Researching conditions online is something chronic illness patients do. Especially those with illnesses that are not well understood by the medical community. Being a chronic illness patient can leave you feeling rather vulnerable at times, which leads to searching online for answers, for other people on the same path, for understanding, and for confirmation. If you’re seasoned in the chronic illness community, you likely have a few sources online that you trust, people who seem knowledgeable, and are not offering get-well-quick scams. So, it probably comes as no surprise to you that when I was new to MECFS and started hearing about Postural orthostatic tachycardia syndrome (POTS) I started my online research like a Type A grad student. That research led to THE test for POTS. There are other tests, but the Tilt Table Test (TTT) seems to be the chosen one. Today I wanted to share a little bit about my experience with the test last Wednesday, but I’ll forewarn you, in case you haven’t already noticed from my rambling writing, I’m still recovering and flaring and all that good mess of fun that comes with overexertion and MECFS, you know the gift we call Post-exertional malaise (PEM). Truthfully I probably shouldn’t be writing this blog at all as I had quite the episode last night but I’m no quitter.
In case you aren’t familiar with what a TTT is, it looks like this. If you’re wondering why the straps? It’s in case you faint. You start out flat and they raise you up.
Here’s what I read during my research:
It looks like the above and it’s awful. Almost everyone online said it was very unpleasant. The only place that didn’t say that was on the American Heart Association page where a couple of people were quoted as saying is was no big deal. The terrified part of me thought, oh they are just saying that!
Here was my actual experience:
When the pre-paperwork came it said no food, no water for six hours prior and yet they couldn’t get me in until noon. So that was hurdle one, trying to adult with nothing on my stomach for hours on end. The paperwork also said to bring my advance directives. WHAT? Okay, that scared me. No, no, no, do not say that! I realized when checking in they ask everyone if they have them but still, c’mon add a disclosure *don’t freak out – we ask every single patient coming in for this paperwork!
Okay, the day comes, I wear comfy clothes, no food, no tea, no water, nothing but the Sahara Desert in my mouth and a fuzzy head. We show up, the check-in lady comments on how calm I am, meanwhile I was thinking A) I’m terrified and B) I’m running on fumes. This isn’t calm lady, it’s overwhelmed, but I smiled graciously, and they quickly called us back.
The nurse came and brought me a gown and socks. I had worn my own cute fuzzy bunny socks but that was a no-go. Had to wear the yellowist-I’ve-ever-seen socks with grips. No complaints they were comfy. Was told to wee in a cup, after having had no fluids for 16 hours, thanks to my IC, that was no problem. The nurse came back, put an IV in, explained to me why…in case I faint or worse. Not helping my jitters! But she did give me a warm blanket and those, well, I just love those, so she was forgiven. She said the doctor would be in shortly to talk. Soon thereafter he came in, asked me a few questions, explained the procedure and he was off. He wasn’t performing it, I have no idea how he fit into the picture. He said the nurse who would be taking me to the test would be in shortly. The nurse arrived, a different one, shortly thereafter, checked in, asked some questions, assured me it would be fine and closed by saying, “It’s the most boring test you’ll ever have. If you like to be bored, this is for you.” We all chuckled and my inner skeptic was thinking hmmm he’s just trying to make light, I must look like a deer caught in the headlights. Soon enough he wheeled me down in the bed, I’m not sure if that was because I came in my wheel chair or if they do that with everyone because I did switch beds once I got to the testing room.
He thoroughly explained what the test did and what I should do. My only real job was to tell him if I felt faint so that he could put the bed back down to try to keep me from fully fainting. He strapped me down to the table. NOT A FAN. Long story short, I’m a little bit claustrophobic. Anyway, he was sympathetic and didn’t tighten them down like iron man until right before the test started. I’ll tell you what, I was very thankful for those straps once it began. He put sensors on me, dialed in his machines and we were off to the races, the heart races. 😉 I was able to watch my heart rate climb, I told him my symptoms as they were occurring, the doctor came in and explained what numbers they were looking for in what period of time. So, I generally knew what was going on. My only job was to let him know BEFORE I faint.
The symptoms it evoked were ones I have frequently, they weren’t out of the norm for me since MECFS. It was weird to not be able to sit down to ease them, but to instead let them keep getting worse and worse. It was shocking how fast the symptoms accumulated when left to get worse with no rest. And I didn’t make it until the very end because I was ready to faint, so just as he’d promised, he and the Dr agreed to put me back down. The numbers were clear, I definitely have POTS.
As he wheeled me back I commented on how I had been terrified because everything I’d read online had said how awful the TTT was, and he said, “Well, people who don’t perceive it as awful probably don’t write about it” and I thought you know what, that’s probably true. So, I’m doing just that. I don’t know if it’s because I literally have over 130 symptoms since onset of MECFS and my body is so out of whack on a daily basis that I’m used to it freaking out, or if I lucked out with the best hospital experience possible, but the test wasn’t awful. It wasn’t fun, but I’ve had much worse. Vestibular testing for instance was literally like mid-evil torture, seriously it was awful. I’m truly sorry for all of you who have had an awful experience. Hopefully you’ll not have to endure it again or you’ll have a better experience. If I had to guess, I think the reason I was so terrified is because of the way I’ve been treated by so many medical professionals since onset of MECFS and the reason it wasn’t so awful is because they were truly kind and compassionate this time, and it almost felt surreal.
Tomorrow I have more testing, but this is with the Neurologist. I’m outta spoons, still recovering from last Wednesday, so it should be a treat. I thought a week apart would be sufficient, it’s not, but I’m keeping with my goal for this year, showing up no matter how sick because if you wait until you’re okay enough to go, they never see you as sick as you really are. Plus, my son no longer can take me and my boyfriend has to take off work in advance, I can’t just cancel last-minute, so I pile myself into the wheelchair like a sack of potatoes and do my best. Wish me luck tomorrow folks and I’ll let you know next week how it went. Fingers crossed it’ll be okay, not just tomorrow, but in the days following. Only one more big test to go (this year) after tomorrow. I think I can, I think I can, I think I can.
A few more of my doodles and just in case you want to see that super cute, and oh-so-fashionable hospital gown and bracelet, I put that in there too. 😉