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

Discussion in 'Awareness & Fundraising' started by Tinnitus Talk, Feb 7, 2018.

    1. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      SOME (the ones that have been sent in on time!) of the posters to be presented at the Annual Conference on Friday are now available to view here; https://www.tinnitus.org.uk/blog/poster-session

      Great to see @Markku and @Steve as named authors on one, representing a study of data collected via Tinnitus Talk.
       
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    2. Alexandroula

      Alexandroula Member

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      ear wax removal
      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
       
    3. Deamon22

      Deamon22 Member Benefactor Ambassador

      Tinnitus Since:
      06/2018
      Cause of Tinnitus:
      Head Trauma/Cold?
      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.
       
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    4. Myra Cingolani

      Myra Cingolani Member

      Tinnitus Since:
      06/2014
      Dr. David B.--Has any progress been made whatsoever in understanding the causes of pulsatile tinnitus? Possible treatment? Surgery?
       
    5. IvanRus

      IvanRus Member

      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      ototoxicity
      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?
       
    6. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Any other members coming to the Talking Tinnitus Expo in Birmingham this Saturday?

      There's still time to get your tickets!

      love glynis
       
    7. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Markku, @Steve,
      Well done for your entry and for being named authors.

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

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    8. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
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    9. dj_newark

      dj_newark Member Benefactor

      Tinnitus Since:
      1990
      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.
       
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    10. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @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
       
    11. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @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
       
    12. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Fantastic day at the Talking Tinnitus Expo.

      expo.jpg

      We did Tinnitus Talk and Tinnitus Hub proud.

      More to come soon.

      love glynis
       
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    13. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      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!!!!!
       
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    14. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
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    15. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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.
       
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    16. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Steve,

      My phone crashed recording your talk.

      Now have a 64 gig memory card with direct back up to my Prime :)
      .....
      Brilliant day xxx
       
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    17. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Really enjoyed meeting and speaking to those of you I got to talk to, sorry I didn't get to speak to you all.

      Thank you for getting involved, the day felt like a real success.
       
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    18. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Is everybody short or are you just a giant @Steve?
       
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    19. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @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
       
    20. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      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 :)
       
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    21. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I’m between 6’0 and 6’1.
       
    22. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      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.

      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.
       
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    23. jimH
      No Mood

      jimH Member Benefactor

      Tinnitus Since:
      30 years+
      Cause of Tinnitus:
      Acoustic trauma
      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."
       
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    24. Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      @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
       
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    25. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      I think we are all blushing now...

      @Ed209, @Markku is working on the album design as we speak.
       
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    26. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      :p
       
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    27. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Hey, you can be the opener for the next TRI/TINNET Conference!
       
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    28. Hazel
      Dreaming

      Hazel Director Staff Benefactor Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      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 ;)
       

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    29. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      You guys are the real deal. Congratulations to all of you! Well deserved. Cheers!
       
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    30. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      (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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