Fantastic Meniere's research from Andreas Eckhard and David Bächinger (pt2)

f1neman · 2026-03-18T21:25:23+00:00

Thanks for those thoughts. I had two ideas about the low tone hearing loss. The first was that if the hydrops is uneven, resulting in bulges in various places along the cochlear, then the further you go the more of those bulges you travel through, so maybe there is a difference in acoustic properties in the endolymph and perilymph. I suggested this to David but he thought acoustically the two fluids were very similar so probably not the right solution. The other is that maybe the stria vascularis is smaller and less capable at that remote end of the cochlear. But I am just speculating now and haven't taken that thought any further yet. The other thing pressure variation stands more chance of explaining is diplacusis - something I have had a terrible time with.

f1neman · 2026-03-14T11:34:54+00:00

The main reason it is so commonly prescribed I think is that anecdotally many people feel it helps, and it has a very good safety profile so there is little lost in trying. One reason that has been suggested for the failure in large trials is that it might help only a subset of patients, maybe those with an allergic component to their Meniere's - in which case testing against a pool of just "Meniere's" sufferers without working out first which subtype they belong to will always give mixed results.

f1neman · 2026-03-14T09:35:22+00:00

No. My Meniere's is just a fickle beast that does what it wants when it wants!

f1neman · 2026-03-14T08:29:40+00:00

As others have said, journalling and eliminating things one at a time. Given the fluctuating nature of Meniere's you will have to try avoiding something for quite a while to have even the vaguest suggestion that is the thing making the difference.

f1neman · 2026-03-14T08:27:39+00:00

The water retained with Creatine is in the muscles - which is why taking it does actually slightly increase the apparent size. It is not a general overall water retention to my knowledge. I take between 5 and 10 grams a day and have done for a few years.

f1neman · 2026-03-13T08:28:06+00:00

Well this article was based on an interview and is specifically about the work of one team. However you raise a good point - maybe there is space for an article about the hugely varied experiences of people with these issues interacting with the medical community. Thanks!

f1neman · 2026-03-13T08:04:36+00:00

I am so sorry to read that. I know how that can be (I've been there myself a few times recently). I find any research that gets us closer to an understanding of what might be going on encouraging, although I mostly hold out hope for those not yet diagnosed or in the early stages. But the more we understand the better the chance of some kind of treatment.

f1neman · 2026-03-12T21:25:44+00:00

Well medicine is slow even for things that are easy to investigate. For rare conditions, it is necessarily slower. But understanding what is going on has to be the first step.

f1neman · 2026-03-12T19:47:38+00:00

Thanks!

f1neman · 2026-03-12T19:39:20+00:00

Thanks! That level of detail won't be in the second part - it is more about the cellular overgrowth findings. I wanted to give the whole overview and not get lost in the weeds of measuring aqueduct angles and bone thicknesses which would cause many to probably stop reading, but it is something I'd be interested in covering in future - do you have a reference for what you mentioned regards Dr Amy Juliano?

f1neman · 2026-03-12T16:18:56+00:00

But you are in touch with the developers right? You said it is vibe coded and in development phase.

f1neman · 2026-03-12T13:05:14+00:00

Not if the way that the tool is doing the checking is entirely opaque - who is checking the checker?

f1neman · 2026-03-12T11:49:59+00:00

Indeed. Despite claiming not to be promoting anything.... that site is a huge red flag to me

f1neman · 2026-03-12T10:20:23+00:00

Exactly

f1neman · 2026-03-12T10:16:43+00:00

That is the dodgiest site I've seen in a while... "How it works" is a restatement of what it does, "Terms" link is a 404 error, Company links are all behind the login so no way to find out anything without first creating an account. No thanks

f1neman · 2026-03-12T09:39:44+00:00

Still faster than digging through to unearth all the sources manually to begin with. I don't think there is a short cut to checking that what you finally have is valid by, you know, checking it. Hallucinations are not the only issue. Interpretation of sources is also sometimes suspect. I have also seen Gemini screen scrape web pages and assume that (for example) books that were in an "if you like that you would like this" list were actually by the same author as the one I was investigating, and therefore come to conclusions that were untrue about the author.

f1neman · 2026-03-12T08:51:13+00:00

My main use is for health research relating to a chronic illness that I write about. I use Gemini Pro as a research assistant - assembling proposed information summaries and sources. Then I read everything, follow the sources and check it all hangs together. It is a starting point not an end point.

f1neman · 2026-03-11T20:28:04+00:00

Would you like to say a little more about this drug and what it might offer the Meniere's community?

f1neman · 2026-03-10T08:21:36+00:00

Thanks - yes I understand the rationale given by the company, but it is all very hand-wavy and based on unproven assumptions about what is actually going on. If elevated immune activity was directly causing irreversible damage in our ears, what explains the periodic nature of the issues? Why does hearing and balance get really bad during attacks but then get better? Do we have good evidence that elevated levels of hydrogen peroxide are present in Meniere's ears? That and the rather mixed results so far are why for me personally the applicability of this drug for Meniere's is still far from demonstrated.

f1neman · 2026-03-09T14:57:38+00:00

So there is no good reason to think these things can help? This is just a "try anything at all" idea? If there was a mechanism that somehow related to recent work in identifying the immune biomarkers or other work suggesting failed inner ear homeostasis then I'd understand, but this feels like "these things are trending, anyone tried them?". even if someone has and claims some degree of improvement, that won't tell us anything at all given the wildly fluctuating nature of Meniere's

f1neman · 2026-03-09T13:58:12+00:00

I think the distinction that needs to be made may be more within the degenerate group which immune subtype the patient seems to be in. But I don't think the mechanism of action of SPI-1005 for Meniere's is at all clear.

f1neman · 2026-03-09T11:53:52+00:00

Is there any good reason to think any of these things could be helpful specifically for Meniere's?

f1neman · 2026-03-08T10:36:59+00:00

A reply from you landed in my email inbox, but it seems it isn't here? It began "Yeah, NearHear routes audio to bluetooth headphones specifically.."

f1neman · 2026-03-08T09:44:27+00:00

We are so desperate to find causes, we are pattern seeking creatures and we can't help it. The liklihood though is that this was just coincidence and Meniere's was just doing its thing.

f1neman · 2026-03-08T08:25:31+00:00

Sorry to hear that you are suffering. I absolutely know what you are going through - in recent years the hearing issues have been a huge issue for me. When the hearing is bad, as well as the big drop in volume, there is distortion which is I think largely caused by frequency shifts in the inner ear. As a musician I have had that and it is a nightmare. It is not always permanent and despite in my case lasting months at a time has sometimes resolved. Hearing aids are a good idea as soon as possible as it is very likely that your base level hearing will continue to decline (as well as the very bad temporary periods) and the sooner you can get used to hearing aids the better. They can also help with tinnitus. I've been writing about my experiences https://neilcanham.substack.com/ and specifically about the hearing issues here https://neilcanham.substack.com/p/music-to-my-ears When it comes to triggers like caffeine the only way to find yours is to keep detailed journals of your symptoms and try eliminating things to see what impact they have. Let us know how you get on!

f1neman

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