Imagine feeling like you’re going to faint almost every time you stand up, or having to lie down after doing something as simple as showering. That’s what it’s like to have postural orthostatic tachycardia syndrome, or POTS. Not a disease but rather a collection of symptoms, POTS is a type of dysautonomia, which is an umbrella term for dysfunctions of the autonomic nervous system. With POTS, the brain’s mechanism for regulating blood flow when you stand up malfunctions, resulting in symptoms such as a racing heartbeat, extreme fatigue and lightheadedness that can last for as long as you stay upright.
I first felt those symptoms seven years ago, when I was 19. I was working part-time with disabled kids and teenagers while studying at British Columbia’s Simon Fraser University; my dream was to become a high school special ed teacher. I caught a bad case of mono and though I recovered from the virus, I never got my energy back. I felt exhausted constantly, and any time I was standing, I felt sick and my heart raced. My favourite place to be was in bed because that’s where I felt my best. I had to put work and school on hold for months until the severity of my symptoms decreased.
Mild versions of what I now know were POTS symptoms persisted over the next three years. I was diagnosed with everything from irritable bowel syndrome to chronic fatigue to anxiety and depression. While none of these conditions accurately captured what I was experiencing, doctors didn’t seem interested in exploring other illnesses once they’d made their diagnoses.
Then, in 2013, a norovirus caused my symptoms to dramatically worsen. I started fainting and my vision would go if I had to stand still for too long. I quit school, stopped working and went on disability. At only 22 years old, I found myself having to grieve the loss of my hopes and dreams. I was also becoming increasingly concerned about my health. “What is wrong with me?” I would wonder as I researched my symptoms.
Around the same time, a high school friend of mine was diagnosed with POTS, which I’d never heard of. I looked it up online and what I read was eerie. The descriptions were exactly what I was experiencing. I printed out some of the articles and brought them to my GP. He’d never heard of POTS, but agreed the possibility should be explored. The cardiologist he referred me to was initially dismissive, even saying that POTS wasn’t a real condition. Then I did one of the standard tests for the syndrome, which involved measuring my heart rate and blood pressure at specific intervals after I moved from lying down to standing up. When he saw my results, the cardiologist apologized to me. He admitted that he’d dismissed POTS because he wasn’t familiar with it.
I believe a lack of knowledge about POTS in the medical community is why I essentially ended up diagnosing myself. The syndrome, which mainly impacts women of childbearing age, was only named in 1993. It is often triggered by a virus, though some people seem to have certain underlying genetic conditions, or begin showing symptoms after sustaining a concussion.
Living with POTS involves managing its symptoms, and these can vary dramatically in severity. I’ve met people online who have run a half-marathon and others who can’t even get out of bed. My symptoms are fairly severe and keep me from working, which is true for about 25 percent of POTS patients. I spend most of my days in the Port Coquitlam home that I share with my husband of six years and two roommates. I rest a lot; I also drink lots of water, eat lots of salt, and take medications, one of which helps restricts my blood vessels while the other fights the “brain fog” that’s common with POTS.
Exercise is generally considered to be the best treatment. I try to use my rowing machine and recumbent bike daily, though lately I’ve been struggling because I’ve been feeling increasingly sick. To combat this, I’ve started having weekly IV saline transfusions. In the past this treatment has brought a remarkable, though temporary, improvement in my symptoms. Right now it’s just a short-term solution; receiving transfusions for more than a few months requires the insertion of a central line catheter.
I find it weird when people say to me, “I’m so sad for you, your life is so hard.” Yes, POTS affects every part of my life, but despite that, I’ve found ways to make it meaningful. While I was devastated when I first went on disability, I eventually realized that there are so many things that I can do, particularly with my computer. Through it I volunteer with my church, talk to my friends and try to spread POTS awareness and support through my Facebook group and blog. I’ve also taught myself Photoshop and how to fix and update computer hardware.
It is possible for POTS to resolve itself — researchers don’t know how or why this happens — or for it to decrease in severity. While I’m optimistic that I will recover from POTS, I’m not setting any specific goals; I’ve been disappointed too often in the past. But I will admit that I would love to go back to school one day. For now, I’m focused on the present and each day I ask God how I can live to the fullest and help others.
Around 100,000 Canadians are thought to have POTS, though frequent misdiagnoses make that a hard figure to estimate. If you suspect you might have it, visit the Dysautonomia International website and talk to your doctor. Just be prepared to have to do some educating of others on what exactly POTS is.
Lisa Tschetter, 26, is a lifelong resident of British Columbia’s Lower Mainland. An animal lover, she has two goldfish, Fred and George, and enjoys spending time with her roommate’s dog, Jessie.
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