Introducing Tinnitus Quest

[lymebite]

Interesting. I've never heard of her, but will look her up!

She was running for Vice President of the United States as the running mate of Robert F. Kennedy Jr. However, they recently dropped out of the race, leaving Harris and Trump as the only remaining candidates.

 

[Nick47]

I personally want to explore this further because, even in my brief conversation with John about my variable, sound-reactive tinnitus that includes loud spikes and changes, he said my reactivity would make me an ideal candidate for their migraine protocol. If I can manage my sound sensitivity and reactivity with the medication and supplements, it would address more than half of my struggle.

I completely agree with you. It took two years for my reactivity to even begin to improve, and now it's back with a vengeance after just three hours in bars, even with hearing protection and substantial breaks between venues. When a car goes by, the intensity spikes again. I feel devastated. Some say it will only take a month to improve, but I'm not confident about that. I also experienced a return of loudness hyperacusis for about ten days.

I'm skeptical but desperate, so I'm considering starting Nortriptyline and Topiramate at low doses, along with Magnesium and CBT again.

There might be some hope, as there was a study showing positive results for hyperacusis with this approach.

 

[Bhaveen]

All this talk about money and what's needed got me thinking—and maybe it's a silly idea, but hear me out.

Does Susan Shore have a global patent for her device? I tried to Google it but couldn't find any clear information. Even if she does, why couldn't Tinnitus Quest offer her a lot of money to license the technology and launch it in a market they're not planning to tackle, somewhere outside the U.S., like India, Australia, Dubai—anywhere, really?

I bet you could do a better and faster job of bringing it to market, and you'd have so many volunteers from this community eager to help.

 

[2noist]

Does Susan Shore have a global patent for her device? I tried to Google it but couldn't find any clear information. Even if she does, why couldn't Tinnitus Quest offer her a lot of money to license the technology and launch it in a market they're not planning to tackle, somewhere outside the U.S., like India, Australia, Dubai—anywhere, really?

Are you suggesting that if there's a country where her device is not patented, Tinnitus Quest should try to create a copy and market it to patients? I don't think any self-respecting organization would do that. It's childish to even consider.

From what I've read about Tinnitus Quest here, they're not going to offer money for something that has already undergone studies and is simply awaiting approval from regulatory bodies.

Her device won't work for everyone, and it is unwise to focus all efforts on one treatment, as someone mentioned earlier.

 

[ErikaS]

I completely agree with you. It took two years for my reactivity to even begin to improve, and now it's back with a vengeance after just three hours in bars, even with hearing protection and substantial breaks between venues. When a car goes by, the intensity spikes again. I feel devastated. Some say it will only take a month to improve, but I'm not confident about that. I also experienced a return of loudness hyperacusis for about ten days.

I'm skeptical but desperate, so I'm considering starting Nortriptyline and Topiramate at low doses, along with Magnesium and CBT again.

There might be some hope, as there was a study showing positive results for hyperacusis with this approach.

I hear what you're saying—literally. I am (not so patiently) waiting for Dr. Hamid Djalilian's latest migraine protocol trial to be published or shared with us through Tinnitus Quest, especially since he is on the board. Once I see the data from the larger sample size and get the specific details, I'll decide about the medications.

 

[Bhaveen]

Are you suggesting that if there's a country where her device is not patented, Tinnitus Quest should try to create a copy and market it to patients? I don't think any self-respecting organization would do that. It's childish to even consider.

From what I've read about Tinnitus Quest here, they're not going to offer money for something that has already undergone studies and is simply awaiting approval from regulatory bodies.

Her device won't work for everyone, and it is unwise to focus all efforts on one treatment, as someone mentioned earlier.

No, I'm not suggesting creating a copycat device. I'm saying take her device and explore opportunities that may not be on their current roadmap—work with them. It may not help everyone, but if I had the funds, I'd invest in something that's already proven to work for some people rather than pursuing avenues that might not work for anyone.

This approach isn't childish; it's about viewing things from a different perspective. For example, what's the quickest way to reduce suffering for people, even if it's only for a few? The goal is to harness the enthusiasm we all share for treating this condition.

As for "simply awaiting regulatory approval" — read the thread on the device. It's not just that.

 

[Watasha]

Thank you for pitching in and for the kind words! I had been meaning to reach out to you, because I know this is close to your vision and we'd love to have you involved in some way. Let's have a call soon if you're willing.

Thank you for the kind words! I can't take any credit for this as I had no involvement, but I'm thrilled to see something so similar take shape! I truly appreciate that you would consider me for involvement in the new venture.

As a new, first-time parent, my hands are quite full, and I'm not sure how much help I could be with the limited time I have. Perhaps we can reconnect down the road if my schedule opens up?

Regardless, I wish you the best of luck with this new endeavor. I'll be cheering for its success and promoting it wherever I can!

 

[Nick47]

Once I see the data from the larger sample size and get the specific details, I'll decide about the medications.

Did he not present the graphs in his presentation, or were those from the first trial? Also, are you still taking Lorazepam?

 

[marqualler]

Once I see the data from the larger sample size and get the specific details, I'll decide about the medications.

Agreed. Since I'm not in this world all the time, I'm unsure how common this is, but I often notice that Dr. Djalilian's PubMed articles include a "conflict of interest" statement at the bottom, indicating his affiliation with companies that sell services similar to those discussed in his research. This isn't a criticism of his companies or his work—I understand the realities of balancing business interests while serving patients. However, I would feel much more confident in the Nortriptyline/Topamax protocol after seeing the published results of the double-blind study he conducted.

 

[ErikaS]

Did he not present the graphs in his presentation, or were those from the first trial? Also, are you still taking Lorazepam?

I'm almost certain the graph shows their latest findings, but I'd like to see the publication first. And yep, I'm still taking 0.5 mg in the morning and 0.5 mg in the evening. Just to give you an idea of how well I was doing from April to early June—the plan was to wean off Ativan over the summer. Unfortunately, the universe had other plans.

 

[lcj]

Interesting. I've never heard of her, but will look her up!

She is the ex-wife of Google founder Sergey Brin and recently ran for Vice President alongside Bobby Kennedy on a platform focused on solving chronic disease. She is very passionate about this topic and is well-connected with individuals in the health, tech, and alternative health sectors.

I suggested her because she has her own podcast and could help spread your message or connect you with other entrepreneurs and investors. However, I'm not sure if this topic will interest her.

Another celebrity you might consider reaching out to is Rick Rubin, the legendary producer known for his work with Nirvana, R.E.M., and many others. These days, he's more focused on health, circadian rhythms, and quantum biology, and he interviews various guests on his podcast, *Tetragrammaton*, which is truly fantastic. Rubin is often referred to as "the connector" for his unique ability to bring together people from vastly different backgrounds.

 

[Bhaveen]

She is the ex-wife of Google founder Sergey Brin and recently ran for Vice President alongside Bobby Kennedy on a platform focused on solving chronic disease. She is very passionate about this topic and is well-connected with individuals in the health, tech, and alternative health sectors.

I suggested her because she has her own podcast and could help spread your message or connect you with other entrepreneurs and investors. However, I'm not sure if this topic will interest her.

Another celebrity you might consider reaching out to is Rick Rubin, the legendary producer known for his work with Nirvana, R.E.M., and many others. These days, he's more focused on health, circadian rhythms, and quantum biology, and he interviews various guests on his podcast, *Tetragrammaton*, which is truly fantastic. Rubin is often referred to as "the connector" for his unique ability to bring together people from vastly different backgrounds.

I know I'm stating the obvious, but Chris Martin from Coldplay has been open about his tinnitus, and he seems like a compassionate individual.

 

[Nick47]

I think one of the most cost-effective, high-risk, high-reward strategies is to run small, single-center trials using the researchers on the Tinnitus Quest board and their assistants. These assistants are often low-paid master's and PhD students.

We should explore compounds already in clinical trials for other conditions, such as epilepsy (e.g., KV7.2/3 modulators, KCC2 drugs, and positive GABA modulators). If an agreement can be made with the companies to purchase these compounds for trials, this would constitute the bulk of the cost. Placebo pills, by contrast, are inexpensive.

A proposed study could involve a 50-patient, crossover trial over six weeks, utilizing a crossover design to minimize individual placebo effects. The advantage of using compounds that are already in Phase 2 or 3 clinical trials is that safety and side effect data are available, which can be presented to patients during the informed consent process. Dr. Langguth, for example, seemed neutral on KV7.2/3 modulators.

This approach appears just as promising as the ongoing research involving Psilocybin, MDMA, and tDCS. Additionally, the cost of medical-grade drugs for such treatments is often exorbitant.

Another promising avenue is a spin-off biotech from Harvard developing non-invasive devices for those with high-frequency hearing loss, which are less invasive than cochlear implants. Many of us will experience high-frequency hearing loss, making such a device or procedure a valuable investment. This technology could build on the existing data showing tinnitus suppression with cochlear implants, offering a dual benefit of improved hearing and reduced tinnitus.

Ultimately, it's about opening dialogue with researchers and organizations, assessing where they are, and identifying the best value-for-money opportunities.

 

[sergerold]

We should explore compounds already in clinical trials for other conditions, such as epilepsy (e.g., KV7.2/3 modulators, KCC2 drugs, and positive GABA modulators). If an agreement can be made with the companies to purchase these compounds for trials, this would constitute the bulk of the cost. Placebo pills, by contrast, are inexpensive.

You probably don't even need to buy it from pharmaceutical companies—just have a lab produce it since the molecules are already known. There shouldn't be any intellectual property issues, as long as it's not being commercially exploited.

 

[Nick47]

You probably don't even need to buy it from pharmaceutical companies—just have a lab produce it since the molecules are already known. There shouldn't be any intellectual property issues, as long as it's not being commercially exploited.

I'm not sure about this aspect. It's a win for the company because any success opens up opportunities for further indications and profit, without the costs associated with running a trial.

 

[Cmspgran]

I think one of the most cost-effective, high-risk, high-reward strategies is to run small, single-center trials using the researchers on the Tinnitus Quest board and their assistants. These assistants are often low-paid master's and PhD students.

We should explore compounds already in clinical trials for other conditions, such as epilepsy (e.g., KV7.2/3 modulators, KCC2 drugs, and positive GABA modulators). If an agreement can be made with the companies to purchase these compounds for trials, this would constitute the bulk of the cost. Placebo pills, by contrast, are inexpensive.

A proposed study could involve a 50-patient, crossover trial over six weeks, utilizing a crossover design to minimize individual placebo effects. The advantage of using compounds that are already in Phase 2 or 3 clinical trials is that safety and side effect data are available, which can be presented to patients during the informed consent process. Dr. Langguth, for example, seemed neutral on KV7.2/3 modulators.

This approach appears just as promising as the ongoing research involving Psilocybin, MDMA, and tDCS. Additionally, the cost of medical-grade drugs for such treatments is often exorbitant.

Another promising avenue is a spin-off biotech from Harvard developing non-invasive devices for those with high-frequency hearing loss, which are less invasive than cochlear implants. Many of us will experience high-frequency hearing loss, making such a device or procedure a valuable investment. This technology could build on the existing data showing tinnitus suppression with cochlear implants, offering a dual benefit of improved hearing and reduced tinnitus.

Ultimately, it's about opening dialogue with researchers and organizations, assessing where they are, and identifying the best value-for-money opportunities.

I completely agree with this, and it aligns perfectly with the mission statement of Tinnitus Quest, doesn't it? We already know there's some solid science behind those molecules, and I think some of them truly embody the concept of high risk, high reward.

Without sounding pedantic, beyond @Nick47's suggestions, what other obvious targets are there that have any realistic prospects of near-term success?

Great outline, @Nick47. I believe this is something the team should seriously consider and think through carefully.

 

[Tim Dziwisch]

Hey,

I came across an organization called Tinnitus Free on Instagram. I only checked it out for about two minutes, but I noticed that Dr. Dirk De Ridder is also involved. Is it possible for Tinnitus Quest to form an alliance with this organization?

 

[DebInAustralia]

I hear what you're saying—literally. I am (not so patiently) waiting for Dr. Hamid Djalilian's latest migraine protocol trial to be published or shared with us through Tinnitus Quest, especially since he is on the board. Once I see the data from the larger sample size and get the specific details, I'll decide about the medications.

I'll second that.

 

[Hazel]

Hi all! Lots of interesting comments and ideas in the last few days. I was off organizing and celebrating my mom's 80th birthday yesterday (it was great) and back now, so let me respond to the latest posts:

No, I'm not suggesting creating a copycat device. I'm saying take her device and explore opportunities that may not be on their current roadmap—work with them. It may not help everyone, but if I had the funds, I'd invest in something that's already proven to work for some people rather than pursuing avenues that might not work for anyone.

This approach isn't childish; it's about viewing things from a different perspective. For example, what's the quickest way to reduce suffering for people, even if it's only for a few? The goal is to harness the enthusiasm we all share for treating this condition.

As for "simply awaiting regulatory approval" — read the thread on the device. It's not just that.

It's not a crazy idea to collaborate with them. We are in touch with Dr. Shore, Jon Pearson, and some of the investors. I'd give it very little chance that they would want to collaborate with us, though. They are very protective of their product, which is understandable as it is now a commercial venture. We'll stay in touch and see how things go, but I wouldn't get your hopes up too much on this one.

@lcj and @Bhaveen, the main challenge is not finding celebrities suffering from tinnitus or high-status individuals who could otherwise support the cause. The challenge rather is how to get in touch with these people and bypass the many layers of secretaries, agents and other people around them. How to get the celebrity themself to hear of us and consider the idea? That's the first challenge, and the second is that it's a cause that doesn't instinctively appeal to people, i.e., it's not an easy sell like sick children or abused animals or something.

Of course, we're doing everything we can to break through these barriers by reaching out to many artists and creating videos like this. But I just want to be clear about the challenges here; what we really need is someone who personally knows a key celebrity and could speak to them directly on our behalf, so if you know anyone who knows anyone... well, you catch my drift!

I think one of the most cost-effective, high-risk, high-reward strategies is to run small, single-center trials using the researchers on the Tinnitus Quest board and their assistants. These assistants are often low-paid master's and PhD students.

We should explore compounds already in clinical trials for other conditions, such as epilepsy (e.g., KV7.2/3 modulators, KCC2 drugs, and positive GABA modulators). If an agreement can be made with the companies to purchase these compounds for trials, this would constitute the bulk of the cost. Placebo pills, by contrast, are inexpensive.

A proposed study could involve a 50-patient, crossover trial over six weeks, utilizing a crossover design to minimize individual placebo effects. The advantage of using compounds that are already in Phase 2 or 3 clinical trials is that safety and side effect data are available, which can be presented to patients during the informed consent process. Dr. Langguth, for example, seemed neutral on KV7.2/3 modulators.

This approach appears just as promising as the ongoing research involving Psilocybin, MDMA, and tDCS. Additionally, the cost of medical-grade drugs for such treatments is often exorbitant.

Another promising avenue is a spin-off biotech from Harvard developing non-invasive devices for those with high-frequency hearing loss, which are less invasive than cochlear implants. Many of us will experience high-frequency hearing loss, making such a device or procedure a valuable investment. This technology could build on the existing data showing tinnitus suppression with cochlear implants, offering a dual benefit of improved hearing and reduced tinnitus.

Ultimately, it's about opening dialogue with researchers and organizations, assessing where they are, and identifying the best value-for-money opportunities.

I think this is a relatively low-cost, worthwhile strategy -- especially for drugs that are already off-patent!

Hey,

I came across an organization called Tinnitus Free on Instagram. I only checked it out for about two minutes, but I noticed that Dr. Dirk De Ridder is also involved. Is it possible for Tinnitus Quest to form an alliance with this organization?

We spoke with Dirk about it. According to him, Tinnitus Free's mission is very similar to Tinnitus Quest's. They have apparently raised about €30k since their inception a few years ago. Of course, this is nothing to sneeze at, but we've already far surpassed this in only a few months. I will ask Dirk to put us in touch with their founder and see how we can collaborate.

 

[Nick47]

Considering that Tinnitus Quest emphasizes transparency and Dr. Hamid Djalilian, who is on the board, received a $1 million donation from Brian Fargo, I would like to understand the current situation regarding his patent.

Specifically, does the patent he now holds restrict similar trials in Europe, Asia, and Australia? Understanding this is crucial for stimulating similar trials in these regions.

As I understand it, a patent holder can permit others to use their invention by granting a license. This can be done through various types of licenses, including:

1. Exclusive License: Grants one party the exclusive right to use the patented invention, preventing the patent holder from licensing it to anyone else.

2. Non-Exclusive License: Allows multiple parties to use the patented invention simultaneously.

3. Sublicensing: Permits the licensee to grant further licenses to other parties.

From an ethical standpoint, how do the board members feel about patents, particularly when the funding comes from public donations?

 

[Nick47]

Breaking into countries with the highest populations will be key.

• India: 1.43 billion
• China: 1.41 billion
• Pakistan: 240 million
• Germany: 84 million
• France: 65 million

The question is, how do we achieve this?

We would need translatable content, such as verbatim materials in languages like Hindi for India and Urdu for Pakistan. Additionally, it could be useful to create videos similar to those already on the site but in different languages.

Having representation on scientific and patient boards from different regions could also strengthen Tinnitus Quest's global presence.

When you consider that India's population is twice the size of all European countries combined (740 million), it really puts things into perspective.

China, of course, presents a bigger challenge due to online restrictions that limit access to international content.

 

[ColinUK]

I believe that establishing trust and visibility in actually taking action is key. A lot of people suffer from tinnitus. I regularly donate small amounts to charities each month that don't directly affect me, so I've started giving a small amount each month to Tinnitus Quest as well. If a decent percentage of sufferers gave even a small amount each month, you could raise millions.

But the question is, why don't people, even those who are suffering, donate? I think it might be because they're often told to just "live with it" and that nothing can be done, which causes them to lose hope.

If the team at Tinnitus Quest can figure out how to become more visible, convey that there is hope, and build trust, funding should become less of an issue.

I know it's easier said than done.

 

[Wouter De Blaere]

I believe that establishing trust and visibility in actually taking action is key. A lot of people suffer from tinnitus. I regularly donate small amounts to charities each month that don't directly affect me, so I've started giving a small amount each month to Tinnitus Quest as well. If a decent percentage of sufferers gave even a small amount each month, you could raise millions.

But the question is, why don't people, even those who are suffering, donate? I think it might be because they're often told to just "live with it" and that nothing can be done, which causes them to lose hope.

If the team at Tinnitus Quest can figure out how to become more visible, convey that there is hope, and build trust, funding should become less of an issue.

I know it's easier said than done.

People want to know what they are investing in. They do this every day for all of their expenses. Maybe Tinnitus Quest should provide a list of individual investment cases so that people can choose to donate based on the specific causes they believe in.