The Tilt Table Test
Alternate Title: Isabelle and the Terrible, Horrible, No Good, Very Bad Day
Most 17-year olds dream of…….well, I don’t know what anecdote to use here, because all I thought about was the day I would finally get back into the neurological clinic. Like a really snazzy teen might.
The day for my autonomic testing finally came on August 21, 2018. My mom and I were on the way bright and early at 6am. I was way too sickly-nauseous-nervous to eat (plus, is anyone actually hungry at 6am?) and fidgeting the whole way there. I remember talking to someone in the waiting room who had also had this testing done before and told me there was nothing to worry about. Reader, she LIED. I left the clinic that day ugly crying in a wheelchair.
After what felt like an eternity in purgatory, I was called back to a very small room that I was about to get very well acquainted with. I laid down on a completely flat table while my mom took a seat in a chair next to it and the nurse hooked me up to all the fixin’s.
First, I was strapped down to the table, for reasons that will become apparent. There was an EKG (electrocardiogram) with electrodes on my chest – which honestly felt like standard procedure to me at this point – and a fancy finger wrap that continuously monitored my blood pressure the entire time. I honestly can’t remember if I had an IV line or not, but I remember being really worried about there possibly being needles. There was a series of several tests to be done, all leading up to the dreaded tilt table test, which required me to have been laying down flat for at least 45 minutes (or something like that).
We started off with the deep breathing test and Valsalva maneuver, where you breathe out forcefully through a mouthpiece while your nose is pinched shut. I was also familiar with this, and as it turns out, it still was not very fun. It still beat the time I had to blow on a pinwheel until I literally couldn’t anymore (back when SCH tried to induce a seizure). I still have that pinwheel, by the way, and it is not in very good condition.
Then, rather than just testing for something in the general numbers going wonky somewhere, it was time to rule out something specific – cystic fibrosis. We never suspected I had this, but it was something they needed to rule out for some reason, so obviously I still panicked, but it was needless.
The way to diagnose this is through a “sweat test” or QSART. My first thought was, Dear God, please don’t let these people put me on a treadmill. But the methodology is actually pretty fancy and all I had to do was lay on the table and make weird faces through it. QSART stands for Quantitative Sudomotor Axon Reflex Test. It measures the function of the nerves that control sweating. I had these weird electrodes with little cups on the top of them placed on various places on my arm and leg. Inside the little cups is acetylcholine, a neurotransmitter that stimulates sweating.* More fancy things were connected to the other fancy things, and an electric current was sent through the electrodes. Boom, I was sweating right there for the computer to analyze. I was very nervous for this as I didn’t know exactly what to expect, but I knew there would be some sensation when the electric current went through (and the current went through for a solid half hour, at LEAST). The nurse told me for some people it tickled, for some people it was a light burning or tingling sensation, but a lot of people said it felt like getting a tattoo. I’ve never gotten a tattoo, but I think that would be a fair comparison. I can’t remember it in precise detail, but I think “burning” is the best descriptive word. It wasn’t unbearable, though, I was just a girl casually laying there, sweating out her burning limb electrodes.
During this test, I happened to glance down and notice that something wasn’t exactly right… the finger with the blood pressure monitor on it happened to be the color of a swollen eggplant and NOT the color of my skin. My eyes must have gotten very wide, or surely my heart monitor must have spoken for me, but I did not say a word. I tried to silently scream for help, but my mom did not get the memo. I think I tried to wave to her, or otherwise visibly show her my hand, but she just waved back or something, so if she wasn’t worried, then I guess I wasn’t supposed to be that worried. I had no clue if the nurse was aware of this and didn’t care because it was normal, or if she didn’t realize and my finger was going to become necrotic if we didn’t act soon, but I still didn’t speak up. Later, I would ask my mom, “did you see my finger?!?!?!?!?!?” to which she would say, no, she didn’t. Mission failure.
After the rest had been done and I had been laying down flat for quite some time, it was time… time for the tilt table test. (I literally just heard DUN DUN DUNNNNNNN in my head. Hopefully you did as well.) Up until now it had just been us and the nurse in the room, but the real party started when the doctor walked in. I had never met him before and never met him after. I’m not even sure if we spoke to each other, but he really got to know me.
Let’s walk through what a tilt table test is and how miserably I failed it (in a good way). The purpose of the TTT is to measure changes in heart rate and blood pressure when posture changes. As it has been clearly established, mine = bad. This was my chance to truly prove myself and get accepted into the care of this notorious clinic. I know girls with POTS, real POTS, who have PASSED their tilt table tests, meaning, they didn’t faint. I was terrified that I would be totally fine. Isn’t that ridiculous? (Don’t worry, I was not fine on this day, praise the Lord.)
So, after laying down for a while, the patient on the tilting table gets tilted up to an almost standing position and the doctors observe what happens next – for up to 45 more minutes. I suppose it saves everyone a lot of time that I only made it about three until I blacked out. This was also the very first time my mom witnessed me have an episode, so I thought I would interview her about the exciting experience, but via text, because I keep forgetting to ask her in person:
Me: What do you remember about witnessing my tilt table test? Any details? I wasn’t exactly awake for it
Me, several hours later: Eh?
Mom: Just remember the doctor paying attention to the monitors and stepping up to the bed right as you started to faint/seize. (He saw it coming)
Mom: I do have a life, you know. Ha.
And then I was working when she responded and was too busy for any follow-up questions. So there you have it, an exclusive eyewitness interview!
In the car ride home, I wrote some scrambled thoughts down in my phone. I still have them, and here they are:
I’m honestly shocked I didn’t have a panic attack while I was strapped down to a table in a tiny room with wires and tubes and electrodes all over me
The nurse said the sweat test feels like getting a tattoo and yeah it hurt but I’m still not scared of getting one so there’s that
ME AND MY NERVOUS SYSTEM ARE DONE WITH HARD BREATHING EXERCISES
I’m scarred from the image of my finger actually turning purple
I fainted like three minutes after they brought the table up – the nurse checked in with me every minute to see how I was feeling and then I became unresponsive and lost consciousness, the doctor knew it was going to happen the second before when my BP dropped and I got really pale
When I woke up they had already brought the table down and the doctor was trying to talk to me (which I don’t remember) but I was still non-responsive and when I came to full awareness I guess I just burst into tears yikes
It was really traumatic okay I had no idea what was going on
I was supposed to get victory Starbucks and we got a Snickers bar for me to eat afterwards but all I wanted to do was go home and sleep I’m still not hungry/thirsty so that’s probably not good
My entire body is so fatigued and I’m going to be in recovery mode for a couple days. Also my finger still feels weird
I really just wanted to get to ten it’s my favorite number
Alright, I made myself laugh with that last one, and it’s still true (it was a HUGE deal when I turned 10 years old and I had the most legendary birthday party of all time – but that’s another story). I’m glad I documented that right after the fact, because I had forgotten some of this. I remember them flipping the table up and immediately thinking “great, I feel just fine.” But as gravity took hold it quickly became apparent to me that I was not at all fine, and then realizing as I felt worse and worse over the course of those three minutes that fainting was inevitable, because I could not lay back down until I had proved my illness to these people, so I just had to suck it up and wait until the ringing in my ears reached its apex and tunnel vision swallowed me whole.
It was not a great feeling – not just the presyncope, but the helplessness of knowing that it was going to happen. (Even though that’s exactly what I wanted to happen and the entire goal of the appointment. In the heat of the moment, I would have done anything to take it back and be anywhere but upright on that gosh darned tilting table.)
Even though it sucked, I am extremely grateful it went the way it did, because I got admitted for treatment and my convulsing during the episode was witnessed by the nurse and doctor. I got to go home right after the test ended, and immediately slept for six hours (I only remember because this was also written down). I was mostly bedridden and the thought of having anything to eat or drink continued to make me feel sick, even though the worst was over. I felt awful.
That night, I was able to restart my medication, and it made me really sick. Like, the kind of sick I get when I eat pumpkin — a whole other post. Let’s just say I lost a lot of bodily fluids in a variety of creative ways, and I still appreciate my dad for cleaning up the vomit splatter all over the bathroom late at night while I laid face-down on the hallway floor (or was that actually the time I ate pumpkin? It was much appreciated, regardless). All in all, this was really a terrible, horrible, no good, very bad day, but good things came from it, and that’s what matters.
When we got my test results, I didn’t know what to think. Of course we knew that my blood pressure and heart rate “dropped,” but I never knew what those numbers actually looked like. According to the record, when I fully fainted my BP dropped to “less than 61/27” (whatever that means! Can they not record lower than that?) and my heart rate dropped to…six. As in, six beats per minute. So that’s interesting. And it is really safe to say that I truly, definitely, for certain, do NOT have POTS.
Here are the official fancy doctor remarks:
“Baseline BP was 93/68 and HR 66. Tilt up 70 deg, BP decreased mildly to 85/61, then at 3 minutes decreased to less than 61/27 accompanied by reduced HR to 6. This was accompanied by syncope with convulsive posturing left arm and leg.”
And there you have it, the TTT! Stay tuned for a life-changing medication, 504s, and me barely managing to graduate high school during a pandemic.
Autonomically,
Isabelle
*EDIT: I would like to formally apologize to Katie, the former neuroscience major,* for omitting the fact that acetylcholine actually controls "like everything," not just sweating, but I technically didn't lie. She would also like to note that it is a "very cool neurotransmitter."
**EDIT: I would like to formally apologize to Katie, the former-former neuroscience major, as I meant to say "cognitive science" major
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