The Association for Research in Otolaryngology (ARO) 2023 MidWinter Conference

Dr. Polley gave some thoughtful responses about looking for biomarkers and developing therapies to disrupt the signalling.

I'm not sure which "sort of placebo controlled" trials on bimodal stimulation he was referring to?

 

Two were discussed at the conference. Neosensory and Dr. Shore's device.

 

Thanks. He then talks about them treating distress, similar to Prof. De Ridder.

 

I think this is positive indeed. One key area, that needed improving is collaboration between funding bodies and the community. I commented recently that the Tinnitus Hub Twitter page has recently acquired some significant followers in research and clinical practice. I appreciate it's all about time and resources keeping the Twitter active. I have recently realised that social media channels like Twitter, TikTok and Facebook have HUGE reaches.

Increasing our presence and activity on these may be beneficial. Even if it's just a link to new information on the Tinnitus Talk forums (ARO23, Palm Springs Hearing Seminar or a new Tinnitus Talk Podcast episode), researchers can decide if they want to look into it. For instance Dr. De Ridder was completely unaware of the 5-HT1A research at Birmingham that I posted about here on Tinnitus Talk.

Last year there were only 5 postings on the Tinnitus Hub Twitter page. The interviews @Hazel did at ARO 2023 have been excellent by the way. Even just posting a link to them on social media would suffice so researchers can see what's taking place and who is involved in what.

It may sound strange but just the process of signing up as a member to Tinnitus Talk can be an obstacle to some. People want quick and easy access to everything and want replies to questions answered in a few minutes. With 40 thousand members, I wonder how many view it passively through a Google search but never sign up? That was me for 7 years.

Being active on social media also increases the pool for donations.

 

Hi everybody,

I just had a talk with one of the 2023 ARO attendees via in-person appointment. I can attest to in-person what @Hazel's observations were about CBT at the ARO.

The ARO member I had an appointment with was Dr. William Slattery, of the House Ear Clinic in Los Angeles. For those that don't know, the House Ear Clinic is where the cochlear implant was first invented.

I went to see Dr. William Slattery for severe disabling pain hyperacusis. I have already had 3 ENTs writing notes saying I am totally medically disabled, one internist, one audiologist, and one anesthesiologist because I've tried every treatment.

Dr. Slattery saw this, then acted like I was malingering because hyperacusis could never be this bad. He then said to do CBT...

Strangely, he knew what hyperacusis research was, and advised me to follow their recommendations, but he also refused to admit that hyperacusis setbacks are real. Which is against their recommendations...

He also said straight up, when asked about Prof. Thanos Tzounopoulos and potassium channels, "yah, I've seen it, and I don't believe in that. CBT is the treatment for pain hyperacusis, you have to learn to live with it better, and ordinary sounds won't hurt you."

This interaction almost felt like a simulation...

I feel there are very much two camps in the ARO; CBT vs neuro-physiology. It is a very tension-y feeling to experience this in a social interaction, lol.

 

I'm speechless. Yet he was at the conference. Did he see Megan Beers Wood's presentation on Type 2 afferent neurons? The bloke needs culling!

As for potassium modulators, I'm interested in them, but not super expectant. If they worked, even in theory, I would have expected to see them in tinnitus human trials by now.

 

It’s easier and quicker to get these approved for epilepsy and then just use them off label if there is plenty of anecdotal evidence of them helping tinnitus.

Between Dr. Shore’s device and these potassium channel openers, I’m hopeful we will find some relief.

 

To be honest, if I was suffering as much as you do and I was treated as you were, I think I would try to give him tinnitus + hyperacusis by setting off a firecracker next to his ear, following up with an air horn. Such a heartless fuck needs to get a taste of what he thinks is "malingering".

 

If Dr. Slattery said this, then his comment is also contrary to the actual real-life experience of David Treworgy, one of the board members of Hyperacusis Research Ltd. David recently published an extremely heartfelt piece in Hearing Health magazine.

As a side note, on TRT for hyperacusis, he said the following (from the article):



I suppose he should've done CBT instead and everything would've worked out just fine.

 

Why?

 

There’s no good objective tests for tinnitus or hyperacusis yet. And clinical trials are insanely expensive. If they see good anecdotal evidence after off label use, they’re more likely to pursue FDA approval for another indication.

So sorry you had to deal with this person. I also have pain hyperacusis and these people are despicable. If I were malingering, pain hyperacusis was the last disease I would “choose.”

 

A good question to ask Prof. Thanos Tzounopoulos since he believes the same, and which was mentioned earlier on in the thread.

However, since you asked “why,” it’s probably because there’s really no objective measure for tinnitus, whereas an EEG can be used for epilepsy.

 

That’s correct. It’s been talked about a lot on Tinnitus Talk.

 

Truly a sobering read. I am really angry Jastreboff gets to push his "therapy" that's not only not proven - but proven to not work! What a travesty. This quack's therapy needs to go way of lobotomy - as the article suggests. Unfortunately, in the meantime the quack basks in the glory of his "research" and collects the $$$.

On top of it, the local "respected" audiologist was going out of his way to lure me into his modified-TRT therapy at a bargain price $200 per televisit (excluding cost of any noise making devices). If you prepay 12 weeks, you get one visit free! Yay!

Additionally, I am convinced he lied straight from his teeth that he has tinnitus. He kinda slipped it in at the very end after he "sold" me the therapy. What a scum.

I met several people with tinnitus during my "journey". I can tell by their reaction who is telling the truth and who is lying.

 

Good point.

 

Does he mean the same channels as in the same channels as Retigabine, namely Kv7.2/3/4/5, or the same as RL648_81, which targets Kv7.2/3 specifically?

 

Exactly. When I tell family members how my ears ring 24/7 and how bad my tinnitus is, they are like oh, you will be fine, I have tinnitus too. Then I'm like BS, I don't see the pain in your eyes, you don't have severe tinnitus.

 

I am honestly a bit sketched out by Thanos saying that. In his 2020 interview, he told us that he and his team only had the funds to take a drug to Phase 1 of a clinical trial, and that the rest of the money had to come from "venture capitalists". Why would these investors stick their neck out for yet another Kv7-based anticonvulsant drug when XEN1101 is already in Phase 3 for epilepsy? If he really wanted his drug to enter the market, he should be concerned about this!

RL648_81 was already their lead compound since 2016. And now this guy is telling us he found out there are 'toxicity issues' with it? Correct me if I'm wrong, but it seems like Thanos is not very serious in his efforts of finding a cure for tinnitus. And if he is, he sure is taking his damn time. Maybe deep in his heart he already knows he will never get to develop the drug, but just enjoys his occupation as a researcher and the prestige that comes with it too much to tell us the truth.

I am sorry for being a pessimist, but these are just my 2 cents. Love to hear what y'all think.

(By the way, this isn't a reaction to you personally, @Hazel!)

 

I think your point of view is a realistic one given that Xenon Pharmaceuticals and Susan Shore have been quietly beavering away in the background and are now practically over the finishing line.

Thanos has contributed some brilliant academic tinnitus research for which I'll always hold him in high esteem, but in terms of offering up any new or effective treatment he's increasingly become an outlier to that in my mind.