What My Vertigo Feels Like as a Person With Meniere’s Disease
Vertigo is such a tricky thing to explain if you’ve never experienced it. Combine it with all the other goodies that come with Meniere’s disease — like ringing and buzzing in the ears, ear fullness and hearing loss — and it’s even harder for people to understand.
How do you try to explain how something feels if the person you’re explaining to has never felt it? I describe some of my symptoms as wearing a pair of noise-canceling headphones that are playing a high-pitched squeal in one ear and white noise in the other — all day long, sometimes fluctuating in volume, but always lingering.
Vertigo is a whole other story. Often, when people find out that I get weekly or daily episodes of vertigo, they respond with something like “I get dizzy sometimes, too.” I nod and smile, cringing on the inside because “getting dizzy” is so far from the violent, seemingly endless vertigo that I can experience for hours at a time. So, in an attempt to put it into some bit of perspective …
Sit in the dark. Imagine you’re a child again. You’re on the merry-go-round at the park. Only you didn’t choose to get onto it. In fact, you were thrown onto it mid-conversation. It’s taken about 10 rotations, and you’ve just reached the point where your stomach is turning and you want to get off.
Now imagine you can’t get off.
Your friend is spinning the merry-go-round. They might get tired and slow down for a little bit, but soon enough they will reenergize and give a big push. You won’t be ready. You’ve let go of the railings, so you can bury your head in your knees to calm your stomach. So the push jolts you and jerks you to the side of the merry-go-round. You almost fall off — your stomach drops and you are convinced you’re falling 1,000 feet down. But then your friend decides to push in the other direction, and you’re jolted back into the middle as the spinning gets faster and faster. You begin to get used to the rhythm of the spinning. It almost becomes comforting. Round and round and round and round.
The pattern becomes predictable in a relaxing sort of way. Your stomach calms just enough for you to let go of the thought of your last meal coming up. So you lift your head just a little and decide to peek out. But your eyes dart back and forth, unable to focus. You pick a tree in the distance to fix your gaze on, but with each rotation of the merry-go-round, it becomes harder and harder, and your eyes begin to create the illusion that the tree is no longer there — that you are spinning too fast to even find it. You close your eyes and again bury your head in your knees, gripping the rail with all the strength you have, which isn’t much against the centrifugal force overpowering you.
As the merry-go-round slows and speeds up and slows and speeds up, your ears begin to fill as if you are on an airplane during take-off. The pressure builds and builds until you feel as if a river of water should start rushing out of both ears. A dull stabbing pain begins deep in your ears, alternating between matching the rhythm of your heartbeat and the pattern of the merry-go-round spins. It is as if someone is trying to clean your ears with a Q-tip while the ride spins, so they accidentally go a little too far and hit your eardrums with each rotation.
Noises in the background become muffled. A soft ringing slowly builds in one ear and then jolts to the other. It gets louder and sharper until all you hear is a constant shriek darting between ears. Sometimes it fills both ears at once and the rest of the world, with your eyes and ears now preoccupied, becomes distant.
Your friend jumps on after giving the merry-go-round a good push. They try to talk to you, but all you hear is muffled notes in place of words. You try to look at them, but when your eyes open, they convince your brain that you’ve just done a backwards somersault off a cliff. You snap them shut and hold on as you dive down, your stomach jumping up into your chest, the pressure building in your head and the ringing getting even louder as you tumble further. Your friend jumps back off and resumes the rhythmic spinning of the merry-go-round. They continue to push it as you fall back into the pattern.
You get so relaxed into the rhythm again that you let go of the rail and begin to slide toward the edge of the merry-go-round. Your friend notices and jolts the ride into the opposite direction. You crash back into the middle and grab the railing again. Soon enough, you fall into the rhythm — slide, jolt, repeat. Sometimes, you might scratch the metal beneath you or touch the railing just to make sure you’re not floating away. Just to make sure you still know where you are.
You might fall so deeply into the rhythm that you forget how miserable you are. But every now and then, your friend will change directions for a little jolt to remind you.
Eventually, after minutes or hours — it’s impossible for you to tell at this point — you feel the ride start to slow. The ringing in your ears starts to gradually fade into a less alarming pitch, though the sound still lingers. You try to open your eyes, able to fix your gaze on your friend, moving with the rotation of the merry-go-round. As you keep focusing on them, you’re able to gain perspective again. You’re able to quietly mutter to them to stop the ride. And they notice. They start to walk alongside the merry-go-round, still rotating it, but at a much slower pace. Your eyes try to dart away from them with each rotation, but if you can stay fixed on them, the world behind them slows down just enough. You slide to the edge, confident that you will be able to get off now.
Two feet on the ground, you push yourself up from the cold metal surface of the merry-go-round. Your legs have forgotten what it’s like to walk on land. Your knees buckle beneath you, but you catch yourself. Your friend speaks to you, but just as your legs think they are at sea, so do your ears think you’re under water. Their voice is muffled, but their face is coming into focus. They lower you to the ground, and you push your hands into the sand to support the weight of your body.
It feels as if you’ve just run a marathon — in the desert — after being jet-lagged from an eight-hour international flight. Every muscle in your body is so tense and aching from holding up your weight in the most epic battle against gravity. The hot, hard sand is not a comfortable surface to collapse onto after such a feat, but at least it isn’t moving.
Now imagine repeating this almost every day — sometimes the moment your alarm goes off, sometimes in the middle of a bite of your lunch or as your boss is starting an important meeting, sometimes as you close your eyes to go to sleep. This is my reality as a person with Meniere’s disease. And in a world where even my closest family and friends don’t understand what it feels like, this is my attempt at bringing everyone along to take a walk in my ears.
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