What NOT to do: My message for the Pure Tinnitus community

Tinnitus community

 

Tinnitus community, Tinnitus Group

This is my message to the Tinnitus community. In this month’s episode, I wanted to take a step back and talk about some of the many organizations out there for people with hearing disorders. These groups provide so many invaluable resources. And I honestly think that they’re underutilized simply because people aren’t aware of them.

So let’s change that. I had the pleasure of speaking with three of the many organizations out there, Tinnitus Hub, Hands & Voices, and the Association of Late Deafened Adults. After speaking with these groups, I was amazed at how truly selfless they are.

And if there was one unifying message, it’s that regardless of your hearing, you are not alone. Support for the Hearing Tracker Podcast comes from Nuheara. Nuheara is transforming the way people hear by creating personalized hearing solutions that are multifunctional, accessible, and affordable.

Can you hear me now? This is the Hearing Tracker Podcast from HearingTracker.com. Have you ever been going about your day when all of a sudden one ear seemed to go dull and you begin hearing this high pitched ping.

Hearing returns to normal

After a few seconds of this weird sensation, you’re hearing returns to normal. I know this happens to me and it can be pretty alarming when it does. Fortunately, this is rarely something serious and it falls under the category of spontaneous ear noise.

In fact, most of the population experiences this every now and then. And you can chalk it up to random neuronal firings. But imagine if you heard a ringing or buzzing noise like that all the time. While at work, while working out, and even when trying to sleep, What we’re talking about here is tinnitus and it is a daily reality for millions of people around the world.

It’s generally described as ringing or buzzing in the ears. And another description you often hear is the perception of a sound that is not externally generated. So the sound doesn’t come from the environment, but it comes from inside you.

Basically that’s the most basic description. That was Hazel Goedhart, the Director of Tinnitus Hub, a nonprofit organization that focuses on education, connecting patients, and furthering research all around tinnitus.

I think what many people don’t realize is just how many forms of tinnitus there are. The most common one is a high-pitched ringing. Some people hear like crickets or typewriter-like noises or even musical noises.

Different noises

Some people even experienced three or four different noises at once. There really isn’t enough understanding of the causes of tinnitus .By causes, I mean the mechanisms in the ear and the auditory pathway and the brain that creates the tinnitus signal.

There’s a number of theories out there, but there’s certainly no unified or coherent view on it. So that’s definitely one of the, one of the issues. Anyone who’s familiar with tinnitus probably knows that there’s a lot of uncertainty around the topic.

And as Hazel just mentioned, there’s still a lot that needs to be uncovered. Sometimes I like to think of tinnitus as the runny nose of our hearing system. And by that, I mean that it can be caused by so many different things.

Tinnitus can be associated with hearing loss, stress, medications, diet inflammation, as in the case of ear infections or chronic jaw issues. It can be a sign of acute injury to your hearing system like that fuzzy ringing feeling in your ears after you leave a rock concert, it can be a sign of serious medical issues.

Or it can be something that you were born with. In fact, much of the population will hear some type of tinnitus if they’re in a quiet enough space. You can try this right now in fact. Walk into a quiet part of your house.

Absorbing sound

This will likely be a closet due to all the hanging clothes absorbing sound. And just stand there for a minute. Can you hear anything? So what is Tinnitus Hub and where did they get their start? I think Tinnitus Hub was born from the fact that there are so many people around the world who suffer from tinnitus.

And the fact that the treatment options really aren’t that good. And it’s frustrating sometimes to see how tinnitus is talked about in the media. Often the story will go something like Bob suffers from tinnitus.

He had a terrible time with it. He couldn’t sleep, but then he got used to it and now everything is fine. You know, something like that. I’m sort of maybe exaggerating a little bit. But there’s still a significant group of people that really struggle from day to day for many, many years.

Tinnitus Hub serves as an information and support community for those who are suffering in this way. What we do basically is we offer peer to peer support. So the tinnitus talk forum. Where people can connect online, form an online community that supports each other.

They keep each other up to date on research news and treatment news. And yeah, just provide emotional support to each other. I think what we hear most often is that people come on to tinnitus talk and for the first time they feel understood.

Talk to their doctor

They feel heard. I think that’s the biggest thing for many people, because they will talk to their doctor who kind of dismisses them. They will talk to friends and family and relatives who either really don’t even understand what tinnitus is or they will say something like, “oh yeah, my brother hears a noise sometimes, but it doesn’t bother him”, you know, or something like that.

And that’s like, okay, that’s great for your brother. But what I have is different, you know, and they just feel like, okay, why is no one, you know, understanding what I’m saying here, that I’m just hearing this continuous unrelenting noise in my head that won’t go away.

That’s always there. That I can’t escape from. Tinnitus Hub also offers other channels of information such as their podcast. We have the tinnitus talk podcast, which mostly focuses on research news, but also personal stories and information about tinnitus healthcare.

What we are hearing from the tinnitus community is we want more research that is specifically focused on developing better treatments and specifically treatments that actually treat the root cause and not just the symptoms, you know, not just the distress that you’re feeling from the tinnitus.

Tinnitus Hub

Tinnitus Hub uses the reach of their online community to collect data through surveys. And they share this information with researchers facilitating the future of their cause. So being a part of the Tinnitus Hub community is really being a part of the solution and hopefully finding better treatment options for tinnitus down the line.

The only sort of real treatments out there are more meant to help you cope with the condition or manage it. But it’s really more like learning to deal with your emotional response to the tinnitus signal.

But there’s really nothing apart from a few anecdotal stories here and there that people feel like they got cured by taking some supplements. People often they don’t even get offered that. They just get told by their doctor “Well, you have tinnitus.

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