I learned the most miraculous thing this week, that I am actually not *just* fat and out of shape!
I was recently diagnosed with something called POTS, which stands for Postural Orthostatic Tachycardia Syndrome (A mouthful, I KNOW). What’s THAT, you ask? “Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing”.
I have been researching this condition some lately, as mine seems to be flaring up, and is making me quite uncomfortable. Every time I stand up I get so lightheaded that I have to hold on to things and wait for it to pass, and several times my vision has gone black and I have nearly passed out (passing out is very common in people with POTS). So in my research I came across this symptom list…
“Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath” I have SO freaking many of those symptoms (fatigue, headaches, lightheadedness, heart palpitations, diminished concentration, tremulousness, pain in the extremities, chest pain and shortness of breath!), although most of them could be caused by any number of the 20183273 other conditions I have. But what got me was the “exercise intolerance” thing, what the heck is that!?! So naturally, being the research junkie that I am, I looked it up…
“Exercise intolerance is a condition where the patient is unable to do physical exercise at the level or for the duration that would be expected of someone in his or her general physical condition, or experiences unusually severe post-exercise pain, fatigue, or other negative effects”
Hmm…that sounds like ME!
For years now I have complained to doctor after doctor that I just can’t exercise, that every time I try I feel absolutely awful and nearly collapse, and of course I get told every single time “well it’s not easy for anyone at first”. Yeah, I say BS. I have literally been unable to function after 8 minutes on a stationary bike at physical therapy, that’s NOT just being out of shape. I once, at age 15, had a cardiac workup because I kept having spells of nearly passing out and heart palpitations at school (hmm…sound familiar?). The doctor sent me for a stress test, a test that involves walking on a treadmill at a gradually increasing speed and incline. During this test my heart rate skyrocketed and they had to stop early…the doctors solution? I was “overweight and needed to join a gym”. *Note, I know most of you don’t know me in person, but I am most definitely not obese, and at age 15 was at an incredibly healthy weight for my body type and DID workout quite frequently! (This doctor ended up blaming my issues on my use of “Xanax” which I have never taken in my life. Idiot.)
So last summer I requested a heart rate monitor for my birthday, as I wanted to begin attempting to work out to lose a little weight (taking 124532 meds for years which ALL have side effects of weight gain will really mess up a girl’s body) and felt I should keep an eye on my heart rate. I was already on a beta blocker at the time, since a while before that my resting heart rate (heart rate after sitting still for at least 15 minutes) was consistently around 115-120 (normal should be 60-80) and it was extremely uncomfortable. So given my history of heart rate issues I wanted to keep an eye on it while working out.
I began lightly jogging a couple of days a week and wore the monitor every time, and every time it would record strange things such as drops down as low as 40 beats per minute while walking, and spikes up to 220 beats per minute when bending over to stretch. I told my doctor and she said the monitor was probably inaccurate. After that, due to increased pain and back issues I was told not to jog anymore, so I started going to the gym to do the elliptical machine. Low and behold, every single time I got on the machine it’s built in heart rate monitor would record my heart rate as 160-170 beats per minute in the first MINUTE I was on the machine. According to The American Heart Association my target heart rate for during a workout is 100-170 beats per minute. Something told me that I should not be hitting the top of that range in the first 60 seconds of a work out…so I asked my doctor, “I have no idea” was her reply. Keep in mind that all of this time I have been on a blood pressure medication designed to lower my pulse, imagine what those numbers could have been like without that pill!
I can’t explain how angry it makes me to know that no less than 5 doctors have missed this, relatively simple to diagnose, condition and instead have chosen to destroy my self image rather than do a simple test. The records I recently received from the first cardiologist 10 years ago indicate that he was heading in the direction of a POTS diagnosis when he randomly decided it must be due to my “xanax use” and told me I was fat and did not need to come back to see him.
The more I read about POTS the more I realize it has been causing a lot of issues that I was writing off as normal with chronic illness or even normal for normal people for years. And needless to say, the more relieved I become to finally have an explanation besides “you’re fat and out of shape” Now to recondition my brain to actually believe it…