My experience with MD so far

I guess it was my late 20s when I started experiencing severe rotary vertigo. I would just put my head down on the desk or get down on a bed or floor and, mostly, I never discussed it, and assumed it was something that can and did happen to everybody sometimes. I figured it was because I was in a calorie deficit or something, I guess. Mostly I didn't keep track or make notes. It's kind of a blur. Definitely did not discuss with a doctor or anything. Probably it wasn't happening that often and definitely I never had the experience others here describe of being put down for days. I think maybe 20 minutes tops.

I'm also noticing that I always hold the phone to my right ear as opposed to ever holding it to my left ear. If I hold it to my left ear, I want to hold it to my right ear instead. I'm not sure why. I guess I must have been starting to realize that I hear better out of my right ear.

Fast forward to, I guess, around my mid-to-late 30s. I'm starting to have obvious problems with communication at work, and maybe I'm starting to realize that it's episodic. At a point where I'm functioning so poorly it's ludicrous, and mind you my job involves taking some phone calls, I do some Internet research about hearing impairment and book an appointment with an ENT. At first I'm at one clinic where an audiologist gives me a once-over and a PA gives me a regimen of oral steroids and a prescription for a hearing aid. The steroids seem to do wonders, I can hear much better, and I consider it case closed. Over time, though, I continue to experience fluctuations.

Next time I'm deep in depression with a severe degradation, I book an appointment with a university hospital affiliated MD ENT who is like an attending / professor type doctor, and she asks some questions, pulls a tuning fork out and starts dinging it in various spots around my head asking whether I can hear it. Says it's Meniere's disease, which is the first I've heard of that. But she refuses to give me the steroids and says take this water pill and cut out salt etc. And get the hearing aids.

They have also been asking about tinnitus and I don't really know what that is but I explain that sometimes it sounds like I'm standing next to a big industrial electrical transformer panel or something. Like an electrical sound. The audiologist calls it "oscillating" sound which isn't exactly what I said but I guess that description resonates enough with me.

I head over to the audiologist and he's like: your left ear is shot, it's un-aidable, the best we can do is bi-cros and explains what bi-cros is. So I get the bi-cros and I do fine for a couple of years. Actually for most of this time I'm not even wearing the HA because I'm really back to doing fairly well.

I do have some questionable habits like smoking etc. and occasionally I'm trying to quit or quitting these for a while. It seems like as soon as I make a move to improve my health from that perspective, boom, that's exactly when the Meniere's clobbers me over the head. Frequently I'm rationalizing what I'm doing just so that I will be able to hear the next day at work. To what extent this is actually connected, I don't know.

Finally there are some severe life events and I am totally abstinent and here comes the Meniere's and it's not letting up. Tinnitus completely off the chart like nothing I've ever experienced. Then it does let up around the same time as I have an audiologist check in. The audiologist says "you're actually right about where you were before, you're pretty stable" but the audiologist is failing to understand that attacks come and go and that I am not having an attack today.

One real improvement is that for the last several years the severe vertigo, with the full-on room spin, it hasn't been happening. Lately during Meniere's attacks I've been getting a lot lighter vertigo - not spinny but sometimes approaching fall-overish, I did fall to the ground once in the past few months, but these attacks last only a few seconds and I'm able to proceed on my way. This part seems a lot better. But the aural fullness, I'm starting to understand what that is. It's pretty constant in my left ear right now. I'm hoping that will go away once the current "episode" relents, if it ever does. It seems these episodes last maybe weeks or a month at a time, then usually some reprieve.

I'm sure hoping to get better rather than worse. I lost my prescription HA a month ago when I was wearing a mask to visit a relative in the hospital and when I came out, I went to rip off my mask and didn't I send my BTE hearing aid flinging somewhere to never be found. Am out of work and also had already used up my Loss & Damage coverage so I was really SOL, heading into job interviews, no chance to hear... so I used my last dollars to buy OTC HAs with self-fitting, which did seem to work somewhat but were really conspicuous, like big old fashioned earbuds. So I got a right-only used HA of the same brand that I had prescription from eBay but it absolutely did not help, heard better without it. Programmed for somebody else. Found some other forum to get the Genie software and the Noahlink device and managed to reprogram my HA by inputting my audiogram that I had, but who knows if I did it even close to right. Prayed to God for help getting through interviews and with His help managed to complete some interviews and am hopefully a day or two away from getting a formal job offer and medical insurance.

It's probably going to be "surprise surprise" when I get to this job, if I do land it, I expect that I will either have to figure out a captioning solution myself or ask them to provide one if it's a standard office phone. I've been relying a TON on CaptionCall specifically, as well as Teams captioning for interviews and sometimes Ava. The company does not realize I've been using captioning to get the job. Really hoping this current episode will subside as I'm heading back to work and I will have a good spell, can sign up for FSA to get an up-front boost to replace these HA, and go from there.

I don't know if I have one-sided or two-sided Meniere's and the right side is just running behind schedule. My hearing overall does fluctuate along with my Meniere's episodes and I know my left is not contributing much at all to my hearing, so it must be my right that's fluctuating mostly with the episodes now.

I cannot even locate / place sounds and usually am turning the wrong direction looking to find people after hearing them. Sometimes I have to check every room of the house, where am I being called from?

If this disease takes my hearing in my right ear too will I at least be able to get a cochlear implant or something? I think I would gladly take anything that puts me back onto a steady path that's not deteriorating.

Is the severe bad vertigo apt to come back if the disease starts chewing through my right ear? Coincidentally I did not have a license or drive in my 20s so that concern wasn't an aspect of it. But now I do have a license and want to drive. The kind of vertigo I was getting in my 20s I have to assume one would crash the car immediately upon it hitting. The very light vertigo that I get now, I can just brace myself and pull the car over.

Anyhow, that's been my experience so far. Hope somebody can relate to it & if you want to welcome or add your 2 cents feedback, please do.