One of my quirkier claims to fame is that I was the first person without a medical background to solve the New York Times “Think Like a Doctor” challenge — and only 30 minutes after it was posted. Dr. Sanders, who runs the challenge, had been waiting for a layperson to win, and was eager to know how I solved it so quickly.
The answer was Vitamin B12 deficiency. I recognized it as a possible cause of the patient’s symptoms because I was in the midst of puzzling through my own “Think Like a Doctor” challenge and knew it could cause some pervasive neurological symptoms. It would take me another 8 years to solve my own puzzle. I did eventually figure my diagnosis out myself, after having been failed by multiple doctors, who told me my symptoms would be resolved if I just ate less and exercised, or went on cholesterol medications. One doctor even told me to eat less salt, which is comical to me now, because one of the primary treatments for my condition — POTS (in my case, hyperadrenergic POTS) — is vastly increasing dietary salt (and fluids).
I went down a lot of wrong rabbitholes, but even when I was wrong, I was far righter than my doctors. Some of my symptoms were postprandial and improved with reducing carbs (sometimes unintentionally through trialling other dietary restrictions) and always pairing carbs with protein. I recognized my symptoms as being adrenergic. I even figured out if I felt like crap, my blood pressure typically measured much higher at the pharmacy. I just couldn’t tie all of these disparate elements together into one diagnosis, until I learned about POTS from my friend Lucia Lorenzi and shortly thereafter began connecting the dots. On really bad days, when I couldn’t get my own work done but I had enough capacity to read outside of my discipline, I read all the research I could get my hands on, which is a lot, as I have institutional library access. I went to my GP, who expedited my referral to my cardiologist as my primary symptom besides tachycardia was shortness of breath, and the rest is history.
As I started talking to other people with POTS on various social media platforms, I started to realize just how fucked we all are: Most doctors don’t know much about the condition or appropriate treatments for it and often have biases that further prevent them from giving their patients the best possible treatment and quality of life. To make up for these gaping deficits, we have no choice but to educate and advocate for ourselves to eke out the best possible quality of life while having a challenging medical condition. And, with the ongoing COVID pandemic and the preponderance of new POTS diagnoses due to Long COVID — there’s a lot of involvement of dysautonomic conditions like POTS in Long COVID — our numbers are vastly increasing, but the quality of care hasn’t really improved to meet these challenges.
So this blog is an effort to figure out how this works and what works, and to share what I think I’ve learned with the wider POTS community. You can also find me on the r/POTS subreddit as u/barefootwriter.
All of the content on this blog is freely available, because we absolutely do not need more gatekeeping. If what I’ve written here has in any way helped you, and you want to do something for me in return, contact your representatives and agitate for single-payer healthcare in the US. The current healthcare system in the US adds a whole extra layer of complexity that I do not face as an import to Canada. Every time I see people having to order ivabradine (called Corlanor there, Lancora here) from Canadian pharmacies that may or may not be legit because folks with POTS struggle to afford it, I want to scream at the people who made it work this way. You, too, could have nice things.
If you’re not in the US (or even if you are), you can do me a favor and donate to Dysautonomia International to thank them for the work they do.
And if you really, really feel moved to thank me personally, you can always buy me a Gatorade Zero through Kofi.
Oh, you’re probably wondering who I am, apart from the POTS stuff. I’m a doctoral student in education in Vancouver, Canada, but I was born and raised in New Orleans. My Masters is also in education, and my BA is in psychology with a focus in counselling, which has been surprisingly helpful for understanding what is happening in my version of POTS.
I’m also an avid martial arts student; I’ve trained off and on for years in a variety of arts: aikido, Okinawan weapons (kobudo), a couple styles of Okinawan karate, and judo. I currently train in karate and kobudo once a week in addition to cardiac rehab.