Saturday, May 18, 2013

Autonomic Testing

So... I have TONS to catch up on!

Several weeks ago, I started researching doctors in this area who deal with POTS. After much searching, it appears that, aside from the doctor who I've already seen, there is only ONE other doctor in the entire state who specializes in dysautonomia, Dr. House.

So I called him, made an appointment, and my mom and I made the trek out to his office.

First I saw his Nurse Practitioner, who took a detailed history (which took nearly an hour. My story is LONG and complicated). Then, I saw Dr. House (who, although he doesn't possess a single physical characteristic of Dr. Gregory house, shares many of his personality traits). Both Dr. House and his NP were suspicious that I may have a genetic disorder, but didn't want to make any assumptions or diagnoses, so I would have to see a geneticist.

I told him that my feet turn purple, so Dr. House asked me to stand perfectly still for a few minutes while we talked so he could observe if blood pools in my extremities when I stand. After about two minutes, I started shaking all over and feeling weird. My mom noticed that I had quit "tracking" with the conversation, and asked me if I needed to lay down. She had to ask me a couple times before the message got through to my foggy brain, as by this time, I was feeling very unwell and lightheaded. My mom and the doctor quickly laid me down on the exam table, where I proceeded to turn bright red, break out into a sweat, and shake all over. Embarrassing....

More POTS!
As I laid on the table, Dr. House held up one of my legs. I recovered after a few minutes of laying flat, and we observed the difference in my leg color. The flat leg looked fairly normal, but the other leg was a deep purple color. Dr. House told me that whenever I stand up, he estimated that over 3 of the 5 or so liters of blood I have pools in my legs. In order for me to not pass out due to this very low blood volume, my body activates my sympathetic nervous system (the part of the nervous system responsible for the "fight-or-flight" reaction controlled by adrenaline). This results in my POTS symptoms - the racing heart, shaking, sweating, etc.

He said that there are many treatments for POTS, but in order to choose the right ones, he wanted to do a very complete and thorough battery of tests. I protested quite a bit, as medical tests are something that I simply despise at this point in time. I was able to finagle my way out of a few of them, but for the most part, he got his way. He said he wanted to know WHY I have POTS - could be due to  deconditioning, malnutrition, a structural or electrical problem with the heart, peripheral neuropathy, etc.

His nice nurse scheduled me for the tests - two full days of testing! The two days ended up spilling into three. I completed the testing last Wednesday, Thursday and Friday.

It was quite a work up. I was tested literally from the crown of my head to the tops of my feet. I thought that I'd had pretty much every medical test imaginable during my several year journey with illness, but in those three days of testing, I was hooked up to machines I'd never seen before and had tests I'd never even heard of. I had an EEG (on right).

I also had not one, but TWO different stress tests (see left), I was strapped to a table for a tilt test, had electrodes attached to my legs and feet to measure my sweating, heat, cold, and pain responses, had sonograms of blood vessels in my head, neck, and abdomen, as well as several of my heart at different times and in different positions after doing different activities. The testing lasted literally 12.5 hours the first day, and 9.5 hours the second day. The third day was much more brief, thankfully! At the end of the testing, I met again with Dr. House to hear the verdict! 

Hannah ;)

1 comment:

  1. Thanks for sharing your experiences! I have been reading up on autonomic testing because my little brother is going to go through some similar tests, which is something that scares him a bit. I have been telling him that it can only help him along with my parents.