I had this done at UPMC Altoona Hospital. I don’t blame the nurses for what happened but I am not going to ever repeat this test no matter who thinks I need it.
So there I was, upright and listening to the beep beep of the machine monitoring my bp and heart rate. The nurse was to my right, looking at the machine’s screen.
Me to nurse: Well, this is boring. This test is gonna make a liar out of me!
Nurse: We’re not done yet. Wait and see what happens when I give you nitroglycerin.
Why did they want to give me nitroglycerin? If someone isn’t fainting from just being upright for a prolonged period of time, they give them nitroglycerin to “help it along”. It has to do with “vasovagal syncope”, which is a reaction to stressors.
Aside #4: The room I was in was very cold. I think that’s why nothing was happening when the first part of the test was done. I tend to have these episodes more frequently during late spring and summer, when the weather heats up. Or in winter, in overly warm places like stores, my apartment, etc (there is no thermostat in my apartment so I am at the mercy of the landlady’s settings).
So she lowered the table, put nitroglycerin under my tongue, and put the table upright. Almost immediately, I got very sick – vomiting, feeling faint, palpitations. No sweating or flushing.
I asked her to stop the test when I started to lose my hearing. She said, “Just a few minutes more…”
And then alarms went off. She ran out of the room.
My peripheral vision was going black.
She came back in the room with another nurse, they both looked at the machine’s screen, and then the alarms stopped.
I was now demanding they end the test. Ok, not demanding, more like “pleading”. I knew I was going to pass out but I was fighting it, hard.
Aside #5: Yes, I kept thinking, “The point of the test is to faint, dummy, just stop fighting it,” but I didn’t listen to myself heh.
Finally, I guess she had enough data, and put the table down.
Me to nurse: What were those alarms about?
Nurse: Oh, I couldn’t get a pulse there for a little bit.
Aside #6: I read the results report later. My heart had stopped.
Now you know why I don’t want a repeat of that test. That really scared me.
When I went back for my followup to that test, I got a referral to Hershey, to a POTS specialist.
Off we went to Hershey, Nancy Downstairs and I.
The POTS specialist told me that the report – to her – was “inconclusive”, even though it stated I had “autonomic instability”. She wanted to have me go through more tests, in Hershey, including a repeat of the tilt table test. She said I didn’t have POTS because my bp doesn’t just tank, it also becomes quite high.
It costs, at minimum, $30 to go to Hershey, just in road tolls. So…that’s not happening. And it’s not actually true that you can’t have POTS with high blood pressure, you can. Um, that’s a big no-confidence vote for that physician’s assistant “POTS specialist” in Hershey.
Aside #7: Vanderbilt University in Nashville has an Autonomic Dysfunction Center. It’s about a 4 hour drive from Memphis. I guess I could try to find someone in Pittsburgh, but I am focusing on the parathyroid thing for right now. I’m going to deal with the autonomic thing at a later date, from Memphis, unless it causes worse problems.
And now I have edema in both legs. Fun! Doing exercises for that, and elevating legs. Not sure what’s causing that bullshit, and neither are the doctors, but they think it’s connected to the autonomic stuff.
I also have red, burning palms. That’s another autonomic symptom.
My arms have lost some feeling in them and that’s an advantage because I can’t feel it when they take blood. And they take blood a lot.
I am still having “episodes” when doing anything for a prolonged amount of time, especially when it’s warm outside. I have had them in front of medical professionals, so thankfully no one thinks it’s a somatic disorder. I drink 3 liters of water a day, eat a healthy diet, and basically do all I can to fix this stuff.
My stomach problem – the gastroparesis – is also due to autonomic dysfunction.
I sit down a lot. I haven’t fainted yet, but I’ve come close and I know the location of every bench in every store I shop in. If they don’t have a place to sit down, I don’t shop there.
These illnesses have affected every aspect of my life.
Due to medical expenses that Medicare/Medicaid don’t cover, I can’t pay my bills this month, except rent.
It’s dire, and I’m worried.
So my plan to move down to Memphis is indefinitely delayed, though I still would like to go before winter. I get very depressed thinking about it.
I’m not a child separated from her parents and living in a cage in a foreign country.
I’m not a child in a hospital needing life-saving treatment and being told by ICE that I have to leave the country, to go to my certain death.
I’m not a victim of a mass shooting.
I’m not a subject of police harassment, or a victim of a police shooting.
I’m not getting shouted at in stores for not speaking English.
I’m not being told to “go back to where you came from”, or “this isn’t your country”.
I’m not black. I’m not Latina. I’m not Muslim. I’m not a young, uppity woman – I’m an old, uppity woman who could easily be mistaken for a 45 supporter because of how I look, thanks to the millions of old white shithead racists who are. White privilege exists for every white person, whether you want it or not. I feel like a shmuck for complaining.
Life’s really, really bad for me right now. But it’s not as bad as it is for others.
Weird news of the week: From Sky News, “60 Year Old TVs Dumped Outside Homes…By Man Dressed as an Old TV.”
According to NBC12, at least 60 residents in Virginia have woken up in the morning to see the retro screens sitting outside their front door.
Adrian Garner, who caught the culprit on a home security camera, said: “It was a guy dressed in a jumpsuit with a TV for a head. It’s the weirdest thing. He squats down, puts the TV there and walks off. It’s really weird.”
My first thought was, “Did this happen in Falls Church?” Heh.
This week’s recommendation: The first Tool CD release in 14 years (!!) came out August 30. It’s called “Fear Inoculum” and, as is usual with Tool CDs, has amazing artwork and comes with some extras. It’s sold out everywhere but you can get companies like Target to notify you via email when it becomes available again, and it’s about $35 (no, I haven’t bought one). You can listen to it on Spotify. They’ll no doubt be on tour soon, so if you have an extra gazillion dollars, they’re definitely worth whatever they’re charging. I’ve never seen them in concert but I know folks who have, and I try not to think about that because it makes me weep. Their concerts are experiences. Yes, I am a huge Tool fan. If you like progressive, intellectual metal music, you will love this band.
Be good. Be kind. Take care of your health, and never give up trying to get a diagnosis.