The Infamous Tilt Table Test

I went in for my Tilt Table Test (aka. TTT) in December of 2009. The whole family (me and my brood, minus the in-laws) went in the early morning hours the day before my birthday to do this test. Amazingly, I was not freaking out. I must tell you, at this point, I was on no medication.

I arrived at the hospital as scheduled. They have to admit you on account that you might have a heart attack right then and there and they might need to revive you…no pressure. I felt a bit antsy, but had I had the monitor then, I don’t think I would’ve pushed the button. I had my Big Handsome next to me and my courageous children…what could go wrong.

I had no idea what to expect. I had done some research on the TTT and I was scared but strangely serene (an answer to my incessant prayer for peace). Quite frankly, I was more afraid that they would strap my arms down; if that had occurred they would’ve had a huge fight on their hands. Fortunately, when they strap you in, your arms are free (Yay! Because I am slightly claustrophobic). So, they strapped me in and explained what would be happening. I would be in a supine (lying down) position and then they would slowly raise the bed until I was standing upright, all the while checking my vitals. The doctor told me not to worry that most people take up to 20 minutes to have any effects.

Well, I proved him wrong. They strapped me in, took my vitals and then the doctor exited the room telling me, “this might take a while”. Upon being put in the standing position, my heart rate went from somewhere in the 70’s to upwards of 150 within three minutes. The doctor wasn’t present, the nurse was. I told her as I felt “it” coming on, “it’s coming, it’s COMING, IT’S COMING!” The doctor came back in and told me that they had to repeat it since he was not present…REALLY?! So they lowered me to the supine position again and started the process all over. Again, the same reaction. Then, the doctor told me they had to repeat it one more time and this time he was going to inject something to hopefully stop the arrhythmia (if in fact I had an arrhythmia, if I didn’t the medicine wouldn’t do anything). They did the test once more, he injected me and all hell broke loose. I told him “IT IS COMING” and he injected me and then I felt as if I couldn’t breathe. I was in tears by now and they lowered me back down where I lay still trying to recuperate. I bit later I was better.

 

Big Handsome and I waited in a room until the doctor came in with his results. He finally came in and explained that I "probably" had POTS. Really???? Probably???? Seriously, if a doctor examines you and says "you probably have a broken wrist", do they not then deduce that an x-ray or some other test will need to be performed to be sure, so as to then be able to ascertain the best course of treatment? If a patient presented with cancer (I am in no way diminishing a dx of cancer, just merely making a point here) Would the doctor come in and say, "You probably have cancer" and leave it at that? I think not. The doctor would most likely want to run a battery of tests, again to figure out the type and best course of treatment. He didn’t really explain what POTS was, instead he handed me some papers he had just printed out from the DINET.org site at the nurse’s desk. He told me that not too many people have this and there are fewer doctors that treat it. He was one of the doctors that didn’t treat it. I even asked if he knew of any doctors that did treat it, that he could refer me to. He told us that he knew of no doctors that treated this illness (three years later I would find out that there is an EP that treats dysautonomia within the same hospital system).  He then told me to, “Eat more salt, drink more water and go live a normal life.” And that was how I got diagnosed. He couldn’t even tell me how much salt or how much water. He told me that he couldn’t put me on the standard  "only" medication used for this illness (Florinef) as it would increase my blood pressure and could lead to other issues ie: hypertension. He said that my blood pressure actually increased upon my tachycardia instead of decreasing to the point of pre-syncope or syncope (near fainting or fainting).

Well, at least it was "probably" a diagnosis. I did feel a bit better at least knowing what might wrong, but to not know how to remedy this illness was disturbing, to say the least. And so began my treacherous journey with POTS.