Sunday, May 18, 2008

Tilt Table Test

Note: This is the third post in a series telling the story of my illness. To read the first two, look in the sidebar for the link list entitled "What’s Wrong With My Body and How It Got This Way."

I should write an ode to the sphygmomanometer, that nifty little instrument commonly used to measure blood pressure, for where would I be without it?

I was on the treadmill, wires streaming from my chest, bare boobs flopping in the breeze, a nurse tethered to my left arm by a manual sphygmomanometer. Dr. Paulsen had asked me a hundred questions. He had listened to my heart, lungs, and carotid arteries. He had palpated my abdomen and neck. He had taken my blood pressure and counted my heart beats in multiple positions. He was thoughtful, intent, and kind. He said that neurally mediated hypotension certainly could account for my symptoms. Even in the office he was seeing uncommon lability in my heart rate and blood pressure.

But, he said, my symptoms could be caused by something else. There could be something wrong with my heart. He wanted to check. So he called over to the stress-test room, and they said they could slip me in for an unscheduled run on the treadmill. I got my chest skin scrubbed raw and electrodes stuck on, and there I was, moving fast on the track to nowhere, like I said, boobs flopping in the breeze. You mean, I don’t get to cover up? No.

My standing blood pressure at the start of the test was 120/80. The big number is systolic pressure; that’s when the heart is contracting, pushing blood through the arteries. The smaller number is the diastolic pressure; that’s when the heart is relaxing and opening. My peak systolic pressure during exercise was 160. In the last minute of exercise I reported blurry vision. They couldn’t hear any pressure, whether because of ambient noise or very low pressure or both, and I felt lightheaded, so I stopped. After I lay down the nurse recorded a blood pressure reading: my systolic had dropped from 160 to 70, and my diastolic was inaudible. Dr. Paulsen was impressed. He felt certain I would have a positive tilt table test.

Funny, on the final report of the exercise tolerance test, under the heading “patient profile,” they listed my activity status as “athletic.” Oh yeah, athletic. Not even in my erotic dreams.

The next day I presented myself at the electro-physiology lab, sans breakfast, for my coveted tilt table test. A tilt table test is simple: They strap you to a funky table which can pivot on an axis. When the table is tilted to an upright position, usually 70 or 80 degrees, the straps hold you up. Because your leg muscles don’t have to work, they don’t. As a consequence, they don’t help return blood to the heart as they do under normal conditions, and all the gravity-defying work is left to your heart and veins. The idea is to see what happens with your blood pressure and your heart rate. Every hospital has its own protocol, but at some point, if you haven’t passed out by minute six or ten or fifteen, whatever their protocol is, they give you a drug through intravenous infusion. Isoproterinol is, I think, an artificial version of adrenaline, and it makes your heart go very fast. Whoopee!

If that doesn’t make you pass out, you are just fine and dandy, and what are you doing there anyway? At least that’s probably what they tell you, although it may not be true. The artificial situation may make more apparent what you’re struggling with in your daily life, or it might mask it. Or it might not have anything to do with the real problem. Also you can have changes in your blood pressure or heart rate which constitute positive test findings even without loosing consciousness.

I don’t know if the two women who conducted my test were techs or nurses, but I’ll just call them nurses. At any rate, there were two of them, plus me in my hospital johnnie, in a cramped little room filled with equipment. Much preliminary fussing preceded the main business. My shy veins didn’t make insertion of the I.V. line easy. After several tries and several failures, I said I didn’t think they were going to need the I.V. anyway. I couldn’t imagine making minute seven, the protocol for this hospital, without passing out. The nurse looked at me funny and said with certainty, “Oh, you’ll need it.”

So I was strapped to the table. Thanks to a determined nurse, an I.V. tube dangled from my hand. An automatic sphygmomanometer held my left arm and a manual one my right arm. Electrodes on my chest relayed tiny signals to one of several machines clustered about. The nurses took my blood pressure and heart rate in each arm. They massaged my left carotid artery and recorded my blood pressure and heart rate, they massaged my right carotid artery and recorded my blood pressure and heart rate.

Finally, we were ready to go. Let’s do it.

My baseline blood pressure lying on the table was 133/79. That is just fine, maybe a little high on the systolic pressure for a 25-year old woman, but no big deal. My heart rate was 99, which is rather fast, when you think of it; 60-80 would a be a more normal resting heart rate. Immediately upon tilt to 80 degrees, my blood pressure was 128/84—still fine. My heart rate was 137. I said I felt slight light-headedness. Now, as I understand it, this is already an abnormal test result. An increase in heart rate of more than 30 beats per minute going from lying down to upright tilt is abnormal. But we were just getting started.

At two minutes my blood pressure had dropped to 106/56; my heart rate was 147. I said I felt light headed. Next, pressure was 70/non-palpable, heart rate 134. I said my vision was going. Then my pressure fell to 54/impalpable. Fifty-four: that’s the big number, the one that is usually over 100. I was non-responsive. Finally, they couldn’t palpate any pressure. I was unconscious. Minute three. No isoproterinol.

Going out and coming back felt instantaneous—to me. The nurse wrote in her notes that I was slowly returning. I woke to glasses completely fogged over and a left arm ready to fall off. The automatic sphygmomanometer clamped tighter and tighter seeking some sound of resistance.

Oh, I was giddy. I smiled. And I laughed. And they thought I was a little odd. It was all so funny. “I worked hard to get this test,” I explained. I had thought this was the right direction to go in, but I wasn’t going to really know until I had that positive result. I had it. No cause to feel the fool.

I said later to Dr. Paulsen that I wasn’t sure if I had actually passed out. He looked at me, another one of those funny sideways looks, and said, “Oh you were out. You were definitely out.” He also said I must have been walking around in the world with very low blood pressure. Looking at my test results now, I think I see more clearly why he thought that. With systolic pressure below 90, you’re risking unconsciousness, as I understand it. I was still speaking at 70; I was still conscious but non-responsive at 54. I didn’t actually pass out until the pressure was completely impalpable. And the provocation that got me there was slight.

Walking through the halls of cardiology, a nurse stopped me. I don’t know how she knew who I was. “Hey, I heard you had quite a test today,” she said. “Yeah, I did.” My ten minutes of fame.

Two more tests completed my cardiac work-up that summer. The stress test was actually abnormal for more than the episode of low blood pressure, and the automatic printouts said “this test is positive for coronary artery disease.” However, positive stress tests are common in women regardless of whether there’s something wrong with the heart or arteries. Images are necessary to tell for sure. So, in another, much smaller room, a technician dimmed the lights and pressed her magic wand beneath and between my ribs, to send tiny sounds into my chest and listen for their echoes.

Does everybody feel a sweet and unsettling melancholy when, for the first time, they see the image of their heart there on the dark screen? With the rise and fall of my breath, static filled the screen and cleared, revealing beneath my lungs, the persistent action of my heart, a little fast and, it seemed to me, rather more squeezy than necessary.

The doctor confirmed that my heart is hyper-dynamic, and this might contribute to my trouble. If the walls of my heart touch each other, as they can in a heart so squeezy as mine, it can trigger one of these drops in blood pressure. Or so he said.

The tech took many pictures from many angles, telling me each time to hold my breath out. And a month later, I took another turn on the treadmill so they could take pictures while my heart beat like mad. The cardiologist, present this time, intervened. I had just run to a peak heart rate of 200 beats per minute or some such, and again the tech wanted me to hold my breath each time she snapped an image. Dr. Paulsen told me to breathe as I needed to and coached the ruffled tech to watch my breath and catch the images in between. If I was more of a poet and a sage I could make something of that. Well, my heart was fine; that’s enough.

Recently, a woman posted her tilt table test results to a dysautonomia forum I dip into occasionally. She asked if others would be willing to post their results too. I didn’t put mine up, but I looked at the others. I was not prepared for what I saw, and I felt briefly queasy after looking. My test results were dramatic in comparison to most of them. And I’ve gotten much worse in the eleven years since.

Not to get too dark on you. The story to come is not all hard. But there is a lot more to tell. And, no, we have not hit bottom yet.

Even while I am writing the past, I’m still living the tale. Really I don’t know for sure where my condition is now because I have been on medication for years. The tilt table test I had was low-tech and long ago. Though it documented dysfunction, it gave no indication of the mechanisms involved. This week I saw a neurologist for the first time. I will have another tilt table test soon, complete with continuous blood pressure measurement and Doppler imaging of blood flow to the brain. Plus I will submit to other, more detailed autonomic testing and MRI imaging of my head and neck. I’m actually crazy enough to worry that I will now heal before I get a chance to thoroughly document the trouble, making me look like a histrionic hypochondriac. "We should have such trouble," my Larry says.

I find myself in that familiar position again, hoping that the tests will give us more specific information to act on, fearing that they won’t. If they don’t, I’m afraid I will be left still in the position of handing small tokens—lists of symptoms, inadequate descriptions of my daily life—across the great divide between my experience of my body and the doctors’ conception of it.

But I think, too, of the definition of hope Larry articulated recently—the willingness to live forward into uncertainty, without despair. That is what I am doing now. Yet I also know that hope can mean taking your despair by the hand and choosing to live forward into uncertainty, even with that difficult companion.

7 comments:

  1. Wow. Thank you, Priscilla.

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  2. What a story. And you're right that it's a story that isn't over yet. You could get better or you could get worse: and while those of us reading this care, no one is more concerned with the outcome than you and your immediate family. There's a huge question mark hanging over everything.

    One thing that I can actually understand better -- I don't pretend to understand the pain and anxiety and sheer weariness of long years of sickness -- is your fear of being taken for a hypochondriac. Right from the start I could understand this, I could understand why you'd be really concerned that people might think you're making it all up. For whatever reason, I feel as if I understand that perfectly. While all the pain and apprehension and exhaustion I can only understand in the abstract, as things you describe to me and not things that I know myself, the fear of being seen as a neurotic who only imagined the whole experience rings true to me. I know without taking thought why you'd want proof that you were ill before you were to get better.

    In theory, I know that this is unfair to all the people who imagine that they're ill. In one sense, you could say that they're not imagining anything: their illness is merely mental and not physical. They have a problem too, just a different one. And yet it feels like I understand perfectly why you would not want to be classed with those people. It seems perfectly comprehensible that your desire to get better be rivaled by your desire to document the reality of what you went through. Even if you were to put all the years of illness behind you -- something that has not been promised -- you'd still want people to know that all you went through before is real.

    As I said, I can't appreciate half of what you've gone through, but for some reason I think I understand this. Thanks, as always, for writing.

    Brendan

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  3. prefer not to sayMay 29, 2008 at 10:20 AM

    Please keep posting. I have a partner who is experiencing many of the same symptoms -- and getting many of the same goofy treatment from doctors. I would like to hear more.

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  4. Wow, Priscilla thanks for leaving your comment on my dysautonomia blog. My dys came on relatively suddenly 6 years ago, I suspect because of injections in my spine but really it's anyone's guess.

    I've found the forums on www.ndrf.org very helpful. Are you on there? LOTS of good dysautonomia folks there. Highly recommend.

    I like how you describe the divide between your experience and the doctors' conceptions of it. How eloquently put.

    Marie aka Mynagirl

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  5. I was googling "tilt table test" (because I have to go for one tomorrow), when I came across your blog. I too am very frustrated with the doctors guessing and seemingly belittling of how I know my body feels. I went to the doctor with lightheadedness and a pressure between my ears. I could prevent fainting by taking slow deep breaths and by sitting/laying down. The internist referred me to an ENT, who said nothing was wrong with my ears and ordered an MRI. When it came back with a few "white spots", she suspected MS and sent me to a neurologist. The neurologist reviewed the MRI and said, no it's not MS. He did a few autoimmune tests and sent me to a Rhumatologist (because of a positive ANA test). The Rhumatologist did more tests and ruled out lupus and other autoimmune disorders. She sent me back to the neurologist who is did a spinal tap (which sent me to out-patient surgery for a blood patch). He further confirmed no MS with the spinal fluid tests, but couldn't find anything else either. While in his office, his nurse checked my blood pressure and found it significantly different when I was laying from when I was seated. Now he's sending me to the cardiologist for this tilt table test. I think that some of the most frustrating things are: never feeling "well", exhaustion (although dr found Vit B 12 deficiency so I'm on tablets to help with that), fear of fainting in public, waiting between tests for results, and being accused of letting stress get to me. I'm only 34 years old... I don't have time to be "sick". Thanks so much for your postings, and I encourage you to keep us posted with your journey!
    Paula

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  6. Thanks for all the comments. I hope to continue this tale soon. The next part is nebulous and hard to tell, and I think it also makes me sad. Once I get into it, I'll be pleased to be making something out of the mess of memories.

    best to all,

    Priscilla

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  7. i went to my tilt table test and they said it was normal lol.....they did blood work on me and i am deficient in b12 and vit d.......my blood pressure is low it stays around 100 over 60 but yet nothing is wrong.(bs i say)....people dont just have chest pain allday everyday and be normal.i have gone to the hospital a couple times and they keep saying they dont know whats wrong....(bs)i think they just dont want to say whats wrong because im only 29....im so tired of being in pain this is not normal...so good luck to everyone i hope we all find out whats wrong.....

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