In August, fainting spells were added to my growing list of mystery symptoms. Now I’m not talking Edith Wharton style collapses where I gracefully fluttered to the floor. I mean THUD- at the weirdest times. I raised my voice? THUD. Climbed a flight of stairs? THUD. Stood up? THUD.

Coupled with my muscle weakness, nausea, lack of balance and more, it landed me in the ER where I was given a tilt table test, and a referral to a cardiologist to look into a potential diagnosis of POTS- Postural Orthostatic Tachycardia Syndrome.

I was slotted in for two months later -this past Monday morning- and frankly thought it would be like any other appointment where everything looked relatively ‘normal’ and they had no answers, or they had to wait and see me back in a few months. It wasn’t.

For the first time in years when I explained my symptoms the doctor didn’t look phased at all – he just nodded and asked, “Can I ask you what you did over the 48 hours you wore the holter monitor? Any vigorous exercise or stress?”

“No. I wasn’t feeling great. I did a little walking with frequent sitting because I felt dizzy and had nausea, I stood in the kitchen to prep some lunches for the family… I sat in the car? I mean everything was really low key.”

It turns out my heart rate shot up considerably (well over 40 bpm) when I would stand up from sitting, exert myself by walking to the bathroom, you name it. In fact, it shot up as high as 170 bpm at times.

“So the kind of activity we saw is not exactly what we’d call normal. And it could explain a lot of what you’re feeling. There’s definitely some autonomic irregularity here.”

Oh wow. You mean, I’m not an anomaly? Hold on there Doc, I just need to catch my breath.

“Do you know what Dysautonomia is?” I nodded but he was still absentmindedly tracing my ECG with the eraser of his pencil and didn’t look up. “The autonomic nervous system regulates a lot. So your blood pressure and heart rate, the temperature regulation problems, circulation issues- some people -like you were saying- can have muscle weakness, vision disturbances, brain fog, gastro problems, pulmonary manifestations…”

Every. Word. Is a bullseye.

“So, I mean, this can’t be anxiety.” I say, because so many doctors have shrugged and rolled their eyes and with that kind of pursed-lip smile told me I’m just ‘stressed out’ and to ‘take it easy’ and to meditate more or worry less or try some antidepressants.

“No. Why? Has someone implied that it was?”

I let the comment land and then looked away quickly because I could feel the hot tears pricking my eyes. Sometimes that’s what being seen feels like.

“I’m pretty certain you have POTS but we are going to run a few more tests to learn a little more about your specific situation. Now, POTS is a complicated condition in its own right and I’m not specialized in it but I can refer you to a clinic that does. And it doesn’t shock me at all that you have connective tissue involvement. That’s very common.”

My mind trips on the word. “Common.” 

It’s common. Read: this all makes sense. I ‘fit’. I am not sure if I’m angry, vindicated, happy, or in shock- but for the first time in a very long time even this nudge forward feels like a huge leap.

“I have an appointment at the EDS (Ehlers Danlos Syndrome) clinic next week. We waited almost 2 years to get in,” I ventured some confidence and added, “I feel like I’m finally getting more of a big picture.”

My cardiologist furrowed his brow and shot me a kind, rye smile. “You know, the answers are all there whether we find them or not.”

Yes, Doc. They are.

And in these bodies full of questions we live them every single day.

 

 

Here’s the post ER visit “POTS” video I shared on Instagram.

 

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I keep fainting, so this episode is brought to you from the floor. 🤷🏼‍♀️ Did you know that I was right about my current symptoms 3 years ago, but I shut my intuition down because a doctor who saw me for 10 minutes every 6 months disagreed? 🧐 Well, here’s an update on the answers I got from last week’s ER visit; the weirdest (only partially correct 😅) explanation of POTS and Dysautonomia you will ever see; and an epiphany about advocating for ourselves- and why it’s so important to fully and confidently discuss your intuition with your medical support team. 👊🏻 I’m dedicating this episode to some amazing people who have kept me going this week: @olgod01 @pixiedwyer @selmablair @meaganmetz @heathhorejda Use those superpowers for good! ❤️ Kat (The Autoimmutant)

A post shared by Kat Inokai (@bumpandhustle) on

 


October is Dysautonomia Awareness Month, so flaunt that turquoise if you’ve got it. You can learn alot about symptoms, and how to support loved ones, as well as POTS by checking out this site. Want more? You can also check out Kat’s ‘Tales of the Autoimmutant” videos on IGTV