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Science

On Dysautonomia, Chronic Illness, and Medical Gaslighting

I’ve always considered myself something of a politically active individual. I’m part of some local grassroots movements and political party committees; however, when I say my dream is to take a stand, I don’t mean it figuratively- I mean it literally.

In 2008, at twelve, I was called on by my father to rise for the next two rakaat of the taraweeh prayer in Ramadan. Taraweeh translates to “rest” or “relaxation,” and the prayer is observed throughout the nights of Ramadan with intention of having your sins pardoned. Taraweeh is performed in a mosque with men and women, and is led by an imam, the worship leader.

The taraweeh prayer lasts eight or twenty units depending on the school of thought, with each unit encompassing several postural changes in succession following a period of standing still while reciting from the scripture. At the age of twelve I was struggling enough to simply stand still and straight for prayer that I began to protest. As a child, this protesting manifested immaturely; I interpreted my fatigue and dizziness as me being tired (the taraweeh prayer is performed after the sun sets completely at night). This would frequently result in gaslighting, as my father figured I was just being lazy and complacent (not an unreasonable response in my opinion).

By fourteen, I’d found myself waking up on the floor in an awkward position, sometimes bruised, quite a bit for a teenager- approximately twice per month. In addition, I’d frequently experience episodes of pre-syncope of various intensities daily. Pre-syncope is medical terminology for symptoms associated with the sensation that an individual feels when they’re about to faint. These symptoms, for me, include the following:

  • Dizziness
  • Loss of coordination and balance,
  • Blurred vision or temporary blindness,
  • Auditory issues such as ringing or severely muffled hearing,
  • Nausea
  • Blood pooling in lower extremities
  • Rare heart palpitations
  • Loss of muscular strength, stability

At this point, I was being seen by my pediatrician, a young practitioner who made his best attempts at bedside manner but neglected my symptoms. He performed a “poor-man’s” tilt-table test, laying me down and measuring my pulse for thirty seconds before having me stand to repeat measuring. Finally, after complaints of chest pain and a near-perfect ECG, this pediatrician suggested to me that I should try hypnosis, implying that I’m crying sheep.

At this point in my life, I wasn’t mature enough to understand the importance of investigating my own health. Around this time I also began experiencing my first instances of chronic, reoccurring chest pain which was localized around the cardiac region and sometimes would extend down my left arm and around my wrist. I would describe the sensation as being on a spectrum between a dull ache on my good days (2/10), and a piercing pain on my worst (8/10).

It wasn’t until I reached the age of 18 that I sought medical answers to my, by this point, apparently abnormal physiology. After my pediatrician instructed me to “try hypnosis,” with the straightest face I’ve ever seen, to remedy my symptoms. It took me six years to force myself to take the plunge into what I’d soon discover to be chronic illness management. Like many dysautonomia patients, oftentimes a diagnosis doesn’t come until several years after onset of symptoms for reasons such as practitioners hesitating to diagnose a chronic, incurable condition, and symptoms being so varied and encompassing of so many organ systems that it eludes treatment providers.

Chronic illness is frustrating, amongst other things, but living with it and not having a formal diagnosis creates more issues than it solves. It ultimately only took one board certified cardiologist under one minute to diagnose me with Postural Orthostatic Tachycardia Syndrome. It was a double-edged sword- I was relieved by the medical literature I could now examine to better understand my condition, but the idea of a lifelong, incurable condition was a source of much stress and anxiety for me. After my first appointment with my new cardiologist, I was referred to the local hospital for a formal tilt-table test, which involves being strapped to a table with heart rate and blood pressure monitors, amongst other various parameter tests. My cardiologist debriefed me prior to being tilted upright, explaining the procedure and monitors to me, and how it would be an approximately 30 minute procedure.

My heart rate skyrocketed from the 70s to the 120 range within a moment from my change in orientation, and my doctor stopped the test. He approached me from behind the half-wall in the next room over with a confident expression- almost a smirk- and said “My friend, we don’t need to continue. You have POTS.”

A diagnosis of Postural Orthostatic Tachycardia Syndrome is made when the following symptoms occur (diagnostic criteria pulled from https://www.potsuk.org/diagnosis):

  • A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing
  • Those aged 12-19 years require an increase of at least 40 beats per minute
  • These criteria may not apply to those with a low heart rate when resting
  • There is usually no drop in blood pressure on standing

The following medical procedures and tests may be necessary to diagnose an individual with POTS:

  • Echocardiography (ECG)
  • The active stand test
  • The head-up tilt-table test
  • An echocardiogram (ultrasound of the cardiac region)
  • Holter monitoring
  • Electroencephalogram (EEG)
  • Autonomic functioning testing

From the time I was twelve and discovered my inability to stand up and stand still without discomfort or worse, until now, at the age of 24, I’ve had a million-dollar medical work-up (according to one of my cardiologists, whom dismissed my symptoms as dehydration). Although he was kind, wise, and pleasant to work with, unfortunately my original cardiologist was too far from home when I would return from college; I had to find an alternative medical provider to monitor my case. From a multitude of ultrasounds and electrocardiograms, to an implantable loop recorder for 24 hour monitoring mounted within the fascia of the skin in my cardiac region, I received a different label and different diagnosis from each new doctor I encountered on my journey to stand up.

Four primary care physicians, three cardiologists, an electrophysiologist, two neurologists, a gastroenterologist and a psychiatrist or five later, I’ve finally found a physician who is as equal in compassion and bedside manner as she is in competency and expertise regarding dysautonomia. I wasn’t quite able to surpass the medical gaslighting (implying my symptoms are psychosomatic, or caused by anxiety) by unaware physicians. It wasn’t until I experienced the worst chest pain of my life and drove myself to an emergency room an hour-and-a-half away from home out of desperation to be taken seriously that I found the doctor for me.

When I arrived in the ER that day, at Phelps Memorial Hospital in Sleepy Hollow, NY, I was greeted by a familiar attending- the father of one of my coworkers. In fact, he was the reason I zipped down to Tarrytown to begin with- I had met him prior at my friend’s college graduation, and knew he would feel compelled to help me personally after our discussions over catered sub sandwiches. I feel this is important to note because all too often are our physicians desensitized to heart-felt compassion for their patients because of the nature of the discipline and the system of medical care we have in place. Our healthcare system focuses largely on profits and insurance documentation and less so on patient wellness- that’s an issue I will be writing about further later on in another article.

The attending drew the curtain, took a gander at me and paused, then immediately equipped his “let’s get to work” expression. He weren’t blind to my history- I came prepared with a literal binder of medical test records. After ruling out pulmonary embolism, attempting to treat the pain with aspirin, and eventually moving to a narcotic, he returned to request my status and found I was still in bad shape. That day would be my first experience with panic-inducing cardiac pain. The attending comforted me verbally, indicated to the physician assistant to start pouring over my records, and returned to the nurse’s station to make a phone call.

Six hours later at approximately 7pm, his phone call respectfully peeks her head in to introduce herself. She had an aura of relief, and I could tell she had just left her private practice down the road after a long day of seeing patients to have a look at me. Her first message: you are not at any current risk of a heart attack; her second, to inquire if I’ve eaten at all. The bags under her youthful, but veteran eyes suggested to me that she had exactly what I needed in a medical investigator- grit, and determination to solve the problem.

After a momentary discussion about my history, diagnosis, and current medication regimen, I requested to use the restroom. She protested, citing my postural orientation concerns, and wanted me to walk with somebody. Of course, we didn’t make it that far at all, as the moment I leaned forward from the hospital bed, my heart rate again skyrocketed 30 beats per minute- I didn’t even stand up yet!

After six months of treatment with my new cardiologist, after the fiasco at Phelps, she has dedicated much time to my treatment alongside her team. With my implantable loop recorder I’m less anxious about possible arrhythmias, and on the treatment regimen prescribed, I’m able to operate at an (almost) normal capacity, minus cardio exercise and some difficulty navigating staircases. I still experience pre-syncope on an almost daily basis, suffer from rapid-onset acute fatigue, and struggle with other inconveniences physiologically, but all-in-all I’m floored to have a physician who is able and willing to help me. I’m looking forward to further investigation into my wildly misunderstood condition that may lead to a better understanding of its origin and prognosis.

Don’t settle for doctors medically gaslighting you and insisting that your symptoms are sourced from anxiety, or stress. Not to discount the two, but a bad trade on the stock market doesn’t necessarily insinuate the development of chronic symptoms that infringe on daily activity and require lifestyle changes.

Take charge of your own health. Read peer-reviewed scientific studies. See what other doctors and scientists have to say about your condition- but most importantly, discuss with others who share the same diagnosis. Oftentimes you’ll find that things like waking up with cold sweats, fainting in the shower under hot enough water, or even morning nausea and sickness are linked to your chronic illness/dysautonomia, and should be brought to a medical provider’s attention appropriately.

Nobody cares about your health more than you- don’t ever forget that.