My Fight to Get a POTS Diagnosis in College
It took three years of seeing different doctors and enduring countless medical tests to finally receive a POTS diagnosis. In between all of that, I was finishing my undergraduate studies, completing graduate school, and working a part-time job on campus, all while watching my health deteriorate without proper intervention.
Now that I know what’s causing my symptoms — and have seen much improvement in them — I want to share my story. I want to be a source of inspiration for those who are living with POTS, or struggling to get a diagnosis: a time that, for me, felt grim and hopeless. I want to show others that it can get better with knowledge, persistence and consistency. Getting a POTS diagnosis doesn’t have to be the end of any hopes you ever had of living an interesting, dare I say, exciting life.
In October of 2018, I traveled to the Cleveland Clinic after waiting nearly 10 months for my appointment. Up until that point, I’d been told I was depressed, under too much stress, or my favorite, making it all up in my head. It was that final comment made by a doctor that prompted me to find a POTS specialist. My mom and I researched it online, and we came up with the Cleveland Clinic. So we called, I got put on the waiting list, and I waited and waited and waited until I finally got my appointment. In the meantime, I did my best to struggle through my symptoms: full-body fatigue, tachycardia, shortness of breath, lightheadedness and tunnel vision upon standing, impenetrable brain fog, chronic foot pain, exercise intolerance, and digestion issues.
But let’s go back to the beginning, shall we? I first noticed something going on with my body after I’d been laid up for a whole summer with a pinched nerve in my lower back. Getting that diagnosis wasn’t easy either. By the time doctors figured out my pelvis had gotten so far shifted that it’d pinched a nerve and caused the inability to walk, or even put any weight on my feet without unimaginable pain, I hadn’t stood up in two months. My body became very deconditioned. When I did start walking again, I had to use a walker because my legs had grown too weak to hold myself up. I wobbled like a newborn fawn.
That wasn’t the only thing different about me. I noticed that my heart almost always raced, and it only slowed when I sat, or better yet, laid down. Previously simple tasks like getting dressed, styling my hair, or making breakfast left me exhausted. When I couldn’t keep up with my friends while walking — huffing and puffing and bringing up the rear with my heart pounding — I got scared. The fear only truly sank in after a bad bout of the flu followed promptly by pneumonia. The combination intensified all of my symptoms.
I can still recall the moment when I realized I needed to see a cardiologist. It was around February of 2017 when I’d tried to run for the first time after recovering from the flu and pneumonia. After my pathetic attempt at a run, I returned to my car with my pulse stubbornly high and not recovering. I couldn’t seem to get the elephant off my chest that decided to plop itself there. If I moved again, I was certain I’d fall over, going splat on the pavement. Am I having a heart attack? I asked myself. But I was only 22 years old! That couldn’t be! I was very, very scared, and this moment prompted me to take immediate action.
However, the cardiologist I went to see couldn’t find anything wrong. He examined me, ran tests, ordered bloodwork, and happily reported that I was fine. He believed pneumonia caused these lingering effects on my stamina. That seemed reasonable. Didn’t it?
I left his office relieved that this would all go away once I put enough distance between flu season and me. You’re now probably predicting that this didn’t alleviate my symptoms. If so, you’d be correct.
At the time, I refrained from seeking out a new doctor, though. My echocardiogram was fine, my blood work was fine, so I thought I had to be fine, too, right? There was just one problem: I still felt like crap!
I continued to struggle with my symptoms without any other medical intervention until my yearly endocrinology appointment for Hashimoto’s and CAH. The nurse took my pulse and immediately asked me if I was OK. My pulse was 120 bpm! It was still trying to recover from walking into the examination room a few minutes before! She told my endocrinologist, who then spent a lot of time with me to make sure I was actually OK. He became the first person who said the acronym “POTS” to me. I had the same befuddled reaction that I now see on people’s faces when I tell them that I have it.
POTS: postural orthostatic tachycardia syndrome. It’s a type of dysautonomia, or dysfunction of the autonomic nervous system. I Googled it as soon as I got home. To my surprise, it sounded exactly like what I’d been going through. Finally! A name for what I was experiencing! With my endocrinologist’s referral for further heart testing, I was sure I’d have the official diagnosis soon and be on my way to feeling better.
I returned to the cardiologist, but unfortunately, he persisted in believing that nothing was wrong. He repeated routine testing and still found nothing abnormal or worth any further investigation. Sigh.
Several months later, after struggling through grad school and a part-time job with worsening symptoms, I went back for a third appointment. Now I feared I wouldn’t be able to finish school because I was getting worse and worse. Every little thing exhausted me, and some days, I could barely get out of bed. Before this appointment, I spent several nights typing up a detailed history of my symptoms and medical background in hopes that maybe he would catch something he’d missed. However, at the appointment, he still maintained that he couldn’t find a systemic cause for my symptoms.
I could tell he thought this was all in my head. Instead of just saying he didn’t know how to help me (he wasn’t familiar with POTS), he asked me if I was happy with my life. My response? I never went back to his office. No one was going to tell me I was faking my symptoms when I felt so weak and exhausted just being on my feet each day. When I’d been terrified of passing out walking across campus and humiliating myself. I used to be so active before my nerve injury, and I was in the best shape of my life. Since then, all I’ve ever wanted is to be healthy and well, to get back to the active lifestyle I led before this all happened. Why would I fake being unwell?
That’s when Cleveland Clinic came into the picture. After waiting months for my appointment, my parents and I traveled the 5.5 hours to Cleveland, Ohio. Oh, how nervous I was. After all the negative experiences with prior doctors, I expected to not be believed again. And I was in such bad shape by this point; my brain fog and fatigue had become so bad that I could barely participate in my discussion classes because I’d blank out on what I was saying as I said it. It was really embarrassing, especially when I used to speak with confidence as I eagerly shared my thoughts. Now I stayed quiet in class unless I had my thoughts written down in front of me. No part of me felt like my usual self.
However, the provider I saw in Cleveland Clinic’s neurology department ended up being my saving grace. He listened to me. He let me cry when I got emotional sharing my journey. He took detailed notes, asked detailed questions. He spent the time with me and didn’t rush me, even though I brought a giant binder filled with every test result I’d ever gotten in my life. Then he thanked me for coming and told me the most wonderful news: He believed me. Not just that, but he believed that I did have POTS. He ordered a slew of tests to confirm it.
As if my journey couldn’t get any more challenging, testing was not an easy process. My tilt-table test — considered the gold standard for diagnosing POTS — didn’t come back too abnormal. Additional testing couldn’t pinpoint the cause for my POTS-like symptoms either, which meant I still couldn’t receive an official diagnosis.
It took until the spring of 2019 for me to “fail” my hemodynamic echocardiogram and finally get the POTS diagnosis. During the tilt-table portion of the exam, my vitals plummeted and I nearly lost consciousness. They had to stop the test early, but they’d gotten what they needed. They saw I had significant venous pooling in the lower half of my body due to insufficient vasoconstriction, along with hyperdynamic circulation. But why was this happening to me? This big question was the only one they could not answer at the time. (Update: July 2020: I am only now beginning to understand that it may be related to my recent MALS diagnosis.)
A year after I first went to Cleveland Clinic, I can happily say my POTS symptoms greatly improved. While I was not symptom-free, my good days far outweighed my bad days. I got back to doing the things I did before I fell ill, including running and being on my feet for longer than ten minutes. I’ve been drinking a ton of water, eating more salt than I ever thought a person should, exercising strictly, and taking pyridostigmine one to two times a day. I completed my MA Thesis and finished graduate school, earning my MA in English with a concentration in Creative Writing with a 4.0 GPA. I moved to New York City with my boyfriend of almost five years, excited for a new chapter to begin in my life.
I want to share one last thing I think everyone needs to hear with POTS or any chronic illness. Even growing up, I had my fair share of hardships with my health. My dad would always tell me, “Mind over matter,” as he’d point to his temple and tap it twice. If my mind was in the right place, I could overcome anything. I’ve held on tight to this saying, especially the last three years. Except, as of late, I’ve taken the liberty of changing the words to “Mind over POTS.” I hope my dad won’t mind. This motto has taught me that I am stronger than this syndrome, even on my worst days. It’s taught me that I can overcome its challenges with knowledge and the right management tools. It’s taught me to have hope, perseverance, and patience and, above all, never give up. I truly believe that this mentality got me through college, even when I was bedbound completing my assignments.
I hope my story empowers other POTS patients. But perhaps most importantly, I hope to provide a positive example of how a POTS diagnosis doesn’t mean your future is filled with nothing but doom and gloom. Yes, you will have bad days, but you will also have good days. Life becomes a journey of mastering your unique POTS case in order to live your life to its fullest potential. In my experience, it is possible to heal and get better. It is possible to achieve the extraordinary and accomplish your goals. Don’t ever lose faith in yourself through the battle!