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. JAJ
      Pensive

      JAJ Member

      Tinnitus Since:
      07/2013
      Cause of Tinnitus:
      Unknown
      For Professor David Baguley:

      I would like to know if there has been any conclusive research on the effects of intratympanic steroid injections on tinnitus and hyperaccusus in non-Meniere’s-related cases. I’m not talking about a single injection, but rather a series of injections over time.

      Thanks very much,

      J-
       
    2. Jwelhwel
      Benevolent

      Jwelhwel Member

      Tinnitus Since:
      1996
      Cause of Tinnitus:
      unkniwn
      I have read that it has been determined that tinnitus originates in the brain.

      What is happening with research into how to affect what the brain is doing to cause tinnitus?
       
    3. billie48
      Sunshine

      billie48 Member Benefactor Ambassador Hall of Fame

      Location:
      Canada
      Tinnitus Since:
      03/2009
      Cause of Tinnitus:
      not sure
      There are so many good questions raised by others already. I don't know who is expert on my question but I will try @David who may be more informed on the current and past research on tinnitus:

      My question is on the cyclical nature of tinnitus. While some members have constant tinnitus, there are also many members who report their tinnitus can be quiet some day and then turn on a spike for other days. They can't seem to explain why tinnitus can do this and they then tend to fear the unpredictable nature of tinnitus. There are those who also report that their tinnitus works in highly precise cycle alternating between loud and low days. There are those who say their tinnitus is constantly loud in the morning when they wake up, while others report that their tinnitus is quiet in the morning but towards evening it becomes unbearable.

      Given such predictable cycles, have there been research to study why tinnitus work in such cycle for some sufferers and what triggers such cycle? If the researchers can find the switches which turn on or turn off tinnitus, is there research done to shut down the 'switch-on' mechanism so it stays in 'switch-off' mode? We often heard about the K-channel sort of things here on the forum. Are these related to the switches of turning on and off tinnitus signal? If so, are there safe drugs being developed?
       
      • Agree Agree x 3
      • Good Question Good Question x 2
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    4. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      To make it easy, you can address all my questions to Prof. Langguth...
       
    5. Leah

      Leah Member Benefactor

      Location:
      Chardon, Ohio USA
      Tinnitus Since:
      2007
      My question is for Don McFerron:

      If some medications are the cause why do we have to educate the physicians? Always a personal struggle when a prescription is called for.

      Thanks for all you do Tinnitus Talk staff!
       
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    6. vermillion
      No Mood

      vermillion Member Benefactor

      Tinnitus Since:
      12/2016
      Cause of Tinnitus:
      Neurological damage
      There should be a stand with a video projection of interviews by people that are severe cases. They could do this from their house. Tinnitus Hub has plenty of data on this aspect. "Specialists", the ATA, BTA etc should finally acknowledge the homebound cases and the suicides. It's still a taboo, and all because those are so few... But the voices of the above people should be heard in an event like this. The struggle, the fact that they are not believed, the isolation etc.

      Understanding the habituation process... why is it too difficult for the so called "specialists" to admit that everybody could carry easily a bag of 4 pounds but almost not possible to carry a load of 300? What happens when a man has to carry for the rest of his life a load of 300 pounds?

      That's quite sad... since hyperacusis is often tinnitus' best friend and the possible culprit of nasty hearing complications (reactive tinnitus, pain, disability etc).

      Shouldn't there be a flyer with Danny's story and the crowdfunding campaign at that event?
       
      • Agree Agree x 2
      • Like Like x 1
    7. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      A couple of questions that were sent outside of the forum:


      For Dr. Raj Shekhawat:

      What his thoughts are on the research which (if I read it right) states there may be a link between 'white noise' therapy and increased cortical ageing/worsening tinnitus. If there is some basis to this should I stop?

      Link: https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2697852


      For Dr. Roland Schaette:

      Can you do a study on how WEATHER conditions and changes in weather can affect the sound levels of tinnitus? My tinnitus reacts to changes in temperature and humidity.
       
      • Like Like x 1
    8. T Gray

      T Gray Member

      Tinnitus Since:
      2016
      My question is aimed at David Baguley.

      Is there any evidence to fully understand why tinnitus occurs at any given point, like when you are half asleep and ringing occurs in one ear?

      Are we at a point in research to start to understand why the brain does this to us and are we investigating genetics dispositions to this to see if there are any hereditary markers or patterns that may also treat the next generation better?
       
    9. JohnAdams
      Whistles

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      @David now that cochlear hair regeneration has been discovered, you need to be funding the discovery of natural mimickers of this process. That seems obvious.
       
    10. boogiesurfer
      Frustrated

      boogiesurfer Member

      Location:
      Hawaii
      Tinnitus Since:
      1970
      Cause of Tinnitus:
      US Navy submariner
      I'm a proud veteran of Polaris submarines, 72 yrs., and I still recall to this day what started my tinnitus (and continues to present) while serving aboard the SSBN 642 USS Kamehameha in the 60's.

      The e-mail I received said I could pose a question to a researcher, but nowhere on your site did I find any "pose a question" link or anything recognizable in order for me to ask a specific question.

      Guess I should just "post" my story, but don't really know which researcher would be best to address it to.

      As an EO (electrical operator, nuclear) my station was aft in the boat, and nearby just outside my post was the main steam generator turbine that was fully exposed with only a simple railing around it, with no hearing protection for the sailors working in this environment ordered or recommended by the USN. In fact, in those days we had no "protection" whatsoever for "noise."

      I will never forget the sound of that large and powerful steam turbine, and I do hear those same high frequencies all the time, to this day, as strong tinnitus. In fact at the time I thought it sounded so cool! Also, to this day, I haven't been helped by the VA in attaining any sort of disability.

      My hearing is just now starting to degrade a bit, but I do hear OK. I've gone to my Kaiser Permanente healthcare provider, and they allow absolutely no help, suggestions, or treatment whatsoever! I just feel that everything I've seen and read regarding my barely tolerated condition, is beyond hope even in our time of major medical knowledge and breakthroughs. Very disheartening :cry: and frustrating.

      I've followed your site for a few years now, but I'm hard pressed to see any possible resolutions on the horizon. Can you prove me wrong?

      Sincerely and respectfully,
      Lawrence
       
      • Hug Hug x 1
      • Creative Creative x 1
    11. Ddrhl
      Frustrated

      Ddrhl Member

      Tinnitus Since:
      April 2015
      Cause of Tinnitus:
      Lisinipril
      Question: Is ANYONE using a transmitter in a hearing-aid-like device to transmit a tinnitus canceling frequency (frequencies) into the sufferer's ear(s)? I can get a few seconds peace with a crappy frequency projected from my computer, so I have to believe a targeted continual, perhaps alternating, perhaps in a canceling amplitude, input may work for a longer time.
       
    12. pixiebelle

      pixiebelle Member

      Tinnitus Since:
      4/ 2013
      To David Baguely:

      Does more exploration need to be made into connections between ENT disorders and reflux disorders such as LPR? Could LPR lead to some fluid or detritus gathering in the middle or inner ear?

      Also to David Baguely: Does he think the link between allergy and middle/ inner ear issues is worth exploring?

      And another to DB: one of the main side effects from withdrawing from zopiclone is hyperacusis and tinnitus, does this suggest that the body in its effort to rebalance itself may stimulate its auditory system when it is being "suppressed" or when the GABA is being affected and so when the drug is removed there is a sort of rebound effect? Does this mean we have to look carefully into the effects various drugs have on the system?

      And to the whole panel: what do they think of relatively new concepts ASD (Acoustic shock disorder) and reactive tinnitus? (where certain sounds agitate the over-sensitised system causing a vicious cycle)
       
    13. 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, @Markku

      Could we also use this opportunity Friday and Saturday to find others whom we could add to our Doctors' Corner if you have time for a chat with anyone whom you think would like to be involved with Tinnitus Talk :)

      love glynis
       
    14. Amit Shah

      Amit Shah Member Benefactor

      Tinnitus Since:
      29
      Cause of Tinnitus:
      Unknown
      Below questions were submitted by myself and our support group on Facebook by other members.

      1. When does Dr Susan Shore's trial begin and when will be able to know the results of the trial?

      2. Are there known foods or medications that can create tinnitus? Is there a specific diet and supplementation that can help eradicate tinnitus? And what medications are best used to help with the anxiety and effects of tinnitus?

      3. Does Psilocybin (shrooms) help at all?

      4. Has the technology Functional magnetic resonance imaging or fMRI made any progress to pinpoint the root cause of Tinnitus? I see a trial taking place in Switzerland using Neurofeedback and fMRI and it has proven to work on some individuals with tinnitus with really good results. Will any trial be available in the UK for people with tinnitus sometime soon?

      5. People with noise induced tinnitus have damaged the outer hair cells in the cochlea. Will they see any possible treatments for the regeneration of these hair cells in the next 5 to 10 years? I see a trial by ReGain Hearing has started already for regenerating the hair cells in the cochlea but it does not allow participants with just tinnitus. Why can we not participate in this trial? Why only people with sensorineural hearing loss can apply? Can a similar trial be done for people with noise induced tinnitus?

      6. Researchers at Kyoto University in Japan recently discovered a way to solve a problem facing the scientific community in transplanting stem cells. Stem cells are thought to hold the potential to restore damaged hair cells in the cochlea that contribute to both hearing loss and tinnitus in many patients. However, in past experiments, transplantation of stem cells into the damaged areas has produced only varying results, and a challenging problem that prevents successful stem cell transplantation is to avoid stem cell deaths. Stem cells often die due to failure to bypass the glial scar, a hallmark of neural damage that is thought to act as a barrier for cell transplantation. The scientists at Kyoto University discovered that applying new stem cells to the surface of the glial scar rather than underneath helps with their survival. They reported that the survived stem cells were able to grow from the damaged segment of the auditory nerve, which then travel from the cochlea to the brainstem, the part of the brain which controls flow of messages between the brain and the rest of the body – in this case, the ear - and eventually restored remarkable auditory function. They discovered that auditory function was better restored with the new, surface transplantation method in comparison to previous direct transplantation. A new way of transplanting stem cells provides hope for a new therapy for tinnitus and hyperacusis patients. When will be able to start possible trials for this treatment on humans which has the potential to restore the auditory pathways and possibly eliminate tinnitus and hyperacusis?

      7. Global efforts towards solving this menace is imperative and must be encouraged. And yet, at the same time, we need to have 21st century techniques and therapeutics to tackle this menace. We don’t simply use mathematical data analysis of the effects of stress, sound therapy, etc to show that these are beneficial and pass that off as quality tinnitus research. This kind of research has no THERAPEUTIC value and is a vestige of 80s and 90s era research. We should encourage some quality therapeutics based research using 21st century techniques i.e. cochlear hair cell regeneration, acoustic neuromodulation, rTMS which can actually help to alleviate this condition rather than just encourage acceptance. There are therapies to help you manage the condition like Tinnitus Retraining Therapy, Mindfulness Meditation, Cognitive Behavioural Therapy etc but there is no therapeutic approach that can effectively reduce or cure this condition indefinitely and the worst thing is that our medical professionals, most of them, have no knowledge or understanding of this condition. However, the fact is that suicidal thoughts and even incidence of suicide is not uncommon amongst those who suffer from Chronic Tinnitus. Clearly, hearing health has become a major CRISIS and conditions like tinnitus are on the rise more than ever before. How long before we can actually put the above into practice?

      8. A company called Frequency Therapeutics is making a PCA Regeneration drug which can reactivate dormant progenitor cells to restore damaged or diseased tissue or cells. Does this treatment have a way to restore our hearing back to normal? Its focus is on people with chronic hearing loss at the moment but I believe a similar platform needs to be setup for people with tinnitus and hyperacusis as well as this is also another method to potentially cure this debilitating condition we all are suffering from and I think many here would also like to see this going ahead.

      9. Where has Stem Cell Research advanced to that aligns with regrowing hair cells in damaged ears?

      10. Can you please record the key speakers 1 and 2 for those attending the expo at a later time as I wish to share with our Facebook support group or a video recording of the whole event to share with our group as many will not be able to attend as they live in different countries and I will not be able to make it from 9 am. I will be coming in the afternoon at 1 pm.

      Thank you very much.
       
      • Like Like x 2
    15. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      As I understand it, attendees will be able to ask whomever they choose about drastic tinnitus.

      But the severity of catastrophic situations will not be publicised in an effort to keep things upbeat.

      I share your concerns Vermillion.

      This stuff is very serious “SHIT !!!”
      Why “homogenise” it?
      When people are not aware of the actual dangers involved to life and happiness, why would they exercise extra caution.

      I mean - “what’s a little bit of hiss ???”
       
      • Like Like x 1
      • Agree Agree x 1
    16. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Thanks @Steve for offering the opportunity to raise questions.

      Question for Dr. Raj Shekhawat and/or Dave Carr:

      Do you have insight into the devices from University of Minnesota and University of Michigan currently in trial and what is your opinion on them?

      Question for Dr. Raj Shekhawat and/or Dave Carr:

      Do you have insight into the work of Professor Tzounopoulos (University of Pittsburgh) and potassium channel modulator research? Is there any progress and could we expect results from this?
      I myself took Trobalt several times and it definitely lowered tinnitus for some hours.

      Question to Berthold Langguth:

      We have one case here on Tinnitus Talk forum who had TMS treatment in Regensburg. His tinnitus became much more severe by the treatment. To me it looks like it is more trial & error than a promising treatment. Are there any positive results from TMS treatment where tinnitus volume was reduced effectively?

      Thank you.
       
    17. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      @Steve

      Question for David Stockdale (and preferred also others):

      "Why do you not take 20 severe tinnitus patients, put them into a hospital with best tinnitus researchers, do brain scans and all kind of examinations (complete blood tests, hormone tests, whatever possible). Optional: Do massages and atlas correction if needed - that patients have no muscle and nerve issues. Then compare results and see where the problem could be. Examine those brain scans and find over-active areas. Do tests with meds like Trobalt and make more brain scans. See what changes - if anything changes. Work intensively for some weeks and try to get as much information as possible. Try to find the root cause with all available equipment on the market. I am sure this would bring researchers much closer to a solution than all the TRT, Mindfulness etc. programs - which simply only cost billions of money."

      The reason for my question is simple: I honestly do not see much research is done to find the root cause for tinnitus. We are excellently equipped in many medical areas so that more research could be done. But nothing happens or only some "lone fighters" experimenting with things without much support.
       
      • Like Like x 3
      • Agree Agree x 1
    18. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Pretty good questions! But, quite complicated for what will be mostly quick and time-limited interview sessions. Quite unlikely that all of these can be answered during the sessions. It may be that we invite researchers to answer some of these at a later date.

      Additionally, next to each of your question, can you indicate the person you want it to be asked from?

      Take note of @Martin69's questions above, where he appropriately indicated the persons.

      @Hazel published a list of some of the most interesting speakers/presenters at the conference and expo.

      Speakers and presenters at the Talking Tinnitus Conference / Expo

      As you can see, it is unlikely there is a person with specific expertise for each of your question at the conference/expo - but feel free to pick and choose the ones you feel are most appropriate.

      As far as videoing the whole expo day; that's not really feasible. But there will be video interviews and other video content, as well as text/picture reports.

      PS.

      When you arrive at the expo, come say hi to our staff and volunteers! The below map helps you locate our stand (we are number 12, "Tinnitus Hub").


      tinnitus-expo-area-2018.jpg
       
      • Like Like x 2
    19. Mangels

      Mangels Member

      Tinnitus Since:
      One year
      Cause of Tinnitus:
      I don't know
      Exactly this is my biggest concern and the question I would have wanted to ask.

      My tinnitus fulfills a nearly perfect cycle, you could say that I can predict quite accurately what days I will have tinnitus and what days not.

      I would add to the question of billie48 the fact that the cycles of my tinnitus begin and end only while I sleep. That is, if I get up with tinnitus I will have tinnitus all day, if I get up without tinnitus I will be without tinnitus all day. In other words, the cycle is not altered during the day, it does not matter what the activity is, what I eat, whether it's a calm day or stress day. That does not seem to influence anything. The cycles, almost precise, begin and end while I am sleeping.

      It's just a complement to the billie48's question and I'll try David as well.

      Thank you.
       
      • Agree Agree x 1
    20. Billthegardener

      Billthegardener Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Unknown
      For David Baguley,

      When confronted with new tinnitus sufferers is there a good troubleshooting matrix, that would help people find out what type of tinnitus they have. And then basic questions that would lead those to a possible recommend treatment plan?

      Often, people go to their ENT, they are told there is nothing you can do. I had to research everything on my own. (I have extremely minor hearing loss. Random cycling tinnitus with no known cause. 3.5 years ago, I just woke up with it.)

      About a year ago, I was asked in a survey, "when you push on your forehead, does it change your tinnitus?"

      YES, it does change my tinnitus, what does that mean? Stuff like that.
       
    21. Lucy B
      Dancing

      Lucy B Member Benefactor

      Location:
      Pennsyvania
      Tinnitus Since:
      06/2007
      Cause of Tinnitus:
      Plaquenil (Hydroxychloroquine)
      My question is directed to Don McFerran or anyone else who might be able to answer:

      Plaquenil is what caused my tinnitus. It was prescribed for lupus.
      What, if any, is there a physical difference from getting tinnitus from medication as opposed to someone who got it from a noise or other reasons?
      Did the plaquenil damage my ears or has it damaged nerves or my brain perhaps?

      I have searched and searched & cannot find any answer to this matter.
      Do you know of any websites or books that this would be discussed?

      Thank you!

      Have fun at the expo!
      Lucy
       
      • Good Question Good Question x 2
      • Like Like x 1
    22. Andrew M

      Andrew M Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Loud noise from head set ear phones
      This question is for Professor David Baguley. This is more for hyperacusis with ear pain from noise.

      Are there any ways to stop ear pain from noise. I also have tinnitus. I was using hearing aids with noise programs to help with the tinnitus. It was helping but sense my ear pain has got worse. My audiologist told me to stop the therapy with the hearing aids until my ear pain has stopped. My ear pain gets worse every time I have to wear ear plugs and drive.

      What can be done about ear pain so I can start the tinnitus therapy. I have not done the tinnitus therapy for over 1 and a half years.

      Thank you very much.
       
      • Like Like x 1
    23. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      My question is for pretty much anyone there.

      If someone has tinnitus from noise induced trauma, does their chances of developing further damage from ototoxic medication increase when compared to a normal person? Are these mechanisms (acoustic trauma damage vs otoxotic medication damage) unrelated and not connected?

      Would someone who developed tinnitus from ototoxic medication be more susceptible to further damage from other ototoxic medication than someone who has had acoustic trauma?

      Basically, are people who have tinnitus from acoustic trauma more likely to have issues with ototoxic medication?
       
    24. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      I have a similar pattern of better and worse (horror) days.

      I suspect it might be related to the head position during sleep. It sounds crazy - but you get crazy when you are accompanied by this sssssss all day long again....
       
    25. billie48
      Sunshine

      billie48 Member Benefactor Ambassador Hall of Fame

      Location:
      Canada
      Tinnitus Since:
      03/2009
      Cause of Tinnitus:
      not sure
      Thanks for your post. This is what I mean. People with precise cycle of tinnitus high and low days can be recruited for a detailed study of their brain and body functions to determine the triggers of the 'switch-on' and 'switch-off', and from there they may find out how to keep the 'switch off' activated to prevent the spikes.
       
      • Agree Agree x 2
      • Like Like x 1
    26. Adam McGovern

      Adam McGovern Member

      Tinnitus Since:
      Early 1990
      Cause of Tinnitus:
      Unknown
      Was just wondering if any further research has been done in regards to; neck and spine and or jaw issues that may be consistent with types of tinnitus?

      On just another note. I would be happy to help in any research that involves volunteers. This has been going on for far too long without any means of stopping my tinnitus.
       
    27. JaneFromBoston

      JaneFromBoston Member

      Tinnitus Since:
      June, 2017
      Cause of Tinnitus:
      Began after surgery for left carotid artery aneurism
      Please ask whomever you feel would be appropriate:

      1) It is said that pulsatile tinnitus is a result of brain flow disruption, but that is not always the case (as in my case, having had follow up balloon occlusion and more). What is known about pulsatile tinnitus and its treatment?

      2) Why isn’t there some reporting function in medicine such that physicians who were doing a certain procedure where the tinnitus began (e.g., dentists, neurosurgeons, etc.) report it to some database, so that it can be more accurately studied and understood?

      3) What can you say about Dr. Shore’s experimental device and current study at the University of Michigan?
       
    28. Mugzie

      Mugzie Member Benefactor

      Location:
      Toronto, Canada
      Tinnitus Since:
      07/1996 again 07/2014
      To Dr. Martin Schecklmann and Prof. Dr. Berthold Langguth, University of Regensburg:

      Have you had any success with neurophysiological and tinnitus-suppressing acoustic and non-invasive brain stimulation? If so please explain how this works.
      How long does it take to notice suppression of tinnitus and what is your perspective on the future of this type of treatment?

      Thank you.
       
    29. Goofpod

      Goofpod Member

      Location:
      Northern CA
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      Concussion
      To Dave Carr:

      1) Will we see real progress in the recent isolation of the gene that causes stereocilia hair degeneration?

      2) Can stem cell therapy be a real game changer with treating tinnitus?
       
    30. Martin69
      Artistic

      Martin69 Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      10/2013
      Cause of Tinnitus:
      (Health) Anxiety
      Please check http://tinnitus.org/readers-email/

      "Very short answer! It is linked to a 3-5 day limbic emotional cycle described in our
      book – extremely common. Look again at the graphic of Jastreboff’s model."

      I don't know if that makes sense. And honestly I do not really understand what the "limbic emotional cycle" is. But maybe it helps.

      @billie48
       

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