After 11 long months, I have my first answer. I went to Cleveland yesterday to get the results from my autonomic nervous system testing. I went into the appointment with low expectations, most of all to protect myself. I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything. The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn’t know what it was. I would leave many specialist’s office feeling like a crazy person when I was told my tests were normal, or that they came back “beautiful,” while I was still having crazy symptoms that made me sick.
So I have to admit that with each negative result, I would go home and return to researching what could be making me sick. And as many of you know, my computer would often have to be taken from me because the Internet can be a scary, scary place. A lot of the “possible diagnosis’s” I found that fit my symptoms were terrifying for a worry wart like me.
So yesterday, to protect myself from more frustration, I went in prepared to hear that again, the results were normal. The doctor came in and the first thing he said was, “So, what do you have?” This took me by surprise and I said “Excuse me?” He said again, “So what do you have?” So I went out on a limb and I said (based on my Internet research and what I knew from the tilt table results), “Ummm, I think I could have POTS.” The doctor smiled, stuck out his hand, and shook my hand. He said, “You are good.”
So there it was, my first official diagnosis. Postural Orthostatic Tachychardia Syndrome, a form of dysautonomia. He explained that my QSART test was abnormal, indicating Autonomic dysfunction, and my tilt table results confirmed the diagnosis of POTS.
Basically, the definition of POTS is:
“Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.
(Found on http://www.dinet.org/), which by the way, is a great site to learn a lot more about POTS.
The doctor went over the treatment plan he will be starting me with:
8. I am to begin taking an SSRI (antidepressant) because of the effect that Serotonin has on the Autonomic Nervous System. (I still need to learn more about this)
And to try and find some humor in the whole thing, you can now refer to my sister Allie and I as the POTS and PAN (Polyarteritis Nodosa) sisters. To quote Jimmy Buffett, “If we couldn’t laugh, we would all go insane..”
Now on to the geneticist tomorrow to see about Ehlers Danlos…Stay tuned.
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