Friday, May 27, 2011

Of Hearts, Minds and Bodies

I've always instinctively known my chronic struggles with physical endurance were more than due to being "out of shape"; and that, no matter how many hours I spent at the gym, or how many miles per week I walked (at one point in college it was about fifteen), I wasn't seeing improvement. After months of battling a daily climb uphill en route to campus or regularly walking up flights of stairs, I still dreaded the post-exertion malaise I knew would inevitably result.

Was something wrong with my heart? There were early signs: By five, I couldn't keep up on family walks and cried to be carried, leading my parents to fear I had become the spoiled youngest child. At six, I had to drop out of gymnastics. Throughout elementary school, I could never run the mile in P.E. As a teenager, whenever
 all the benches and seats were already occupied, I'd sit on unsanitary grounds in subway stations, airports and bus stops to wait (and on more than one occasion, eyes rolled at me). 

I secretly envied the ease in which the elderly were offered seats by younger generations, and knew nobody would give up their seat for a barely-adult, rail-thin female who showed no outward signs of illness. Sitting on the ground--whether a sidewalk, the carpeted floor of a subway train, or--awkwardly--standing-room-only music venues where thousands would surround and borderline trample me--became the norm. And this was beyond anything exercise could fix. I knew.

It turns out there's a condition called Postural Orthostatic Tachycardia Syndrome (POTS) which means, put simply, that when a person shifts from a sitting to standing position, their heart rate spikes, their blood pressure drops, and the autonomic nervous system fails to regulate cerebral levels of blood, epinephrine and norepinephrine. (Okay, that wasn't "simple", but there's more complex descriptions on Google if you're curious). Because blood flow does not adequately reach the brain to perform its hormonal balancing act, the standing position can trigger anxiety and weakness, among others.

Adrenal insufficiency, due to chronic stress or emotional trauma, can cause POTS, as can chronic viral or bacterial infections, and there's indication it could be genetic. I'm still not sure if it's the heart itself or the veins that perform POTS' mechanisms, but I did learn that reduced venous (vein) return of blood causes symptoms, and that venous return is reduced when you have venous pooling (blood collecting in one spot). Well, venous pooling sounds to me a lot like hypercoagulation, a blood thickening and potential for clots that is caused by Lyme disease (with which I've been diagnosed thru blood tests). Are you following me? I know this gets confusing.

So something is wrong with my circulatory system. But wait, I saw a cardiologist when I was in high school after a series of chest pains left me thinking I was having mild heart attacks. The doctor attached wires to my chest with suction cups and performed a "stress test" which came back normal. Upon further testing, he diagnosed me with mitral valve prolapse and said it was nothing to worry about and I'd just have to live with it. But why didn't he detect my POTS?

Sadly, it's nothing new. Specialists missed a lot of things throughout my lifetime. For example, endocrinologists failed to diagnose me with Hashimoto's disease until this year, even though my thyroid levels were down one year and up the next. And allergists (and yes, there were several) never questioned my diet, but pointedly incriminated my cats and dust, while incapacitating me with medications and shots. (Can you imagine? An allergist who doesn't even question if dairy or gluten can make my nose constantly run?) My list of specialists who failed me is truly endless.

It's not just that they misdiagnosed me. They never once looked at my health holistically, asked what I ate or what supplements I took. For instance, I never had a single doctor suggest I take B vitamin complex and Vitamin C for my sinus inflammation (both of which, when taken together, I've discovered reduce my nasal inflammation and mucous production at least three times as well as any allergy pill on the market). And never did a psychiatrist (of which I've seen at least four) test my blood serotonin levels or recommend one of the plethora of natural serotonin-boosting supplements or foods. The ease in which doctors (not just psychiatrists) dole out prescriptions for anti-depressants rather than checking for underlying, physical causes of depression, disappoints me. No, that would be an understatement. It shakes me to the core... it sickens and poisons my otherwise natural affection for humanity.

I didn't intend for this entry to deviate in this direction, but now that it has, I'll leave it and end on this note. Please do not put your trust in doctors. Put your trust in your intuition first and foremost, and spend your lifetime seeking truth and information. I honestly believe the last person on earth to provide you with that truth might be a doctor. (I know, I'm biased and jaded... but with good reason).


  1. I love you Mama with all my heart. We have walked the same road you and I. I too have lost some of my trust in humanity and that shakes me to my core as well. I know that we grow and change through this horrible disease. All we have is each other, but I hope and pray others will begin to awaken. We are strong magical women. xoxo Devi