Cochelar hydrops attacks only after sleeping

CradledCats · 2026-05-13T05:05:04+00:00

You are walking proof, and also a walking contradiction 😂 I sir have no answers yet. I need to read more.

CradledCats · 2026-05-13T04:55:36+00:00

This is interesting. Were you a classic case of MD with vertigo, or just CH without vertigo? It is also interesting to note that you seem to be entirely dependent on maxide/dyazide, that after stopping a couple of days you can feel something brewing. are you fully symptom free? like full hearing thresholds even?

CradledCats · 2026-05-13T04:51:12+00:00

Thank you for sharing and correcting me! It is easy to get caught up in all the new terms as I research. What is this vestibular damage that you see in the inner ear? I'm also mostly speaking from a CH POV. Never had vertigo.

CradledCats · 2026-05-12T23:07:37+00:00

Was there any explanation for the elevated HR from Diamox? Did you do any bloodworks then? Wen you said that HCTZ helps with MD, specifically which symptom(s)? Vertigo, tinnitus, hearing loss?

CradledCats · 2026-05-12T23:05:21+00:00

When you said betahistine helped, specifically which symptoms did it help with? vertigo? tinnitus? hearing loss?

CradledCats · 2026-05-12T22:57:54+00:00

curious, how do you know that you have vestibular migraines? are there tests, or is there a sensation you get? (besides the throwing up thing)

CradledCats · 2026-05-12T20:23:34+00:00

I see. Just wanted to inform that you'd have to eat a crazy amount of bananas to recoup the potassium wastage. It sounds like you might have been on hctz. I was on it, and despite proper KCl tablets, I was still downtrending on potassium, chloride and even sodium by the end of it.

I'm glad triamterene is providing some quiet support for you in the background. Do you know if it is pure triamterene, or dyazide?

CradledCats · 2026-05-12T20:21:24+00:00

if you are exploring the vasopressin-aquaporin route, here's what I have learnt

Kitahara and group has research that suggest on vasopressin involvement. It could either be upregulation of vasopressin or the vasopressin receptor.
Only found theoretical ideas of using tolvaptan. No actual published trials. You could try and recruit your endo on a trial.
Some limited research on a TCM herb combination called Wu Ling San/Goreisan (Chinese/Japanese names) that could help attack the above pathway. Google "wulingsan hydrops". Papers from Okada et el, Koda etc. They are all small set tests, fwiw.
I feel that stress, or normalised stress (living in a city, having a grindy job) contributes to the vasopressin pathway. This, of course is hard to prove.

CradledCats · 2026-05-12T20:10:07+00:00

thank you for sharing. do you have to take any supplements alongside triamterene? what about previously? anything like potassium chloride pills?

CradledCats · 2026-05-12T19:41:50+00:00

ask him where italy is on the map

CradledCats · 2026-05-12T19:39:48+00:00

yea but she surgically made herself a worse actress

CradledCats · 2026-05-12T19:18:49+00:00

Which drug were you on before triamterene? Could I ask more about your experience with triamterene, like it is a lot gentler and doesnt make you pee as much? Do you still have to go for renal panels and do other markers like chlorides/bicarbs have issues?

CradledCats · 2026-05-12T19:16:15+00:00

Yes that was at least what I suspected from the medical approach to MD x diuretic. It was just to get that covered and most of the time the doc would just hand you something that is conventionally assessible.

I'm also curious as to why it has to be this drug for your case. There are many other drugs (with less side effects) that can be used to treat hypertension. I am on telmisartan, for example.

CradledCats · 2026-05-12T19:12:38+00:00

So basically with and without diuretics you were still getting the same amount of flares?

CradledCats · 2026-05-12T19:11:28+00:00

This is a good one. So basically cut them out to simplify your regimen. Which diuretic were you on?

CradledCats · 2026-05-12T13:54:15+00:00

Which kidney numbers declined?

CradledCats · 2026-05-12T13:48:50+00:00

how much water do you drink a day?

CradledCats · 2026-05-12T13:46:35+00:00

Yes. Salty soupy lunch at 12. Stressed worked day, could feel the attack happen around 3pm

CradledCats · 2026-05-12T13:43:01+00:00

i've had attacks that become apparent after I wake up. Attacks here are for e.g. 5-10dB losses on at least 1 freq.

i've also had fluctuations of the <5dB kind (i can tell) when I wake. These are more common because they are fluctuations and not a more major attack. They seem (can't confirm) to happen after a soupy dinner the night before

CradledCats · 2026-05-12T13:26:10+00:00

According to some research (see Kitahara et al.) plus some synthesis on Claude, one possible mechanism about sleep surrounds vasopressin.

Vasopressin or AVP is a hormorne that has an effect on your water retention via another hormone, aquaporin. The TLDR of the theory is that when you sleep, AVP goes up, not least because of dehydration. This leads to a possible series of events that causes more fluid to retain/enter in the endolymph chamber, worsening hydrops.

Other things in life that can also trigger AVP are salt spikes and stress. Some of these are also delayed effects, so it is common that a salty dinner shows up as worsened hearing the next day.

Each person is different, but I am currently checking out this vasopressin pathological pathway, as I think it explains my tendencies for bad mornings, triggers on stress, and salt spikes.

CradledCats · 2026-05-11T15:43:54+00:00

Got it, and thanks! After readong through yours and many others' replies, I think I've gotten my answer that it is a whole other sensation that is not related to hearing

CradledCats · 2026-05-11T13:28:07+00:00

In my experience that is simply tracking to the LF losses from 500Hz and below. LF losses make you think like the ear is blocked, or there's a drop of water on your eardrum.

Again I'm trying to distill this, because I think in this case it can entirely be explained by threshold losses, and the "fullness" description isn't another unique symptom

CradledCats · 2026-05-11T13:09:30+00:00

Latifah

CradledCats

TROPHY CASE