Reversing POTS with Holistic Living—Part 1 (FINALLY getting my diagnosis)

 

I will never forget my first POTS episode.

It occurred during the middle of my summer vacation from school. I was about 12 years old at the time and visiting my dentist for a routine cleaning. My mom was with me, and everything was perfectly normal…up until the end.

As my dentist cranked the plastic-covered chair back up from a horizontal position, helped me down, and led my mom and I into the lobby where the receptionist was waiting to check us out, I began to lose my vision.

First colors changed. My mom looked green and purple…and the walls a bright orange, despite actually being a muted beige.

Then my vision began to go in and out… Flashes of color, and then…

nothing.

Before I knew it, the world around me resembeled a fuzzy TV screen. Black and white spots where people and framed inspirational posters once were…

As these spots bounced around my brain, the fear I felt intensified. My body was going completely numb, and my head was becoming so light I wondered if it were still attached to my body… Then my stomach dropped and everything around me was swallowed by darkness.

I remember tugging at my mom’s sleeve as she talked to the receptionist about billing… She insisted whatever I had to tell her could wait, and yes, in most cases, she would have been absolutely right.

But not this time.

“Mom!” I said in a sharp, shaky voice, “I can’t see anything…I..I..I…I’M GOING BLIND!”

Immediately my mom, the receptionist, and my dentist rushed me back into the room with the fancy reclining chair and cranked it down to give me a place to lie down.

Within a few minutes of resting horizontally, I felt the feeling come back into my fingertips, travel up my arms and spread throughout the rest of my body.

At the same time, my vision came back similar to how it’d left.

First I saw the fuzzy TV screen. Then flashes of people…purple and green and orange… Then everything stabilized—the beige walls were beige again, and on the wall across from me I once again saw the framed poster of a bald eagle, with the word “EXCELLENCE” written underneath it.

Once the episode was over, the dentist handed me a Coke and told my mom to take me for ice cream. According to him, what I had experienced was a “hypoglycemic episode”—aka, my blood sugar dropped too low. He told me the next time I felt this happen I should put my head between my knees and eat something sugary.

So, for the next few years, that’s exactly what I did.

I experienced these “hypoglycemic episodes” several times a day, often during school, and when they occurred, I’d pretend my shoe needed tying. This provided me with a seemingly inconspicuous 30 second window to rest my forehead upon my kneecaps..although, the way I fumbled with my shoelaces (unable to actually see them) really wasn’t doing me any favors in the “smooth” department.

Once my vision came back, I’d grab a piece of candy from my backpack and be on my way. Just a normal walk to class for Sarah Morford.

Of course, my episodes didn’t always go this smoothly…

There were also times when I’d pass out and scare the living daylights out of my friends teachers, and coaches.

Eventually intense periods of heart racing—always above 250 bpm, and usually about 5 minutes in length—began following these episodes. This not only terrified me, but completely exhausted me too. As a result, I’d usually sleep 3-4 hours after each episode, only to wake up feeling just as wiped out as before.

My parents did everything they could to help me figure my health issues out, starting with LOTS of doctor visits. Unfortunately, test after test after test was ordered, yet no pathology discovered. All in all, according to the doctors and specialists at the Cleveland Clinic, I was a very healthy child.

So I continued following the dentists instructions, relying on candy and soda to get me through the day.

Today, as a holistic nutritionist who vehemently preaches against consuming refined sugars—especially high-fructose corn syrup—this reality from my past still makes me cringe.

It wasn’t until I was about 16 years old that I finally received my diagnoses of POTS and SVT (I’d also find out 6 years later I was living with a hidden cancer the entire time).

Overall, running cross country in high school is what finally led to my POTS & SVT diagnoses, as I was having episodes of each at nearly every practice.

First, my doctors believed these episodes might be boiled down to exercise-induced asthma—you know, passing out due to a lack of oxygen—which seemed to make sense.

However, after trying multiple inhalers without success, my doctors moved onto new theories, and soon had me hooked up to a 24/7 heart monitor (the actual recorder clipped onto the waistband of my jeans, with wires traveling up my torso where they attached to various clips stuck to my chest with a strong-smelling adhesive).

From this point on, each time I had one of my episodes I was to depress the “record” button of the plastic device hanging from my jeans and continue holding down the button until the episode was finished.

Fun fact: whenever the “record” button was depressed, the sound you’d get when picking up a landline phone while signed onto “America Online” filled the ears of everyone within a 20 ft. radius.

It is even necessary to mention I wasn’t “cool” in high school? …I didn’t think so.

Thankfully, these recordings provided doctors with everything they needed to diagnose SVT (supraventricular tachycardia). Oh, and if you’re not familiar, SVT occurs when there’s a problem with the heart’s electrical system, which controls heart rhythm.

To fix my SVT, I had a catheter ablation performed, which is a procedure using radiofrequency energy (similar to microwave heat) to destroy a small area of heart tissue that is causing rapid and irregular heartbeats. Destroying this tissue helps restore the heart’s regular rhythm.

From this point on, I no longer experienced heart racing with my episodes (YAY!), however, my episodes were still happening multiple times a day. So back to the doctor I went.

Eventually I received my POTS diagnosis (postural orthostatic tachycardia syndrome) after a specialist recommended I have a tilt table test performed (more or less, the tile table test reenacted my first episode at the dentist—you can learn more about this test HERE).

Why no one thought of running this test before still puzzles me, but hey, that’s life.

After diagnosing me with POTS through the tilt table test, my doctor informed me there was nothing I could do to heal. POTS, he said, was a relatively new condition, and still being studied. He told me there was a chance I’d outgrow the condition, but that in the meantime I should eat more salt and drink more water to help with circulation/blood volume issues.

Again, if you’re not familiar, POTS is a form of dysautonomia, which is just a fancy umbrella term used to describe conditions causing a malfunction in the autonomic nervous system (the part of the nervous system responsible for controlling unconscious bodily functions, such as breathing, the heartbeat, and digestive processes).

In regards to POTS specifically, the diagnostic criteria focuses upon an abnormal heart rate increase upon standing. However, the condition itself affects much more than heart rate alone.

In addition to blood pressure and heart rate abnormalities, POTS patients often deal with hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing. Many folks living with POTS also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath. These men and women may notice a reddish/purple color in their legs upon standing, caused by blood pooling and poor circulation. This color change often subsides upon entering a reclined position, as does blood pressure and heart rate.

Overall, I was living with a classic case of POTS, which resulted in my eventual abandonment of athletics, as well as a whole lot of missed school.

It took 6 years of living with POTS—watching it grow stronger each year, stealing more and more of my life away—before I discovered the healing powers of nutrition. After receiving my cancer diagnosis at 22 (in both my personal experience and experience working with clients, POTS never shows up alone), I made a personal commitment to learning my body, radically changing my diet, and getting back into an exercise routine despite being bed ridden.

Thankfully, while it took a lot of sacrifice and work on my end, within a matter of months, I felt like I had my life back. I even finished college a semester early, enrolled in a holistic nutrition program, and moved out of my parents house all within one year.

After a few more years of working on my health, I currently live life completely POTS-free, cancer-free, and healthy.

Today I enjoy running again (training for a marathon!), hiking regularly (moved across the country to live in the mountains!), working two jobs (a holistic nutrition consultant helping other women reclaim their health again and a nanny for two awesome pre-teens), traveling, and spending my free nights out with friends dancing or chatting over a glass of wine (no food or drink is “off the table” forever!)

When I think back to my 16 year old self, lying in bed praying to God one day she’d be able to run again.. go to school.. hold a job.. see the world.. I smile.

She didn’t have to stay hopeful. She didn’t have to keep dreaming. She didn’t have to give up the comforts of “junk food” (one of the few comforts she had left). And she most certainly did not have to begin eating a diet so peculiar everyone assumed she was crazy.

She didn’t have to do any of it. But she did.

Her boldness is the only reason I’m sitting here today, typing this post with a warm cup of green tea, getting ready to hit up a HIIT class at the gym before leaving for a weekend concert/camp out on Vashon Island off the coast of Seattle.

I am so thankful for her, and I will honor her the same way she honored me—by making positive, health-promoting choices, even when it means sacrificing a luxury or convenience “everyone else” gets to enjoy.

She is worth it. And so are you.

If you’re struggling with illness today, I hope you find the courage to hold onto hope. To keep dreaming. To sacrifice. To experiment. To seek answers in new places… And to heal. Fully and truly.

XO, Sarah

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