Introducing Tinnitus Quest

To prescribe medication, the practitioner must be licensed in the state where the prescription is being issued. NeuroMed is currently licensed in 10 to 12 states, but PA is not one of them (yet).

However, I spoke with someone named John from NeuroMed this morning, and he mentioned that he would look into the PA laws to see if there are any legal loopholes similar to those they’ve found in one or two other states. If not, he will provide me with the research article and paperwork that outlines the algorithm for medication recommendations, doses, and other relevant details. I could then take this information to my local ENT, who could prescribe the medication while I participate in the other aspects of the NeuroMed program.

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.

Perhaps we can start a thread under “Treatments” where anyone who tries Dr. Djalilian’s program or protocol can share their experiences. I’d love to hear from patients who have already completed the program if they are on Tinnitus Talk.

 

Concerning NeuroMed: I checked the website, but the cost to enroll appears to be $2600.

Do different prices apply if you only make use of telehealth? Plus, has anyone outside of the US already tried this?

I wonder how difficult it would be to obtain any kind of coverage for this through my (European) healthcare provider.

@ErikaS, I agree; a dedicated thread for this would be really helpful. I'm willing to give it a shot (depending on cost) and report back here.

 

I was offered a significantly reduced rate because I would need to work with my ENT in Pennsylvania for prescriptions. The state doesn't allow me to have direct consultations with them outside of the free, 30-minute initial consultation. However, the program they offered includes unlimited email consultations between my ENT and NeuroMed’s NP regarding medications and related questions.

The reduced rate is under $1,000, but I’m not comfortable sharing the exact amount because I believe it was tailored specifically to my situation.

I started the thread:
→ NeuroMed Tinnitus Program — Founded by Dr. Hamid Djalilian

 

Hey Hazel

I saw the first video on Instagram yesterday, along with the comments about contributing to the patient board. I had the same question. I signed up for Tinnitus Quest at the very beginning to express my interest in helping and shared my qualifications. However, I still don’t have a clear understanding of how everything works with Tinnitus Quest.

I’m still interested in helping and wanted to ask what the process is like. I’m currently studying for a Master's degree in Management and hope I can be helpful in some way

 

Hey Hazel,

That sounds great! I can imagine it's a lot of effort and hard work, but it's also fantastic that there's so much interest.

Hopefully, you'll have a few more helping hands on the team in the future.

Thanks again, and much respect to you and the team. I look forward to hearing from you soon!

 

There are some drugs available for depression, even though the causes of depression are not fully understood. I believe it's possible to find a cure—or at least a decent treatment—without knowing exactly what the cause is. It's similar to how researchers approached HIV. They figured out how to stop the virus from replicating with medication, even though they haven't yet found a way to completely eradicate it from the body, as the virus hides in cells. This is why people can live normal lives and avoid transmitting the virus while on medication and remaining undetectable. However, if they stop taking the medication, the virus can return and even mutate, making the medications less effective.

Some viral infections, like HSV, don't have good animal models for testing treatments and potential cures. I'm not sure if this is an issue with tinnitus, but it wouldn't surprise me if it were. Without good animal models, it's very difficult to advance a treatment or cure to the stage of human testing in the U.S.

I've heard of researchers moving their work out of the U.S. due to all the red tape and delays. I assume this is one of the challenges we face. I might have to make a trip to Germany someday if you develop something worth testing, but I'll need to review the research and thoroughly assess the safety first.

 

Thank you for discussing Eustachian tube clicks. I had been wondering for a couple of years what was happening when I swallowed. And yes, it does contribute to the noise spectrum in my right ear. I have Acoustic Neuroma, which has caused tinnitus on the right side, while my left ear has experienced tinnitus since 1992.

Sleep deprivation has also been an issue. I was too stressed to sleep during that time, and one morning, the ringing in my ears didn’t stop—New Year's Day, 1992!

 

Hi @Hazel,

I received an email yesterday from Tinnitus Quest, which mentioned that a German entrepreneur was a driving force behind its establishment. That’s great! I was wondering if there are plans to bring more high-net-worth individuals on board, and possibly even some celebrities who suffer from this condition?

It feels like a lack of funding and awareness is hindering progress toward a cure. Having the backing of influential people could potentially help drive us closer to a solution.

 

I recently saw that there is a clinical trial for a nasal spray medication for tinnitus. Would this clinical trial be a part of Tinnitus Quest?

 

Check the Gateway Biotechnology thread under Research News. Is that what you are referring to? If the answer is yes, then no, Tinnitus Quest will not be funding it for obvious reasons.

 

I'm so happy to see my vision finally come to fruition—a dedicated, research-focused nonprofit built on the fundamental principle of transparency. After personal setbacks prevented me from moving forward before, this success fills me with a renewed dose of hope!

 

Is there a way to find out how much funding Tinnitus Quest has received? I’m interested in contributing, but I would also like to have some insight into the nonprofit’s growth potential.