Help Tinnitus Hub Fight for Silence

My Tinnitus Story

When I was 17 years old, in 2009 during Christmas party season, my life and perception of sound changed dramatically overnight. The ringing in my ears, which usually would quickly disappear after a night out, became constant.

As months passed, it was ironically the loudest time I spent alone in silence. I was unable to verbalize my experience for fear that it wasn’t real and that others would think I had gone mad. Exhausted from the lack of sleep, I used to spend a lot of time alone staring at the wall crying and fantasizing what it would be like to make it all stop.

A year passed, I withdrew more and more, but finally found the voice to ask for help. Little did I know this would be an even bigger challenge. Long waiting lists and lack of GP and ENT knowledge on tinnitus led to not only bad but dangerous advice for a teenage girl who dreamed of a career working with live sound.

My second and third year living with constant phantom noise were astonishingly tough. I went to university and still couldn’t find a way to tell people about my inner struggles. Nobody at that age had problems like this right? I completely lost my sense of self.

After four years of suffering alone, things finally turned around. I was greeted by a bad bout of hyperacusis – a condition where external sounds cause physical pain. Luckily for me, it wasn’t permanent. But I remember spending three days at home because the pain in my ears was so intense, and I wondered if this was my life now. And if so, what was the point?

It was during that period that I went online and discovered Tinnitus Talk, the online community that saved my life. I read stories from members that reminded me that I was not alone, that others were suffering without silence, but also still surviving and pushing through. I learned that it could get better and that while there may not be a cure, there is hope for many to learn to live side-by-side with their tinnitus. I learned how to speak about having tinnitus and how to communicate my needs to those around me. And it was because of Tinnitus Talk that I learned the tips and tricks and ways to shape my attitude and habituate.

Years later I still have my sleepless nights, off days, and loud bursts where I can’t hear anything but the ringing. While I consider myself a highly functioning adult, I am on a continuous journey learning how to co-exist with my tinnitus and live in hope that one day I will be able to sit in a quiet room comfortably again.

I never EVER want anyone else to experience the loneliness I felt in those first few years. And that’s why the survival, maintenance, and modernization of the Tinnitus Talk online forum are key for helping those with tinnitus to find a community of caring individuals who are all seeking betterment and providing hope.

Listen to me tell my tinnitus story to Chris Anderson from TED!

Tinnitus and its Impact on Quality of Life

An estimated 10-20% of the population has tinnitus, and 1-2% of the population suffers from debilitating tinnitus – that’s millions of people in the US alone! Many are suffering in “silence” but have no choice but to try and get on with it … if they can. Chronic anxiety and depression are common among this group.

Because of the lack of effective treatments and lack of knowledge among healthcare providers, many sufferers seek help online. Our surveys show that 30% of those seeking help online have had suicidal thoughts due to their tinnitus. And the awful truth is that on Tinnitus Talk we’ve lost several members over the years to suicide. We are committed to avoid this from ever happening again.

What is Tinnitus Talk and Why Should You Care About It?

Tinnitus Talk is the biggest online forum for tinnitus sufferers. People can discuss issues pertinent to them and support each other. Discussions are organized into categories for easy browsing, and the forum is closely moderated to avoid abuse. We do not allow advertising. The site is however in dire need of an upgrade, and next to the discussion forums we want to add new sections with objective and reliable educational information.

Tinnitus Talk is run by Tinnitus Hub, a registered 501(c)(3) non-profit. The organization is managed by people who suffer from tinnitus and volunteer their time to help others. Having benefited from the Tinnitus Talk community myself, I became involved as a volunteer. Recently, I attended a major hearing research conference (ARO), where I was astounded to learn how little most hearing researchers know about tinnitus. That needs to change. We need more research into tinnitus. We need a cure for all those people suffering from this invisible and debilitating condition.

The quest for a cure starts with a strong patient community. A community where people help and support each other. And where they can also learn about the latest developments in research and treatment. Knowledge is power. This is why we need funding to revamp the Tinnitus Talk website as a knowledge base – a place where people can connect with other sufferers, but also get educated and become involved in the quest for a cure.

Please help us re-invent and innovate Tinnitus Talk so that we can help more tinnitus sufferers and work together to push for a cure!

Check out the Tinnitus Talk community

Check out the Tinnitus Hub 501c3 website

How Will the Funds be Used?

The funds raised will be used for front-end and back-end web development. The aim is to implement a new modernized design, improve user friendliness, and add new sections with educational resources. The educational resources will be evidence-based and will cover topics like tinnitus causes, treatments, where to find help, and the latest scientific developments. We will collaborate with tinnitus experts who will validate our content for accuracy and reliability.