POTS stories

Caroline Barr's Story | Living with POTS as a PA

Caroline is a married physician assistant living in Charleston, South Carolina. She will soon start a fellowship in neurology at Medical University of South Carolina (where she went to PA school!) and is ultimately hoping to start an autonomic clinic there. While she enjoys being a PA, Caroline has a strong passion for writing (mostly non-fiction) and has always been torn between the two ends of this spectrum, hoping to find a way to join the two in a unique, fulfilling way.

What is your story to becoming diagnosed with POTS?

I was diagnosed with POTS in May of this year, after about 5 months of awful symptoms that impacted my ability to do my job as a PA in Rochester. I was told repeatedly by primary care providers and hospitalists that my symptoms were all in my head. One hospitalist, upon first meeting me, even went so far as to say, "You look like you're having a panic attack!" when in fact I had just eaten breakfast, laying mostly flat in my hospital bed. I guess something in my breakfast triggered my heart rate. I did not know what POTS was at the time, but I knew my body enough to know that my symptoms were not stemming from anxiety. The entire situation gave me intense anxiety, self-doubt, and distrust of other medical providers.

I am thankful that my "gut" instinct, as well as medical training prompted me to persist in requesting lab work, specialist referrals, and imaging. because something was not right and I could no longer contribute/care for my patients effectively, spend time with friends, or exercise. Prior to becoming sick, I was an avid runner/power yogi. This all changed as symptoms picked up, and I chose rest over activity, again and again and again. This led to deconditioning.

If my story seems a little different from most, or just different in general, its probably because I'm still not sure what caused my POTS to start up like it did. I broke out with a shingles rash about 2 weeks prior to the most severe symptoms, but this is a chicken vs. the egg type of situation when I look back on it. Did I get shingles due to POTS, or vice versa? Because, I can look back to the preceding weeks, months, and even random special occasions when definitely, POTS was leaving its mark, I just didn't know what it was! I thought it was just me. I've since had shingles again, in a different location, so, who really knows (at this point!)?

I luckily fell into the hands of a cardiologist who specializes in dysautonomia and was assured that no, this was not all in my head. Having to sit down in the shower, having to rest after taking a shower, becoming short of breath when walking up steps- this was not normal. It was very real, and I heard loud and clear that to fight POTS, would only result in more fatigue. Its best to give into POTS and just rest, they said; also exercise, they said. Even if that is just walking around your apartment and unloading the dishwasher...

I've since moved to Charleston, where I'm followed by another cardiologist who specializes in dysautonomias. I'm also followed by a neurologist at the Mayo Clinic in Jacksonville, Florida, but have a few more weeks before I return there for a slew of testing. I'm very much looking forward to this as I have not found a medication regimen that has "worked" for me. Almost anything "stressful" (to include a cross country move, resigning from my job, shingles, an ear infection, heat, etc. etc.) triggers my symptoms, and it seems that my symptoms are being triggered quite frequently these days.

How has POTS impacted your life?

POTS has impacted my life unlike anything, I guess except for meeting my husband/being married (which was a good impact!). Most of the POTS impact has been unwanted. I am hopeful that in time I will look back and see that this has all happened for the good. I've been more aware of the importance of listening to patients, and giving them the benefit of the doubt when they present with complaints that my medical knowledge might suggest is anxiety/impossible/a lie. The truth is medicine is not the end all be all, and patients can teach medical providers a great deal about conditions we've yet to even discover.

What are your main symptoms?

My main symptoms are dizziness, nausea (I don't really understand this one), of course a racing heart, fatigue, chest tightness, and I guess you could say immunocompromised as it seems that I catch any virus/infection that walks past me.

What are your hobbies?

My hobbies have changed significantly since my diagnosis. I'm not quite back to running (or even walking long periods) or yoga at this time. I've enjoyed knitting, and also playing with/attempting to train my puppy, Lil, who I got just four weeks ago. I suppose that's a hobby in itself!

What have you accomplished since being diagnosed?

In terms of "accomplishments" since diagnosed, I have helped spread awareness for POTS, simply because several family/friends are invested in my health. I have looked into volunteering locally and nationally to help spread awareness as well.

Otherwise, I've accomplished a cross country move, and I got the job that ultimately will help me spread further awareness/treat POTS patients in the future.

What piece of advice would you give to others with POTS?

Advice for other POTS patients: you did not give up in reaching your diagnosis, which is a HUGE feat. Keep on getting well, and imagine what you're capable of after what you've been through thus far!

What would you tell others who don't have POTS to help them better understand your condition?

To others: trust us, it's real and we need your support. Please be there for us!

Why is spreading awareness for POTS/dysautonomia important?

I think spreading awareness is important because POTS is way more common than any of us actually know at this point. More research and more accurate treatment regimens need to be developed. More medical providers need to be educated on how to diagnose POTS.