Introducing Tinnitus Quest

Halfway down the homepage, you can't miss it. Where it says 'Get Latest Updates,' you can click to register for updates.

 

May I ask what you are referring to when discussing something more efficacious than Auricle?

I will also donate to Tinnitus Quest when the functionality is ready.

 

Thanks. I did this days ago, but I can’t see where it says Dr. Djalilian is doing a webinar.

 

I finally found it; thank you. I am very interested in what Dr. Djalilian has to say. I really hope his middle ear implants are involved in this initiative. If there is anything we can do to speed this along, I know we could all collectively get it done.

 

You can learn about it by going to the Research News thread 'Electrical Stimulation of the Cochlea for Treatment of Chronic Disabling Tinnitus' or listening to the Tinnitus Talk Podcast episode 'The Man Who Donated a Million Dollars to Research.'

The treatment aims to stimulate the auditory nerve through the round window on the cochlear. Originally, they tested patients by inserting an electrical probe through the eardrum. Around 60% responded well with just a few minutes of stimulation. A couple of patients had their tinnitus abolished for a couple of days, including a chronic 20-year case. This led to the manufacture of a middle-ear device and remote controller. The idea is that you can switch it on for a few minutes when the tinnitus is severe and use it as needed.

A similar but much more invasive approach is being carried out by Matthew Carlson.

Its guesswork, combined with the preclinical proof of concept data, leads me to speculate that this will be much more efficacious than Auricle for most people.

You should go through the Research News thread, but I think some patients had a 4-fold decrease in the TFI, as opposed to an average of ~15 points using Auricle.

 

When discussing donating and fundraising, I feel people are more likely to donate when they see a promising solution instead of “just donate for research.” This is what Brian Fargo did - he donated $1M USD for something he believed in and knew exactly where the funds were going.

During the webinar, I may ask Dr. Djalilian if there is anything else we can do to accelerate the manufacturing and clinical trials. If it means raising funds, we can do that collectively. The FDA process is a bit harder for us to take on, which will be needed before human clinical trials, but at least we can try to get there faster.

 

Yes, this is why getting as many as possible on the stream/Q&A will be important.

 

With all due respect, I would like to share an idea. Despite the many people searching for solutions and treatments for tinnitus, unfortunately, there is still insufficient interest and support for Tinnitus Quest.

There are people suffering from severe tinnitus, even wanting to go deaf because of it, constantly hoping for someone else or some device from a certain person to bring them relief. When I tell these people about the importance of Tinnitus Quest and that this might be our only shot, they give no response. Unfortunately, the people who have disappointed me the most are some other tinnitus patients.

Creating a promotional video to introduce Tinnitus Quest might help increase its support and recognition.

 

I had the pleasure of speaking with Sven from Tinnitus Quest not too long ago. We briefly discussed the vision for Tinnitus Quest and his involvement. I was fortunate to get a small insight into what's to come and the strategy moving forward with Tinnitus Quest.

I admit I was initially skeptical. However, I can now say that I no longer have any skepticism. I wish the project all the best and have good faith that it's in the right hands.

On a side note, India is a very 'untapped' market regarding tinnitus. I was recently involved with a mobile tech firm in India. I encountered many people suffering from tinnitus who were unaware of online forums or ongoing research in this area that I had brought up.

 

Until I got tinnitus, I didn't realize how "abandoned" the overall community was. Unfortunately, I came face to face with this harsh reality after having it. I want to thank both @Markku and you for creating such a platform. If there is a place called heaven, I am sure there is a special spot reserved for you guys there.

In the support groups I joined before, I saw many people say they wanted to do "something" about tinnitus, even planning to meet with the health minister or famous people to work on a solution or create short films to raise awareness. But when their spike periods passed, they vanished without looking back and deleted their accounts. This happened not just once or twice but with dozens of people.

At first, I understood these people because no one wants to remember and live with such a cursed illness constantly. But later, when I realized that their promises and the actions they said they would take gave other sufferers a glimmer of hope, I began to resent them.

For instance, even when I am not in a spike period, I still support and help people in forums and communities in my country. If we all act like those people I mentioned, we won't create awareness or get closer to a cure, not in 2024 or even in 3024. Even if my tinnitus and hearing problems completely disappear tomorrow, I will continue to support this process as much as I can for the rest of my life.

I don't rely on others or some device someone else might develop. I know we need to cut the knot ourselves. I am not a doctor; I don't know in what way or how this illness can be treated or if it is even physically possible. But I don't want to sit idly by, and I won't.

As I mentioned in my previous post, I believe some people can do promotion work better than I can. When I looked at the list of volunteer jobs, I didn't see anything I could do because Tinnitus Talk is the first forum I have ever joined, and I don't have the skills mentioned. However, I am eager to support both Tinnitus Talk and Tinnitus Quest. Given these conditions, I am not sure how I can contribute.

 

Can somebody post the link to donate? I want to donate, but I cannot seem to find the spot to do so.

 

I am very glad that Tinnitus Quest was created. I am trying to promote it on Facebook in Slovakia and the Czech Republic.

I would also love to donate money.

 

Tinnitus Quest is a great initiative. Currently, there is practically ZERO representation of the hearing loss/tinnitus population (ATA is a joke, in my view), and if Tinnitus Quest could reach out to the world, that would be fantastic!

I think there is also a lack of communication between research teams worldwide, and we often see them running in circles. If they were in contact with Tinnitus Quest, they could get so much information, feedback, etc., which would help them with their research!

I will definitely donate once it becomes available.

 

What is the main difference to the Tinnitus Research Initiative?

In any case, good luck with Tinnitus Quest! I hope it gets some more attention to this very frustrating disease.

 

Thank you for this initiative

 

@Hazel, thank you for your great work! Tinnitus Quest is a very useful project!

 

@Hazel, thank you very much for your work. I would like to help—with donations as well as work. I have exchanged ideas with Sven. Maybe we can exchange ideas, too. I wrote an email to Tinnitus Quest.

I'm new to Tinnitus Talk and would like to support my/our healing through Tinnitus Quest.

I see great potential but also some hurdles, especially in how many other support groups are managed, and do not allow other opinions. In my opinion, it is more than questionable that such good initiatives as Tinnitus Quest are simply banned in tinnitus support groups under the guise of advertising.

 

Would it be worth getting Dr. Hubert Lim from Neuromod to do a discussion?

He recently mentioned improving Lenire and how it’s not working for everyone. I think this would give us a chance to probe him further.

 

I am slightly cautious about Dr. Hubert Lim, but maybe I don’t know all the facts. He seems proud that Lenire is a “habituation” device, not a treatment to reduce tinnitus. Does he understand the severity of this condition? Will he be pushing for silence?

 

I'm wondering if Neuromod operates on a basis similar to smartphone producers: only introduce incremental upgrades every 1 or 2 years so that people will continue to buy (minor) upgrades for slightly better results.

Somehow, Dr. Lim and his fellow researchers managed to cure @kelpiemsp, so they were definitely on to something. Nevertheless, this user mentioned it might be thanks to being subjected to much heavier equipment (rather than the end product) over 12 months.

Or perhaps @kelpiemsp was an outlier, and not many others were cured. I believe he mentioned he wasn't aware of the other patients' results. I guess we'll never know.

 

It would be great to ask Dr. Lim about this and if he’s using his findings at Neuromod.

You would think he’s up to something there; otherwise, why would he still be employed there...

 

Yes, a good idea. We need to use every opportunity.

We can also make flyers for the waiting rooms at doctors' offices. There are so many tinnitus patients who don't search online but who also want a cure. But it's expensive to make flyers. Maybe the money is better used for something else.

Regardless, we need to build “alliances” with doctors so that they can inform their tinnitus patients of Tinnitus Quest.

 

In my opinion, you are right. Building partnerships is the most important next step. Too many are precious about 'their own thing,' rather than the cause.

 

A commendable effort. Godspeed with Tinnitus Quest!

 

Hey @Hazel,

When is the first Q&A with Dr. Djalilian?

I found that in Germany, they are also working with implants and inner ear stimulation, but there’s very little information available. That’s a significant problem that I hope Tinnitus Quest can help address. The project started in 2017 with the goal of finding a solution, and while there have been some successful trials, that’s all we hear. We need more transparency to stay hopeful. Maybe Tinnitus Quest could reach out to the researchers involved in this project.

Overall, I’m optimistic that implants in the inner ear or general auditory cortex stimulation will be our big hope in the coming years. Many studies (Mayo Clinic, Maastricht, Dr. Djalilian, Charité) have had positive outcomes.

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