Heidi’s Story

Read more about this inspiring story about daily struggles with POTS.

10+ years on the journey to answers. Who really thought it would take this long? I sure didn’t. 10+ years of answers that weren’t really answers but, merely lip service given by doctors that either didn’t care or have any ideas what was actually wrong. So, I’d get the generic responses you know the ‘lose some weight” or “exercise more” answers that really isn’t feasible when you blackout when you stand up. Or the off feeling you get just standing accompanied by brain fog. If you’re still reading this, my name is Heidi and here is my journey to realizing I have the chronic illness known as POTS.

I wasn’t diagnosed with POTS until around 2017 but, incidents of blacking out occurred as early as 1996. Suggesting a mild or dormant issue. I’ve always felt off balance when standing but, assumed there was other reasons for this. Plus, getting diagnosed is hard plain and simple, much harder without insurance. I’ve spent the greater part of my life getting my medical from free clinics that didn’t do anything test wise unless they had to. The hoops I had to jump through in 2017 to get a CT scan were ridiculous.

In 2008, I suffered an episode at the mall. I got lightheaded and fainted. Looking back now, I’m convinced it was related to POTS. It was attributed to me getting lightheaded because of heat or maybe I needed to eat etc. But what I remember is the EMT checking my BP laying down and the second I sat up it dropped A LOT. I didn’t put 2 and 2 together back then but, that was a hint of what was to come.

In 2014, I was diagnosed with a colloid cyst in my brain and underwent surgery. Unfortunately, the combination of the surgery and the inactive lifestyle I was living. My symptoms increased in severity. Killing any chance of that exercise the doctors suggested.

In 2017 a Cardiologist decided to test my blood pressure standing up and realized that was a major problem. My BP dropped in half in less than a minute. Finally, an answer that was a real answer. Unfortunately, that doctor realized his office didn’t take my state insurance so, yeah that sucked.

I eventually over the next few months found an electrophysiologist who performed a tilt test on me. In less than 2 minutes my BP dropped so low it actually scared her. Between her and my regular cardiologist I was put on different dosages of Fludrocortisone (which I’m still on). However, I experienced a drop in my potassium so, I’m unable to take more than 1 a day. I was also, prescribed Northera which also, didn’t work out. It was actually making my migraines worse because it was increasing my resting BP too much. I would end up with horrible migraines almost every day.

Sadly, it took many years of misunderstanding and miscommunication to unlock those answers and I’m still, like many searching for solutions. It is my hope that through this wonderful group we will be able to share our experiences and help each other navigate this journey.


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