Stop Catastrophizing Your Catastrophe
Instead of helping me, many doctors minimized and misinterpreted my debilitating and constant vertigo.
Do you know what your worst fear is? Take a moment and think about it.
Okay, time’s up. What was it? The loss of a loved one? Being made homeless? Perhaps losing a limb, or being surprised by a shark in the sea? It doesn’t really matter, of course. Not many people have their ultimate, number one, lifelong fear realized out of the blue, for one very simple reason: what is the ultimate horror for one person is probably not the same for another, and it takes a particularly cruel twist of fate to experience your own personal Hell in real life, exactly as you’d imagined it.
But what happens when you do?
When I was a little girl, perhaps nine or ten, I read an article in a newspaper about a woman who’d been dizzy for over twenty years. I can’t remember her name, but I remember her story. One day, she got on a speedboat during a day out with her family, but when she set foot back on solid ground, she still felt as though she was at sea. A constant sense of motion, rocking and swaying, for over twenty years. It had ruined her life, and the doctors couldn’t help. Mal de Débarquement Syndrome, the newspaper said. An extreme case, certainly, but I still remember my horror for her as though it were yesterday.
Sitting at the kitchen table wearing a fluffy pink dressing gown, I read the story through three times, my Rice Krispies turning to mush in their bowl as a sense of overwhelming dread settled in my stomach. The horizon constantly moving, vision jumping and turning, the floor like sponge beneath your feet, and no respite — ever. No peace with eyes closed or open, no quiet moments, and no escape, even in sleep. It was at that moment I learnt that my worst fear could become a reality, and I’ve never quite got over it.
Chronic imbalance is a strange worst fear for anyone to have, let alone for a child, but that’s because vertigo is more of a metaphor than an illness to most people. The thing is, I’ve never had the luxury of thinking of it in the abstract. For me, vertigo is a condition of my existence and has been since I was born. I wasn’t surprised that the doctors couldn’t help the woman in the newspaper, because they’d never been able to help me, either. But the knowledge that my condition could be even more debilitating than it already was, was something I hadn’t properly appreciated yet.
The first medical mystery
The episodes happened every 10–12 weeks from the moment I was born. When I got older, I was able to describe what they felt like, but that didn’t help anyone much. You will probably be able to see why.
How to Baffle Your Pediatric Neurologist
1. Be an otherwise-healthy child with an uncanny ability for talking, reading, and writing that develops far earlier than your peers.
2. Become irritable and despondent every few months.
3. After a few days of irritability, wake to extreme vertigo that feels like this:
- A build-up of pressure that starts in your head, like a balloon being inflated in your skull, with pins and needles scraping the inside.
- The balloon rolls downwards in a wave, from your head, through every nerve, muscle, and blood vessel, as though a drug is coursing through your body. (When you grow up and have had the chance to make poor choices, you will be able to tell your adult neurologist that the “wave” has the same consistency as the rush your body feels on MDMA, except instead of pleasure, it’s pain).
- The wave is made up of a visceral aching, vertigo, nausea, and more. It is a sensation that, despite being a writer, you can’t find an equivalent word for in the English language.
- The “wave” crashes into your stomach, along with a total loss of equilibrium, intense muscle contractions, and drug-like ripples through every nerve. There is double vision. The walls melt and reform every time you blink. Your temperature gauge goes haywire. You vomit. A lot. You will not be able to sleep through it.
- It will last for 5 days when you’re younger. The first day is mild. You can sit and focus on a point on the wall and as long as you don’t move your head, it will be ok.
- Day 2 is hell. There will be no way to avoid the waves rolling through you, at first a few minutes apart no matter what you do, and then closer together, like contractions, until wave after wave hits you again and again, and you spend hours vomiting and watching the room jump, spin, melt, and duplicate itself.
- On day 3 it will start to improve steadily, until day 6, when it’s finally over. For another 10–12 weeks, you will be fine. Until the next time, when it will happen all over again.
These attacks continued, unchanging, throughout my childhood, until I hit puberty and the pattern altered slightly. The gaps in between lengthened to 16–18 weeks, but the attacks became longer, too, stretching to 10 days before their inevitable end.
As a child, I saw an excellent children’s neurologist who tested me for everything he could think of. I had electrodes strapped to my head to check for seizures (there were none), too many brain scans to count, imaging of my heart, blood tests, and eventually, trials on various medications used in the treatment of ataxia.
Eventually, he concluded that I had a Channelopathy, a dysfunction of the ion channels that meant they didn’t filter things like calcium, potassium, and sodium properly. He suggested that it could be an as-yet undescribed Episodic Ataxia variant, but the problem with having a new variant on an existing illness, is that none of the current medications worked. I was stuck with it, it seemed.
Because of this, I’ve always known intuitively that medical science is not, exactly, an exact science.
Quite simply, we don’t know what we don’t yet know.
I’ve also always understood that the path to diagnosis can be long, taking months, if not years, if not decades to complete, especially if you’re unlucky enough to have something that most doctors don’t see regularly. But, perhaps because I was already a medical mystery, and one who was healthy otherwise, I wrongly assumed that I’d had my fair share of travails through the healthcare system. Until at age 24, when my worst fear was realized.
The second medical mystery
After over a year of poor health following a series of infections and a whiplash injury, I woke in the night to a vertigo attack; the room bouncing up and down as though caught between two walls, and almost throwing me from the bed. The frightening thing was, it didn’t feel like the ataxia, and my neatly self-contained illness wasn’t due another attack for months. The jumping lasted two hours, and I managed to drift off to sleep, telling myself that it was a fluke, and that I’d wake up in the morning still run-down, but back on stable ground once again.
I was wrong.
Four weeks later, and I’d been to the doctors again and again. The floor felt like sponge. The walls moved constantly in my peripheral vision. The horizon bounced when I walked. I was being woken up multiple times every night by the horrendous, jumping vertigo. Crowded spaces made me feel like I was going to tip over. Loud noises triggered a lurching motion that nearly sent me to the ground. It wasn’t the ataxia — but its worst symptom was now constant, and inside, I was practically begging for help. For the first time in years, I thought about the woman in the newspaper, and all I could think was: please, let it not be me.
What do you do when your worst fear is realized? I remember sitting in my living room three weeks in, watching the walls move and thinking, over and over again:
I can’t believe it. I can’t believe this is happening.
Not only had my worst fear come to pass, but it hadn’t even been triggered by the existing condition I thought might one day cause it. The doctors were unequivocal:
“We don’t know why this is happening.”
A second medical mystery. A second cause of vertigo.
Appointment after appointment. GP after GP. Could it be labyrinthitis? BPPV? Vestibular migraine? Most of my doctors concluded it was anxiety causing “mild dizziness,” and every time they said it I wanted to scream. I hadn’t been anxious when it started, and considering the fact that I was living through a nightmare I’d first conceived of when I was nine, I was remarkably calm. But beyond that, I could see it in their faces.
They thought I was exaggerating.
When I said “vertigo,” they heard “light-headed.” When I said “vomiting,” they heard “nausea.” When I said “the room jumps up and down for hours,” they heard “mild visual disturbance.” It didn’t matter that by this point, I was the world’s most reluctant connoisseur of dizziness. I had lived with the most intense version of vertigo my entire life, but now when I sat in their offices with my research, and my theories, and I tried to speak through the waves of movement about just how distressing the constant motion was, they all said exactly the same thing:
“It’s important not to catastrophize. The dizziness will pass soon.”
For nearly three years, this was the only response I received from the medical profession, who seemed, as a united front, to not understand balance disorders at all. The advice to “reduce anxiety” in particular, sounded to me like so much nonsense, since in their offices, only I seemed to understand that the vestibular system and the adrenal system are symbiotically linked. The first thing a body does when it experiences an assault on the balance nerves is to flood the body with adrenaline. Because it thinks you’re falling, it triggers a fight or flight response: catch yourself now before you hurt yourself.
When viewed in this light, telling someone with a balance problem to stop being anxious is like telling someone on fire to stop being hot.
Eventually, I sought out a private neurologist, who diagnosed me with a series of new conditions, but none that could explain the vertigo alone. Can all of them be to blame? Is my constant state of imbalance an amalgamation of problems, or is there one particular issue, something that everyone’s over-looked, that has sent my vestibular nerves into overdrive?
I don’t know, and neither do my doctors. But what I do know is that it’s been four years since the night I woke to the first new vertigo attack, and the walls still haven’t stopped moving. Now, there’s only one thing I want to ask in every appointment I go to:
Is this a catastrophe yet? And would you know it if it was?
No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.
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Previously on No End In Sight — Why Being Honest Is Hard For Me