My Dysautonomia Story

My diagnosis story is a long one with LOTS of episodes, symptoms, doctors appointments, tests, ups and downs. So I'll try to keep this short, sweet, and to the point.

I was in sports throughout my childhood. I was (and still am) extremely competitive. I loved the rush I would get from dribbling down the basketball court and running down the soccer field. I played sports, I danced, and I Ice skated. I had endless energy and was always active and I loved it. I loved it all. 

And then I got Shingles in 6th grade.

Dysautonomia has a wide range of causes, and

doctors all feel confident that Shingles was the

cause of mine. Which all lines up. Crazy how one

infection can leave everlasting impacts on your life and future. In retrospect, that's when everything changed. I slowed down majorly. I had my first episode on a field trip. Talk about embarrassing. In the next few years, I had a few more episodes. My symptoms worsened and my parents took me from doctor to doctor trying to get some answers. 

Which, spoiler alert, didn't go in my favor. 

I was given every bogus one liner you can think of. "it's just anxiety", "you just need to do yoga". I was also told within months of each other from separate doctors: "if you just lose weight it'll all go away and I've been told "if you gain 30 pounds your symptoms will subside" And the most damaging one for me personally, "it's all in your head". 

You name it, I've heard it.

In 2014, I had a very...very bad episode at the

Hoover dam. Jordan had to carry me down

multiple flights of stairs, I woke up in a strangers car (who didn't speak English btw..it was a whole thing), and ultimately, an ambulance came, sirens and all. This really left me no choice but to NOT stop until I got actual answers. I went from specialist to specialist and ultimately saw a cardiologist who ordered a variety of tests including the tilt table test which is basically a torture chamber for anyone with POTS and NCS. Two minutes into the test and I had tears rolling down my face and I was begging them to put the test to a stop.

My heart rate and blood pressure were going bonkers, I was sweating profusely, white as a sheet, and three minutes in, I was out like a light. I was diagnosed with POTS (Postural orthostatic tachycardia syndrome) and NCS (Neurocardiogenic syncope). Fast forward to 2019, I was diagnosed with IST (inappropriate sinus tachycardia) POTS, NCS, and IST are three forms of dysautonomia. 

Simply put, POTS is a form of orthostatic intolerance that makes you sick particularly when you stand up and NCS is basically fancy terminology for having fainting episodes. They sort of walk hand in hand unfortunately, one worsening the other. IST is basically POTS but when you're sitting down as well, fun ain't it? My heart races when I stand up and my heart races when I sit down. I have about 20ish decent minutes before I start feeling really sick. Which is why I work from bed every day. There's still very little known about it and consequently no fix to its life altering symptoms and episodes, only band aids. 

I think this is as short & sweet as this story's gunna get!