By Cynthia Toussaint.
A recent bout with a vasovagal episode for this woman in pain came as a shocking and near-deadly surprise. It also turned into yet another carnival ride through American over-care, er… healthcare.
Three months ago I woke in the middle of the night with severe pain in my colon area. Concerned that I might have cancer, I fretted not about dying, but about how my pain would be managed while I was dying. When the discomfort didn’t let up, I got out of our hotel bed (we were displaced due to mold damage) and journeyed into the bathroom, making every effort not to disturb John and our sweet kitties in sand land.
By the time I sat down at the vanity, I was struck by hellish nausea. Then I woke up and was so disoriented I had no clue as to where or who I was. In short order I recognized the hotel bathroom and discovered I’d passed out and was slumped over in the sink.
It momentarily occurred to me to call John for help, but the nausea was all-consuming. Then I woke again – and this time I was able to call out. I’d passed out a second time, and discovered I’d fallen backward off the chair and halfway into the bathtub. To this day I feel deep gratitude for not cracking my head open.
Thank goodness John heard me quickly because due to my right arm being broken by a physical therapist, I was stuck. While helping me back to bed, John was alarmed to see a cold sweat covering my body, and my face pale as a ghost.
Because I have a deep distrust for Western healthcare, I didn’t call a doctor. Despite my fear, I woke to the alarm and did my morning swim workout at the Y. Then battling low-level nausea, I put in a full work day that included a radio interview. Though I put up a good front, I was shaken and needed to know what the heck what was going on.
I talked with several friends who were baffled. Then I spoke with my sister in pain, Melinda, who lives on the east coast. Melinda’s as sharp as they come and knows most everything auto-immune. In fact she beats her doctors to new diagnosis. Melinda told me I’d had a vasovagal episode. She explained that I fainted due to a combination of rapid heartbeat (generally caused by intense pain or fear) and sudden plunge in blood pressure. These two conspire to pool blood in the lower extremities. To avoid fainting, I simply had to lie down. That’s why I came to both times I passed out.
I trusted Melinda to know, but when my mom learned of my experience, she shouted into the phone that I needed to call my doctor. I did. What can I say – she’s my mom.
My internist suspected a heart-attack which didn’t surprise me because Western medicine most always assumes the worst and the most costly. I reluctantly went to the ER – and eight hours of tests and blood work later, the doctor released me as a vasovagal episode. But not without a bonus diagnosis. Due to the pain I’d experienced, he told me that I most likely had colon cancer.
The next day I got an emergency call from my hospital telling me that I immediately needed to schedule multiple tests, including a colonoscopy. That, and see a GI doctor pronto. All of this coming from UCLA, a healthcare system renowned for their over-care, a hospital that has twice told me I had breast cancer (DCIS) and would die a terrible death within months if I didn’t take their invasive treatment plan. I refused all of it; that was 15 years ago.
As you’ve probably guessed, I chose to forego the battery of tests and the specialist. When UCLA finally sent me a home colon cancer test a couple of months back, I did it – and no word. Obviously I’m in the clear. Yet again.
A big part of my self-management is knowing when to engage in healthcare – and when not to. For years now, I’ve almost exclusively seen my integrative doctor, a physician who understands pain and fatigue and makes every effort to avoid invasive treatments. A doctor I trust and adore.
Part of our jobs as women in pain is to be wise and educated healthcare consumers. Vasovagal is something to take seriously, especially since many of us experience low blood pressure and intense pain due to our auto-immune disorders. But if I ever experience it again, I won’t go to the ER to potentially become a life-long patient.
Instead, I’ll lie down and put my feet up.
Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.