So, I don’t have tinnitus as in a ringing in the ears (though, strangely, I did for about two hours this Sunday. I woke up with it. I think everyone gets bouts of it for ten minutes or so, but this took a few hours to shift).
Anyway, back to what I was saying. Though I have never had chronic ringing tinnitus, about five years ago I woke up one day with the sound of someone tapping a drum in my ears. Both ears. But not in rhythm. Just a random pattern of beats every ½ second to a second. Loud.
Absolutely nothing stopped it, and it was all day and all night. I went to various doctors about it, was referred to ENT and various experts. I had something called Tensor Timpani syndrome. Essentially it’s a spasmodic contraction of the tensor timpani muscle in the ear. You know when you get a twitchy eyelid? Well it’s that, but in the muscle that controls the eardrum, and it makes and audible drum beat every time it spasms, and mine affected both ears every .5 seconds or thereabouts.
And I couldn’t hear. Just these constant from beats. I can’t lie. I had dark thoughts. I did stupid things to try and stop it. I considered purposefully rupturing my own eardrums. I considered ways to make myself deaf. Maybe just in one ear to halve the noise and sensation.
At one point via the ENT I was sent to a specialist as the syndrome is rare and nobody really deals with it, and honestly I thought that this was it. Maybe I was going to finally get this help.
I travelled to the offices and the expert say down and talked with me about it, and I started crying because I was in such a mess by this point, and she said she could help. And honestly I could have kissed her. The relief was amazing to actually be offered help.
Then she pulled out a paper plate.
And she started drawing on the paper plate. Some shapes. She asked if I knew what they were. It kind of looked like sausages and egg? Yes, it was a fried breakfast. Now, apparently to most people this represented something wonderful, a fried breakfast. But imagine a vegetarian (imagine!) to them, this might be a horrific sight, because it represented something that they were morally against. Here, watch her draw another squiggle. Bacon! Yum bacon, or urgh, bacon! The same thing, re-framed through two people’s beliefs. And can I now understand that different people experience things differently because of their beliefs, and how can I apply this to the fact that you are having to shout this at me because I can’t hear you over the constant deafening banging of my own eardrums? Do you see? Do you understand.
I think I was blinking away tears by this point. Then she reached into a drawer and fished out a foam hand. Not a giant fun one like in Gladiators, but a flat floppy bright pink one. Here, she says. Each day I should wake up and use the fingers of this foam hand to count five things I’m grateful for in my life. Then she stood up, I thought to see me out, but no, to hug me. Then she showed me out of the room.
I went to the waiting area where Russell and Darwin were sitting surrounded by models of the inner ear, and just laughed. I laughed and laughed as Russell asked what help I was going to get and was I better now or was it something I’d have to return for. Then I got to the car and told him, and I cried the entire way home.
One day, during Covid, a couple of years later, I woke up and it had stopped.
I’ve had returning bouts of it since then, but shorter.
I don’t envy anyone with tinnitus. It ruined me. But I have so much respect for those who live with and manage their condition better than I did.
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