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Living With a Chronic, Degenerative Health Condition

It started in my early 20's. There would be days I'd wake up and my right ear would just feel "off". Not something acute, but a noticeable drop in ability to detect particularly low frequencies. It would feel slightly plugged and just sensitive to loud or high-pitched noises, if that makes sense. It would never last more than a couple of days and would routinely right itself. It often co-occurred with other symptoms like allergies or a cold or flu. I chalked it up to a history of inner-ear infections in my youth and I learned to live with it.

In my late 20's it had become more frequent, to the point I actually went to see a specialist, curious about what was going on. At great expense I was subjected to a swathe of tests over 6 hours, looking for every possible issue with my inner ear and vestibular system. The result? Inconclusive. I didn't present with vertigo or balance issues, so they ruled out Meniere's disease. The hearing loss wasn't permanent or degenerative so it wasn't a perilymph fistula. No damage to my middle or outer ear so not a result of trauma or loud noises. The most likely candidate they concluded was transient Eustachian tube malfunction consistent with the co-occurrence with other issues like allergies or cold and flu. They told me to monitor it but that it likely wasn't a huge cause for concern.

In the subsequent 10 years I made a good deal of positive lifestyle changes: I got fit, exercised more, started to eat better. I was still drinking, sometimes heavily, but on the whole I was in generally better health. The ear problems seemed to mostly go away, or at least the symptoms were minimal enough such that they didn't impact my life in a meaningful way. I spent some time in New York City, then relocated to BC, Canada. I got married, celebrated friends' life milestones. Things were mostly good.

2020 changed everything, for everyone, me included. On Jan 2nd I woke up and I thought my right ear was full of water. I couldn't hear much of anything out of it and it simply felt plugged. There was faint tinnitus, but mostly I was in shock at the suddenness of the hearing loss. At that time I didn't have access to a family doctor (public healthcare in BC was and is in a state of shambles), so I rushed to the walk-in clinic. I was given an initial diagnosis of Sudden Sensorineural Hearing Loss (SSHL) and prescribed a hefty dose of Prednisone. What's wild to me, sidebar, is that nobody knows why Prednisone fixes SSHL in like 70% of cases, but it just does. The older I get the more I'm convinced that medicine is just a long line of doctors thinking "fuck it, let's try this and see what happens". Anyways, Prednisone had zero effect on my hearing loss, but the well-documented unpleasant side-effects were no picnic. I also got an audiogram and it showed distinct loss in hearing across the board, but more prevalent in low frequencies in that ear. Within a week or so, the hearing rebounded to around 80% of where it was before. Wait times for specialists were long and COVID threw a monkey wrench in that process; I was penciled in for an ENT appointment mid-June. With our family history of brain cancer and under guidance from my wife's uncle (also an ENT) I went to the ER to get CT scans and MRI's to rule out brain complications and acoustic neuroma respectively; thankfully everything came back negative. Assured that whatever this was was not life-threatening, I settled into the anxiety-riddled wait for my specialist appointment. Things fluctuated over subsequent weeks and I'd have more good time than bad for a few months. The feeling of a full ear never went away, and the tinnitus only increased in intensity.

I don't remember when I had the first vertigo episode, but I remember it being terrifying. Room spinning, wanting to vomit, persistent headache. The only thing I could do was pop Gravol and try to sleep it off. Reminded me of the worst hangover I've ever had without any of the fun beforehand. Over the course of 2020 I had probably 15-20 "attacks". They ranged in intensity from slight unsteadiness on my feet to completely debilitating, reliant on Gravol and sleep to get through. Thankfully the worst of them only lasted 6-8 hours at most, but the mild effects could linger for up to a week. All the while the hearing in my right ear was getting worse every time it fluctuated. Not a good time, panic attacks were common.

My ENT appointment in June was with a gruff old man with the bedside manner of... well a gruff old man. I'd only had one or two minor vertigo episodes by this stage. I was told that my hearing loss to date was likely permanent. He suggested a bunch of tests that could help us diagnose things, but of course, COVID meant that all those types of tests were currently on hold. His early yet tentative diagnosis: Meniere's disease, something that had been ruled out a decade prior. And that was that. In and out in under 5 minutes. They'd call me when the tests were being run again and he'd see me again in 3 months. What. The. Fuck.

So I lived with it. What choice did I have? Things just got progressively worse across 2020. COVID had us all quarantining so life sucked already, and then I had this on top of it. Existential crises were had. Lots of gin was drunk. I had good days, but I had many more bad days. My work suffered. Home life was hard. I probably had depression. It was just generally bad times. My subsequent visits to the ENT only solidified his Meniere's diagnosis, to the point that during our December appointment he suggested not even bothering with the tests. Having done some of my own research (as loaded a phrase as any in 2022) I agreed. Meniere's it was. A disease with no known cause, no known cure and no reliable methods of managing symptoms. A disease that will more than likely result in severe to profound hearing loss in at least one of my ears, possibly complete deafness. It was a lot to process. Christmas was hard.

Coming fresh into 2021 I finally got a family doctor and she has been amazing. She helped me reach the decision to quit drinking. Like altogether, cold-turkey style. Seemed like one of the only factors I could control that might give me a shot at managing this shit and living life on my terms. So I did. Haven't had more than the odd sip of wine at dinner in almost 18 months. And it seems to have helped - a lot. I went from 15-20 bad episodes of vertigo in 2020 to only 2 in 2021. I also started running again, as it seems like, for whatever reason, regular increased blood flow rate has a positive effect on things. I ran a lot, hitting a sub-24-minute 5km for the first time in my life, first sub-1-hour 12km. I started playing cricket and hockey again after COVID subsided. I felt good. More importantly I felt like I was in control of this for the first time. Even a torn meniscus in my good knee which saw me sidelined from activity for 6 months couldn't get me down. I finally also had some drugs prescribed that would blunt the effects of the vertigo episodes (which I still haven't had to use, touch wood). Towards the end of 2021 I was in a much better place.

2022 started well. Hearing loss had stabilized at moderate-severe levels in my bad ear, good ear still going strong. Vertigo episodes were rare and generally quite mild. Life finally seemed to be turning a corner. Then April happened. I awoke one night with sirens going off in my good ear. My left ear. The ear I'd come to rely on over the previous two years. The tinnitus was a scream, throbbing in time with my pulse, generally a sign that an attack was coming. An hour or so later it arrived and was it a doozy. Room spinning, completely debilitated for 8 hours, even simply closing my eyes brought waves of nausea. In the subsequent week I lost the ability to hear low frequencies in my good ear. The hopes I'd had that this would be a unilateral condition were dashed. That I could rely on my left ear to stave off deafness was a silver lining I had desperately clung to - they estimate that only 12-14% of Meniere's cases develop bilaterally after unilateral presentation. I've never been very lucky.

So I got a hearing aid fitted to my bad ear. I'm told when my new shiny one arrives it's tailored to my specific audiogram pattern of hearing loss and will help tremendously. The loaner that I'm currently wearing has already helped a lot. I might need them in both ears. It's hard to say. I'm scheduled for a follow-up specialist appointment next week, someone who deals with rare and difficult cases such as mine. We'll see where it goes. For now I'm trying to stay positive but it's hard. There have been quite a few midnight panic attacks, my wife needing to talk me off the ledge. I also finally got COVID a couple weeks back too so who knows how that's going to affect things. It was a mild case and I'm fully recovered but there's so much unknown in terms of long term outlook and interaction effects with other conditions. I'd be lying if I said I sleep easily when thinking about that. I've explored Apple's accessibility features and the technology has come so very far. I never thought I'd hear music in both ears again but their Headphone Accommodations feature tuned to my exact audiogram results approximates it at least. Shout out to Shopify, my employer who has been incredibly supportive over the last few weeks as things have escalated, it's meant a great deal.

I prioritized the wrong things for a long time and took my health for granted. The prospect of never again hearing the voices of my loved ones, music, the rain on the roof - sobering thoughts. The last few years have been rough and I'm not sure what the future holds. I'm told the chances that I go completely deaf are quite slim and I'm holding onto that. I'm hoping to get some concrete answers next week. I'm also hoping to reconnect with folks, especially those from back home. I feel like I've been lurching from crisis to crisis over the last 5 years without taking time to stop and appreciate things.

Anyways, here's a pic from our recent trip to Iceland, along with the little guy that allowed me to soak in not just the sights but the sounds as well. Here's to better times ahead.

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