My POTS Story: Fainting, Flares, and What I've Learned

Disclaimer: I have a background in sports medicine, but I am not a physician. This is my personal story, not medical advice. Always talk to your own doctor.

Let's Start At The Very Beginning

From as young as I can remember, I experienced dizzy and fainting spells, exercise intolerance, and (looking back now, a big red flag) I never sweat.

I went to my pediatrician so many times, just to be told to "drink more Gatorade and eat more salty foods, like popcorn and pickles." Something I was not complaining about as a kid. But now as an adult, I wonder: did my doctor know what POTS was, but never share that wisdom with us?

Middle School, High School, and Marching Band in 100 Degree Heat

I was home sick more than I was at school.

In marching band, we would practice in 100+ degree heat, and I wouldn't sweat a drop. My entire face would turn red for hours; I now know it was because I couldn't regulate my body temperature. We would chug water on breaks, and my symptoms would somehow get worse. I can't count the times I fainted on the field.

College, Grad School, and Feeling My Heart Pound Out of My Chest

By college and grad school, I would be relaxing and suddenly my heart would feel like it was beating out of my chest. My fatigue and weakness were at an all-time high. It got so bad in grad school that I had to request a change to my clinical site. I was worried I wouldn't be able to take care of my geriatric patients.

When my clinical site was at a high school, I was in a constant flare because we were outside most of the time.

Looking back, I struggle to find a sign or symptom I haven't had at some point.

"The Girl with Something Wrong"

I felt weak and embarrassed. In every way - Physically, mentally, emotionally. 

There were so many times I KNEW something was wrong - due to POTS & other illnesses, but didn't want to bring that attention to myself. Because I hated being known as the girl "there was ALWAYS something wrong with".

The Road to Diagnosis

I was officially diagnosed in 2015 (when I was 22). Right at the end of grad school, I did my primary care clinical rotation with one of the PAs at my school's hospital system, who was involved in my graduate program. I told her a small bit of my story and she told me to make an appointment with her. 

She's the one I credit with my diagnosis. She's the first one who really listened.

The Cardiologist 

Around this same time, I saw a cardiologist who had me wear a Holter monitor for 2 weeks. She could confirm that my HR was increasing when I noted it, but there wasn't a reason why - and diagnosed me with anxiety and said it was "stress". Needless to say, I never saw this doctor again.

The PA Who Changed My Life

I made an appointment. I shared my entire life (illness) story, and after talking for an hour, she asked me "Have you heard of POTS?" - I hadn't. She told me to look it up when I got home, gave me instructions for an at-home table tilt test, and told me to follow up the next week. 

I went home, did some research, and I saw myself in everything I found. I did the at-home test (I fainted). 

I went back, and we spoke some more. She gave me the diagnosis and an info-sheet. Because I work in sports medicine, we both felt pretty confident I could do my own research with limited assistance. 

I felt validated. Relieved. And so overwhelmed with everything this diagnosis meant; how my life would have to change. 

It's been more than 10 years since then, and I am still learning every day.

It Gets Worse Before It Gets Better

Almost immediately, after my diagnosis, I did what might've been the worst thing I could've done for my health - I went on a 3 month summer tour where I worked 16+ hours a day, mostly outside. 

Let's just say, I got a LOT worse before I got better. 

It took a year & a half, a lot of changes (physical, emotional, dietary), but I finally got to a pretty decent spot. Over that time, I lost 40ish lbs, was moving daily, eating so much better, and tracking my electrolytes, and was even interviewing for a dream summer job out of state...

And Then The World Shut Down

And I was one of the first people who was diagnosed with COVID in Florida (March 2020). And as we now know, COVID has been shown to cause POTS in people who have never experienced it before. COVID messed me up for a long time. 

The PA that diagnosed me stopped practicing not long after I was diagnosed, and from 2019-2024, I didn't have a PCP. I was primarily managing my chronic illnesses by myself (save for emergencies or need of imaging). 

While there were long stretches of healthy periods (& recurrent flares) post-COVID, by the end of 2024, my symptoms were the worst they had ever been and I made the decision to find a new primary and (hopefully) a new team of physicians. 

Trial & Error (and Many Many Flares)

Over the past 8 years, I've tried everything. Electrolytes, compression, exercise, medication. You name it, I've probably tried it. There are so many mistakes and traps to fall into with POTS. 

What "They" Tell You	The trap
Drink water	Chugging water can cause a flare
Stay active	Going "too hard" can cause a flare
Eat healthy	Eating too much volume can cause a flare
Acclimatize to heat	Doing it for too long can cause a flare
Take medication to lower your heart rate	If you also have low blood pressure, it can cause a flare

As you can see, every piece of advice for POTS rides a fine, fine, line between helping and hurting. Unfortunately, it leads to a lot of irritating (but necessary) trial & error.

Finding New Providers Can Change Everything

In January of 2025, I found a new primary care who helped me find new physicians (and then very quickly found a new PCP who specializes in chronic illnesses, but that's another story for another time). 

When I told her everything I had been through, she said "I think there's a bigger underlying condition that might be the cause of your POTS, GI issues, and other symptoms." I had thought that for a long time. 

A new Gastroenterologist, a new Rheumatologist, an Electrocardiologist, and two new physical therapists - one for chronic pain (who had experience with POTS), and one for pelvic floor physical therapy. 

By June 2025, my life looked completely different. I could exercise without feeling like I was going to faint. I was much more aware of my symptoms and how to prevent them. I knew how to approach every day prepared.

My #1 Piece of Advice for POTS

As a perfectionist, the most important advice I can share about POTS is 

"Don't do ANYTHING with 100% effort." 

This takes a lot of unlearning (and therapy), and I still struggle with this. 

Moving doesn't mean running a 5k, lifting weights, and taking HIIT classes. It means 2 minutes on a recumbent bike, small stability exercises, low-intensity 5 minute stretching sessions. 

Drinking water doesn't mean chug 100+ oz in 2 hours. It means drinking about half your weight in OZ throughout the day. And adding electrolytes so your body actually holds on to the water. 

It means starting small. It means starting smaller than you would ever possibly imagine. It means reminding yourself every day, every hour, every minute, that a 1% improvement is movement in the right direction. 

You'll get there. It takes time. Take your time. 

What's Next?

In my next post, I'll share the story of how I got my other three main diagnoses: EDS, ADHD, & Celiac, all within a month of each other.

Share This Post! If this story resonated with you, share it with someone who needs to hear it. 

I have a background in sports medicine, but I am not a physician. This post is based on my personal experience living with POTS, EDS, celiac, and ADHD. Nothing here is medical advice. Always talk to your own doctor before changing your routine.

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*10+ years of personal & medical experience. Living with POTS, EDS, celiac, and ADHD. Making resources I wish I'd found.*