are you referring to other places outside this forum?). MPP is actually a prime example of that. I believe @Markku 's comment above makes that clear - he's the founder and key moderator after all.

Oh yeah the rest of the tinnitus forums are HEAVILY censored against us, although the situation is improving a little. TSMB straight up removes anti-TRT comments and bans anti-TRT users. We both probably know I have experience with that. R/tinnitus also had a huge problem with this, but the mods are deadbeats so they let the forum slip and they're finally getting redpilled on treatment. The rise of r/tinnitusresearch is a huge contributor to that too.

Tinnitus Talk is definitely the most fair to both sides and that's why it's single-handedly the biggest tinnitus forum on the web.

There are some crappy visual snow forums that act like that but they actually have abandonment issues too. The VS Tapatalk lost a large amount of members because the head mod 2Fries (I think that's his name) is a moron.

On r/visualsnow there was a guy spewing habituation crap and one of the mods threatened to ban him if he kept shitposting. I'm against censorship no matter what but there's no denying that if this played out on a tinnitus forum, the pro-treatment guy would have been banned.

 

[Bam]

Just donated to the campaign. I am baffled that there are only 8 donors when tinnitus is affected by "20%" of the population.

I went for a hearing test today and I asked the audiologist who was wearing a hearing aid if he has T. 'No,' he replied. 'Very few people in my experience do.'

Really?!? I said, somewhat f***ing surprised by this revelation.

...... 'Yes,' said Mike, cheerily, ' only about 5% of the people with hearing loss we see have any tinnitus.'

WTF?!!