Getting Diagnosed with POTS

I haven’t shared much of my personal health journey through this platform, but this year that feels important. Little did I know we’d start it off with a bang :) So here’s our little world turned a little upside down over the past month.

If you’re a video consumer, click the youtube video!

If you prefer to read, I put the content into text below.

A little backstory:

*(This post was written in 2019, and includes my experience and understanding up to that point. To read a more recent post about POTS click here)*

Since treating the bacterial infection in my gut in 2017, I’ve learned so much and experienced SO much healing, but there’s been a cluster of symptoms that has persisted and gotten worse over the past year….a chronic feeling like I’m going to faint, extreme fatigue even after sleeping 10 hours, brain fog, circulation issues, and other. All of my tests show a perfectly healthy gal, so we’ve chalked it up to “the healing process.”

In early January, we went to Kauai for a week and those symptoms….left (for the most part). It was like the lights turned back on.

Within 24 hours of returning to Phoenix, all of those symptoms came crashing back….Stephen had to help me get out of bed because I was so dizzy, my fingers and toes were freezing and numb, my heart was pounding, I was seeing spots, my muscles ached, and it felt like the inside of my gut was raw.

Clearly this wasn’t just “my body healing.”

Stephen tackled hours of researching (again) and came up with a list of my symptoms. All neatly lined up with a name above them. POTS. Wait…..What? Dysautonomia….What?

Diagnosis:

We immediately got into a POTS specialist in Phoenix, and within 48 hours I had a diagnosis.

So what is POTS?

POTS (postural orthostatic tachycardia syndrome) is a dysfunction of the autonomic nervous system, which is responsible for all the things you don’t have to think about like regulating breathing, heart rate, temperature, blood pressure, etc.

In POTS patients, the autonomic nervous system doesn’t tell the heart to circulate blood properly, so oxygen and blood isn’t correctly distributed, which makes the heart have to work A LOT harder, and affects every organ and system of the body.

How does it affect you?

Because of the lack of regulation, basically every system of the body is fighting hard to do the bare minimum since everything controlled by the autonomic nervous system is affected to some degree. Every POTS patient experiences symptoms differently, as there’s a huge spectrum.

These are the ways it impacts me:
-Chronically feeling faintish (blood pools in the bottom half of the body and has trouble circulating)
-Fatigue
-Dizziness, lightheadedness
-Poor circulation causing cold fingers and toes
-Brain fog
-Inability to drive (bc of dizziness and circulation)
-Sitting for over 30 minutes escalates faintish feeling (due to legs not contracting to help get blood up the body)
-Get sick more easily and stay sick longer (bc the body has less margin)
-More care has to be taken for digestion, like eating smaller meals frequently through the day
-Microbiome gets easily out of balance which can lead to severe pain (which is why I often tote around ice packs and heat packs)
-Nerves in the GI tract are sensitive and can cause a raw feeling if I’m in a flare up
-Very reactive to any medications or NSAIDS
-High sensitivity to additives in food and products (as the body doesn’t have as much margin to detox what doesn’t serve it)
-Feel pain more intensely in the body, specifically in the core/abdomens
-Higher sensitivity to external stimuli like lights and sounds and textiles (bc the nervous system is on high alert.)
-With POTS, symptoms literally fluctuate every day, so I never quite know what to expect when I wake up.

I don't experience all of these symptoms all the time, they come and go on a spectrum of intensity depending on the day.

How did that happen?

There can be multiple causes. For me it was likely triggered by a prolonged bacterial infection followed by intense treatment two years ago. My body has restored in many ways (like healed GI issues, menstruation, absorption, nutrient levels, etc.) but eventually the nervous system got tipped under the weight of it all.

How is it tested?

There are multiple ways to test for POTS. In addition to meeting symptom criteria, the current diagnostic criteria from Dysautonomia International is that your heart rate must increase 30 beats per minute or more, or over 120 bpm, within the first 10 seconds of standing. When my heart was monitored from laying to standing, I jumped from 54 bpm to 158 within 10 seconds.

Is it dangerous?

POTS in itself isn’t degenerative, but having every system in the body overworked can cause complications long term. However, a lot can be done to support it to reduce strain, improve quality of life, and prevent further complications. I firmly believe that when given the proper support, the body will fight hard towards re-alignment. There’s no certainty, but I'm hopeful that this will be the case for my autonomic nervous system as well.

What do you do about it?

-There are so many lifestyle things that help
-Exercise (Exercise is used therapeutically to get the blood circulating and has even in time been shown to help to autonomic nervous system reset. I know first hand that for the past year I can’t even function until I’ve exercised in the morning).
-Hydration (Increases blood volume to help it be more distributed)
-Iron supplement (can sometimes be helpful in transporting oxygen through the body)
-Salt consumption (helps body hold fluid)
-Wearing medical grade compression socks during the day
-Monitoring the heart
-Lower elevation
-Humidity (Dryer climates can put more strain on the organs and systems in a body with POTS)

What’s next?

This part feels hard. So here’s a letter that Stephen wrote to someone…because he says it best.

“We finally have what I believe to be the final diagnosis for Christina.

Here’s the bummer news – Christina and I have to leave Phoenix. 

As it turns out, Phoenix is causing Christina to experience a constant flare-up. A mixture of the dust, dryness, and general climate here brings out the worst in her symptoms. On a more serious note, it’s actually dangerous to her long-term health. The body can only work in overdrive for so long.

In the meantime, we’re spending these last several weeks in Phoenix with our family, and our closest friends, and dealing with all of the logistics involved with a big move. 

Now that we know she can thrive in the right environment, we’re going all in to find where that is and make it happen.” - Stephen

And THAT’S the hard part. So I won’t even get into it.

The good news it, we have a lot of peace. We can’t be certain if I’ll live with POTS forever or not, or exactly how much I’ll improve, but I feel peace either way. I know for certain that it’s possible to live a really whole life even with broken pieces.

So there it is.

We feel a lot of things, but among them is certainly gratitude.

Thankful that we have the knowledge to be able to better support my body.

Thankful that over the past 10 years of studying, I’ve learned a lot about the intricacies of the body and continue to learn more and more about how to help it thrive.

Thankful for clarity.

Thankful for the experiences of so many symptoms and complications, test, treatments, and highs and lows over the past years, which allow me to meet my Integrative Health clients with so much more empathy, knowledge, and understanding in a deeper way than my text book training alone could do.

Thankful that it feels like life is being turned upside down, but we know for sure that the waves always in some way take us to shore.

*Related Post: What is POTS Dysautonomia