Johns Hopkins on Hyperacusis: Damage-Evoked Signals in Cochlear Neurons and Supporting Cells

Sharing a very recent article from Johns Hopkins from 13 February 2024. Here's the link. I've attached a PDF version, and a synopsis below:

 

@AverageJoe12, 'not your average Joe.'

It reflects the presentation by Megan Beers Wood at ARO 2023 and perhaps leads us toward anti-inflammatory + opioid type medication targets. They mentioned the potassium channels involved in the discussion section.

 

I don't see much new information in this article that hasn't been discussed in previous papers.

 

I definitely don't keep up with the research as much as you guys, but if it's dated this month in the Frontiers in Neurology, my hope is more medical and research professionals will have come across it this month.

I'm not very optimistic about my appointment with Johns Hopkins in 3 weeks with a neuro-otologist for my right ear hyperacusis. But if you had the attention of an MD for 20 minutes, is there 1 or 2 research papers you'd try to share with them or points of emphasis to make? Their own University colleagues, Paul Fuchs and Megan Beers Wood, are the ones publishing these research findings but I'm sure there's still a disconnect between the research and clinical arms at Johns Hopkins because this is new science/research.

Anything I can do to try to advocate for patients like us and bridge a knowledge gap while I still have good medical insurance (a blessing in the US), I'll do.

 

That depends, what kind of treatment are you looking for?

Ever considered a visit to Dr. Boedts yet?

 

It's one-sided hyperacusis so I've thought maybe Clomipramine might not work, though I still want to try it after @Trafalgar D's great reviews months later. Then I have the Dr. Silverstein surgery as an option. He'll only operate on one ear at a time anyways, and one ear is all I need.

Have you seen Dr. Boedts or found any hyperacusis relief if you suffer from it? I wonder if Dr. Boedts would see an American if I was able to make a trip.

 

I don't think it's really difficult to get a Clomipramine script. Should definitely be feasible even without any supporting papers.

Yes, I've visited Dr. Boedts but didn't get any relief from his procedures. Still highly recommend him.

I don't see any reason why Dr. Boedts wouldn't see you just because you come from America. If you can handle the trip you can book an AirBnB or hotel in Gent. That's what I did.

Dr. Boedts offers online consultations for a reasonable price. You can always book one and ask him what he can do for you.

He's a great guy.

 

After reading your post, I looked up Dr. Boedts. His clinic is a 2-hour drive away from me, so it could be pretty interesting for me to go there.

However, he also seems to use Lenire as an active treatment. He mentions bi-modal stimulation as a form of treatment, and it's accompanied by a picture of a woman using Lenire.

The information on his website does make it seem like he does a thorough scan of any possibilities for treatment.

If I were to decide to go there and opt for any treatment, I guess I could always decline the Lenire option.

 

Yeah, I don't think you need to commit to Lenire at all. I'd be willing to try it if I could tolerate it, but just last night, I tried a bimodal stimulation YouTube video for tinnitus relief and got almost immediate discomfort from the high-pitched tones. Kind of nuts that it could be so triggering. Clearly, something is wrong at those higher frequencies, and that has to be where a lot of us here have hidden hearing loss.

So if Lenire hits those high-pitched tones, it's a no-go for me.

Thanks so much, man. I could use a vacation maybe this summer to some quiet region in Europe, but maybe I can make a stop through Gent. Europe is where I sustained my acoustic trauma in a nightclub. So maybe the cure or some relief is on the old continent too. It could've happened just as easily in the USA too. We're an unnecessarily loud nation, and I'd be willing to bet the US military sustains more noise injuries than any other population on the planet. It's actually a great data set and patient population, and I'm surprised the US doesn't have their equivalent of a Dr. Boedts yet. ENTs and neurologists don't want to fully own the issue, apparently, here.

I'll look into an online consultation first with Dr. Boedts. I'm emailing him today. I secured a Clomipramine subscription from my psychiatrist on the basis of anxiety from this condition, but he was happy to read some literature on hyperacusis. I can't believe my ENTs have given zero shits about my condition, while my psychiatrist is readily reading articles I send him, like the one on migraine prophylaxis in the treatment of hyperacusis. Someone needs to go crack the whip at one of these conferences and let the ENTs and neurologists know they need to sort this shit out and take ownership of these audiologic health issues.

 

I wish we could get some doctors to read these Johns Hopkins articles on hyperacusis and see if they can come up with some sort of solution.

Professor McNaughton speculated tinnitus to originate from type II afferents, so there is theoretical overlap between noxacusis and tinnitus. If only these type II afferents were investigated more.

 

Yes, the more I read, the more I think it's (tinnitus, hyperacusis, noxacusis) all pain based.

I saw this today:

Understanding Pain Signals Triggered by Damage to the Inner Ear

 

Yes, I saw that, thank you.

The fact that Megan Beers Wood will "continue to explore the activity of epithelial cells and type II cochlear afferent fibers as the cellular basis for pain hyperacusis" is a glimmer of hope.

I wonder how that mouse model of pain hyperacusis is coming along.

 

What is your opinion of Arnaud Norena's hypothesis?

I have pain hyperacusis with contraction of the tensor tympani muscle at various sound frequencies, even at low intensities.

So if there's a contraction of the middle ear muscles, it must be linked to Arnaud Norena's theory?

Or could it also be linked to the work of Megan Beers Wood?

What do you think?

 

What have tinnitus and loudness hyperacusis to do with pain, if they don't actually cause pain?

 

My tinnitus causes pain. If it didn’t, it would just be noise. It is pain the same way that fingernails on a blackboard are painful to hear.

 

The ATA sent an email today on tinnitus research grants and I wish they would just divert some of that funding to this research. I wish this was enough of a theory for the neurology and pharmacology fields to repurpose an existing drug to treat hyperacusis.

Or should I just take Clonazepam for the next decade and live as a loner? Such shit.

Same here. Strong contractions in both ears (even my good ear) with the slightest mechanical sounds. Along with tinnitus and hyperacusis. I guess I've read it's a type of myoclonic tinnitus?

 

They do! Loudness hyperacusis is probably caused by the same nociceptors with the difference that you only get the uncomfortable feeling, not pain. For me, since a few months, tinnitus has become a constant pain. I can distinguish different types of tinnitus. My (variable) tinnitus (that is probably peripheral caused) is experienced as a constant pain. I also have different constant stable tonal tinnitus sounds in the brain, which can be annoying, but harmless. The problem is, up till recently, researchers only focused on the brain tinnitus; most of them still do.

It's the only way to explain Dr. Pulec's results.

 

Many researchers have compared tinnitus to chronic neuropathic pain.

 

When you talk about peripheral tinnitus causing you pain, is it somatosensory tinnitus (jaw, neck, Eustachian tube, etc.)?

Or is the tinnitus linked to contractions of the tensor tympani muscle, in reaction to external sound?

 

Frankly, I think it's a good comparison. I can only compare the sound to a type of chronic pain in a qualitative manner -- it doesn't go away, can't really be treated, and saps your attention constantly.

 

Yes, I have had somatosensory tinnitus (neck/jaw) since it escalated in 2018. Currently, when I just talk a bit too much, my tinnitus gets worse. Then, for the next 1-2 days, I experience more pain, like someone has slapped me in my face/ear. My head feels like I have a hangover and went to a concert or party that was much too loud.

I don't know about tinnitus linked to contractions of the tensor tympani muscle but I don't rule it out because it sometimes feels like muscle pain. However, It would be weird that just a little talking would cause my this kind of pain.

My ears/head never feel normal; you shouldn't feel your ears. I also have sensations all over my face and skull + headaches. 3 x 300 mg Gabapentin brings some relief, not that it lowers the tinnitus; it just helps me with the pain.

 

What procedures did you get?

 

Bupivacaine [?] injections, tympanic patches and gel injected in my Eustachian tube, I think.

 

And none of it helped at all? I've got a video meeting with him next week. I was really hoping he could help.

 

Nothing helped me, but hopefully, your case might be different.

 

Too bad it didn't bring you any relief. Where did he inject Bupivacaine? Didn't you get any relief at all, not even temporary?

 

He injected it in many places around my face. I don't remember exactly. No relief at all.

 

Can I ask if the treatment was expensive? Are you from Europe?

 

Yes, I'm from Europe. The treatment was less than 100 euros in total, I believe.

 

Hearing Health Foundation: Understanding Pain Signals Triggered by Damage to the Inner Ear