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Monday, August 19, 2013

In Which The Clinical Trial Gets Exciting


So… yesterday I finished out weekend 1 of the clinical trial!

Like I detailed in the earlier post, on Friday night, I checked in, had my vital signs taken, and went to bed in the comfy bed under the fuzzy chocolate-colored blanket. I unfortunately had quite a bit of pain, and consequently, didn’t sleep well, but that’s fairly standard for me these days.

A lil dizzy and nauseated...
On Saturday morning, they woke me up dark and early, took my vitals as I stayed lying down in bed, then I took my meds as usual. After an hour or so, they returned, and I stood as they recorded my vitals every two minutes and had me report any symptoms I had. After several minutes, I felt hot and light-headed, so they had me sit down to complete the 15-minute exam. The nurse seemed a bit surprised/disappointed that I had POTS symptoms while on the medicine (further evidence that I eventually need to be on a higher dose).

On Sunday, they repeated this testing with one difference… they did the standing test BEFORE I took my medicine. I didn’t really expect there to be a dramatic difference without the meds. I guess I figured that some of the medicine would somehow still be in my system or something.

That was fun. Not.
But… I was wrong. After standing for about 3 minutes, I got so confused that I couldn’t think of numbers in order to rate my symptoms on a scale from 0-10. I felt terribly hot and nauseous and light-headed and confused. They quickly sat me down, but apparently I continued to turn bright red and was listing badly to the right. They sat another nurse down by my side, but almost immediately decided they needed to lay me down, as I was not able to answer their questions coherently and was about to pass out! They had to direct a fan at my face, cover me with cold washcloths, and have a trash can nearby “just in case.” Just like that, I was (fairly dramatically) disoriented, overheated, nauseated, shaking, sweating through my clothes, and tachycardic (high heart rate)…with all my signs and symptoms being dutifully recorded by the research nurse and her two assistants.

It was rather embarrassing. After I’d recovered a bit, I kept apologizing, but they told me that THEY were sorry – that they did this to me by testing me without my medicine. Once I was less nauseated, they gave me my medicine and recommended that I sleep for a while or at least stay horizontal until the medicine kicked in and my body had a chance to recover! I was able to rest and took a little nap, then, after some paperwork, felt sufficiently recovered to go home!

This is what the trial is hoping to fix...
Part one of the clinical trial is completed! They gave me a bottle of their midodrine to take for the next two weeks, and in two weeks I’ll report back for another Weekend-O-Fun. During Part Two, they will repeat the same procedure with an added twist – one of the days, they will give me a “mystery pill” that may be midodrine, and may be a sugar pill – none of us will know which – and the tests will be performed.

Based on Sunday morning’s reaction, however, I’m fairly certain that we’ll be able to tell if I got the sugar pill or the real McCoy.

As embarrassing as my reaction was, it was quite telling and sobering to realize just how much trouble my body has standing still! Even with the medication, I was unable to stand for more than 6 minutes. Without the medication, standing for a mere three minutes resulted in my body becoming extremely ill quite rapidly. It’s rather unbelievable to me just how dependent my body is on the medication, and just how tough of a time my body has maintaining any sort of homeostasis when I stand still.

What’s curious to me (and probably to others) is that, thanks to many medicines and lifestyle adaptations, I am able to function fairly decently in everyday life these days – I walk around okay, I’m attending school full time now…so if I can do these seemingly more physically challenging activities, how come I can’t stand up? It’s a weird dichotomy to be able to function at a very high level in some ways but to be profoundly disabled in others. It seems contradictory, and even thought I might be faking or imagining how hard it is for me to stand. 

How muscles help pump blood!
Basically… when I’m walking or in motion, my muscles serve as a pump to squeeze the blood back from my extremities, but when I stand, because my blood vessels are too stretchy from my Ehlers-Danlos Syndrome, they dilate, and all the blood pools in my legs. This leaves insufficient blood flow to my brain (causing my confusion) and other organs and muscles, and I feel quite terrible and dizzy. My body thinks, okay, there's less blood volume, so I must work harder to circulate the remaining blood. So it kicks into flight-or-fight mode – leading to shakiness, a rapid heart rate, sweating, hyperventilating, turning red, etc. And I continue to feel awful, and have to go lay down for some time until my body calms down. 

Anyways, that was my Sunday… as usual, nothing is ever boring in the life of Semi Colon!

Hannah ;)

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