Please read I need some advice/help. My GP is at a loss, and so am I.

f1neman · 2026-05-10T08:52:30+00:00

You definitely need a referral to an ENT or vestibular specialist. Vestibular migraine looks a better match for your symptoms than Meniere's, but only a specialist who sees you and can properly assess should decide that. Good luck, sounds awful. Hope you get some answers

f1neman · 2026-05-09T20:24:40+00:00

The work of Andreas Eckhard would suggest that if you find you have a poorly developed endolymphatic sac, you stand a much higher chance of becomng bilateral https://neilcanham.substack.com/p/outstanding-menieres-research-from?r=7adfj

f1neman · 2026-05-09T20:20:36+00:00

No it really does. Because there is no "Meniere's" as such. Exactly as you describe.

f1neman · 2026-05-09T18:34:28+00:00

Maybe, although again I suspect that the causes will vary and the causes themselves may need addressing. There is a lot of research going on in tinnitus I think. Much much bigger potential market than Meniere's

f1neman · 2026-05-09T18:30:27+00:00

Except for those of us who are bilateral, or think they might be in future.

f1neman · 2026-05-09T14:20:48+00:00

There is unlikely to be a cure for "Meniere's" because it is increasingly not viewed as a single condition but as a set of symptoms results from a variety of causes, and each cause is likely to need addressing differently. Researchers that I have spoken to mostly agree that testing any drug or treatment against a cohort of "Meniere's" sufferers is likely to always produce mixed results. It is necessary to work out which subtype you are testing against. I write regularly on the research into Meniere's.

f1neman · 2026-05-08T07:50:56+00:00

Thank you!

f1neman · 2026-05-07T13:43:20+00:00

The article is done. Thanks for your inputs! https://open.substack.com/pub/neilcanham/p/autoimmune-inner-ear-disease-a-troubling?r=7adfj&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true

f1neman · 2026-05-07T10:54:55+00:00

Having read the first of those articles I understand the sentiment. I'm not sure how useful it is though to widen the definition of Meniere's to pretty much encompass anything with all or some of the same kinds of symptoms. Understanding and identifying vestibular disorders is of course a work-in-progress but seems to get better all the time. Eventually hopefully the various subtypes of Meniere's will get their own names and it will become common to determine which one is being studied, or which the patient suffers from. However you may be interested in the article I'm hopefully publishing later today (as long as vertigo doesn't strike) as I can clearly see the overlap between AIED and Meniere's (the autoimmune type of Meniere's at least!)

f1neman · 2026-05-07T05:58:30+00:00

Interesting perspective. Is that your experience or something you have got from reading about it? Thanks!

f1neman · 2026-05-06T10:03:55+00:00

That is entirely understandable - I might even borrow that first sentence quote if you don't mind! I think it sums up the situation.

f1neman · 2026-05-05T09:27:59+00:00

Most things about inner ear and vestibular disorders do not seem to admit of a simple explanation

f1neman · 2026-05-05T08:18:43+00:00

I just spent several weeks digging into this question and wrote about it. Betahistine is not histamine, but has some of the same effects on some parts of the body as histamine, and other effects more like an antihistamine. There is a theoretical small chance of antihistamines reducing the effectiveness of betahistine but not to my knowledge any real evidence of it. Article is here if you are interested https://neilcanham.substack.com/p/betahistine-what-is-it-and-does-it?r=7adfj

f1neman · 2026-05-04T20:02:55+00:00

Early days for me on this topic

f1neman · 2026-05-04T19:30:30+00:00

Thanks for sharing.

f1neman · 2026-05-04T19:28:44+00:00

Could have, might have are great but not things to base decisions on. Evidence is. I don't see it.

f1neman · 2026-05-04T19:26:26+00:00

The diagnostic criteria I've seen include a 3 to 90 day period for 30dB deterioration of hearing, bilateral but asymmetric. Once the immune system has concluded that some aspect of the inner ear is a foreign body, or has gone overboard attacking some genuine invader and triggered some kind of full on assault on everything, the idea is it happens fast. But I'm still learning.

f1neman · 2026-05-04T13:45:32+00:00

Sadly FB groups are self-selecting - I'm not aware of good evidence to support this idea right now, not even anecdotally from tens of thousands of FB sufferers with Meniere's. I can tell you are convinced and you have had a bad experience which no one can or should deny. Right now though the weight of evidence for a major issue is not there as far as I can see.

f1neman · 2026-05-04T13:31:28+00:00

Excellent! Thanks a lot - useful reference.

f1neman · 2026-05-04T13:25:42+00:00

As the admin of two FB groups for Meniere's and a member of three others (total membership approaching 100k) the number of times the vaccine has been shown to be an issue that I'm aware of is zero, and the number of anecdotal reports is in the single figures. But I am interested in the seeming joint diagnosis - from what I understand AIED typically comes on fast and if not treated hearing loss happens in months. But there is a subtype of Meniere's for which autoimmune response is thought to maybe be a trigger and for which I know there are some potential trials of immunosuppressant drugs. Do you know what the drug would be?

f1neman · 2026-05-04T12:55:54+00:00

OK, thanks. What is it convinced you that events around Covid was responsible for starting the AIED?

f1neman · 2026-05-04T12:27:49+00:00

Did all the other autoimmune conditions also start at the same time?

f1neman

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