At eighteen, I backpacked through the Alaskan tundra with five other teenagers alone, got lost in mountain fog, strained a ligament in my knee, and climbed wet, slippery rock faces with a 50-pound backpack for twenty-three days. At nineteen, I navigated my way through the Czech Republic with only my broken German to help me after my train broke down three times and my bus broke down numerous more. At twenty-one, I boarded a train in New Delhi with a severe stomach virus to volunteer in a remote village in rural India by myself. But at twenty-three, I would have panic attacks every time my mom left the apartment to go to the grocery store. I was afraid to take showers and walk upstairs. I was an absolute mess. Where did my adventurous, bold, and completely badass version of myself go?
A year ago I was sitting in an Indian movie theater watching Logan during my Fulbright and I could feel my heart revving up. I looked down at my Fitbit my heartbeat was flying along at 130 beats per minute. As an EMT, I knew that this was fast, but not the worst, so I decided to leave the theater and take a break. It didn’t get better. My heart kept beating faster and faster until it hit 190 beats per minute and stayed that way until all the ER doctors and nurses at a small hospital in Calcutta crowded around me and restarted my heart with adenosine. I was diagnosed with SVT, supraventricular tachycardia, a usually harmless, but incredibly scary, and annoying, heart arrhythmia.
Usually, SVT episodes start and end suddenly, but it never seemed to stop completely for me. Not unless I was laying down. Every time I stood, I could feel my heart beating out of my chest within seconds. I found myself seeing every specialist in Delhi and after several more ER visits and no answers, I was on my way home with a cardiac flight nurse. A day later at Duke, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). POTS is a form of dysautonomia, in which your body has inappropriate nervous system responses after standing, typically shown with a massive increase in heart rate. What a ridiculous chronic and incurable syndrome! They assured me that POTS isn’t dangerous and that it could get better with time, but I went home, petrified.
I was no longer adventurous– I never left my couch. I was no longer bold– I was so afraid of pushing the limit and setting off another SVT event, I didn’t want to test the limits. And I sure wasn’t badass anymore– I had become a boring grandma. My heart rate jumped over 100 beats per minute within seconds of standing and my only prescriptions were water, salt, compression tights, and yes, exercise. I felt hopeless and in a horrible cycle of feeling a symptom, getting anxious about it, then feeling more symptoms because of it and eventually would become paralyzed with fear on the floor with my feet up, hoping my heart doesn’t stop.
When in full flare, I have a syndrome that makes you feel like you are having a constant heart attack, which then spawns a panic attack, and those heart-panic attacks took over my life for most of my first year with POTS. I remember waiting in the airport for my boyfriend at the time to land after his own year abroad in China. I was so excited to see him, I had to use a wheelchair because my heart was freaking out. I then got so nervous about my heart, that I ended up having a panic attack in the airport and it ruined my entire night.
It was that night that I realized I let my anxiety take control of me. It wasn’t just scary situations that ended in panic, but also exciting and happy moments. I became so focused on my body, I couldn’t see anything past my POTS and life seemed pretty grim. But I knew that I needed to find a way to cope. Exposure therapy, CBT, and a great family helps me cope with my health anxiety. But one thing has help more than anything else and that is time.
I knew about POTS before I was diagnosed with it. Having realized this was probably my issue while stuck in an Indian hospital, a lot of my free time was spent on WebMD hoping this wasn’t my fate and praying that I could just have a heart ablation for my SVT, walk away, and not have to deal with scary symptoms for the rest of my life. But here I am, a year later. I still have SVT, I definitely still have POTS, but the anxiety is no longer creating a cage around me and keeping me locked in with my chronic illnesses. Sure, my heart races when I stand, sometimes I get SVTs, and I panic about them at times. But deep down, time has shown me that they will pass eventually and that gives me the patience to ride the flares out.
So you may be asking yourself a few questions: have I regained some of my adventurous, bold, and badass self? Well, I’m now a badass grandma of a twenty-four year old. I wear purple compression hose, I can do 50 minutes on the recumbent bike, I have finished five 1000 piece puzzles in eight months, and can drink nine liters of water in a day. Now that’s a bold act with your bladder.
Update (April 2020): It’s been three years since my diagnosis and I have finally started re-reading my earlier blog posts. I am ecstatic to tell readers who may be worried that they’ll be stuck in this loop of anxiety and symptoms forever that there is hope. It’s been three years and I can eat chocolate again. It’s been three years and I can walk for thirty minutes and stand cooking for hours sometimes. Believe it or not, there are days I don’t even notice something is “wrong” with me, and I put that in quotation marks because I truly believe having POTS has made me a better person. It’s not to say that times don’t get rough — they do. Sometimes it becomes overwhelming because hey, having an incurable illness is a lot. The heat is still a huge problem for me, but it’s gotten so, so much better. The thing is, it’s incredible how far I’ve come so far and that in itself makes me excited for the future.
I haven’t written in this blog for a long time because honestly, POTS is not the main actor on stage anymore in my life. BUT, I will continue here because I don’t want to be that person who leaves the community and be unable to offer support and advice for those in the same spot I was three years ago. I also like having something to go back to when I hit roadblocks to show me that hey, you’ve got this, Heidi. And you know what, you, dear reader, have got this too.
Update (September 2022): I’m five and a half years into this journey and I’m stoked to say that I’m back in school, starting my PhD to become a POTS researcher. Cardiac rehab is still an important part of my life, as is the salt, water, and compression. But I can say that it has become manageable. I know that flares will come and go, but over time I’ve been able to learn how to better navigate them. I never thought I’d be able to go back to work or school full-time in 2017, so I’m so excited to have gotten to this point! I can’t wait to be your future POTS Doc.
Very inspired reading about your journey. You are fortunate that you got diagnosed so quickly. Thanks for the reviews on the drinks. I will pas them on to my daughter who was diagnosed a few months ago.
Thank you for this! I was just diagnosed with POTS. Years of symptoms finally make sense, but I’ve been feeling a little overwhelmed. I appreciate the Juzo recommendation, as I was told to start wearing compression tights but had no idea where to begin. 🙂
Thanks for the read! It can definitely be overwhelming at first, but definitely gets better with time!
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Thank you!! 🙂
Heidi, I’ve only just stumbled across your website, but thank you — thank you — thank you for your posts, especially the update here. I haven’t been able to find many resources that address POTS and anxiety at the same time, and stories about living life without feeling defeated are rarer still. You’ve encouraged me to finally fill the prescription on my compression stockings and look into starting an exercise program once I meet with my cardiologist again in a month. I don’t know if I would have taken the time to do so if you hadn’t shared about your journey. Thank you so much.
Hi Amy! Thanks for reading! If you’re in need of any other type of resources about POTS, just let me know 🙂
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That’s very kind of you! I will. 🙂
Glad to hear you’re adjusting and recovering well from your illness.
Do most POTs sufferers have drops in their blood saturation oxygen levels with or without the tachycardia when they’re upright? Haven’t seen a cardiologist yet (2 months from now) but wondering if this is what I have.
Thanks for sharing your story. I too have PoTS. Nice read.
I am an EMT basic and was just recently diagnosed with POTS… it’s very humbling… and trying … thanks Heidi for the insight that there is hope that I could work toward the chance with time get back on the truck again ….
I enjoyed reading your journey with POTS, it encourages me to stay strong. I am 29 years old and I believe I have had POTS for 1.5 years now but was officially diagnosed September 20, 2022. My cardiologist did all their testing to really be sure that nothing was wrong with my heart then sent me to an Electrophysiologist who had me in for a tilt table test less than a week after our first appointment. It felt both good and bad at the same time to have the doctors tell me that the test was positive, although I knew without a doubt that I had POTS.
It has been a never ending battle since the symptoms started and most days feel like you really have to push to just make it to bedtime (the best time of the day!) but I just started a medication yesterday to lower my heart rate and it felt like I was 95% normal. I could do laundry without feeling like I was gasping for air or go up the stairs without my heart trying to escape my chest, if you know what I mean!
Through all of this, I kept telling my SO that I want to be a doctor haha I have considered being a doctor in the past before all this but I wish I could help others with POTS too! I am currently at home due to POTS so I have been studying UX design to add to my graphic design degree while I get this all under control. If anything, I’d at least like to advocate for those with ‘invisible’ illnesses because I know how it feels to have someone look at you and say “you look fine to me” while my HR is 160+ 😮💨
Anyway! Thank you so much for a little insight on your journey with POTS, I hope you continue to get stronger and I wish you luck with your PhD! 🥰
Hi Kelly, thanks so much for the read! I think becoming a doctor would be great! For me, I’m focusing on baby steps to achieve my goals and dreams, so don’t get turned away from the idea of pursuing something for the now, while having something else you’re working towards for the future. You’ve got this!