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How Vertigo Affected Far More Than Just My Hearing

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In hindsight, Menière’s disease had been riding alongside me for months. Yet each time vertigo hit, my hearing disappeared and a great fog came between me and the rest of the world. I could continue with my life within seconds and I forgot about what had just happened – until December 2014, when vertigo made sure I did not forget it ever again.

The lead up to the Big Event is still, even two and a half years later, rather fuzzy to me. There had been weeks of ear infections, or infections of the vestibular system. There was also a flu. I think. Maybe it had been Menière’s disease the whole time. Or was it in fact all just a virus? To this day, no one knows.

What I do know is that during a four-hour train ride home two weeks before Christmas, my ear clogged up. I thought it was air pressure. Which was strange, because it had never been an issue for me on a train before. But at that moment I didn’t think anything of it. Until I asked my dad sitting next to me about an hour later if he was experiencing the change in air pressure in his ears too. I’ll never forget the look he gave me when I told him I couldn’t hear anything in one ear. Something was very wrong indeed.

When I stood up to get off the train I knew there definitely was. I could hardly walk down the aisle, get off the train and cross the platform towards the connecting train. My balance was completely gone. To this day I have no idea how I made it through that harrowing hour of the world spinning endlessly around me and me being utterly confused as to what was happening to me.

That train ride marked the beginning of a fortnight of misery that left its mark to this day. At one point, as I was lying in bed exactly a week later, being deaf in one ear and my brain utterly confused about the new way sound reached it, with the world still spinning and having to be held firmly as I did my business on a bucket next to my bed, I knew for sure this tale was going to end with me in the hospital. It didn’t, but recounting how scared I was at that time makes the emotions wash back over me.

I knew things were really quite bad when the next day, two days before Christmas, a doctor came to our home and tested me for a stroke. I hadn’t had one, but the severity with which the doctor treated me made a lasting impression. The next few days the endless vertigo was joined by relentless “whirls” as I call them, where it feels as if someone pulls a cord at the back of my eye socket and makes my entire head just momentarily travel to another dimension and back while my body is left behind. It’s as unpleasant as it sounds. I had a countless number of these whirls each day for another two weeks. If I turned my head even slightly: whirl. If I shifted in my seat: whirl. If I shifted my gaze at the wall a centimeter to the left: whirl. It took another week before I could handle sound and another before I could sort of handle still-camera shows and be distracted slightly from the misery I found myself in.

All that time I had hardly seen a soul. Mum was my caregiver, but even her presence made my head spin and whirl so I often had to ask her to leave even though I didn’t want her to. A dear friend came by, but I couldn’t talk, I couldn’t even really look her in the eye: hello, spin and whirl! The loneliness and guilt towards family and friends I experienced in those weeks was soul-crushing and would be a nasty companion during the following years.

Once I was able to walk around again without needing support, my vestibular system was tested in the hospital. The results were positive: there had been no lasting effects on my balance. The severity of my vertigo made that a pretty miraculous outcome. To this day I consider myself lucky. In the next few weeks, even my hearing came back partially. A year later when it became clear it wasn’t going to come back completely, I started wearing a hearing aid. It lasted a year. Then miraculously, six months ago, it again got slightly better and I haven’t needed to wear it since.

What is lasting though is permanent tinnitus, pressure in and fullness of my ear, a persistent buzzing in my brain that makes concentrating quite difficult and occasional vertigo. Those episodes have not been as violent as the one during that December/January period, but each time my head does a whirl, panic ensues. Grand panic.

Three months after that infamous train ride, I went back to work. A month or so in, I had another (minor in comparison) episode of vertigo behind my desk. I swayed across the busy road in front of my work building and waited to be picked up as the world around me spun and cars rattled passed me.

The next day, I quit and a very dark period started.

It’s always easy to draw conclusion afterwards, but the way anxiety got a hold of me in that period is proof to me how our brains make up realities we can believe without hesitation or doubt. I knew from that moment on I could never work or travel again. I was absolutely sure that when I would try to, I would again end up in bed, all alone, become completely deaf and be completely dependent on caregivers – this time for good. So I kept to my home. My home where every nook and cranny had an association to that nasty period I was trying to avoid happening again. My bed, my desk, the bathroom across the hall, the couch downstairs, the ceiling above my bed. Everything reminded me of the toughest period of my life.

For over a year, I struggled. I hardly left my home, afraid a car ride would trigger vertigo. The thought of going out on my own terrified me even more. Each tremor in my vision, each increase in tinnitus, each cold made me fear another severe episode of Menière’s was imminent. Doctors didn’t have any answers, which only made my fear grow.

I had several panic attacks a day. When waking up, I thought the ceiling moved. When brushing my teeth, my ear popped. When watching TV, the car speeding up on the screen made my head do a barely noticeable whirl. Every day I was afraid I would end up back in my bed – this time for the rest of my life. I was on high alert every second of every day.

In my mind, this was a completely rational fear. Even to this day I find it difficult to contradict that thought. So I tried everything to avoid an episode. I hardly went out, I didn’t watch action films or shows with a shaky camera, I didn’t listen to music. Each time vertigo did hit – even if it was just for a couple of hours – a panic attack followed that lasted as long as the vertigo did plus the extra time I feared it would come back. I wasn’t myself anymore and I hated what I, and my life, had become. I had been chronically ill for 12 years with chronic fatigue syndrome and thyroid problems, but nothing had prepared me for Menière’s disease.

Then came September of last year. I was so sick of being sad that I went online and did a search on illness and depression. My findings were the start of my mental recovery. I read a scientific excerpt that said many patients with Menière’s disease dealt with symptoms similar to that of post-traumatic stress. It was an eye-opener. Suddenly everything fell into place. I didn’t have a rational fear of vertigo, it was anxiety. My anxious thoughts weren’t rational, they were panic attacks. Anxiety had taken over my entire life. I thought this was great news, because now I could perhaps get help for it.

I immediately sought a therapist. I underwent a therapy called EMDR (eye movement desensitization and reprocessing) which cured me of the negative associations I still had with objects and places in my own home, reducing my daily panic attacks drastically and consequently giving me more energy – which helped with my chronic fatigue syndrome symptoms too. I realized that what I had come to associate with an imminent Menière’s episode were symptoms caused by it, but by no means triggers. I still have my moments when I am so tired I am less able to defeat my negative thoughts or take the steps I need to take, but overall, the currently small change already feels huge and rather miraculous. Less anxiety to me means a clearer mind to distinguish fact from self-invented fiction and, as a bonus, more energy.

Sure, there is still a pretty good chance I’ll one day get vertigo again. But in the meantime I still have to try to live my life without this debilitating anxiety. Of course there are still those other chronic illnesses to contend with too and anxiety is a persistent beast, but I am in the process of overcoming my fear of vertigo baby step by baby step. I’ve even made plans that involve getting on a plane again in exactly one year. Something I genuinely thought I could physically never do again. But now I know I actually can. So here I am, planning and dreaming again when I did neither for two years. It feels marvelous.

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Thinkstock photo via ClaudioVentrella.

Originally published: May 18, 2017
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