Life with Irritable Heart Syndrome (POTS)
Today is the last day of Dysautonomia Awareness Month. I have been diagnosed with a type of Dysautonomia known as Postural orthostatic tachycardia syndrome, aka POTS.
When I was working on my Disability Studies senior research project, I loved learning about earlier terms for chronic illnesses we have today. My favorite name was “Irritable Heart Syndrome.” This is now thought to be an early name for POTS, along with “Effort Syndrome” (my second favorite name), Da Costa's Syndrome (for the doctor who discovered it, Jacob Mendes Da Costa) and “Soldier’s Heart” (because many soldiers had it). Symptoms included orthostatic intolerance, fatigue upon exertion, palpitations, sweating, chest pain, and shortness of breath. “Irritable Heart Syndrome” was likely also used to describe similar conditions impacting the heart and causing similar symptoms. As an actual diagnosis, “POTS” is very young, as “Postural Tachycardia Syndrome” was first used in the 80’s before the addition of Orthostatic in the 90s.
“Irritable Heart Syndrome” is my favorite term because it describes the experience of POTS so well. We stand up, stand too long, or move too much - our hearts speed up an abnormal amount and cause all sorts of problems for us. Sometimes we can feel our hearts beating too fast and that is distressing, other times we don't even realize our heart rate was fast until we faint. “Effort Syndrome” is great as well because some days it can feel impossible to do anything with POTS without your symptoms flaring up. Any exertion can trigger your heart rate and make you want to lie down for the rest of the day. Some would of course likely use that name against us, as if we're just “too lazy” to put in effort. Any person with a disability or chronic illness has heard that one before.
If you don't know what POTS is, Dysautonomia International defines it as “a common autonomic nervous system disorder characterized by an excessively fast heart rate and symptoms of lightheadedness upon standing.” It can occur on its own or it can occur with multiple chronic illnesses, including Ehlers Danlos, Long COVID, ME, and certain autoimmune diseases. Every patient will have different symptoms and require a different combination of treatments and lifestyle changes. In addition to the heart rate changes that occur while standing up, Dysautonomia International lists the following common symptoms: “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.”
I don't know when my symptoms of POTS started exactly. The first time I fainted, I was in high school. I was walking, and the next I knew I was on the floor. As an adult, doctors have recorded many occasions where my pulse was racing. Instead of looking into it more, they just assumed I tended to have a faster pulse. And then eventually, for a while, it said “low blood pressure” in my chart, and that was presumed to be why I had fainted in the past.
Meanwhile, I fainted several more times and would often “almost faint” (a symptom known as presyncope - syncope means fainting) many more. The worst fainting episode, I fell on the pavement and got a nosebleed. Another time I fainted during an eye appointment. I had waited months to see a specialist about my blurry vision, and instead had to have that appointment rescheduled because I was rushed to the ER. They found nothing concerning in the ER, thankfully, but I was still left baffled as to why I fainted. I stopped thinking about it for a few months, until I bought up a pulse oximeter to check my pulse during what I thought was a case of COVID. My COVID PCR test thankfully came back negative, but I noticed my pulse got significantly faster when I stood up. Because I had heard of POTS, I started to look into symptoms and diagnosis criteria. I realized I had a number of POTS symptoms, and that this had been the case for a while now. I brought up my symptoms and my pulse measurements with my doctor. Thankfully, he listened to me and confirmed that my symptoms and the amount my heart rate increases when I stand meet the criteria of a diagnosis. He prescribed me a medication, Fludrocortisone, and gave me some other recommendations, such as increasing my salt/electrolyte intake and my water intake and wearing compression socks.
As I learned more about POTS after my diagnosis, I was able to finally have an explanation for symptoms I struggled with for years. Temperature sensitivity (especially heat), unexplained dizziness, feeling like I was about to faint without actually fainting, a very specific painful heavy feeling in my legs if I stood still too long. It is even possible that the constant fatigue I am still learning how to manage is at least partially from POTS. I am not going to pretend that having a diagnosis and treatment fixed everything. I am still learning how to manage a lot of my symptoms. I am not free of flare-ups, and I may never be totally free of them: this is the reality of many chronic illnesses.
You might have heard of POTS because many people with Long COVID are getting it. It's also important to know that COVID infections can make existing POTS conditions worse. If I have anything to demand of the world on Dysautonomia Awareness Month (and every month), it's to take COVID precautions seriously if you don't already. Wear a mask (if you're able), demand better air quality, use HEPA filters, demand funding for Long COVID. I'm lucky that I did not get my POTS because of a COVID infection, but that's how many people are getting it now, and they are struggling without proper treatment and more research on Long COVID. If you don't already have POTS, take COVID precautions so you don't get Long COVID - and if you do have POTS, protect yourself so your condition won't be worse (as many patients have reported experiencing during this pandemic). Anecdotally, in the POTS groups I'm in on Facebook, COVID comes up a lot - patients say their symptoms have gotten worse since having COVID, they say they never had POTS until they got COVID, and they worry about getting it again and losing any progress they have made. Wearing a mask, testing when you feel sick or have been exposed, and staying home when you feel sick or have been exposed are the best things you can do for any POTS patients around you, so our symptoms don't get worse. And keep pushing hospitals to require masks and demanding mask use from the doctors you see.
Lastly, there's a lot more work to be done to improve the lives of POTS patients. We need access to good accomodations, and legally we are entitled to them, but that doesn't change the fact that patients are denied accommodations, or not believed about their symptoms if they don't have a diagnosis yet. Many POTS patients need to sit down more frequently than others - and unfortunately, our anti-rest society is really weird to us about it. Someone shouldn't have to disclose that they have POTS every single time they have that need, especially when for us, sitting is often a necessity in order to avoid fainting or feeling dizzy. Doctors need to do better about diagnosing POTS. In the Facebook groups I'm in, POTS patients frequently talk about having their symptoms dismissed as all in their heads or being told they couldn't possibly have POTS by a doctor who clearly does not understand what POTS is. Being a doctor doesn't automatically make you an expert on every chronic illness under the sun, and doctors still need to do the work of keeping up with research. When a chronic illness is becoming alarmingly more frequent, it is unacceptable to be stating outdated information on an illness as fact. It takes five to seven years to receive a POTS diagnosis. Five to seven years of medical gaslighting and struggling without answers. That is unacceptable, and it needs to change.
References
Dysautonomia international: Postural orthostatic tachycardia syndrome. https://www.dysautonomiainternational.org/page.php?ID=30
Klaas, K., & Burkholder, D. (2017). Da costa’s syndrome and postural tachycardia syndrome: A rose by any other name? (P2.031). Neurology, 88(16_supplement). https://doi.org/10.1212/wnl.88.16_supplement.p2.031
Meenakshisundaram, C., Moustafa, A., Ranabothu, M., Maraey, A., & Grubb, B. (2024). Impact of covid-19 infection on baseline autonomic symptoms in patients with preexisting postural tachycardia syndrome and orthostatic intolerance: A retrospective study. The American Journal of the Medical Sciences, 367(5), 323–327. https://doi.org/10.1016/j.amjms.2023.12.011
Smith, H. (2024). Pots and covid-19: What is the link? Medical News Today. https://www.medicalnewstoday.com/articles/pots-syndrome-and-covid-19