Tilt Table Test
Tuesday was one of the worst medical experiences of my life. My cardiologist (who I only went to see because my gastroenterologist faxed over a referral and insisted that I go) wanted me to have another Tilt Table Test. TTT NUMBER 3! I agreed because I’m in this period of doing what the doctors tell me to do to see if this gets me what I want faster than arguing with them. It also saves me time arguing with other doctors when they ask for Australian results only. Honestly, it’s the same equipment and the same method worldwide. It measures the same thing. It gives you the same results.
Anyway, the test was awful. Some time into it, my right arm started having those weird spasms that it does. I told the registrar (who didn’t seem to understand what autonomic dysfunction actually meant) that it was happening because I was concerned that it might effect the results of the test. She told me that everything on their end looked fine and that I should just calm down. So then I had to explain that these episodes are not accompanied by anxiety. I did not mention that my eye episodes come with a panic attack because I already knew that she wasn’t someone who can understand that. And I was explaining that I wasn’t anxious but she just kept saying “Calm down.”
These episodes usually last between 20-30 minutes so some time later when my arm stopped shaking, the whole room turned on its side. I had no idea what was happening and was panicking. This was not a panic attack. And I also don’t believe it was an abnormal response. I panic when I lose control of my vision. It triggers my fight or flight response and that turns into an anxiety attack the longer that feeling continues. But as I said, this was not an anxiety attack. I cried a little because I was frightened. I had to look up at the ceiling and my nausea had flared up so badly I had to get the tech to get my emesis bag from my backpack. The registrar continued to tell me to calm down and then asked me if I’d seen anybody for anxiety. I told her I’ve seen everybody. And I wasn’t exaggerating. As she continued to demonstrate her inability to understand my conditions, she pushed and pushed, telling me I needed to see this doctor or that doctor. And I would respond “oh yes I’ve seen five of those. And yes, three of those ones. Ohh I see that one every week.” She was quite clearly neither familiar nor comfortable with chronic illness. With the room on an angle and me feeling like I was either going to pass out or puke, the last thing I needed was someone telling me that they couldn’t see any reason for my symptoms except a fast heart rate. Oh yeah. No shit. What had I been saying the entire time? “This a neurological issue with primary gastrointestinal symptoms. It is not a cardiac problem.” My POTS is not severe. My autonomic nervous system however, is so out of whack that it is causing all my other symptoms. I knew that already. This was not news to me or my mum (who came in unannounced towards the end of the test - to my delight and the registrar's annoyance). By this point mum was rolling her eyes and looked at me and said “What a fantastic waste of an hour.”
We escaped and mum told me that during my test, she had gone up to neurology to find out more about the only neurologist in Australia who understands my conditions. Also to demand to know why I was deemed “not sick enough” to see her TWICE - once last year and once just this past week on Friday. And why I had been shouted at over the phone by the secretary. My mum says the whole lot of them are a bunch of assholes. They refused to talk to her and told her that if the doctor thought I was worthy of her time (yes, you read that right. “Worthy” 🙄) then she would have called to make an appointment. As far as I am concerned, the whole lot of them can shove their opinions up their rear ends. I was exhausted by the time we got back. And I made it much worse the next day.