Going to college is scary. Being away from your parents for the first time, having freedom, and being in charge of your own education can be liberating yet terrifying.
It got even scarier for me when I started passing out my first week of classes.
Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia, which means the condition affects the autonomic nervous system, which regulates anything in the body considered involuntary, such as heart rate, digestion, breathing and blood pressure.
Postural refers to posture, orthostatic refers to standing up, and tachycardia refers to having a heart rate above 100 beats per minute. This condition means the person’s body can’t regulate the necessities of life the way it should, so when they do mundane activities, such as standing or walking, their body won’t regulate as quickly as it should, and they can pass out.
I was in a double in West Ridge. While bigger than most freshman dorms, there was still a lack of space, which led me to loft my bed. On Wednesday, I went to get down the ladder at the end of the bed, and I passed out.
I was lucky enough to be towards the end of the ladder and make it down to the ground safely before I lost full motor control, but the darkness in my vision and numbness in my limbs were enough to worry me.
I had two classes a day starting at 8 a.m. and went to work around noon until 8:30 p.m. every night. For five days a week, I worked 12 hours, then went to work on the weekends and worked eight-hour shifts.
I assumed I was simply overworking myself. I went from playing a sport for six years nonstop to not being that active. I was walking uphill to work and to class every day. Things were just different.
By October, I’d had full blackouts on multiple occasions and decided to go to the health and counseling center.
“Have you ever been bitten by a tick?” the doctor asked me at the time. She was the first doctor to take me seriously about my health.
This was not the first time I had gone to the doctor over concerns for health. I had seen my general practitioner multiple times throughout high school over severe intestinal and muscle pains, unexplained joint pains, dizziness and vomiting with no fever or other symptoms.
I got the same response every single time, “It’s just your period.”
Dr. McKay was the first GP I ever had who took my concerns seriously. She ordered a blood test, mostly concerned it was Lyme Disease, but she did a full workup. She added every possibility she could to my test without charging me extra.
For five days, I stressed over whether or not I had a bacterial infection that could cause irreparable damage from a tick bite I never even had. But at least she was doing something.
Once I got my results, she said, “Congrats, you’re not pregnant. ” I already knew this, but it never hurts to be thorough.
“You also don’t have lyme. Your iron looks good, same with your potassium. Everything looks fine,” she told me. At those words, the little bit of hope I had deflated. Everything was fine.
But I was still passing out.
The semester was ramping up, the holidays were right around the corner, and the maples were turning, which meant that tourist season was in full swing, and we were seeing record-breaking numbers at the Starbucks where I work.
I didn’t go back to the doctor until the following spring semester. I spent at least two days a month at the health and counseling center, usually getting my blood drawn and a few EKGs. Two things were consistent: My blood pressure was low, and my heart rate was high.
By the summer, we still had no idea what was wrong with me. I went back to the doctor, another EKG, more blood tests. Finally, both my doctor and I had had enough.
“I noticed something this summer when I went on vacation,” I told her. “We were in downtown Boston. It wasn’t too hot, but I felt overheated, drained and dizzy. I grabbed a salty snack and a bottle of water and then I was mostly fine. I think I have POTS.”
She seemed shocked when I told her my self-diagnosis. I try not to go down the WebMD rabbit hole or assume I have a condition or disease without a doctor, but we had been scratching our heads for almost a year at this point, and I realized I had seen this before.
The summer before sixth grade, my best friend passed out and hit her head. Her mom rushed her to the hospital, she was admitted, and tests were run. That Monday, they admitted her to keep an eye on her and get her saline. They diagnosed her with a minor concussion and extreme dehydration.
The diagnosis didn’t make sense to anyone who knew her. She always stayed hydrated, but no one asked questions until her condition didn’t get better, and by Friday, they diagnosed her with a major concussion and POTS.
My friend was homebound for most of our sixth-grade year. When she did come back to school, she was in a wheelchair, as walking and standing were still too dangerous for her. At first, I thought that was what the condition was. I assumed it had to look exactly like what she had.
Just before that appointment, I had passed out in front of my mother for the first time. I had gotten dizzy before and scared her half to death on multiple occasions, but she hadn’t seen me pass out before.
I had just woken up. It was an incredibly hot day in the middle of July — high 90s with high humidity — and even the air conditioner wasn’t doing much at that point. My vision had started going black around the edges, but that happened a lot, and I was usually fine, so I kept walking. I made it down the hallway and got all the way to the living room when my body just gave out.
I fell headfirst into the hardwood floor, and by sheer dumb luck, I didn’t get a concussion. She came running around the couch, asking if I could hear her and what had happened, but I could only give her a thumbs up.
After that, I started doing more research. I told my mom what all my symptoms were, and she reminded me of my childhood best friend, who had similar issues when she was first diagnosed. I did my research and started treating my diet and my health as if I had POTS and saw improvements in my symptoms.
When I mentioned this to my doctor, she agreed it looked a lot like POTS, which had only been growing in size since the pandemic. She referred me to a cardiologist in Greensboro, near where my parents lived, since I’d be staying with them during the summer. However, she gave me a warning.
“POTS is incredibly hard to diagnose. It can only be diagnosed if every possible option is explored and ruled, which might include a tilt-table test,” she told me.
I remembered my friend telling me about her tilt table in the hospital. She said it was the worst experience of her life, especially doing it with a concussion and after only consuming hospital food for five days.
The test is done on a metal table. The patient is strapped to it and hooked up to an EKG, which monitors heart rate and blood pressure. Then, after the patient has been lying completely horizontal for about ten minutes, they fling the patient forward. If the patient passes out, their heart rate increases by about 100, and their blood pressure drops, they have POTS.
To me, this test sounded less like a medical trial and more like a medieval torture device, but what do I know?
I was fully prepared for the excessive test when I went to my cardiologist appointment. When the cardiologist read my file, he said all my symptoms read exactly like POTS. I was ready for him to order the tilt table.
“Normally, a POTS diagnosis requires a tilt-table test, but I think those are pretty inhumane. Plus, only 20% of people with POTS actually pass out.”
Those were the best words I had ever heard. I was worried. Given how little knowledge my doctors in the past had on POTS, there was no other testing to prove it was POTS. His suggestion was to rule out everything else.
“It’s going to be expensive and it’s going to take some time, but if we do these tests and nothing else shows up, we can get you on a treatment plan. POTS will never go away, but we can manage it,” he told me.
I almost cried at how far he was willing to go. At the time, I didn’t know, but for most of my life, I had health concerns and unexplained symptoms, likely connected to POTS, that were brushed off. For the first time in my life, I was taken seriously by a team of doctors willing to work to keep me as healthy as possible.
The next month, I had multiple tests, including more blood testing, a heart monitor for daily activities, and an echocardiogram. An echocardiogram is basically a heart ultrasound and is considered a non-invasive procedure as it’s not surgical. However, it felt rather invasive when a man was moving a gel-covered stick around my breasts.
He was incredibly respectful about it and made sure I was comfortable the whole time, but this wasn’t the first time I had noticed the tests I was receiving weren’t meant for me. Any woman who has had an EKG can speak to how uncomfortable getting the various sticky pads in the right spot is. My heart monitor had to be placed slightly higher than it would on most men due to the excess tissue on my chest, which could cause inaccuracy in the readings.
There was a point where the doctor doing my echocardiogram couldn’t see a certain angle of my heart because of my breast tissue. I knew there were many issues in our society of safety precautions only being tested on men, such as seatbelts and airbags, but my experience of going to the doctor so often and having all these tests done was eye-opening to me.
Even today, the medical field isn’t designed to support women. I was being tested for a condition that disproportionately affects young women, and not a single test was designed for a young woman. The only test for the condition is traumatic and inhumane.
POTS is now considered common, with around one to three million cases in the US. This number is likely to be inaccurate as many go undiagnosed. Women are four times more likely to develop it than men, and when we raise our concerns about our health, we are usually told it’s our period.
The condition is also understudied. In October of 2023, not long after being diagnosed, I went to the ER with symptoms I had never had before. I assumed something was wrong and watched doctors scratch their heads, but I went to the POTS subreddit and asked if the same thing had happened to anyone else. Multiple people had the same experience as me.
Some of the doctors at the hospital didn’t know what POTS was, and I wasn’t given an IV for three hours after getting a lot of blood drawn, informing them I was on my period and throwing up blood. They kept telling me they would get me one after I was admitted to my room. I almost didn’t make it to my room.
There are symptoms I have experienced that my doctors didn’t even know of. I thought something else was going on, and I needed more tests. I found out differently from TikTok, where a creator I follow who shares her experience with POTS gave a voice to my unexplained symptoms.
I had been experiencing what are known as adrenaline dumps. Instead of my mind triggering this, like an anxiety or panic attack, my nervous system was doing it. I had been flirting with a guy, and then suddenly, I felt sick, just like what happened the night I had to go to the ER after throwing up blood.
I just assumed my anxiety medication wasn’t working anymore, but it was just the condition that had affected my life for so long without me knowing. I didn’t feel anxious; I was completely fine, but it felt just like a panic attack.
For my whole life, including the aforementioned hospital visit, doctors had been treating my symptoms, not the core issue. To an extent, I can’t entirely blame them. Most doctors aren’t trained on the core issues. In most medical schools, POTS isn’t taught.
The syndrome has become even more common since the COVID-19 pandemic, disproportionately affecting female athletes, a category I fell into until right before I started college. We’re not out of shape, and our symptoms aren’t because of our periods.
It’s well past time for someone to do the research necessary to understand the scope of the condition that has completely altered everything about the lives of the women with it, down to the way we breathe.
