It took almost three years of seeing different doctors and enduring what seemed like endless testing to finally receive my POTS diagnosis. In between all of that, I was finishing my undergraduate degree, starting graduate school, and working a part-time job on campus, all while trying to keep my health struggles a secret. 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 suffering from POTS, or struggling to get a diagnosis–a time that, for me, felt pretty grim and hopeless. I want to show others that it can and does get better with the right 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.
So, here’s my story…
A year ago, in October of 2018, I traveled to the Cleveland Clinic after waiting nearly ten 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 the last doctor I’d seen before going to Cleveland, that prompted me to find a POTS specialist. My mom and I researched it and we came up with–you guessed it–Cleveland Clinic. So we called, I got put on the waiting list, I waited and waited and waited until I finally got my appointment. In the meantime, I did my best to suffer through my symptoms: full-body exhaustion, tachycardia, shortness of breath, and weakness while upright and doing simple daily tasks, lightheadedness and tunnel vision upon standing up, impenetrable brain fog, chronic foot pain, exercise intolerance, and digestion issues.
I first noticed something wrong with my body after I’d been laid up for a whole summer with a pinched nerve in my lower back. Getting that diagnosis had been a project, too. 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.
But that wasn’t the only thing different about me. My heart almost always raced, and it only slowed when I sat, or better yet, lay 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 as we walked, huffing and puffing and bringing up the rear with my tachycardic heart, I began to get scared. The fear only truly sank in after a bad bout of the flu, followed promptly by pneumonia when those symptoms intensified. I can still recall the moment when I knew I needed to pay a cardiologist a visit. It was around February of 2017 when I’d tried running for the first time after my pinched nerve injury, several weeks after I’d recovered from the flu and pneumonia. I returned to my car after my sorry excuse for a run, my pulse stubbornly high, and I couldn’t 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. No–at 22, I was too young. But something was definitely wrong with me.
Long story short, the cardiologist couldn’t find anything wrong with me. He ran tests, did blood work, examined me, 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 probably predicting–based on what you now know about me–that this didn’t alleviate my symptoms. You’d be correct.
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, even though I still felt like crap. My endocrinologist, who I see yearly for other conditions, shattered this perception when I came to his office for my annual appointment. I frazzled his nurse, who took my pulse and announced it was 120 bpm. He was 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. A type of dysautonomia, or dysfunction of the autonomic nervous system. I googled it like any normal person would as soon as I got home. It sounded exactly like what I was going through. Finally! A name for what I was experiencing! And 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 to believe that nothing was wrong with me. He repeated testing and still found nothing abnormal or worth any further investigating. I went back for a third appointment several months later after seeing no improvement. 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. During this appointment, he maintained that he couldn’t find a systemic cause for the symptoms I was experiencing. He asked me if I was happy with my life. I never went back to his office again.
The next place I sought help from was the Cleveland Clinic. I was nervous. Terrified, even. Honestly, I expected to be tossed aside again, told I was crazy and that I required a good dose of cognitive behavioral therapy. However, the provider I saw in Cleveland’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 didn’t rush me, even though I brought a giant binder filled with every test result I’d ever gotten in my life. He thanked me for coming and told me the most wonderful news: He believed me. And he also believed that I had POTS and that he could help me. He ordered a slew of testing to confirm it immediately.
As if my journey could 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 that abnormal. Additional initial 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. They could see what causes my symptoms (significant venous pooling in the lower half of my body due to insufficient vasoconstriction, among other findings), but they could not find a cause for why my body reacts this way.
Now, a year after I first went to the Cleveland Clinic, I can happily say that my health has greatly improved. Since, I’ve been getting better, finding an exact cause for my POTS has become less important to me. No, I am still not symptom-free, and with POTS being an incurable syndrome, I expect I will always have symptoms to a degree and bad spells now and then. But the excellent news is, my good days far outweigh my bad days now. I am getting back to doing the things I did before I fell ill. I’m drinking a ton of water, eating more salt than I ever thought a person should, exercising strictly, and taking pyridostigmine 2-3 times a day. I’ve just finished graduate school and earned my MA in English with a concentration in Creative Writing. Now, I’m working as a freelance writer and doing what I love every day, on my own time and terms. I plan to move to New York City soon, and I’m SO ready for a new chapter in my life to begin!
I want to share this one last thing…
Even growing up I had my fair share of hardships with my body, during which 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” instead. 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 setbacks and challenges with the right knowledge and management tools. It’s taught me to have hope, perseverance, and patience.
I hope my story empowers other POTS patients. I hope this blog can be used as an educational platform for the syndrome. 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. Instead, It means you have to become a master of your own unique POTS case to live your life to its fullest potential. See what I did there? Wink. Wink.
Please share my story with anyone you may know of who either suffers from or believes they have POTS. When I was first diagnosed, I felt so alone and wished there was someone who understood what I was going through. Let them see they are not alone. Thank you. And thank you for taking the time to read my story to its end! I know it was a long one.