Episode 20: The Man Who Donated a Million Dollars to Tinnitus Research

Through half of the podcast I heard Dr. Hamid Djalilian say that sometimes the hair cell is intact, but the nerve endings have disconnected to the hair call.

Here's a question being answered about if it's enough to regenerate hair cells to get hearing back, and if other things such as the nerve cells also have to be fixed:

Hearing Health Hour Webinar | The Present and Future of Inner Ear Hair Cell Regeneration

Hearing Health Hour Webinar | The Present and...

Lisa Goodrich who's lab mostly focuses on the auditory nerve:

”…we have thought a long time about how the hair cells are innervated by the spiral ganglion neurons.”

”In a mouse where you can create a hair cell where their not supposed to be the spiral ganglion neurons will follow and they are pretty good at sorting out and trying to find a target to innervate”.​

Would be interesting to know what the take is on intact hair cells that have lost their nerves – why doesn't these nerves connect back to the hair cell if a newly created hair cell makes them connect?

 

Mammals lack the ability to regenerate synapses in the inner ear. It's just something we can't do. However, some studies have shown that applying a chemical called brain-derived neurotrophic factor (BDNF) leads to synapse repair. This is the idea behind OTO-413, which is in clinical trials right now.

As an aside, I came across a optimistic slide on that presentation you linked:

​

 

I haven't heard the podcast yet but I have read the comments.

And this "4 years" timeframe is unclear to me.

4 years before their device is available to public or 4 years before they start human trials?

 

Okay, I just listened to it so it is actually 4 years before they start to try it with humans in a clinical trial. Probably you'll need to double this time to get the human trials done and make it accessible to public if it's working.

Well, that's a very long time waiting but at least they are trying.

 

In light of OTO-313 not planning out (and that path now possibly in doubt), I hope this path can somehow get expedited.

 

Hi, everyone. I found this paper by Dr. Djalilian to be very important. Please share and comment.

→ Tinnitus Is Modulated by Migraine

 

Thanks for this. Should be an interesting read!

 

Thanks.

So a treatment for fluctuating tinnitus is 400 mg Magnesium, B2, Nortriptyline and Topiramate +/- Gabapentin.

In conjunction with CBT and music.

I like the combined approaches rather than trying one thing at a time, usually with little success.

 

Looks like there is a follow-up study on this but it is behind a paywall:

→ A Digitally-Controlled Integrated Circuit Solution for Tinnitus Treatment with Charge Balancing

 

Full article attached.

 

Money bags.

 

Looks like Dr. Djalilian has finished designing the chip based on a model of the human cochlear, with precise measurements and location of implant.

 

What do you think about this treatment?

 

Which treatment? The cocktail of medications and nutraceuticals, CBT app, or sound therapy?

 

It does not inspire confidence, in my opinion. Especially seeing this on NeuroMedCare.com:

We are proud to announce that our success rate is 85-90% in reducing the volume of tinnitus and resolving or nearly resolving the “bad” tinnitus days.

 

They take an approach to treating migraines - following a migraine diet and migraine medication. I'm not sure what all migraine medication is used, but I do believe Nortriptyline and Gabapentin are a combination they use.

I believe they have done clinical trials and, therefore, have some relevant insights into the effectiveness of this treatment.

Dr. Djalilian and his colleague, Dr. Harrison Lin, seemed like really great doctors when I met them.

 

Yes, the cocktail of medications.

 

• Nortriptyline
• Gabapentin
• Topiramate
• Vitamin B2
• Magnesium

 

I signed up for this program over the weekend. Although I *think* I'll be able to improve/habituate over time, I wanted to be proactive and not sign up for something that is, generously put, several decades behind the times (the local clinic near Minneapolis that I visited ten years ago as well is now promoting Lenire quite a bit and didn't seem to know all that much about Dr. Shore's device except that their doctor said he "thought it worked a lot like Lenire's does").

I'm about to dive into the supplement side of things first, which is recommended at:

• Riboflavin (Vitamin B2): Take 400 mg daily in the morning.
• Vitamin D: Take 10,000 IU daily in the morning.
• Melatonin: Take 3 mg daily 1 hour before bedtime.
• Magnesium Glycinate: Take 400 mg daily (divided throughout the day).
• Coenzyme Q10: Take 300 mg daily.

You can add/ramp up Nortriptyline and/or add Topamax at about 10 mg intervals per week (e.g., 10 mg week 1, 20 mg week 2, etc.) Combined with trying a migraine elimination diet (goodbye coffee for 12 weeks ) and lifestyle changes around exercise and drinking water. Combining supplements/medication, CBT/counseling, and lifestyle changes can decrease tinnitus loudness and reduce the number of "bad" days or bad events. It's definitely preferable to *just* doing CBT and/or TRT.

The whole theory behind the protocol is that for people who previously had manageable/mild tinnitus and had something occur that caused the tinnitus loudness to increase/fluctuate, it would raise the "migraine threshold" to a point where the tinnitus loudness/increasing loudness episodes become less frequent. I've asked about the specific research that shows the combined efforts make a difference, which is quoted/mentioned by Dr. Djalilian in the welcome materials. Still, it's at least a novel approach with little downside to trying. (At a minimum, my personal mental health today is much, much better than it was just last week, for example.)

I will update intermittently either here or start a new thread if it becomes interesting to anybody else, but this thread was what pushed me over the edge to spend $2k on Dr. Djalilian's clinic Let's see a Dr. Djalilian / Dr. Shore superteam emerge!

 

I've tried everything on the list except for the Nortriptyline and Topamax combo and am really interested in hearing how it works for you. Please keep us updated if you can.

 

Yeah, Nortriptyline doesn't work, either. I've been on various doses up to 50 mg for a few months. People will throw everything at it, hoping something works.

 

I'm sorry it didn't work for you, but it's good that you are still trying different things and not letting the fear of it getting worse stop you. You're helping people more than you know. About the Nortriptyline, maybe it would work combined with the Topamax rather than just by itself? But it sounds like you're done with that one. When I first got tinnitus, I tried everything on the list above, but not all at once.

 

I've also tried many things, some for tinnitus, some for sleep or anxiety. When you also start accounting for taking multiple medications/supplements, doses/scheduling, etc., that could make a difference, you get into countless possible combinations.

Nortriptyline alone has helped some people's tinnitus and spiked others. I was on it for over 1 1/2 years until I slowly finished weaning off it in September 2023. I thought I was done with it, but I might actually have to go back on it for an unrelated reason - stomach pain, which started after I had weaned off Nortriptyline when temporarily trying an SSRI.

 

Ah, me too, man. I'm a week in. Let's share progress notes. Do you have any hyperacusis or purely tinnitus? Do you know the root cause? I went to a nightclub in February '23 and have had unilateral hyperacusis and brain tinnitus since. I hope the Nortriptyline benefits me as I ramp up.

 

Why don't we set up a new thread in a little bit? I want to ease into it a bit, and honestly, I am still trying to decide how legitimate this will be vs. how much a little bit of BS is. I've also had a bit of back & forth with Dr. Djalilian through his staff. He has been pretty interested in both this and future treatments (long story short, he does not think things like Dr. Shore's device alone can get patients to the best place and thinks patients will always need a multifaceted approach to be more manageable.) I can see that someone like Dr. Djalilian is very knowledgeable on the subject, AND he is running a clinic that exists within late-stage capitalism, and it benefits him and his clinic to position themselves as "the" experts in the field (that's a different rabbit hole I could go down :-D), but I also can agree with his position that a device like Dr. Shore's might very well help a lot of people and not be the only thing patients can use.

I first had tinnitus in 2014 following an ear infection that was moderate-to-severe for about six months, then gradually got to be pretty mild. I'm a lucky one in that I've only experienced hyperacusis at the very beginning of encountering tinnitus, and my frequency has really only stayed on my left side, and about 95% of the time, I'd say it's in the "ear," and not the "brain." I experienced a worsening when I went to a concert in May of this year, and I am hoping that by being proactive in healing and avoiding triggers, I can get back to habituation sooner than I did last time around. I had a few monster spikes in May that were really alarming, but I've since eased back into regular life (but trying to avoid environments above, say, 75 dB or so) and have not had that experience much in June. Now I'm just trying to be less depressed and anxious about the whole thing again, to be honest!

 

Why does Dr. Djalilian doubt the work of Dr. Shore, and what exactly does he mean by a multi-faceted approach? What else would be needed if Dr. Shore's device works to reduce tinnitus or eliminate it?

 

I'll share his whole reply here in full, although I'll ask the mods if they feel it is appropriate to keep it here.

I'm not sure he's saying he does not believe it works. He's pointing out that there are many factors involved and many different subtypes of tinnitus, which I think we can all agree on.

 

Is this Dr. Dijimon an idiot? He obviously hasn't read more than a paragraph of Susan Shore's papers if he's comparing LTP and LTD (decreases in synaptic strength, making neurons less likely to activate in response to stimuli) to f*cking habituation. Seriously? Habituation is literally "getting used to it" (associative learning, no permanent changes in synaptic strength), no more. You absolutely cannot compare these things. There have been multiple studies that show TRT (sound therapy) is literally NO BETTER than doing nothing or just CBT with no sound generators.

Also, he exclusively mentioned TFI in his response, even comparing it to the Lenire trial, mentioning absolutely f*cking nothing about the objective tinnitus decrease achieved using Loudness Matching and Minimal Masking level. TFI can decrease on its own with time due to psychological factors (like CBT, etc.).

It is absolutely NOT applicable to draw parallels like he does in this response. I already had doubts and was suspicious about this guy, and now I'm absolutely sure he's incompetent.

 

Is this what Dr. Djalilian recommends and at those doses?

A couple of questions;

1. What type of Magnesium does he recommend?
2. Do you know anything about the doses of Gabapentin or other drugs he uses? Lamotrigine was one on the study paper.
3. What time of day is Nortriptyline taken?

I am interested in trying this. Please go and start a new thread about it in Treatments.

 

Below are the supplements recommended and dosages. Gabapentin, I think they mentioned, is not really going above 900 mg for tinnitus, though Topiramate is their first recommendation. They mentioned Gabapentin, Lyrica, or Lamictal being an option if Topiramate (first-line recommendation) isn't tolerated. Verapamil can also be added after an anticonvulsant/CNS depressant is added if there is no relief. See the image attached below for the full medication protocol:




Melatonin 3 mg
Life Extension

Package instructions:
1 Capsule x once per day / anytime.


Riboflavin 400 mg
Seeking Health

Package instructions:
1 Capsule x once per day / anytime.


CoQ10 200 mg
NOW Foods

Dr. Hamid Djalilian's instructions:
1 Capsule x twice per day / anytime.


Magnesium (glycinate/malate)
Vital Nutrients

Dr. Hamid Djalilian's instructions:
1 Capsule x twice per day / anytime.


Vitamin D 5000
Nutra BioGenesis

Package instructions:
1 Gel x once per day / anytime.