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!
XO,
Laurie
As a fellow Potsy and blogger, I’ve followed along and really enjoyed reading your articles on everything from everyday products to milestones like running a 5k! I remember I was in such awe, reading about your success in running, and it gave me a bit of hope that one day I’d be able to do such a thing too. I’m so sorry to hear that you’ve been having a flare season, and even more pained to hear you haven’t been able to touch base with your POTS doctor. I’m on the 6-month waitlist to be seen and know the hard struggle. I wish you all the best with your wedding, and hopefully, the summer brings a steadying of symptoms and some more functionality. Cheers <3
Thank you so much for reading my blog, Kaley, and for sharing those kind words! 🙂 Never lose hope because I’ve learned that living with POTS is very much like being on a roller coaster—you can have good stretches and bad stretches then good ones again. Fingers crossed you can get in with a doctor very soon, and I wish you all the best on your journey! Take care!
Congratulations on your soon to be wedding day! I just came across your blog and wanted to let you know it’s appreciated—putting good things out into this world to be of help to others. Although I’m newer to life with POTS, I do my best to manage multiple other “diagnosis”—Lyme, parasites, IBS-C, cPTSD, endometriosis, uterine fibroids, PMDD, phobias, anxiety, depression, headaches/migraines, Lyme co-infections, sinus tachycardia, etc it goes in. Why do I share that? Because there are other readers that see this website and read people’s comments and it always helps to know, we are never alone. It looks different for us all, but what a beautiful platform to bring all the uniqueness together in effort to help each other on this journey. Some days it’s not easy, some days it’s hopeless, some days it’s manageable, nonetheless, the more days I’m given, the more grateful I am to exercise faith and hope and trust, in something so much more than my earthly body.
Now, if I could just find some hilarious videos to laugh at everyday and get those endorphins flowing.
You’re going to be a stunning bride! Hope you post with photos of your special day. God bless!
Thank you so much for being vulnerable and sharing your story here for others to see! Living with chronic illnesses is a lot to manage but it helps to know that we are not alone. Take care and thanks so much for reading my blog! 🙂 (I will post a wedding blog when I get pictures back!)
So sorry to hear you’re in a flare!!! Sending all the best wishes for your wedding.
My symptoms definitely get worse when I’m stressed. It’s like a feedback loop where I get more symptomatic and then I stress about my symptoms which makes me feel even worse! It’s difficult to manage for sure.
Thank you for the kind words and for reading. 🙂 I think stress is definitely a factor for me, too, and does seem like a feedback loop at times. Thanks for sharing!