Hi, friends! If you’ve been following my blog closely, you may remember that I got engaged last spring. And you may have noticed that I haven’t been posting as often as I normally do. The reason? My life has gotten so chaotic because I am deep into wedding planning (my wedding is in June!) and working full time in a new job. Plus, the stress of it all happening at once has made my POTS symptoms flare up. At least I suspect it’s stress’ fault.
Needless to say, I’ve been dealing with a lot for the last few months!
Back in October, I ran my first 5k since my POTS diagnosis, and I felt like I was on top of the world — unstoppable. Flash forward to now and I am barely running for more than two-minute intervals because my heart rate spikes up to the high 170s, low 180s. And when it gets that high, I get heart palpitations that scare me enough to stop me in my tracks.
Honestly, it’s been really frustrating and disappointing. Because of these symptoms, I’ve had to majorly scale back on my exercise intensity. Now, I go for more walks instead of runs, or I’ll do short intervals of jogging followed by walking. I’ve also added more pilates and floor-based exercises as opposed to high-intensity interval training. (No more burpees or squat jumps for me for the time being.)
And my inability to run long distances isn’t the only way my POTS flare up has presented itself. I’ve had to be really careful about changing positions, especially in the morning, because I’ve had some close calls with fainting. Luckily, I’m a pro now at getting myself down to the floor safely before I can fully blackout. I’m also more tired than I used to be, but again, that’s probably because of stress and the fact that I’ve had little time for myself — wedding planning can really take over your life!
So, because of this shift in my symptoms, I thought it might be a good idea to make a virtual appointment with my Cleveland Clinic provider. But I very soon realized that my provider is no longer listed on my patient portal. I don’t know if that means I’ve been removed from their patient list, but regardless, I’m not able to make an appointment there. *Insert me turning into an even bigger stress ball.
However, I’ve been under the care of my primary care doctor for many years, and she knows all about my medical history, including my POTS diagnosis. So I made an appointment with her instead.
At this appointment, my doctor evaluated my heart rate while lying down and then again while standing. As soon as I stood, she said, “Yep, I can hear your heart rate really pick up there!” And I most definitely felt it, too. It felt like my heart was beating out of my chest, and I got a pounding or rushing feeling of pressure in my head. (This sensation can sometimes be a warning sign of blacking out for me).
I also had screenshots of my what my heart rate was doing during runs — thanks to my Garmin watch — that I showed her. In these photos, you can clearly see how my heart rate went from 138 bpm to 180 bpm within a minute of running. This piece of data was really important for my doctor to see, and it solidified that something was going on to make my POTS worse. And because of how helpful this data can be for doctors to see, I highly suggest that people with POTS monitor their heart rate.
*I also want to note that my heart rate doesn’t do this when I do other forms of exercise, such as biking, using an elliptical, or walking. It’s only when I run.
My primary care doctor wanted to refer me to a POTS neurology center not too far from where I live now to investigate it further. But I’ve had some pretty bad luck. That neurology center is not accepting new POTS patients right now. And my one back-up option — a cardiologist who specializes in POTS — isn’t accepting new patients either.
So, if anyone else is finding it challenging to get care for POTS or even just a POTS diagnosis, I feel you. Because of COVID, more people are developing POTS. And while it is bringing more attention to the syndrome — which is awesome! — it also means there currently aren’t enough specialists to treat us all.
But I’ve been through this before, and I’m more educated on POTS now than I was before I received my diagnosis. I have POTS pro tips that I follow, and I know all the lifestyle modifications and triggers to avoid.
And of course, I’m making sure that I stay on top of my water, electrolyte, and salt intake. Plus, I make sure to move around every hour while I’m working at my desk to keep blood circulating. Even doing some seated marching in place and calf raises in my desk chair helps. I’ve also got my compression leggings and compression socks to put on when I feel extra lightheaded or in pain from blood pooling.
Hopefully, this relapse won’t last too long. I have my fingers crossed that once the wedding has passed and I get more settled in my job, I can get back to living my life with my POTS well under control!
Has anyone else felt like their POTS symptoms are worse during stressful times? Tell me about it in the comments below. And I will happily accept any wedding day advice from fellow POTSies, too. (My ceremony is outside, and while some brides pray for no rain, I’m praying that it’s not a super hot day. Lol. POTS problems.)
Until next time — be well everyone!