He would surely work hard devising new and more devious ways to test what ails me.
I did the infamous "tilt-table" test yesterday– yes, on Christmas Eve Day. Why?? Well, we have a very large deductible, which we've endured paying through in 2009. At this moment, there is a short interlude of the long-coveted 100% coverage, so I really wanted to get this horrible test done (surely it cost $5K, but I don't know) before Jan. 1. When the vestibular goddess kicked me to the curb in November, this was a test she wanted done, and they are so booked that Christmas Eve Day was the only option in 2009.
So… This test was to find out if a blood pressure problem, sudden drops in blood pressure, low blood pressure in general, was causing some of my dizziness. This is a thing called POTS (postural orthostatic tachy… i don't know… something like that). Vince has long suspected that I have it, and it's at least part of the puzzle. The neurological god also suggested that this could be a factor– possibly a consequence– of my poor migrainous brain misfiring.
First I met with this.. hm… cardiological goddess, I guess I'll dub her. A tiny, wizened, old lady from Egypt with a maroon Toni Tennille Wig and a twisted hunch back, who is reputed to be the best at figuring out POTS. She exuded both warmth and authority as she meticulously attempted to transcribe my story word for word with her claw-like bent fingers. I started out trying to tell her about the day I had my first vertigo attack. Then she began to type, "The… picnic… began… at noon…." And I thought, "Um… this is going to take a while at this pace." And it did. But eventually, after repeatedly being reminded to slow down, I learned to pace myself by her typing speed and we got through it. She listened to my chest and felt my pulse in my ankles and then sent me off to be tested.
I never like the look of a bed with straps. Am I right? Are you with me? There's something inherently off-putting about it. The two nurses waiting for me– a boss and an younger underling– were kindly and businesslike, got me into a gown. (I was allowed to keep most things on, just not my shirt because the long sleeves wouldn't push all the way up easily.) Getting into bed with my shoes on? But there was a little vertical ledge near my feet, where, when the thing was tipped up, would become a platform to sort of stand on.
The IV is always a problem with me. THis one took three miserable tries, with lots of repositioning and twisty-turning, to find a decent vein. (I was sitting at dinner after this last night and spied Ben's massive sturdy veins from across the table, and thought, "Seriously, I now have vein envy.") They just had to put in a port in case my heart stopped or something like that, but they didn't inject anything into it or take anything out. They tucked me in under a blanket and then strapped me down with big velcro bands and placed two different blood pressure cuffs on me. One the machine would do it automatically every minute, the other the boss nurse would do whenever she felt like it.
The boss nurse lady began, "Now, we're going to ask you to tell us everything that you're experiencing, and to rate it in intensity from zero to ten. Also we can stop at any time, just tell us." (Okay– that part wasn't so Dr. Evil, but the rest was!)
At first the table just tilted 20 degrees, which you wouldn't think would be a big deal, but I instantly felt horrible. Dizzy, nauseated, and just… AGH. The underling nurse kept making remarks like, "two is mild. Three is trivial" while the boss kept typing at a keyboard. At 30 degrees I really thought I was going to die or at least black out. THe boss asked me to rate my nausea and I said, "horrible…" and she said, "Is it a ten? We can stop if you need to." I said I could go on. My dread was that if we only did it partially and didn't get the information they needed, then some other day I would be doing this all over again. It seemed to level out for a while there, they kept me at 30 degrees for ten minutes or so and I acclimated somewhat.
Then they tipped me almost all the way up to standing, at 80 degrees, where I was to remain for 45 LONG eternal minutes. The underling nurse would say, "21 is trivial… 22 is mild" like that, which I later surmised were minutes, how far into the test I was, and how horribly I was faring. But I felt so bad that again I was annoyed that what I was going through was "mild and trivial" to them. The boss lady said, "Try to keep your eyes open, tell me if you have any visual symptoms…" I said that the light in front of me was falling down like a waterfall from the light fixture. I watched it pour down, first one eye and then the other. My hands and feet felt bloated and tingling and I was crushingly tired. I just wanted to sleep very badly. "It's… very hard… to stay…awake…" I told them. The keys went tappity tap. "Try to keep your eyes open," she said again.
I felt very much like James Bond, post-drugged martini. Whenever I opened my eyes just a crack, all I could see was blurry and too bright. I kept them shut. Then the underling said with a note of firmness in her voice, "31 is MARKED." The boss lady sprang up and took my blood pressure. My chest suddenly felt very hot. "Can't… stay… here…. much longer… " I said as best I could. I noticed that my knees were pressing firmly against the straps holding them in place. If the straps were not there, they would've folded long since. I was going under, but still conscious in some part of myself. They began to speak strictly in numbers: "What'ya have over there?" "I've got 32." "I just got 34 here." Just then the blood pressure machine beside me started to beep in an alarming fashion. "That's it, we're going down," the boss lady decided. The bed tilted back to flat immediately and it was all over.
I made it to 32 minutes. My blood pressure dropped so low that the machine could no longer measure it, hence the beeping. Meanwhile my heart (trying to get some blood someplace) went up to 137 beats per minute. Apparently this is not normal– and I suddenly understood why standing in a line at the grocery store can really be so awful for me. All they did to me was make me effectively stand up for a half hour straight and this was the result.
After a while (5 minutes?) of lying on my back, I started to feel somewhat normal, open my eyes and look at the ceiling, which now looked like it should. They undid the blood pressure cuffs and pulled out the IV port, undid the straps and told me to sit up when I felt ready. After a while I sat up. They gave me some cranberry juice and I felt basically okay. "How'd I do?" I asked. They demurred to tell me much, as that was up to the doctor. But the boss lady offered this, "It was not a normal test, let's just say that."
I got dressed and went into the room next door to wait for the dr. After what seemed a long while, she showed up, and then went into the other room to talk to them about what happened. I couldn't hear everything they said, but I heard the boss lady say, "We stopped the test at 66."
When the dr came in, the first thing she said was, "Your test is positive." I said, "You mean I have POTS?" SHe said, "Yes." I said, "Is this part of what's causing my dizziness?" SHe said, "Most definitely."
I said that the neurological god had said to be on the lookout for this thing called orthostatic hypotension, which he defined as the brain sending the wrong information to the heart. I thought that was the term. She said, "Yes, you have it. But there are two kinds. Let me show you the chart…" SHe began to scribble all over this little graph of my heart rate and blood pressure during the test. Basically what I went through was fairly normal– the horrible first few minutes were what she called "the startle effect" but then my body figured out how to manage being at that angle. Where things really went south was at the very end– I was going along more or less survivingand then, around minute 32,with no change in the external forces at work, my blood pressure just fell off a cliff and my heart went berserk. The machine could not read numbers that low, but said that the mean of the two blood pressure numbers was 66.
So now what?
Now we know that I have this, the question is why? Possible reasons are something wrong with my heart (not likely), having too little blood in general (???), or having a messed up brain that is running the show very badly. Obviously I think it's most likely the latter, but in order to find out I will need… you guessed it… more testing. So on January 25th I'm scheduled for another round of total joy– IVs for starters. This time they are going to literally give me radioactive blood like spiderman. I'm going to get a card for Homeland Security– I'm not making this up– that I will carry for three months, in case I set off any geiger counters. No, I'm not carrying a pocket nuke, I … myself … am radioactive. This will certainly give me some street cred with Isaac, who is already boasting to everyone about his mother's radioactive blood. I have to fly tomorrow out to Minneapolis with the boys, god willing. Luckily my blood is not radioactive– yet. All I have to worry about is the weather.
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