Morgan Share her POTS Story: Part One

This is part one of Morgan’s journey with POTS. Check out the second half of her story here.

Like most stories, mine begins with someone else’s. I was in sixth grade when my mom received a phone call one night. My dad worked at Con Agra, a poultry processing plant. We always joked that it was like a prison. The walls had razor wire at the top, and no one was allowed in. No one, that is, until that night.  

My dad has an olive skin tone, usually tanned from working out in the sun. That night, he was ghost white. He’d passed out at work, and instructed his coworkers not to call an ambulance, because he couldn’t afford it. The gates opened wide, and they carried him out. 

My mom rushed him to the hospital, but by the time we got there, he was fine.   

He told our family doctor, Dr. Bates, later at an appointment, “I know this sounds crazy, but sometimes I forget to breathe. I’ll be sitting there, and then I realize I’m not breathing.”

Now I won’t lie, our doctor probably thought he was nuts for a minute, but he listened. We stayed with my grandma for a couple of weeks while my mom dragged him all around the state to see specialists. We thought he was going to die, but he came back with a clean bill of health. Now his ailment was a mystery, and all Dr. Bates could do was treat his symptoms. 

This was before the era of smartphones and high-speed internet, but we did have a desktop computer and dial-up. My mom started researching my dads symptoms one page at a time, waiting thirty minutes or more for pages to load, and she finally came up with something that made sense. Postural Orthostatic Tachycardia Syndrome or POTS. POTS is an autonomic nervous system disorder in which the processes our body should regulate automatically, such as blood pressure, breathing, heart rate, and digestion, don’t function properly or at all in some cases. It effects every body system and presents with a range of symptoms that vary from day to day. Twenty-five percent of POTS patients are completely disabled. Others may only be mildly affected.

Our doctor looked at the research and agreed. Then he made it his mission to learn all he could. He ordered a tilt table test, during which, nothing was revealed. However, the technician was busy that day and left him hooked up to the electrodes while she did another task. When he stood up from the table, his blood pressure and heart rate plummeted, then his heart began racing. He nearly passed out in the floor. The tech said, “Oh! You’re tachy-brady!”

If she hadn’t left him hooked up, he would have never been diagnosed. Dr. Bates recommended extra salt and fluids and prescribed medication to stabilize my dad’s blood pressure and heart-rate. It took some adjusting to get it right, and my dad still had dizziness, black spots in his vision, and many other symptoms, even on his good days. He still worked full time, and to most of the world, appeared normal. He still had episodes of passing out and dizziness, but most people wouldn’t know it. It became his new normal, and our family’s.   

Two years later, I was in eighth grade. Our neighbors had a set of triplets who I loved helping out with. I walked miles all over our neighborhood regularly.   

In tenth grade, my mom and I did Zumba classes twice a day a few days a week. I was a healthy, normal teenage girl. I loved being outdoors, I loved dancing, and I loved helping other people. The triplets had some developmental disabilities, and I helped their mom with physical therapy, bathing, feeding, etc. I couldn’t wait to turn 16 so I could get my first real job. 

In eleventh grade, I began a job at the local nursing home as a housekeeper. I signed up for track. I had gained a bit of weight and wanted to lose it. I wasn’t the slowest person on our team, (one girl was a severe asthmatic), but I couldn’t run. I’d make it about 25 yards before I began puking. I thought it was normal, because my mom talked about how in boot camp they would run until they puked. I was also extremely tired, and I had chest pains often. I’d had chest pains my whole life. Doctors always said they were just growing pains, even though they were so sharp and intense that I couldn’t breathe through them. Sometime mid-year, I was awarded a full-ride to Arkansas State University for my grades, which was a pretty huge deal. 

Senior year, I was on track to be valedictorian. I signed up for college courses and planned on becoming a physical therapist so that I could help kids like my neighbors’ do as much as they could and adapt their world to work for them. I had a 4.0 GPA and was still working my job at the nursing home.   

I had saved up all summer working overtime and finally had my truck running well enough to drive it to school. It was a beater, a rusted out ’92 S10 that my dad and boyfriend had helped resurrect from the grave when I was 14. I bought one part at a time, and was ecstatic to be able to get myself wherever I wanted to be.   

I had had one odd episode in July, just before school started. I went to the county fair with some friends and rode one ride. When I got off, I felt sick. That had never happened to me before. I felt dizzy and nauseous, so I sat down and told the others to go on without me. I’d be fine in a few. I didn’t recover well, so we went home early. On our way out, my arm went numb while I was driving. It kept spreading to my other limbs and finally, I pulled over to let someone else take the wheel. Then, I passed out. I remember being in and out of consciousness on the way home. Once I got there, I went to bed, and that was that.   

At the end of September, I wasn’t feeling well in art class. It felt like my brain was rocking inside of my skull. I was dizzy and nauseous, and my vision was blacking out. It was still hot outside, but I was freezing. I wrapped a jacket around myself, and I put my head down on the table. My arms and legs felt heavy. I couldn’t move them. Then, I started to alert my teacher, but I couldn’t speak. I tried to ask a girl beside me to get him for me, but she didn’t really understand what was happening. The bell rang, and there I was still, my head on the table, eyes wide open, but I couldn’t get up. I couldn’t move, couldn’t speak. I was panicking inside as tears rolled from my eyes of their own accord.   

After seeing that something was clearly wrong, my teacher stopped all of the other kids from entering and cleared the room. He tried to help me up, but I fell to the floor completely limp. He shouted for a janitor to call the nurse, and then I went into convulsions. My entire body was shaking. The janitor told him not to move me and that they needed to call 911. When the nurse arrived, I was still convulsing and my heart rate was too high for her to count, somewhere upward of 200. She notified my family that she was calling an ambulance. 

When EMTs arrived ten minutes later, I had finally stopped seizing, but couldn’t move voluntarily. I was slowly slurring a bit of speech out, but it was intense work to respond to questions. It was like being underwater, trying to swim with pockets full of rocks. When they tried to move me, they sat me up. My eyes rolled back in my head and I blacked out. I went completely limp again, and they ended up having to roll me onto the gurney with a sheet. In the ambulance, I was able to speak more clearly and respond slowly, but I couldn’t sit up on my own. Laying back on the gurney, I was beginning to recover, and my vitals looked fine. My blood pressure was a little low, but my heart rate was considered normal. 

My whole family met the ambulance at the hospital where I was deemed completely fine. I was just very slow, tired, and cold. They released me, telling my parents that it could have been an anxiety attack, and that we should follow up with our family doctor to rule out epilepsy. 

From there on out, I had multiple seizures a day, sometimes thirty or more. I was out of breath from just walking to the bathroom, and my heart would pound anytime I stood up. I was sent home from work and school with seizures and fainting, but I still kept trying. My vision would go black when I bent over to empty trashcans, and I was always tired and out of breath. One night at work, I stood up from the break room table (a rather sturdy structure), got dizzy and fell, cracking my head on the table as I went down. I went into convulsions on the floor. If my coworkers had thought I was faking, they didn’t now.

My dad came to pick me up and told a lady he had worked with years ago that we thought I probably had POTS, but weren’t sure yet. I was still being tested by neurologists and cardiologists to rule other diagnoses out. Lo and behold, she was also a patient of Dr. Bates, being treated for POTS. My dad had never had convulsions, but she had them regularly, just like I did. It started after her daughter was born, and now her daughter was thirteen. We were both shocked that there were more people out there like us, and the experience solidified what we had already suspected. My dad and I had the same disorder. 

Want to learn more about dysautonomia? Check out our friends, the Dysautonomia Advocacy Foundation.

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