It has been a week of doctor appointments, hospital tests, and a missed/rescheduled appointment for Jack. Oops. Hate all of that for me. Monday started out with a cardiologist appointment to try and get to the bottom of my POTS diagnosis. Unfortunately that appointment was just layer two of what is turning out to be a many-layered medical onion. Let's do a quick POTS recap of what it even is (this is for me too--I can never remember what it stands for):
- Definition: "Postural" (position), "Orthostatic" (upright), "Tachycardia" (fast heart rate), "Syndrome" (group of symptoms).
- Mechanism: The autonomic nervous system does not properly regulate blood flow, causing blood to pool in the lower body and the heart to race to compensate.
- Symptoms: In addition to dizziness and tachycardia, patients may experience brain fog, fatigue, palpitations, nausea, and trembling.
- Management: While there is no cure, it is managed through increased fluid and salt intake, compression garments, exercise, and sometimes medication.
My cardiologist recommended a lofty hydration goal, a lofty sodium/electrolytes goal, and introducing creatine and co-q10 to my daily regimen. He also wanted me to take an official, expensive, hospital-grade tilt test to be ultra sure POTS is the main culprit of my intense brain fog/fatigue/dizziness over the last year (really it's been on-and-off over the last two decades, but at a crippling level this last year). Then I'll need to get a bunch of bloodwork to rule out anything else. I know both these things are important in getting a precise diagnosis, but I hate them. I'm grateful (also grumbling) that they were able to squeeze me in for the tilt test this week while Alice was at preschool, so there was no need to figure out babysitting.
A tilt test is where they admit you to a hospital, strap you to a table, stick a bunch of probes on you to measure heart rate, blood pressure, and oxygen, then tilt you upright to see if you pass out. If you don't have an autonomic nervous system disorder, you will probably just stand there bored for half an hour. Maybe a slight bump in heart rate at first, but then basically just boredom until they lower you back down. If you do have an autonomic nervous condition...pretty much it's a "let's see how fast you can pass out" situation. I think I lasted 3 minutes. It was very bad. I DID NOT LIKE IT. I was pretty nervous in the days leading up to the appointment, because there's something that feels sinister about passing out while strapped upright to a table. I don't know, seems like a torture thing. I wish Jared would have been able to come to this one.
The real test went, unfortunately, worse than I had been imagining. I had to admit myself to the hospital, they told me I couldn't eat anything for the 8 hours leading up to the test (that felt like overkill--I would have passed out just fine without the fasting), and then during the test they're like, "You can/should talk to us and tell us how terrible you're feeling, but we aren't allowed to respond or say anything to you. Ok have fun, don't pass out, actually do!!!" Then they tilted me up slowly. Again, nothing crazy. Anyone without POTS would be bored. Within a minute I was lightheaded and could feel my heart racing. By the second minute my hands were cold and my vision going blotchy. By the third minute I was like, "My arms are numb. Everything's going dark. I can't do it, I can't do it, can we stop??!" Hyperventilating, fidgeting in my straps to try not to pass out, and then I don't know if I fully passed out, but I also don't really remember the next few seconds. They lowered me down and stopped the test, which they said they would only do if I passed out, so I guess it counted.
After being lowered down, I was shaky, freezing, and my arms remained numb for probably 5 minutes. It took me back to my hospital stays after giving birth. I was fully bedridden during the entirety of those stays and could not stand up at any point without passing out. I had to be wheeled out of the hospital with my babies 2 days after giving birth, each time, to not pass out. It makes me so sad for past Laura to know now that there could have been help for me. At the time I just assumed not being able to stand up without passing out was a typical postpartum experience. You really don't know what you don't know.
After my tilt test, eventually they helped me ease off the table and get out of there, and then I went and cried in the car for a while before driving home. For lack of a better word, it was just a really physically and emotionally cold experience. At home I cranked our thermostat up to 78 and it took me hours to warm up. I felt dizzy for the rest of the day and pretty much laid down and watched a bunch of movies, which is strange for me.
My biggest fear is that I didn't last long enough for them to record the numbers needed for an official diagnosis. I don't think I could go back and do another tilt test again. For my stand tests in the past, my heart rate was observed over the course of 10 minutes after going from laying to standing. I did have to hurry and lay down to avoid passing out halfway into one of those. Without lasting a full 10 minutes, there may not be enough data for them to look at. They are looking for a heart rate spike of 30+ bpm over 10 minutes when going from laying to standing, with blood pressure remaining pretty stable. I have another appointment with my cardiologist for next month after I get my bloodwork done. We'll see what he has to say then I guess. In the meantime, lots going on to keep me distracted! Let's leave my medical saga behind and get to some pictures:
^^Alice wore one of Jack's old white button-ups on Sunday and looked like a fashion girl.
