I’m often asked to share my entire story about my journey with POTS and just never got around to it. I always plan on getting to it, but the task sounded daunting to say the least. Where would I start? How could I give my story justice? I’ve told bits and pieces here and there to countless doctors that the whole process became medicalized. It no longer became my story, or a testimony, but a statistic. I’ve become quite disconnected from my story- perhaps because of the trauma it caused, perhaps because I have a very poor memory, or perhaps because of both. Writing out my POTS story became another thing on my never-ending to-do list that always found its way at the bottom. I believe in the healing and transformative power of sharing our stories so I know this post is long overdue. As I finally write out my story I will attempt to approach it from all angles I’ve been asked about: my medical history since birth, my process to receiving an accurate diagnosis, past and current treatments, what worked for me and what didn't, medical trauma, and hope. I will inevitably forget some details that I’ve sought to forget over the years. But I ensure you that every remembered and essential piece to the story will be laid out on these posts. I hope that through reading my story you realize that you're not alone in your suffering and that things can and do get better.
*If you have medically-related PTSD, suicidal ideation, depression, anxiety, or suffer from any mental illness that could make you vulnerable to hearing this story I do advise that you proceed with caution (trigger warning).*
I thought long and hard about whether or not I should include some information about my life prior to POTS. I decided that in an attempt to provide a full picture and some essential medical history, I would share what my normal was before sharing how I lost that.
If you're more interested in what POTS treatment worked for me and what didn't, that'll be included in the 2nd part of this blog post (to be published).
I was the first-born (only daughter) child in my family and have 3 younger brothers. I was born in BC, Canada (where I have lived my whole life) in 1993. My mom (who has EDS but didn’t know until I developed POTS) had a natural birth with all of us children with my labour being the most difficult and longest (to be expected with one’s first child). I quickly became ill until they realized that I was born allergic to dairy (which I was consuming through my mom’s breast milk). I lost weight rapidly but gained it all back once my mom stopped consuming dairy. Growing up I was raised Catholic and went to a Catholic elementary and high-school. I was a high-energy, extroverted child with a love for life and being kept busy. I had a type A personality and that was revealed through all my extra-curricular activities. In grade 5 I was in a serious car accident with my mom and brothers. I had the most serious injuries in which my head went through our mini van’s window and I was unconscious for quite some time. I woke up with a bunch of glass in my mouth and head. Later on that day my mom was trying to get me to eat and I said “I can’t eat, I don’t have teeth” and opened my mouth widely for the first time that day to show pieces of glass in every inch of my gums. My gums were so numb I had thought I lost my teeth! Over the years I developed a poor memory and bad headaches that I blamed on this car accident. Sure, it could’ve been caused by that, but kids brains are very resilient and I now know better than to blame 1 concussion for my entire health history. I had testing done immediately after and a year later that showed no damage.
Over the years I ended up developing what I now believe were POTS symptoms. In high-school we had uniforms that consisted of a short-sleeved white polo shirt and a kilt. My friends would often complain of it being cold inside our school but I was always sweating. Every day after high-school I had a migraine, neck pain, and such bad heat intolerance that I would ask my mom to blast the AC during the 30 minute car ride back home. I'd get annoyed if anyone talked during the car ride home and it became an annoying ritual for my family and a painful one for myself. When I got home I'd have a nap and wake up feeling a bit better.
The migraines got really severe but I never cancelled anything because of them- I think I built up a tolerance to this specific pain. However, it was so unbearable that once I took a hammer lightly to the back of my neck to try to relieve the pain. No doctors took this pain seriously so I was never on any medication for it (sometimes OTC things like Tylenol) nor received any formal testing or treatment. I had seen a chiropractor, physiotherapist, massage therapist, and acupuncturist frequently throughout the years.
In 2013, the year before what I call “my first POTS attack,” my health started declining. I couldn’t figure out what was wrong but I linked it all back to my chronic neck pain as all my symptoms would happen around the same time. I barely had any energy and would nap 3x a day. I could still work and go to school but it was like swimming through molasses. The neck pain and migraines grew in intensity and I became incredibly forgetful. I lived alone and would randomly be sitting at the computer sometimes and realize “oh no! I’m supposed to be in class right now!” because I completely forgot even though I had copies of my schedule everywhere. I had presyncope a couple times but didn’t think much of it. In the month prior to my first “POTS attack” I started having troubles swallowing and often choked while eating (something that never happened before). I even went to a counsellor at my university twice because I thought from the lack of energy and inability to workout that I was developing depression. Oh boy was I wrong.
In less than 48 hours, on the anniversary of when I got sick, I'll be sharing part 2 of my POTS journey which will include everything from January 20th 2014 to now. Stay tuned!