TILT!

8:30 am

65/47 83 bpm

I'm wondering why on weekends my blood pressure starts out so low. Probably because I'm not frenetically shoving water down my throat so I can make it to work without passing out. Maybe it's because I didn't sleep well last night. I was that old lady again who slept with the tv on but at least I had the sense to turn it down low. My migraine kept me half awake and the tv distracted me from the pain.

I used to sleep like a rock through the night before the monkeys were set loose. Every night I would take my migraines meds and they would knock me out. Now I'm woken up by crazy dreams, bathroom runs, sweating or by more frequent and intense headaches.

Anyway, I wanted to write about the final piece of history, the tilt table test. My neurologist had referred me to a dysautonomia specialist, Dr. K, who could give me the test. I called Dr. K's office to make an appointment. When I asked if Dr. K took my insurance, the receptionist told me no, he only took medicare. It would be $600 for the test and $600 for the office visit.

Check please! I went on the Internet and did a search for tilt table test and New York City. I eventually called Mount Sinai Medical Center and made an appointment. Oh, and they took my insurance.

I took the day off from work and my mom and I went to the hospital. I didn't take my meds - the Florinef and labetalol - because I wanted my body to react as naturally as possible. I knew the drugs were somewhat still in my system though.

After a short wait, I was in my bra and underwear and a patient gown and laying on a tilt table, which felt like any other examination table except it was more cushiony. The technician had a middle eastern accent and couldn't have been nicer throughout the whole process. On my right index finger he put a pulse monitor and on my left arm a blood pressure monitor.

I didn't know what to expect, but he started explaining right away that I was to lay there silently for ten minutes so he could get baseline readings. That was fine with me because I was tired and uncomfortable from no meds. After ten minutes, he started attaching things to my right arm, leg and foot. The foot really gave him a lot of trouble and he told me it always did. At this point it was obvious he was going to do more tests than just the tilting. I had read up on autonomic nervous system tests and I figured this was what he was doing.

He finished with the attachments and told me I would feel little electrical jolts where the probes were. The jolts went on for ten minutes and then that part of the test was over. It turns out that test checked the sweating mechanism, a function of the autonomic nervous system.

The next two tests also tested that system. I basically had to breathe into tubes and hit an electronic light marker on a monitor. So far, so good, although I got dizzy breathing so hard.

Now for the main event. The technician told me this test would last forty minutes. After establishing a baseline reading for ten minutes, he was going to tilt the table to a vertical position where it would remain for thirty minutes. He told me that if at any time I became too uncomfortable, I should let him know and he would stop the test. I had read about other people's experiences with the tilt test - some passed with flying colors, and some passed out - and I was determined to see it through, even if I fainted while vertical.

As soon as ten minutes was up, he told me he was going to tilt me. Quickly, I was vertical. I readjusted, making my feet flat on the small platform, and waited. At this point, I had no accurate sense of the passing time. But very soon after going vertical, I started feeling twinges of cloudiness in the top of my head, like an impending storm. The technician asked me how I was doing and I said OK. The cloudiness soon became rain and my heart started beating faster. Again, the technician asked me how I was doing, except this time his voice sounded farther away. Again I answered OK.

Lightening joined the rain in my entire head and I heard thunder in my ears. My body started to tremble and I breathed deeply to ward off the dizziness. The technician asked me how I was doing and this time I paused before answering OK. I was determined to see this through. More time passed and the shaking in my body increased, the rumble in my head got louder and the room started pulling away from me. I started seeing light brown. Everything started speeding up even though nothing was moving. My heart was pounding against my chest, the low lighting in the room was flashing, I bowed my head, closed my eyes, opened them and saw brown crawling across my field of vision. My right index finger was bursting against the monitor and my body was shaking like a bombed-out 747 at full throttle.

The technician, I could barely hear him now, was asking me, are you OK? This time I said, in a small voice, No. He'd been watching me closely, watching the monitor, he knew I was going down and he quickly lowered the table, telling me in a soothing voice that I would feel OK soon, to just hang on. I was shaking so hard and my heart was beating so loudly that I barely heard him, but I believed him, I had to because I felt like I was dying. I wanted to die because I have never felt so horrible in my life.

When I got horizontal, I felt a coldness wash over my head, but not much relief. I was shuddering now, gasping for air and my chest was heaving. I started crying. The technician told me to lay there for ten minutes. My heart eventually calmed down and the dizziness went away. The test finally ended and the technician took off the pulse and blood pressure monitors. He told me to get dressed and to leave when I felt better.

When he left I really started crying. What upset me the most was how my body betrayed me. How the simple act of going vertical could cause such a profound reaction. And how I couldn't trust or rely on my body any more. And really, how absurd it all was. What a stupid, ridiculous thing to be saddled with. A hindered ability to get from point A to point B, and worse, an invisible disability.

A few weeks later, I called the hospital to make sure they faxed the results of the tests to my neurologist, and I also asked for a copy. I also spoke to the doctor who analyzed the results and asked her opinion on what I had. There was no doubt I had orthostatic intolerance, she said, and definitely some autonomic system failure. There was possibly an indication of POTS, too. She also threw chronic fatigue syndrome in there. The more she told me, the more confused I got.

The faxed results of the testing told me some more:

"sudomotor responses are low normal at the forearm, proximal and distal leg and are significantly reduced at the foot."

So my autonomic nervous system was impaired. However, I read, the breathing parts of the test, I passed!

As far as the tilt table test, not so much:

"tilt table testing resulted in a significant and symptomatic orthostasis with a maximum drop in SBP of 43.9 mmHg at 3.1 minutes, and a maximum heart rate of 114.3 bpm (36.9 greater than baseline). The patient was returned to the supine position at this time with resolution of symptoms and hemodynamic changes."

I'd only lasted 3.1 minutes! It had felt like a half hour! In 3 minutes, my blood pressure had dropped 43.9 points and my heart rate had gone up 36.9 points.

Conclusion:

"Abnormal study...the findings demonstrate a length dependent decrease in sudomotor function and symotomatic orthostatic intolerance with orthostatic hypotension and compensatory tachycardia. These findings are somewhat unusual for POTS and may suggest a more diffuse, primarily adrenergic neurogenic process."

The Mount Sinai doctor seemed to agree with my neurologist that the tachycardia is a result of my body trying to get my blood pressure up, and maybe not POTS. But there are plenty of times when my blood pressure is not so low, and my pulse rate is high.
I am still convinced that I have POTS (which I believe is not exclusive of OI) because I also have all of the symptoms of it.

So that was my tilt table test story. I didn't get to go to the "expert" but if I get worse, I will find another expert who does take my health insurance. For now, I believe that I am doing everything that I can to treat the symptoms in order to live as normal a life as possible.