BBC Radio Documentary on Tinnitus and Hearing Loss Broadcast Today

https://www.bbc.co.uk/programmes/w3csynqv

The BBC World Service radio broadcast this documentary today. This was the synopsis:

Hearing me

What does life sound like for someone with tinnitus? Carly Sygrove is a British teacher living in Madrid. She was sitting in her school’s auditorium when suddenly her head was filled with a loud screeching sound.

Diagnosed as sudden sensorineural hearing loss, Carly no longer has any functional hearing in her left ear, and battles with the whoops, squeals and ringing that comes from having tinnitus. This dramatically changed her work and personal life, as well as her ability to communicate in a country thousands of kilometres from where she was born.

It made Carly realise how fragile our bodies are - and how wonderful sounds can be.

In this intimate programme for the BBC World Service, Carly shares her personal story and speaks honestly about how life with hearing in only one ear is far from quiet.​

 

Posting this here because I don't think it needs it's own thread:

Tinnitus: Warning for music fans attending concerts
By Paul Jones, BBC Wales News

Does anyone know how to contact the author? Because in the article he wrote this:

• "Over time, people can go through a process called habituation where the brain can tune out the sound of tinnitus"

I hope we'll see more people taking chronic tinnitus seriously, understand how debilitating it can be and that we need medical treatments once the first medical treatments are being launched on a broader scale. Neuromod is already giving appointments in 2020, there clearly is a dire need.

 

It's good to see that because most people just aren't aware they can end up with this shit for life after a gig. Warnings don't tend to appear. It probably does deserve a thread.

 

My husband just read it and told me I’m making a big deal out of tinnitus and everyone gets used to it... @Autumnly

Of course lots of people do, we know that. I know that when mine is less intense I manage it better too.

We almost need a media standard response for all these articles to email in.

Plus the fact that he’s a musician doesn’t necessarily make it worse... Martin Kemp says he only has it in one ear and it’s not that bad. Some people have it all over their head and ears with crazy volumes, no hearing loss for no known reason! Some people have it loud with hearing loss on top!
Until we have imaging of tinnitus we won’t know for sure...

Having to justify why one struggles with it is not what we need.

 

I'm so sorry to hear this... This is exactly why I believe it's important to represent the full tinnitus spectrum whenever we can. It hurts our cause whenever someone either deliberately tries to hide the more severe side or simply doesn't know better.

Your idea of having a standard response sounds great! I left a response on twitter but I don't think anything is going to happen. It would be best if someone could reach out to BBC Wales / the author on behalf of TinnitusTalk, that would immediately look more professional - obviously we'd have to talk with @Markku and @Hazel first.

 

There's plenty of examples of tinnitus sounds on YouTube. Find one that matches yours, turn it up on your phone or computer next to him and leave it on. See how he goes. I'll give him two, maybe three minutes before he starts reaching for the stop button.

 

Dear Candy
The reason I made my awareness video was precisely to counteract attitudes like this.
Encourage him to watch my video if you can.
If he doesn't believe my words he might just pick up on the anguish self-evident in my face.

I have had severe tinnitus continuously every millisecond for over five years.
IT - IS - HELL - ON -EARTH !!!!!!!!!!

Our partners, of all people, should believe us, and support us.

“LOVE US
- OR YOU JUST MIGHT LOSE US !!!”

 

Thanks very much for posting.
I had missed it.
Cheers.

 

I think we all agree...

Just to clarify my hubby has been very supportive throughout but it does get a bit much sometimes for him, especially as I’ve been in a bad place recently and he’s had to take on a lot more. He’s exhausted...

But it does get to me when I have to justify myself to people around who tell me it’s ok and people get used to it. It's so much more complex...

“While the majority of people affected by tinnitus are able to habituate, 2% experience various degrees of debilitating symptoms. It is estimated that in the UK and US alone the number of people struggling with tinnitus is respectively x and x.
Tinnitus Hub is committed to finding an effective treatment for tinnitus sufferers through medical research.“

What do you think?

 

I agree. And when severe cases (like mine back in 2002) are mentioned we are suddenly placed in the blame the victim role. There is something wrong with me. I cannot just get used to it. And these people are usually given the harsh talks on other sites saying we are wrong to be so distressed.

I remember that time too well.

There is a difference between expressing how severe tinnitus cases are and those who either are veterans or those who simply say read my book and you will be okay.

And then some do go on and on about the misery they are living. Which seems to scare others and cause discord.

I noticed the same situation when I was in my SOS (survivor of suicide) group and the "other" world. The survivors are often taken as weird or whatever. And they are not allowed to speak of "it".

So the silence from us is where we find solace. That and simply going off the grid in every form regarding the severity of tinnitus.

After a decade I have found my balance to survive tinnitus. It isn't something you can teach in the first few years.

 

Just chiming in here - I'm very cautious when it comes to saying hearing loss is the number one cause of tinnitus. It doesn't explain why hearing loss exists without tinnitus. Case in point, I have a first cousin who has had significant hearing loss since childhood. Now that he is in his 50's he's developed tinnitus.

Philip Gander, who participated in an ATA podcast, suggests that hearing and tinnitus are independent of one another. The Podcast can be found on ATA's website - Episode 6: Mapping Tinnitus in the Brain.

The brain may be an important factor, even the more important factor especially for those of us in the over 50 age range. However it has been very difficult to study the brain because the tools have not existed. It's been far more easy to study and treat the hearing loss because it's measurable by standard methods and the anatomy and physiology of the ear are known entities. Less is known about the brain.

In a way, it's too bad the treatment guidelines for tinnitus recommend against doing an MRI on tinnitus patients. Something may have popped up through clinical observation and impressions may have been formed which could in turn inform research. Instead we get the short shrift because there are no tests for tinnitus and the focus becomes the hearing loss. So it's off to the audiologist.

TC

 

I think what we’re all saying is that there needs to be visibility of more debilitating tinnitus and messaging that it’s not always preventable. So the onus is not on the patient. (Debatable because the onus is always on us as there is the pervasive argument of the patient’s inability to adapt).

However even in the cases where it is preventable there is very little awareness and work on prevention. The BTA are making some progress.

 

There needs to be more of a grassroots effort, and this should start in our schools. We learn about the dangers of fire, roads, drugs, sex, alcohol, etc, but never hear a thing about the risk of being exposed to sustained levels of dangerous noise.

There has to be more education around this with a clear message of what’s at stake.

 

I totally agree with this. I remember when I got tinnitus, my folks had never heard about it before and I had to educate them about it.

I always remember hearing that you could go “deaf” from loud music/sounds, but I never heard anything relating to tinnitus growing up.

 

Here in the States the schools will not use the limited sources for new programs.

The best I heard and witnessed at middle schools here was this program: http://dangerousdecibels.org/

The grade school kids were very interested in learning the concept of loud noise and the use of headphones.