4 minute read

Letter from the Publisher

Postural Orthostatic Tachycardia Syndrome (POTS)

“KATHERINE PASSED OUT and we’re having a hard time reviving her. They just called an ambulance.”

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My wife, Maureen, had been grocery shopping for the holidays with our daughter Katherine and her two sisters. The next call came on the way to the hospital. “She’s having a seizure and the EMTs think it might be epilepsy.”

Since we were in the depths of the pandemic, I wasn’t permitted to join them at the ER, so Katherine’s sisters and I sat at home anxiously awaiting updates. It was December 22, 2020— three days before Christmas.

After more than 24 hours and a battery of tests, first at VHC Health and then Children’s National, Katherine (who was 15 at the time) was diagnosed with an anxiety disorder. The doctors at Children’s explained that stress and anxiety from the pandemic had built up and were overwhelming her amygdala, causing what looked like epileptic seizures. In the ensuing weeks, we had follow-up calls and appointments with several neurologists. We also took Katherine to a cardiologist and to her pediatrician. A friend of ours had mentioned a condition called POTS, so we inquired if this could be the source of her problems. We were told, “No, it’s not POTS, she has anxiety,” and she was prescribed anti-anxiety meds and antidepressants. They didn’t help.

Katherine continued to faint and have seizures, often multiple times a day. Maureen and I would be working from home on our respective Zoom calls when we’d hear a loud bang from Katherine’s bedroom upstairs as she hit the floor. The dining room chandelier would start shaking as she seized. We would run upstairs to make sure she wasn’t injured and to keep her safe until the seizure ended.

Our daughter is an extrovert and doesn’t like to be cooped up, so we would take her grocery shopping and on errands. One day at Merrifield Garden Center, she had seven seizures in about 90 minutes. The look on people’s faces as they walked by was a mix of horror, helplessness and sympathy. Katherine fainted at so many grocery stores that she rated their customer service by how attentive the staff is to passed-out customers. (Harris Teeter at the Lee Harrison Shopping Center is No. 1, followed by Trader Joe’s in Clarendon.) So many ambulances were called that she got to know the local EMTs.

After nearly a year, Katherine was correctly diagnosed with POTS in late November 2021. It took more than six months for her to see consistent improvements with her symptoms. Weaning her off the antidepressants proved to be especially tricky and caused serious side effects. To say it was a tense, upsetting time for our family is the understatement of the year.

It’s now been 2 ½ years since Katherine got sick. She’s made amazing progress and hasn’t fainted or had a seizure since November 19, 2022. In the end, she missed more than a month of school, had to drop two classes and make them up over the summers, fainted and had seizures more times than we can count, spent hours and hours at doctors’ appointments, endured all kinds of tests and procedures, some of which were quite painful, and has been forced to make major lifestyle changes. She continues to struggle with fatigue and brain fog, and a simple cold knocks her out for a few days. Despite the challenges, we are thrilled she is graduating with her class and heading to college this fall. Her courage and resilience are amazing, and I remind her every few weeks that she’s my hero.

POTS is a very personal topic for Katherine and our family. We wanted to share our journey (and others’ journeys), and we wanted to get it right. We turned to Adrienne Wichard-Edds, who has been a key contributor to the magazine since it launched in 2011. She did a fantastic job with the story on page 36. I think it is the best piece of journalism on POTS I’ve read. I hope you find it informative and helpful.

As always, please send your thoughts and feedback to me at greg.hamilton@ arlingtonmagazine.com. Our editor, Jenny Sullivan, can be reached at jenny. sullivan@arlingtonmagazine.com. Enjoy the issue and have a great summer.

Greg Hamilton, Publisher