This might be a long thread so bear with me.
About 3 months ago I was diagnosed with POTS (postural orthostatic tachycardia syndrome) from long covid and I would like to share how difficult and frustrating it was to get diagnosed - every step of the way.
About 3 months ago I was diagnosed with POTS (postural orthostatic tachycardia syndrome) from long covid and I would like to share how difficult and frustrating it was to get diagnosed - every step of the way.
It comes with dizziness, rapid heart rate when changing positions, adrenaline rushes, complete caffeine intolerance, insomnia, and overall exhaustion.
It started in Dec, where I would have adrenaline rushes multiple times a night, to the point where I wouldn’t be able to get more than 2-3 hours of sleep. Thinking this was anxiety, I decided to let it play out.
Eventually I decided to try and see a doctor (not having a family doc at the time). The night before my appointment at a “walk in”, I lay down to sleep. My heart rate spiked to 160+ along with what I can only describe as the worst adrenaline rush ever, and would not come down.
I called 9-1-1. At the hospital, they do a battery of tests but don’t have a reason for why my heart rate took off. No guidance on what I should or shouldn’t do. They refer me to a cardiologist for a holter monitor.
A week later, I have the holter monitor on. Have a coffee, go about my life, and then my heart rate takes off again to 160-70. I call 9-1-1 again, go to the hospital, do another series of tests, and again am met with no answers.
I ask the on call physician about POTS - he brushes me off, tells me it’s just anxiety and he can't help me. After back and forth, he agrees to send me to a cardiologist.
The cardio goes over my test results a week later and says he finds nothing. I suggest I have POTS because I’ve recently had two covid infections and ask for a test. He disagrees, tells me it’s anxiety and “you should feel lucky, I see patients with real problems”
He refers me to a psychiatrist with an 8-month long waiting list. Sends me away and refuses to listen to what I have to say. Not satisfied, depressed, desperate and scared, my friends encourage me to not give up. I decide to go to urgent care to start the process all over again.
At this point, I have debilitating symptoms and no healthcare professional seems to take me seriously. I start to treat myself like I have POTS - quit caffeine, alcohol, nicotine, weightlifting, hot showers completely, and my symptoms start to improve but I am miserable.
At urgent care, I meet a compassionate nurse practitioner who right away asks is if anyone has ever tested me for POTS. She administers a “dummy” test, which tests your heart rate in different positions. You need a BPM spike of 30+ to meet the threshold. Mine jumps by almost 50.
She hears me out, listens to everything I have to say, and refers me to a specialist. She also prints off information about the condition, connects me with a family doctor taking patients, shows me a physio who specializes in POTS and other helpful resources.
Fast forward another month, I am still waiting for a specialist but my family doctor has put me on beta blockers and is quarterbacking treatment. It's been life-changing.
Before meds, my resting heart rate was between 95-120 depending on what I was doing and would spike to 160-70 with walks to the bus stop, heavy lifting, hot showers, etc. I’ve been on the medication a month and my resting heart rate is back to the 70s. I feel normal again!
If you’ve made it this far, thank you. I wanted to share on the off chance it resonates. I have a few friends with the same condition and it’s taken them over a year to get a health care practitioner to see them and take them seriously, never mind get on medication.
The moral here is trust yourself, and trust what your body tells you.
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