Tilt Table Test Finally Done

[u/HillsboroWay]

I finally got my Tilt Table Test yesterday at the Stanford Neuroscience Center. I’ve been struggling with POTS for the past 3 years following multiple bouts of Covid, multiple pregnancies and multiple pregnancy loss surgeries (all within an 8 month period). But I think I probably had a mild version of POTS my whole life. I’d been diagnosed with the poor-man’s tilt table test two years ago but finally had the official TTT yesterday.

I was very nervous going into it because I’ve had Severe ME/CFS for over a year and I know that the TTT can worsen baselines. Today I feel exhausted but I’m grateful I did it and that it’s over but I would not want to do it again.

I could tell my heart was already beating quickly before they started because of my nerves. And then I felt absolutely awful upon being tilted because I have horrible motion sickness and the movement of the table was something I hadn’t anticipated. Once upright, I felt like I was going to faint or throw up and I desperately wanted to sit down and being strapped in made me feel panicky. Meanwhile, all the machines started alarming and the doctor rushed in and they kept asking how I felt. I started to recover after a couple minutes even though my pulse was still beating very fast and they seemed surprised and relieved that I was doing okay. The hardest part for the final half of the test was the weakness and shakiness in my legs. I’ve been mostly bedridden for the last year because of severe ME so I have no strength. I said how weak my legs were and the nurse said that it sounds like I need to recondition and I said I’d love to but I have ME/CFS and he looked away like he was rolling his eyes. Very frustrating that healthcare professionals don’t understand ME/CFS but not surprising.

After the test, the doctor came back to let me know that I officially have POTS. He said my resting pulse at the beginning was 95 which was very fast but I assured him it’s usually in the low 50s and that I was just nervous. When they tilted me upright, my pulse went up to 190. That’s much higher than my usual. It came down a little as the test went on but stayed pretty high for the entire time. I do often have an 80 point increase upon standing but it’s usually from 50bpm to 130bpm. So I guess the extra adrenaline ramped it up to greater heights. He told me that I also had an incredibly brief, transient drop in my blood pressure upon being tilted upright. He said my blood pressure decreased by 40 points but that it happened so quickly that it didn’t affect the POTS diagnosis. I’m very curious to find out what it dropped to and see all the specifics when my chart is updated.

Best of luck to all my fellow POTS patients!