Sometime around 2003 (my medical memories are ones I wish to forget) I was diagnosed with a type of Dysautonomia known as Postural Orthostatic Tachycardia Syndrome (POTS) by a neurologist at NYU. I spent a few years really struggling with the low blood pressure, severe “zombie-like” fatigue, racing heart, headaches and other unpleasant symptoms. After managing it on my own for a while, I tried medication which I only stuck with for a few months because I couldn’t lay down during the day (it could dangerously increase blood pressure) and at the same time, I could barely stay awake for more than a few hours at a time.

After a few years, my symptoms magicaly subsided. I had heard of this happening to other patients and was hopeful all my symptoms would abate. I was wrong (as per usual). I was still experiencing a persistent rapid heart rate and constantly felt overheated. I always “ran warm” but this was so extreme, I often wished I could rip my clothes off or jump into a pool of ice water. Oooh, sounds nice.

These two last symptoms continue to this day. My resting heart rate is consistently 90+ and my body is always overly hot even when my hands and feet are freezing cold. So now I wonder: was this ever POTS at all? Is this simply Inappropriate Sinus Tachycardia (IST) or something completely outside my radar?

My heart rythmn is fast, but otherwise normal, I have flutters and palpitations a few times a week and headaches are commonplace. I have pains in my ribs near my heart that keep me from taking a breath without wanting to scream in agony. (I was actually in bed all day yesterday because of this very symptom). I continue to call it all POTS because it was a firm diagnosis at one time and it’s quite common in Ehlers-Danlos patients. However, I suspect IST without a known underlying cause.

On my most recent ER trip for neuropathic pain and difficulty walking, the only test they bothered to conduct was an EKG (which no one ever gave me the results of, by the way). I’m going to assume they saw what they always do: elevated heart rate, but regular rhythm. Great. Now, who can tell me why I don’t even own a proper winter coat (because I’d sweat right through it, of course) and why when I’m trying to sleep, all I can hear is my heart pounding in my head as if it has migrated there?

I so badly need an accesible place to leave and proper medical care. Yet again, my health suffers because I’m disabled. Does that make any sense at all?


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