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. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      @Moderators can you please tag Dr. Roland Schaette, Professor David Baguley and "Various names" at the beginning of my question list, as well as a "thank you for taking the time to answer these important questions" at the bottom.
       
    2. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Hi Contrast, unfortunately this won't work, as we will have limited time with each speaker. Everyone will be busy attending talks, including ourselves, and the interviews will take place in between. Hence, if you want us to pose your questions, please attach names to each individual question. It would also help if you could list the questions in order of priority, so that we can make sure to at least address the most important ones. Again, time will be limited, and we might only get to ask some speakers one or two questions, so we'll need to be selective. Sorry, I don't mean to be demotivating, as we do appreciate your questions.
       
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    3. Manny
      In pain

      Manny Member Podcast Patron Benefactor Hall of Fame

      Location:
      United States
      Tinnitus Since:
      1/2018
      Cause of Tinnitus:
      central gain << NIHL
      @Hazel:

      The questions mentioned by @Contrast are the ones I want asked. No more, no less. Especially questions # 1, 3, 4, 5, and 7.

      For me personally I'll distill things into a single question:
      Question: Can the tinnitus researchers and advocates please advise on: how to encourage researchesrs, investors and governments to focus on cochlear and auditory nerve regeneration. This relates directly to both tinnitus and hearing loss.

      Background to question: It seems very likely that curing hearing loss, including "hidden" hearing loss, will reduce tinnitus in many or most cases. This is indicated by the fact that many hearing aid users report a reduction in tinnitus when they use their aids; as well as the fact that hearing loss often seems to be the cause of tinnitus in the first place. This would be the best and only true cure, one that eliminates the cause of tinnitus at its root.

      As such, how can awareness be raised for research towards diagnosing hearing loss - including "hidden" hearing loss, and curing it using regenerative technology? VA departments of national governments currently pay huge sums of money to veterans for hearing loss and tinnitus disabilities, so they would have strong incentive to invest in a real one-time-use cure.

      Again - these hard science questions are the ONLY thing that will lead to the true cure of tinnitus.


      Tinnitus researchers and advocates would presumably be best suited to answering this question. This is because they have the most knowledge of the situation on the ground. That is why I would like this question(s) posed to them.

      Some specific names of individuals to ask would include David Stockdale and Torryn Brazell (heads of BTA and ATA respectively).


      Thank you Hazel for all that you are doing here, and for reaching out to us here at Tinnitus Talk.

      Respectfully,
      Manny
       
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    4. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      Questions 3, 1, and 5 for Dr. Roland Schaette
      Questions 1, 8, 10 for Professor David Baguley
      Questions 7 and 9 for David Stockdale and David Carr

      These are the most important questions certain researchers and BTA employees that I tagged.

      Huge thanks to them for taking the time to answer these questions.
       
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    5. ridgew

      ridgew Member

      Tinnitus Since:
      2004->2012->2017
      Cause of Tinnitus:
      Acoustic trauma
      It's a pity there will be no videos of the talks available. May be someone of the attendees will find a possibility to record if not video but audio? Would be very much appreciated.
       
    6. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Uncertain, now very somatic, started with noise?
      I have some simple questions. Answer may who ever wants.

      1. Would it make sense to pay more attention to the description of the ringing in the ears?

      2. Would it make sense to distinguish between noise-induced tinnitus and non-noise-induced tinnitus?

      3. What do you think about somatic tinnitus?

      4. Should tinnitus sufferers protect themselves from everyday noise more than people who have no tinnitus?

      5. Can you prove or rule out, whether damage to the inner ear is the reason of tinnitus?

      Regards,
      Tinniger
       
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    7. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      https://www.sagerx.com/therapeutic-focus/

      This company which has over 500 million dollars in cash has mentioned tinnitus as one of their neuro considerations.
      The best neuro scientists work for this company and they get paid a ton of money. They are doing research on GABA and NMDA receptors. They have a green light from the FDA to finish a 3rd stage clinical trial for depression that has no side effects. It's also not a benzo and there's no real taper needed - the first drug ever of this kind. Approval may happen before the end of this year.

      Within the link send them a message under CONTACT to conduct a tinnitus trial.
       
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    8. Apolonia
      Disappointed

      Apolonia Member

      Location:
      Croatia
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      Noise induced, acoustic trauma
      I think that this is like Betaserc. I was taking Betaserc and I don't have Meniere's and it did not help with my tinnitus. It was pretty much the same. These drugs are only useful for Meniere's disease. That is what I can say from my own experience.
       
    9. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Sorry to sound like a broken record, but as I explained above, we can't simply ask long lists of questions to all the speakers. It would be really helpful, and increase the chances of your questions reaching the right person, if you could indicate who to direct them to. Thanks in advance.
       
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    10. MBH

      MBH Member

      Location:
      Upstate NY
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      Overloaded stress
      I would like to ask about the correlation between the brain and the ear and can they pinpoint where tinnitus originates from or where they think it originates from.

      Due to the fact that there is a link between the two. It's not just the brain or the ear.
       
    11. MountainCreek

      MountainCreek Member

      Tinnitus Since:
      05/2016
      Cause of Tinnitus:
      Car Radio
      Dear Professor David Baguley,

      I would like to define tinnitus objectively as a sound one hears at a certain frequency and at a certain dB level that may or may not vary over time. If one wants to lower the tinnitus dB level, can this happen if one locks oneself inside a sound isolating chamber for months, or years, and never goes out from it?

      Best regards,
      MountainCreek
       
    12. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Professor Berthold Langguth are you aware of the suicide rates with tinnitus patients? Do you understand that moment the nano-second of time when that person hesitates? Do you understand in this nano-second of time in some - the tinnitus is screeching so loud they are unable to hesitate and make a different decision?
       
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    13. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      I agree with @Starthrower!

      Are they aware of suicide rates amongst tinnitus patients or they still believe it’s not higher than in general population?

      You brought tears to my eyes! It’s that very nano-second I’m dreading:(
       
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    14. WaqasVic
      Artistic

      WaqasVic Member

      Location:
      Pakistan
      Tinnitus Since:
      01/2013
      Cause of Tinnitus:
      My T is way different than all of you , ask me how
      The researchers should also research the tinnitus and the sleep mechanism of the body, I think the treatment for tinnitus is hidden within the sleep system...
       
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    15. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      @Contrast, good questions btw. I may think of another of my own later, but right now I do have a couple of unscientific questions:

      I could probably get an answer to one of them by @David on here:

      Have you ever conducted a survey to find out what people would like to see their money spent on? In other words, what can be done to make donating more appealing?

      My other question could be directed to Roland Schaette, but any other researcher that’s accessible can be asked the same:

      Is there a way that the tinnitus community can donate directly towards their research efforts without going through an institution? In other words, guaranteeing it gets spent on actual research?

      Thanks for all your hard work @Hazel / Tinnitus Talk
       
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    16. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Question for Don Mcferran

      Given that many of us severe sufferers experience some headache pain on occasions, what are the safest painkillers on the market for us to take re. ototoxicity?

      So far - Paracetamol has been recommended to me.

      But is that correct?
       
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    17. Dizzyhead888

      Dizzyhead888 Member Benefactor

      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Medical mistake
      Yes, many questions are for our knowledge and to satisfy our curiosity, but "us" getting more knowledgeable about tinnitus is not going to get us closer to treatment/cured. Therefore, questions should be focused on how we can assist. Simple and the most important question from our side:

      "What can we/Tinnitus Talk do to help in accelerating the path to an effective treatment/cure?
      Can we conduct specific surveys for your research / can we raise money / can we do anything?"
       
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    18. Greg Sacramento

      Greg Sacramento Member Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      From FDA reports - tinnitus - the safest
      Paracetamol - OTC - only a 0.27 chance for men - almost twice this percent for ladies

      Tramadol - Prescription - stronger than an OTC - only 0.15 for men - almost three times this percent for ladies
       
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    19. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      04/2017
      Cause of Tinnitus:
      High-frequency hearing loss
      My question is for Torryn Brazell and David Stockdale,

      Dr. Dan Polley, Director of the Lauer Tinnitus Research Lab at Massachussets Ear and Eye Infirmary, has said that tinnitus research lies at the intersection of Neurology, Otolaryngology and Neuropsychiatry but these disciplines don't talk to one another.

      What can ATA and BTA do to encourage research by facilitating communication among these 3 groups of researchers?
       
      • Good Question Good Question x 1
    20. Scott Haas
      Insomnious

      Scott Haas Member Benefactor

      Location:
      Portland OR USA
      Tinnitus Since:
      02/1996
      Cause of Tinnitus:
      Multiple Ototoxic IV Antibiotics post Motor Vehicle Accident

      I would like to pose a question to Don McFerran. About one year ago I went to see an ENT re: my worsening Tinnitus. It was this doctor's opinion there are only two causes of tinnitus; brain tumor or mental illness. When I suggested it was ototoxic antibiotics, she countered there was no scientific backing for that and suggested I probably had a mental illness that was causing my tinnitus instead. She began talking about how her other patients with tinnitus were all mentally ill and gave me names of psychologists. I had never seen this doctor prior and she did not complete an examination.

      My tinnitus began after a motor vehicle accident twenty-three years ago resulting in a double compound fracture (tib/fib). I was on heavy IV antibiotics in the hospital, had three surgeries to correct the injury, and then was given antibiotics in pill form to take home. I then ended up with a very strong antibiotic about a month later when a recurring infection traveled down my leg to my big toe and erupted through the skin. This was a head on collision so undoubtedly there may have been a light TBI as well. I had an airbag. The combined impact would have been 90 MPH as we were each traveling about 45 MPH (he fell asleep at the wheel).

      My question. Can antibiotics or other meds cause tinnitus? If so, which ones and why does this doctor believe it is a sign of a mental illness? Is this a common held belief among doctors?
       
    21. Helen Birkbeck

      Helen Birkbeck Member

      Tinnitus Since:
      1970s (permanent since my late forties)
      Cause of Tinnitus:
      Not known, though grandmother had it
      I would like to ask Dr Schaette why, if my tinnitus is linked with hearing loss, as I've been told, it began in my teens when my hearing was fine and affects one ear much more than the other even though I now have mild hearing loss in both ears. My grandmother had bad tinnitus too, so is there a genetic link?
       
    22. Soep

      Soep Member

      Tinnitus Since:
      april 2016
      Cause of Tinnitus:
      maybe stress
      I have a question for David Baguley.

      When I press my finger on my ear firm (with my tragus) my tinnitus stops. Nobody can explain this. Maybe you? I have tinnitus in my right ear.

      Greetz Soep
       
    23. Hazel
      Dreaming

      Hazel Director Staff Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      the Netherlands
      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      one-sided hearing loss (of unknown origin)
      Hi all, a lot of good questions so far, keep them coming!

      I also wanted to draw your attention to the fact that there are still a few tickets available for the Expo this Saturday in Birmingham UK. You can purchase your tickets here.

      Furthermore, please find here the map of the exhibitors at the Expo, i.e. the organisations and companies that will be present with information stands. We could approach some of these as well (in addition to the speakers) to interview them or ask questions, so please check them out!
       
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    24. Dilshaad

      Dilshaad Member

      Tinnitus Since:
      May 2016
      Cause of Tinnitus:
      Infection in ear
      1. Tinnitus is surely not something connected with the ear if there is no nerve damage in ear and no hearing loss. Then are there studies carried on the different causes of tinnitus... like TMJ and tinnitus, cervical problem and tinnitus, or diabetes/hypertension and tinnitus... studies which take into account several scenario.

      2. Since we live in a noisy world, more and more people will get ear ringing in future.
      When can we expect a cure, a real cure, not something like a masking device.
       
    25. TinaB
      Amused

      TinaB Member

      Tinnitus Since:
      08/2017
      Cause of Tinnitus:
      Age-related hearing loss
      Hi Hazel...not sure this is where we post questions for speakers but didn't want to get lost in the shuffle.

      Skimmed thru the post and didn't see this.

      My question is for Roland Schaette.

      If tinnitus is supposed to be neuro why can't researchers target that specific area and develop a pill to block the noise?

      I know...sounds like a quick fix, but it'd be so easy to administer. Having a bad day with mine today, louder than normal. Thanks in advance
       
    26. Jazzer

      Jazzer Member Benefactor Ambassador Hall of Fame Advocate

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @Hazel - could McFerran be asked if there is any consensus of opinion on the safety (ototoxicity) and efficacy of CBD Oil?

      I am very aware of the fact that once you have taken any substance, you cannot then untake it, if damage has been done.

      The only information I can find on Tinnitus Talk is from a couple of years ago.

      Thanks.
      Dave.
       
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    27. James Shiell
      Relaxed

      James Shiell Member

      Tinnitus Since:
      09/1991
      I've had constant "white noise" tinnitus for 27 years in my right ear and accompanying ~10% higher frequency hearing loss after having otosclerosis in that ear and a prosthetic stapes. The prosthetic was replaced about 2 1/2 years ago.

      Is there hope for mitigation for sufferers of tinnitus caused by otosclerosis and those with prosthetic small bones of the middle ear?
      What kind(s) of solutions may be coming?

      My question is for either/or Professor Baguley or Dr Schaette.

      Thank you.
       
    28. erinkath

      erinkath Member

      Tinnitus Since:
      2011
      Cause of Tinnitus:
      trauma after wildfires crisis
      Question for Don McFerran:

      Can you validate (in a general sense) if there are any research studies or is there other credible info "out there" which highlights that a decent percentage of "ceasing-of-tinnitus" exists for those people who quit using a drug which seemed to trigger tinnitus ? ... OR is there also (for a high percentage of people) a frustrating situation of having perpetual tinnitus even after one can remove whatever drug supposedly helped cause initial ototoxicity+tinnitus?
       
    29. BobSaved

      BobSaved Member

      Tinnitus Since:
      1996
      Cause of Tinnitus:
      stopped taking Xanax too quickly
      Years ago when I stopped taking Zoloft without weaning off it, the tinnitus started.

      Is that possible? Has anything been proven effective in restoring normal hearing?
       
    30. Edward Green

      Edward Green Member

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      unknown
      My question is for Dr. Roland Schaette, but could also apply to other panelists.

      I notice my tinnitus varies with head or jaw position.
      It diminishes if I pull my head upwards.

      Is there anything physical that could be done to help reduce the intensity of the 'ringing'?

      Thanks
      Edward Green
       
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