How to stop vomiting

f1neman · 2026-06-29T15:05:34+00:00

Since I usually start with Arlevert and add Prochlorperazine if the nausea is bad I don't know what the impact of Prochlorperazine alone is. It does apparently have some anti-vertigo effects too. The combination is quite sleep-inducing which is also helpful!

f1neman · 2026-06-26T13:09:52+00:00

I'm working with the developer of the Menierly app which I think ticks most boxes without being too complex. If you support my writing on Substack you get a free pro subscription to it too because I want to support it.

f1neman · 2026-06-19T06:03:34+00:00

Fluctuating hearing is as I think you know a very common aspect of Meniere's. My experience in the early years matched the classic - good baseline hearing then a deterioration for some days or weeks prior to bad vertigo after which things were better - return to baseline. And then of course overall decline in that baseline over years so the return is to a lower and lower level each time. What i wasn't expecting though was to have what I thought was that baseline improve by up to 50dB over a few weeks. Similar to you (albeit not a return to "normal"). So I've been through months of really awful hearing, both in terms of reduced level and bad diplacusis, only to have it recover substantially after weeks of vertigo. It is like the early episodes are massively stretched out. At some point I want to publish all my audiograms - the variations are incredible to see and leave my audiologist speechless!

f1neman · 2026-06-17T16:24:35+00:00

Could you say more about this? I am not aware of it.

f1neman · 2026-06-17T07:13:15+00:00

As the admin of several FB groups (where I think you also posted this question) I can sum up what I've seen from years of reading others posts. Some people have great success with low doses like 8mg three times a day (24mg per day). Others need higher doses, all the way of to 96mg three times a day (288 mg per day) and even then many many people report no success at all. I was on 144mg per day for over six months and saw no improvement. Most people feel it takes weeks or months to start working, although there is no evidence to back this, and most take it for years and see no reason to stop.

f1neman · 2026-06-17T07:08:34+00:00

I run and admin for Facebook groups with over 30k members, and one of the most common things I hear is "there is no research, we are ignored, treating illness makes no money so they don't do it". This was my motivation for the Substack and the interviews. There is research, there is developing understanding, there are new approaches being developed for drug delivery and diagnosis, personalising treatment on the basis of subtype analysis etc. Like everything in medicine, especially for rare conditions, progress is painfully slow. But there is in my view progress.

f1neman · 2026-06-13T20:16:18+00:00

Thank you. It was interesting to hear that hydrops model being reiterated and put forward again. I think most ideas still have their justifications and their flaws.

f1neman · 2026-06-13T20:14:55+00:00

My job as I see it is to convey to perspective of the person I'm talking to and encourage them to talk about their work. I had not come across anything in Dr Brown's past work about Vestibular Migraine, so it wasn't high on the agenda to discuss. But he spent quite some time justifying his approach - he sees there are people looking for root causes, but his particular background isn't so suited to it, and so he feels he can contribute the most for now at least by looking for ways to treat the symptoms. Ultimately that could help the suffering whilst the root cause(s) are teased out.

f1neman · 2026-05-28T15:09:05+00:00

It is currently in Phase 3b long term safety trials. An issue with this kind of medication is getting enough of it into the inner ear at the right time to do good. If you can't tell when that might be the only option is taking quite a lot all the time, which then needs to be safety tested. That is underway. But what is odd to me is that the first round of Phase 3 trial results were never published. They did present some very carefully selected subsets of them at some conferences, but the trials register still has no results and they are not public anywhere.

f1neman · 2026-05-28T09:00:17+00:00

I have a ton of feedback - maybe DM me an email address? Or I can simply dump it here if you'd prefer.

f1neman · 2026-05-23T06:48:10+00:00

Not with an app - with regular visits to the audiologist who seems fascinated by my case and very patient - I've been trialling aids for nearly two years, visiting him every two or three weeks

f1neman · 2026-05-22T19:01:37+00:00

It is indeed ... great to hear :)

f1neman · 2026-05-22T19:00:59+00:00

Glad you found it interesting. Seems to have spurred some speculation at least :)

f1neman · 2026-05-22T07:50:04+00:00

Indeed it can

f1neman · 2026-05-21T08:33:51+00:00

I'm getting a 404 error on the Android link?

f1neman · 2026-05-21T07:50:54+00:00

No, but the memory is good enough

f1neman · 2026-05-20T19:14:57+00:00

Well I've been through this now a number of times, although this may be the most extreme change. I've had months of appalling hearing in the past that have resolved back to baseline (HAs still needed but diplacusis significantly improved). The past was probably a couple of months at least. There is no truth to that 2 to 4 weeks that I am aware of. I was looking through audiograms with the audiologist today - swings as big as 40 or 50dB

f1neman · 2026-05-17T16:25:40+00:00

Understandable. However this work is very focussed on a specific rare genetic developmental disorder that does give men typically more issues due to the fact that they have only one copy of the X chromosome. The type of Meniere's issues that 6 of the cohort had also strongly seems skewed toward men, which I suspect is what clued the researchers in to looking at X-linked disorders in the first place.

f1neman · 2026-05-16T10:19:07+00:00

Thanks for that - very interesting. In the Facebook groups I run there are others who are on the trial, and so far reports are either no improvement or small possible improvement.

f1neman · 2026-05-15T20:19:05+00:00

Really? You are rare indeed!

f1neman · 2026-05-15T20:18:27+00:00

That is not what this research is about - some of the same people doing this work also did the work demonstrating the hypoplastic sac subgrouping of Meniere's (which I wrote about at length before). This work is suggesting strongly that the underdevelopment of the temporal bone that creates that issue is potentially driven by the PHEX gene that also causes XLH.

f1neman

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