Tuesday, August 09, 2016

20 years of tinnitus

I realised today that it's 20 years since my tinnitus first kicked in. 20 years is a long time to put up with anything, and tinnitus is definitely at the higher end of the "what a pain in the arse" scale. What follows is a ramble about how much pain my arse is in. Uh, or something.

Hi, have some tinnitus. No backsies

[20 years ago title card, set to royalty free MIDI music because I'm cheap]

I was going about my business when I first noticed a slight hissing in one of my ears. I didn't listen to loud music; I didn't walk around with headphones jammed on my head. Oh, that's odd, I thought to myself and decided to ignore it as it'd be gone by tomorrow.

Except it wasn't gone, not the day after or the week, or indeed month / year / decade after it either.

The first time I really felt the burn from my newfound companion, tinnitus - some six months after it became clear that it wasn't going away but was "sort of" okay to deal with so eh whatever - was my first venture into a rave club. We're talking mid 90s here, so you're pretty much talking 50ft high bass monster speakers and glow sticks and shit. A fine time was had by all, apart from the part where I woke up the next morning and the vaguely annoying faint hiss had turned into A MASSIVE FUCKING WALL OF SCREECHING HELL WRAPPED AROUND MY HEAD IN BARBED WIRE.

Imagine 10 headphones strapped to your skull, turned up to max volume, and all of them playing the shrieks from C64 / Spectrum loading screens simultaneously. I literally (as in, literally, and not metaphorically) couldn't hear anything outside of the noise, which was slightly terrifying if I'm being honest. You could have jammed your mouth to my ear and screamed at the top of your lungs and I still wouldn't have heard it. It stayed like that for something close to 2 solid days, and I never went to a bass-filled rave again after that.

Meanwhile, the tinnitus settled into a familiar swoosh / hiss / occasional irritating beeping that sounded like someone tapping out Morse code. At any given time, I'd be stuck with 5 to 8 different noises, all at once, permanently, from morning to night. More often than not, it'd be just churning away at a low level in the background but occasionally it'd just ramp right up and stay that way for a few hours. to add to the fun, every now and again a randomly selected ear would pop and go very distant, like you'd been underwater.

So, er, yeah. Great?

Hospital fun

I ended up going to hospital and having brain scans, to be on the safe side. Tinnitus wasn't understood very well at the time, and it was suggested I might have otosclerosis. The doctors claimed that the earbones would fuse together and I'd go stone-cold deaf, yet still continue to hear the tinnitus.

I'm pretty sure you can't hear tinnitus while deaf, but as a young man that was a particularly worrying thing to have suggested to you.

They also gave me a special hearing test, and somehow I scored the absolute highest grade achievable despite having 24/7 surround sound garbage doing its best to drown everything out.

As you might expect, they didn't find a thing and it was pretty much a case of "so you're stuck with years of bullshit. Have fun!"

Downsides of Tinnitus

Well, it's not like there's any benefits but whatever. There is, of course, the obvious inability to hear things properly and a slight tendency to ask people to repeat things. outside of that, though, are the primary tinnitus screw ups:

1) My tinnitus causes peculiar reactions to sound, in that it responds and reacts to certain noises, actually distorting them and causing physical pain along the way.

High notes from a piano or violin section, loudspeaker announcements, screaming children, tinny-sounding televisions, loud engine noises and more besides all do it. Imagine a broken electric keyboard whose higher notes have a fault which causes the sound to suddenly snap and raise to the pitch of a boiling, shrieking kettle - that's sort of what it sounds like.

Of course, if you want to live the real world version of a television channel beeping out swearwords constantly then you may find this to be highly entertaining. The novelty has worn off for me, if I'm being honest.

2) Aeroplane travel is hellish - specifically take off and descent - and I'm one of those people who grope for earplugs the moment I'm seated. I may have stolen yours. I'm sorry.

3) Fatigue is a permanent risk / feature of tinnitus. Most people's response to a pile of noises rattling around their ears 24/7 is to ignore it, or at least tune it out as best they can.

This is actually quite a task.

White noise generators / radios in the background never really worked for me, so the only hill I had left to die on was "blank it out".  There is a certain way of drowning out the noise, but sadly you're always aware that you're dedicating a few % of your overall batteries, constantly, behind the scenes, while buying your food / playing your game / going to the beach / sitting in bed reading / pretty much everything else. You quickly learn to dread the horror of a "nice quiet room" because it most certainly isn't.

Eventually it slowly dripfeeds into the land of "taking its toll", in barely imperceptible ways you can't quite attribute. You get irritable, you lose your appetite, lethargy becomes a way of life and eventually you just say ah, fuck it, and open the eardrum floodgates because listening to 6 different shitty noises simultaneously is better than fighting a permanent battery drain that you'll simply never win.

Then you're stuck observing your wacky collection of unwanted audio intrusions for a few days till you're mentally ready to put them back in their box. I see if I have any new arrivals, or if the old favourites have detuned themselves from my eardrums, or if that one crazy beeping chiptune thing which I'm fairly certain is signals from an invading alien fleet has made a comeback.

I haven't resorted to giving them names, so that's a bonus.

4) The maddeningly indescribable nature of your own personal tinnitus is probably the worst part. empathy is tricky when you can never...quite....describe the sounds you can hear accurately to other people. everyone's tinnitus is different; everybody has a key set of sounds buried in the herd that aggravate them the most.

The simple frustration of never being able to accurately describe your experience to others, no matter how much effort you put in, is hugely annoying. It starts to feel like you're the village idiot telling people about your latest alien abduction along with the six anal probes, and of course it totally happened, honest.

The bulk of tinnitus cases tend to be one fairly common sound - everyone can imagine a hiss, or a whistle. but what happens when your tinnitus is plural and not singular? how do you accurately portray the hell of it? everything I can try to summon, from 8 bit computer loading screens, to freaky alien signals, falls painfully short of the reality.

People can be driven to suicide by the sheer relentlessness of it all, and "I have tinnitus and want to die" is not as uncommon a refrain as you might imagine. Here's a selection of examples of the kind of tinnitus you may end up with:

 

Mine is similar to most of those, but still not quite there.

If you're reading this and don't have it, then this is a good thing. Don't tempt fate by jamming headphones over your ears and cranking them up to the max.

Here and now

My current bugbear is what my tinnitus has currently settled into. The multiple noise racket has been replaced by one insistent, pulsating high pitched hiss. It doesn't stop, is incredibly draining to "tune out" and possesses an enormously annoying feature.

You know when you put a shell to your ear and can hear the combined pulse of the world around you, almost like blood pumping around your system?

That.

It's a non stop, pulsing hiss-train.

I'm actually having to devote time and energy to tune out what sounds like a high volume artist's rendition of the world's worst caffeine high. It even increases in volume should I turn my head to one side, immediately decreasing when I look straight ahead.

Think how many times you turn your head even slightly throughout the day. Protip: it's a lot, unless you're in a neckbrace. As you can imagine, this is not an optimal experience. If you want to sort of simulate it, rapidly wave your hand next to your ear. The sound of the air snapping past is roughly like what the hissing pitch change resembles.

So, you know - whoops?

There's a surprising amount of research around tinnitus these days, but I'm not going to link to any of it as I'm still getting a feel for what's legit and what's the equivalent of Internet purchased viagra which makes your donger turn blue and fall off. With any luck, I won't have to raise a glass to another 20 years of the biggest pain in the arse I can think of, besides an actual pain in the arse.

Number of times I've written "arse" in this blog: four.

Tinnitus: a whole load of arse.


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