Talking Tinnitus — a U.K. Expo in Birmingham on Saturday, 15th September, 2018

#152
Hi,

Not sure where to post my questions for the event on Saturday, or even if it's too late, but here they are:

1. Habituation: I have been suffering from tinnitus now for ten months and have not habituated. It was caused during an ear wax removal process using some kind of suction device. Is there any chance that habituation will be achieved even after this long time period?

(perhaps questions for Professor David Baguley/Dr. Roland Schaette)
2a. I understand that tinnitus and/or hyperacusis can be caused by microsuction. How does this happen and why is this procedure being carried out if there is such a risk?

2b. I have seen in-ear devices, which are very expensive, which claim to aid habituation. How successful are they?

3. I suffer from sensitivity to infrasound and wondered if there is any connection to tinnitus? It seems like too much of a coincidence that I got tinnitus after an ear wax removal process.

Thank you
 
#153
No question, but a BIG THANKS to everyone from Tinnitus Talk and all the members who are helping here and moving things forward. Thank you :) I'll make another donation to Tinnitus Talk next month.
 
#155
I would like to believe that this conference and expo will have some practical value as a result.

But I doubt it very much.

Read this brief interview with Marcus Bowen.

https://www.tinnitus.org.uk/blog/the-quest-for-a-cure

He will just be reporting on the topic "Will we have a cure?"

In this interview, he says, as they also said 10 years ago: "Well ... maybe in the next decade there will be a treatment, maybe not."

Lol. What does he know? He cannot give us a specific answer?!

For me it's, to be honest, very absurd. Well, how can we find a cure for what is not yet understood?

The neuromechanisms of tinnitus itself are not understood, which is very strange.

How could this have not been figured out yet in so many years?
 
#156
Any other members coming to the Talking Tinnitus Expo in Birmingham this Saturday?

There's still time to get your tickets!

love glynis
 
#157
@Markku, @Steve,
Well done for your entry and for being named authors.

Tinnitus-Heterogeneity-and-Responsiveness-to-Treatment.png
 

Attachments

  • Tinnitus-Heterogeneity-and-Responsiveness-to-Treatment.pdf
    1.7 MB · Views: 71
#159
TuxedoCat said:
Could you please ask Dr. McKenna any (or all) of the following-
  • Is psychological therapy like MBCT considered a complimentary therapy or conventional medicine?
  • How are psychological therapies the same or different than the placebo effect? What is the role of the placebo effect and enhancers of the placebo effect in psychological therapies?
  • Information about mindfulness therapy on the BTA website says that avoiding quiet places, using sound generators, keeping busy and using distractions are manifestations of worry and attentional focus on tinnitus that make habituation less likely to happen. (The Psychology of Tinnitus https://www.tinnitus.org.uk/mindfulness-for-tinnitus). Yet, these very things are prescribed by healthcare professionals, such as yourself, during TRT and recommended by audiologists and other healthcare professionals. Please comment.
Many thanks, TC
Click to expand...

It's a great list of questions. However for sufferers of very severe, off the charts tinnitus like me I have absolutely NO faith, belief or hope in a psychological approach for dealing with Tinnitus.

For cases like mine, Psychology simply will not help.

Also I do NOT see Tinnitus as a psychological condition. Though your reaction to it may be considered as such.

To me it's a very raw, physical malfunction of the brain that generates the sound. It's there. Even if the sound is only in my head. It's not my imagination or the way I think that's producing the sound.

Fortunately there IS Tinnitus research that's attempting to solve the root cause of the brain malfunction that causes Tinnitus.

Research at places like the University of Michigan and the university of Minnesota are making great strides and hope to have their devices out on the market in the next 2-5 years.

And then there's companies like Decibal Therapeutics, Frequency Therapeutics and Audion Therapeutics in a race to to cure hearing loss. Many, including myself believe strongly that this will also reverse tinnitus. How much or how little remains to be seen however.

So it's an exciting time to be alive for those of us who believe a cure of the root cause of tinnitus will be seen very soon in terms of years.

I do agree that psychology can help some people with milder forms of Tinnitus. But it is of absolutely NO use to severe cases.
 
#160
@Steve and @Hazel,

Hope the BTA Conference went well today and you were able to get some good interviews.

All packed and will see you all tomorrow morning for the Expo.

love glynis
 
#161
@dj_newark

Thanks so much for your comments.

I agree with you on all your points. I would add that psychological therapy may be a good complementary therapy to an effective treatment that lowers volume substantially, basically bringing tinnitus into the mild range.

TC
 
#162
Fantastic day at the Talking Tinnitus Expo.

expo.jpg


We did Tinnitus Talk and Tinnitus Hub proud.

More to come soon.

love glynis
 
#163
glynis said:
We did Tinnitus Talk and Tinnitus Hub proud.
Click to expand...
Thank you guys for the photo!!! You all look great in the Tinnitus Hub T-shirts!!! I notice @Jazzer, @Hazel and @Steve. Who are the others?

I know this day is going to be great for those there and for us here.

Yes more photos and reports or little videos from your phones?

Thank You all!!!!!
 
#165
It was a really good day yesterday. Great to meet the Tinnitus Talk people that came along and great to talk to so many people there.

Many of the people we talked to were struggling, some had support from their partners and they had also attended. But the difference for many was actually talking about their experiences to other people with tinnitus, realising that much of what they experience is also experienced by others.

It can be emotionally draining but it was also really nice to see a lot of relief talking to people and seeing them talking to others. That moment when there is a sharing of the experience and they feel they have got something off their chest that they couldn't properly express to their friends and family.

People we talked to seemed to get a lot out of the day, overall it felt like one giant support session.
 
#169
@David,

It was great to meet you in person and the rest of the BTA staff who know me.

Great to see so many people supporting tinnitus and I know everyone who came to the Expo came away with better understanding of tinnitus from the talks throughout the day.

I hope it's the first of many more Expos.

Our team enjoyed talking to so many people seeking support and lovely also to promote Tinnitus Talk and Tinnitus Hub.

Hope we get to see you all again.

love glynis
 
#172
Steve said:
It can be emotionally draining but it was also really nice to see a lot of relief talking to people and seeing them talking to others.
Click to expand...

Thanks so much for what you all did over there! This is the problem. Support can be emotionally draining because we see the needs medical or financial that simply do not exist. And it reminds us how we felt in the beginning stages and so on.

Steve said:
That's exactly what I said when I saw the picture! I'm somewhere between 6'2 and 6'3 so I guess I'm not exactly small :)
Click to expand...

Well...not to mention @Steve you are also very handsome. :) And so is @Ed209 and @Jazzer. :whistle:

And @glynis you are a beautiful person inside and outside. @Hazel simply beautiful!!

The event sounds like a great success. I remember years ago attending a few ATA big events like this. I did meet a few good friends there but it was when I first got tinnitus - and I was so very lost and alone inside. Knowing I met a good friend like me (in real life) helped a lot.
 
#173
Steve said:
That's exactly what I said when I saw the picture! I'm somewhere between 6'2 and 6'3 so I guess I'm not exactly small :)
Click to expand...
Yeah, I just assumed that you must be pretty tall. I didn't think that five out of the six of you could be "vertically challenged."
 
#174
@Starthrower, you sound like a groupie :cool:

After reading your message I now see this pic in a new light:

2865E6FF-3768-4461-9B8E-D105513EAB83.jpeg


This is very much a band photo right here. Looks like a new super group helmed by @Jazzer. 'Tinnitus Hub and the maskers' with their debut album: 'we keep it below 80' :p
 
#175
#177
Ed209 said:
This is very much a band photo right here. Looks like a new super group helmed by @Jazzer. 'Tinnitus Hub and the maskers' with their debut album: 'we keep it below 80' :p
Click to expand...

Hey, you can be the opener for the next TRI/TINNET Conference!
 
#178
Hey folks, on a more serious note, please find below the presentation that we delivered during the Expo.

tinnitus-hub-presentation-talking-tinnitus-expo-2018.png​

It's based on a survey we conducted earlier this year (some of you may have filled it in) about how tinnitus affects various areas of our social lives, and the support (or lack of support) we receive from our significant others.

The key finding was a very strong and statistically significant correlation between the degree to which someone is bothered by their tinnitus and how socially withdrawn they are.

So basically we've gathered some hard data to support what we so far knew only anecdotally: that tinnitus can have far reaching social consequences. We'll try to use this for follow-up awareness raising campaigns.

Any comments or questions welcome!

P.S. I'll join the band as long as Steve is the singer - a little birdy told me he's quite talented in that area ;)
 

Attachments

  • Tinnitus-Hub-Presentation-Talking-Tinnitus-Expo-Birmingham-2018.pdf
    15.5 MB · Views: 84
#180
(Talking Tinnitus Expo, the day after):

Got up early today, my tinnitus was screaming.

I've also shed some tears, yesterday knocked me for six and today am feeling deflated and a bit lost.

Lots of stories to take in. We were all fully engaging with people, which I felt was important, as when I went to the last BTA conference, meeting people provided me with comfort so wanted to do the same for them.

Many of them were accompanied by well meaning friends or partners but I couldn't help feel that it's a lonely burden to carry, that only "club members" truly understand. That in our day-to-day life we are on our own.

Echoing @Jazzer's comments, I wish I could just take it away from all of them.

Then I remind myself of how we have this forum to connect with each other and how just because it's not face to face one still gets to know people and sometimes in a more intimate way.

That as a community we have a strong voice and that people are starting to take the condition seriously, which was my main take-home message, given the increase in research activity.

For that we have @Markku and @Steve to thank. Your devotion to this cause is laudable and I can't express my gratitude enough.

@Steve - I'd read some of your posts and knew you were a sound guy. In person you are ray of sunshine. I felt cross at myself for getting so upset today, knowing that you engage with people in distress all the time and just want to give you a virtual hug.

@glynis - I thanked you yesterday for being always there for everyone on the site, what an amazing contribution.

@Hazel - such a doer, didn't get to say au revoir, I wish you lots happiness in your next adventure.

@Jazzer - what a charming gent, thank you for being there yesterday and making me smile.

@Angeline - you gave me hope, you are a trooper and hope one day we can share a glass of Sauvignon together. I know you'll bounce back.

Sorry didn't mean to produce an Oscar speech but "it's been emotional" .

Good night x
 

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