Tilt Table Test: My Standpoint

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.

ttt

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. 😉

 

 

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33 thoughts on “Tilt Table Test: My Standpoint

  1. Tamara

    Thank you for sharing this information and your experience. I’ve thought about asking for this test but wasn’t sure about it. I appreciate your willingness to share. And your sense of humor! Hoping you are having the best day possible and sending you energy for your visit with the neurologist today.

    Liked by 1 person

      1. Sarah Everson

        I too suffer from two extremely rare autoimmune diseases that I feel I may know more about then the professionals I see. As a result of these conditions I have severe chronic fatigue syndrome as well. My diseases are IGG sclerosing related disease, primary autoimmune deficency and hypoimmunogloburinea. I stumbled upon your WordPress by accident and I am glad I did. I’m a single mother of 3 and only 30 years old. I am blind in one I and half way blind in the other. I have no friends no family that cares to understand my suffering or acknowledge it so finding another person who lives feeling somewhat lost and forgotten kind of is well a blessing. I thank you for popping up in my crochet search!lol. I wish. bhai knew how to start one of these things I get so lonely all the time I tend to focus so much on the pain I feel I think it makes it worse.

        Liked by 1 person

      2. I’m so sorry you are experiencing so many challenges. Life can be relentless at times, thankfully feelings are always changing. For people with chronic illness social media can be a literal lifesaver as nobody gets it like someone walking in similar shoes. And to feel understood is priceless. Hoping that there will be goodness in each of your days. 💕

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    1. Oh Lisa I’m sorry to hear about your friend. There’s a big network of people on social media where your friend might find comfort. It is a scary journey but it helps to communicate with others who’ve walked it before you or are walking it with you. Sending your friend my best and thank you for kindness!🌻

      Liked by 1 person

    2. I went through this journey and am still going through it. Unfortunately after diagnosis there is not support in Australia at all. If your friend would like to connect with someone who has walked through this journey before I am more than happy to speak with her. She can contact me at all-hearts.org

      Liked by 1 person

  2. I know that test. I will never forget the day I had the test and was diagnosed instantly. Did you ever read my blog posts on it during October, Dysautonomia Awareness month? If not here are the links. https://all-hearts.org/2018/10/26/five-fast-facts-about-dysautonomia/
    https://all-hearts.org/2018/10/25/how-you-can-support-people-living-with-dysautonomia-and-help-raise-awareness/
    I do remember giving you a painting prompt to create a turquoise artwork during the month of October. I guess we’re POTsie buddies now.

    Liked by 2 people

  3. I’m sorry you’re struggling with the flare so badly at the moment, though I do commend you for writing such an incredibly thorough post despite how you feel. I’d tell you off, but we all know what it’s like when you want to keep pushing to get something done even if we perhaps should be resting instead.
    I haven’t had one of these, nor do I have POTS, so it made for enlightening, insightful reading. It actually reminded me a little of the bladder test thing I had done a couple of weeks ago (being on a table than tilted upright, not much fun).
    A nice warm blanket can help with tests. “Off to the races, the heart races’, I like that!

    You’re absolutely right about differing views online and the picture you can get of certain things, from medications to tests, which can really tint your view of something, especially when you see comments about how awful that thing is.

    Thank you for so honestly sharing your experiences – it’s posts like this that are so incredibly helpful to others. I’ll share it to my FB page, if that’s okay.

    I really do hope all goes well with your Neurologist appointment. After that you’re free and clear, and you’ll be able to do whatever you please and rest as much as humanly possible (before taking it easy for an enjoyable Christmas). You can do this.

    Caz xxxx

    Liked by 1 person

    1. 😁 I find that staying busy as I’m able helps me forget. Sounds counterintuitive but it has worked for me this far.

      Hoping your bladder test went okay and you got the results you wanted. Testing in general feels like it takes a little part of you you can’t get back. Dignity? I don’t know, but I’d be okay with being done with all the testing.

      Yesterday’s appointment was not great. But today is a new day and I found my smile…it may have been underneath a bite of non-dairy Ben and Jerry’s ice cream, but I still found it.😁

      Hoping today is kind to you!🌻

      Liked by 1 person

    1. Yes, if we could trade it for the travel-anywhere-every-month-club that’d certainly be preferable! There’s another diagnoses lurking but it’s pending further testing. I think I’m due for some sort of system reset or refresh back to July 2014. Wouldn’t it be great if that were a thing?! Wishing you and yours Happy Holidays and safe travels!

      Liked by 1 person

      1. Travel will be temporarily suspended until late Jan. because it’s apparently half price then. Hard not to go that route after three salary-less months, but we will back count it as “Christmas” travel anyway. On the plus side, my new cane seems to be saving spoons. So, that should help with maintaining travel mobility longer…

        Liked by 1 person

      2. Vacation is vacation, plus maybe there will be fewer people.😊

        Great news about your cane! And now I’m sitting here wondering if there is grippy stuff you can get for the cane bottom in case it’s icy. 🤔💭

        Wishing you a totally and completely uneventful rest of the year! Just to clarify…devoid of anything but goodness😊💕

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  4. I’m so glad to hear it wasn’t awful for you! I had my first TTT in 2011 and my second earlier this year. The first was awful – painful and incredibly uncomfortable. The second was totally bearable. I only had to be off medication for 24 hours for the 2nd (and wasn’t on any medication at the time of the 1st), so I suspect that had something to do with it.

    But regardless of how bad the test was, I was relieved to have a diagnosis. I hope the same is true for you!

    Liked by 1 person

    1. Sincerely hoping nobody takes my post the wrong way. I just wanted people to know that sometimes it’s okay. Just as you experienced. I’m still recuperating but yes, very thankful it’s behind me.

      Hopefully as the diagnoses becomes more widely known a more humane test will be invented, instead of let’s try to evoke every horrible symptom we can. Just a thought.😉😁

      Happy Holidays!💕

      Like

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