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

[Contrast]

[USERGROUP=4]@Moderators[/USERGROUP] 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.

 

[Hazel]

[USERGROUP=4]@Moderators[/USERGROUP] 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.

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.

 

[Manny]

@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

 

[Contrast]

1: Would curing sensorineural hearing loss reduce tinnitus if the tinnitus was caused by sensorineural hearing loss?

2: Have they made progress investigating what role GABA has to play in tinnitus patients and if increasing GABA helps?

3: Is there evidence yet of tinnitus having a gateway mechanism, why some individuals with SNHL get tinnitus and others don't?

4: With hearing loss and related problems like tinnitus and painful hyperacusis being common among soldiers, veterans and even the general population how can we get the Governments to show an interest in biomedical research to treat these conditions?

5: Do ENT's do a disservice by ignoring hidden hearing loss and keeping the public ignorant about the condition they suffer from?

6: Is hyperactivity in the DCN or other regions of the brain after hearing loss physical evidence of tinnitus or is this just a speculative hypothesis?

7: How do we get more funding for biomedical research to get sufferers real help, instead of most budget money going towards CBT, TRT type therapies that aren't curative in the long run?

8: Is hyperacusis with pain and hyperacusis with loudness amplification two separate conditions or subtypes of the same condition? I have read hypothesis that suggest this. They seem to have totally different properties. I have heard researchers use words like noxacusis to refer to painful hyperacusis, and recruitment to refer to loudness amplification. Hyperacusis with pain is a horrifying condition and it's mechanisms need to be understood in order of a treatment.

9: How can we get tinnitus research to cross discipline with hearing loss research, other phantom sensory conditions, and even issues like TMD that all show evidence of being related?

10: Can we soon have YouTube videos that show 3D models of the auditory brain and inner ear that explain the known mechanisms of tinnitus and painful hyperacusis so the public can be informed of their own condition, put in laymen's terms and simplified.

I am hoping for real discussion happening about these topics that could lead to novel treatments 10 years from now.

Type II afferent cochlear nerve's, and outer hair cells and there role in painful hyperacusis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4664349/

Central Gain hypothesis already showing evidence in tinnitus and possibly hyperacusis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208401/

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.

 

[ridgew]

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.

 

[Tinniger]

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

 

[Greg Sacramento]

Have they made progress investigating what role GABA has to play in tinnitus patients and if increasing GABA helps?

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.

 

[Apolonia]

@Steve, @David

My tinnitus is severe in both ears, like 8 or 10 out of ten but with a Meniere's attack it goes blasting and too much to cope with for anyone.

I have to take Cinnarizine 15mg, two tabs three times a day and it brings my tinnitus back down to what I can cope with even though it's still severe.

Could that medication help others whom don't have Meniere's as it does state it reduces tinnitus?

If you get a chance to ask anyone at the expo that would be lovely.

love glynis

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.

 

[Hazel]

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

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.

 

[MBH]

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.

 

[MountainCreek]

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

 

[Starthrower]

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?

 

[valeri]

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?

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?

You brought tears to my eyes! It's that very nano-second I'm dreading

 

[WaqasVic]

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...

 

[Ed209]

@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

 

[Jazzer]

Hi everyone,

We didn't collect many questions yet from you guys for our planned interviews during the BTA Conference (14 September) and Talking Tinnitus Expo (15 September). We can't imagine that you would really want to pass on this opportunity to pose your most burning questions to some of the most pre-eminent researchers and advocates in the tinnitus field! But we only have a few days left to the event, so we need your input by this Wednesday (12 September) at the latest.

When you suggest a question, please indicate the name of the speaker that your question is directed at.

You can find the full programme for both events, with speakers, above in Steve's post.
But to make it extra easy for you, I created a table below with the speakers that you will likely find most interesting, some background details on them, and the topics of their presentations.

Cheers,
Hazel

View attachment 21944
See list of ESIT projects here: https://esit.tinnitusresearch.net/index.php/research-projects

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?

 

[Dizzyhead888]

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?"

 

[Greg Sacramento]

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?

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

 

[TuxedoCat]

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?

 

[Scott Haas]

Hi everyone,

We didn't collect many questions yet from you guys for our planned interviews during the BTA Conference (14 September) and Talking Tinnitus Expo (15 September). We can't imagine that you would really want to pass on this opportunity to pose your most burning questions to some of the most pre-eminent researchers and advocates in the tinnitus field! But we only have a few days left to the event, so we need your input by this Wednesday (12 September) at the latest.

When you suggest a question, please indicate the name of the speaker that your question is directed at.

You can find the full programme for both events, with speakers, above in Steve's post.
But to make it extra easy for you, I created a table below with the speakers that you will likely find most interesting, some background details on them, and the topics of their presentations.

Cheers,
Hazel

View attachment 21944
See list of ESIT projects here: https://esit.tinnitusresearch.net/index.php/research-projects

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?

 

[Helen Birkbeck]

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?

 

[Soep]

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

 

[Hazel]

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!

 

[Dilshaad]

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.

 

[TinaB]

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

 

[Jazzer]

When you suggest a question, please indicate the name of the speaker that your question is directed at.

@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.

 

[James Shiell]

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.

 

[erinkath]

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?

 

[BobSaved]

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?

 

[Edward Green]

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