My POTS Diagnosis Journey in Ontario, Canada
I can still vividly recall receiving my Postural Orthostatic Tachycardia Syndrome (POTS) diagnosis after years of uncertainty and frustration. Living in Ontario, Canada, where the path to diagnosis can sometimes feel like navigating a labyrinth, this journey was nothing short of an odyssey.
The symptoms of POTS had plagued me for ages, like relentless poltergeists haunting my daily life. From unrelenting fatigue to dizzy spells that turned grocery shopping into an Olympic event, my world felt like it was gradually shrinking. But the hardest part was the inexplicable heart rate spikes. It was like having a mischievous DJ inside my chest, spinning tunes at a club I never wanted to attend. I would feel like my head was being drawn to the floor like a magnet. I would only find some relief when I laid my head down. Unfortunately, on my bad days, the fewer postural changes the better.
The quest for a diagnosis in Ontario wasn't a smooth ride.I was so frustrated with our medical system. The length of time waiting for appointments was unbelievable. This stress causes you to become more ill. It was as if POTS had teamed up with bureaucracy for a game of "hide and seek." I was shuttled from one specialist to another, undergoing a barrage of tests, as the healthcare system tried to decipher the enigma that was my body. "Is it just anxiety?" they wondered aloud as if an invisible tap dancer took up residence in my heart for kicks. My autonomic nervous system feels as if I am caught in a cycle of fight or flight. With every adrenaline dump feel like I have run a marathon.
Mobility became a daily challenge. Sometimes, I felt like a marionette with cut strings, my limbs heavy and unwilling to cooperate. Standing up could trigger a heart rate rollercoaster, and stairs became my Everest. Oh, the irony that the disease with "postural" in its name made even the act of standing feel like a high-stakes gamble. Dysautonomia causes your body to require 2-3 times more energy than a healthy person in completing tasks.
But POTS didn't arrive alone; it brought a cast of comorbidities to the party. Dysautonomia, with its lightheaded spells and erratic blood pressure, was like an unwanted guest. Chronic fatigue syndrome (CFS) joined in, making each day feel like an endurance race, and fibromyalgia brought its own version of pain, turning every touch into a potential landmine.
And then there's the brain fog, which I affectionately call my "POTS brain." It's like trying to think through a bowl of oatmeal, where simple tasks turn into mental marathons, and the simplest words play hide and seek in the labyrinth of my mind. So, my "Fibro Fog" now has a friend with "Pots brain".
But despite the hurdles and the frustrating detours in my quest for answers, there was a silver lining. That moment when the cardiologist confirmed POTS, I felt like I'd won the lottery (a small, weird lottery). Finally, someone understood, someone had a name for the invisible tormentor wreaking havoc in my body. All the issues and symptoms suddenly made sense. My Apple watch was a silent witness to my heart rate high score of 204 beats per minute (bpm) and then dropping to 40 bpm rapidly. I describe it as being on the "demon drop" ride. (insert nausea here). Vomit bag, please!
In Ontario, the path to a POTS diagnosis might be convoluted, but the sense of relief that comes with it is immeasurable. With a diagnosis in hand, I embarked on a new journey – one where I am learning to navigate this strange POTS-infested world, one quirky symptom at a time. It's a journey with its own challenges, but it's also filled with newfound hope, a community of fellow POTS warriors, and the determination to make the most of the life I've been given.