What Do You Want to Know from Researchers?

Being that I am at the TRI conference soon, I wondered what you would like to know from any researchers that I talk to (within reason of course).

For example, it has been suggested that we can see how many of them actually have tinnitus themselves, is it more prevalent than the average?

 

I would like to know what research is going on in the UK and by who?

 

I'd just say to them to keep working hard and thank you for their efforts

*Not really a question*

 

Their opinion on when a cure or a treatment that actually reduces or alleviates the noise may be available and what they are most excited about (most promising lead on a treatment) thanks Steve

 

when will the magic bean be ready?

 

Most disease don’t have a cure, but there is a pill to make u feel better. We need something to help.

 

Not even a cure, even a treatment would be a breakthrough because there is literally nothing, just coping techniques.

 

From a scientific point of view, I am more interested in diagnostics than therapy. Only about 1/3 of tinnitus patients have suffered an obvious noise trauma. (https://pdfs.semanticscholar.org/d64b/af2cfe479e1ca4f303bbb663c5eb2c2b6364.pdf)
Why are so many other people suffering from tinnitus?

 

Thanks for the help. Anyways, here's a good punchlist of questions:

-What research going on right now do you think has the most potential? (Besides your's of course lol)
-When do you think the earliest treatment will be out?
-Is this sudden burst of progress just a fad or a trend?
-Theoretically, if a non medicine like Signal timing passed this year, how long will it take to get through the pipeline?
-If a medicine like Keyzillan showed significant results for both Epilepsy and tinnitus, then how long will it take that to get through the pipeline?
-If stem cell therapy showed to reduce/get rid of noise tinnitus, how long will that take to get through?

That's just a few. Thanks for the consideration.

 

A simple question that hasn’t been answered yet.
If sound sensitive (“reactive”) tinnitus is truly a manifestation of hyperacusis or could be a separate entity as well as any ideas why it happens.
Thanks.

 

- How can we expedite research
- Can the tinnitus community (tinnitus sufferers) provide any help apart from participating in trials (we run a community with thousands of followers whereby there are many who would volunteer)
- Does raising funds for research help? If yes, how? If TinnitusTalk attempted to raise money, where can we put this money?

 

I have always been interested in the relationship of Phantom Limb Pain and Tinnitus. Both are brain related reactions to a stimuli that is not there.

I have this conversation with my niece many times. She lost her arm to bone cancer about 8 years or so ago. And she still experiences pain in her missing arm or the sensation that her arm is still there. With my tinnitus there is noise that is not present outside the brain.

(My niece is healthy and living life normally. She went on to have two babies and lives in the mountains and works at a hospital.)

Thanks for delivering our messages - Steve. I know it is your own personal time and money spent for this event.

I have other stuff but have to wait till later today.

Jen

 

Why did you become a tinnitus researcher? What's your story in a few paragraphs.

Freeform answer.

 

How do you spend your research funding?

 

keyzilen isn't for epilepsy, I think you are getting that confused with RL-81 known now as XEN11-01

Keyzilen is Auris medical product for acute tinnitus

To answer regarding keyzilen that could Potentially be approved this year - they are just waiting for the latest results after the changed the end points.

 

Thanks for the correction. I know what you're talking about. Yeah I care a lot more for rl-81 so please ask them that @OP. I heard it could also be used for chronic too but I kind of doubt it. Obviously the more acute the better.

 

Who will enlight us over the confusing matter of reactive tinnitus and those whistles that few perceive over specific sounds? (Apparantly there's not even a scientific term for this).

And why few people develop progressive tinnitus and others just have it so mild forever?

 

I would like to know from Tinnus researchers whether they can prove or rule out any damage to the inner ear without a doubt.....

 

@Steve
I would like to know:

1) why tinnitus isn’t taken more seriously?

In 2018 the approach “learn to live with it” or “it won’t kill you” is getting “so yesterday” considering we all know, first hand, the devastation it causes when loud enough. It’s time to move away from band aid approaches like CBD, TRT, meditation, habituation.....blablabla and do something proper like they do for other illnesses.

2) what is going on with the research by prof Thanos Tzounopoulos who was working on modified version of Trobalt? Why isn’t that more looked into?

I’m not a scientist but I believe that treatment can only come from targeting the brain!

Thanks Steve!

 

1. Does the name Artur Zieniuk ring a bell, by any chance?
2. If they remember him, why they did not even answer his e-mails? I understand they cannot be sued by him, cause he signed some papers in this respect, but answering his e-mails with some questions about their protocols could have shown him some interest in his life.
3. After he was used like a guinea pig by the TRI for expermineting with rTMS, and his tinnitus got much worse, it became reactive (!!!!!!!!) and he became unable to go outside anymore, his tinnitus becoming reactive to some outside sounds and the sound of the car engine.
What would have been their advice regarding another treatment to treat his increased tinnitus after rTMS? I could transmit their message/advice to him if he ever contacts me again, but i am not so sure that he is still alive (i adviced him to take Rivotril, he did reply after a while saying that this brand of Clonazepam is indeed a bit better than the Polish brand he tried, but that was his last message, although he said he will write if there is more improvement or worsening. His last message was a bit incoherent and with mistakes, i could tell from the way he was wrtiting just in what kind of suffering he was)
4. After Artur Zieniuk was such a sad case, if they at least stopped rTMS.
5. My personal question, coming from a personal curiosity: if tinnitus is a hyperactivity of the neurons, how on earth somebody (a researcher!!!!) was able to believe that further stimulating neurons with magnetic fields or another method, could have calmed down the neurons? What did he have in mind? That stimulating the neurons differently there was chance to break the sincronicity in their misfirimg, something like acoustic neuromodulation?
6. What is the explanation of tinnitus becoming reactive after rTMS? (If they do not deny Artur's case, of course).
7. What is the explanation of tinnitus becoming louder or getting new sounds after exposure to some regular (not loud) sounds? (Vermillion asked something similar, what makes a sound a "tinnitus trigger")

Thank you!

@Steve please rephrase my questions in order to delete the rude tone as much as possible. I cannot help this rude tone of mine when i am talking about serious stuff like that, the life and extreme suffering of a human being.

 

Why are all the clinical trials conducted by insiders and researchers with an interest in the company that is having their device/drug tested?

Why are you afraid of an anonymous double blind trial conducted by independent researchers with nothing to gain or lose by the outcome of the trial?

 

Ask them if they would like to be a member on here so they can read members threads world wide...
They don't have to post just read posts as we must cover every aspect of tinnitus between us.

 

I want to know where they are at with understanding the physiology of this. By that I mean what can be proven vs what remains theoretical.

 

Wow that's a great idea. Although they should totally post.

 

What may be even more interesting is to find out how many of them have habituated and moved on In fact I’d like to put that question to the key help advisors here.

 

That’s a very good idea Glynis. How can anyone fix something without understanding what is broken? I’m guessing they do talk to people suffering from T, but I wonder if they talk to those who have recovered and moved on?

 

Why do you want to research tinnitus?

 

I am aware that several do read TT.

I can understand them not taking part. I imagine they would be bombarded with questions and whatever else. They just don't have the time to respond to everything and I think it would get overwhelming.

 

Really! So the people here who help out for no financial reward haven’t got better things to get on with then?

 

Well yeah of course we have

It was a suggestion so it may not be the case at all. I can ask anonymously when I talk to people and see what the answer is, I would like to know myself. If there are things that are perceived as barriers then it would be nice to break them down and encourage their participation.