Autonomic Testing
Friday, 29 August 2025 02:07 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
crashmarguliesI survived autonomic testing today, which is great. While I wouldn't say I'm thriving, I'm definitely surviving fine, and I wasn't sure if I would be fully conscious, let alone feeling okay enough to think in full sentences. I had to stop most of my load-bearing meds beforehand, as the kids say these days, and I was definitely having a bad and uncomfortable time. But I'm through that one and onto more!
More about anticipating rough medical experiences, advocating for a respirator (successfully!) in a medical appointment for the first time, getting autonomic testing, and my cat below the cut.
Dawn (dawnsupernova) & I prepared for all kinds of catastrophes: Would my provider/s resist my requirement of a respirator? was I going to puke? What if I did pass out? What if the tests triggered my "suspected seizure" neuro symptoms (known as "brain on fire" after a phenomenal book by the same name, although my symptoms are NOT as severe) and not just "probably dysautonomia" neuro symptoms?
Thankfully, very little of that happened. My technician went and put on a respirator right away when I explained I couldn't do part of the test that involved en breathing into and out of a tube unless he wore a respirator to ensure the air was clean enough. I always wear an N95 respirator to the hospital (and everywhere else actually), and often it's one of my elastomerics, but I rarely advocate for practitioners to wear them. A lot of this is because there's a real and present danger of my request being pathologized in a way that leads down a path of involuntary psych incarceration for various reasons.
My technician didn't have a problem, though, and popped out to put on a 3M v-flex right away, which was a great way to start.
In one to two weeks I'll get messages back about whether my autonic nervous system is working. Your ANS is responsible for such things as heart rate, blood pressure, respiration, and sweating. Dysautonomia, or dysfunction of that part of your nervous system, can cause all kinds of fun symptoms and disorders. Probably most well-known is POTS, but there are other types too.
Here's a video about what my test looked like. I had a really hard time with inhaling for 15 sustained seconds (but this night be a physical lung size thing?), and 10 minutes is definitely the limit if my standing tolerance these days between these symptoms and joint instability.
I had to forgo all the usual braces and compression-wear as well as medication, so I was very glad to be done with it all and back in my compression socks and fully steel boned corset before we even got in the car.
I won't have results for a while, and my suspected dysautonomia has never caused me to pass out, but Dawn said my heart rate was 180 bpm the whole time we were doing the "standing" part of the test, even though I had been laying flat and unmoving on a table-bed for about an hour beforehand. So that's... fun.
Dawn is making me chicken wings in the kitchen to celebrate a test completed, even though I have a small battery of upcoming tests and appointments still to come. I mentioned it and she and Mik (stink_mikenzie were just like lol she'll just make you food again? So I guess the high point of being tossed around like a bit of a medical hot potato is that I I'm?get to eat actual potatoes (and chicken wings.)
(The potatoes [fries] were great and the wings were amazing. Hot wings are one of my favorite foods of all time and I've been told watching me eat them can be somewhat disturbing).
Went to bed before I fully finished writing any of this. Forgot to take my makeup dose of SSRIs + anti-migraine/anti-seizure drug and definitely started getting the brain zappies from SSRI withdrawal before I fell asleep... but Jaywalker, my cat who lives at Cat House, was asleep on my belly, so I was absolutely not getting up for anything, especially since it's his Birthday Season and Jay gets whatever he wants.
I rescued Jay off the street near the shitty falling apart triplex I used to live in with Void and NIBF (Non-Internet Best Friend) in 2023, and there was a stretch of time before he picked me out by sticking his little stray kitten butt in my face in late August and when I got him in to the vet for his tests and vaccines in mid September. So he has a whole set of weeks where I get to spoil him. Dawn said we might make him a whole chicken breast for himself, which I will absolutely photograph and find a way to share with y'all.
Next medical tests on my docket are a sleep-deprived EEG and some brain MRIs. Not sure exactly how much sleep I need to be deprived of, but they're going to flash bright lights in my face and make me hyperventilate on purpose, so for once I hope I do have maybe-seizure symptoms. At least they'll get them on-camera, so to speak!
Also, to mention: I do know that wider city and world events continue to happen as I go through pretty minor medical bullshit. I'm processing and writing slowly as my brain fights for space to do so between testing, resting, and resetting. (dawnsupernova) has written something that summarizes a lot of my emotions in this moment, and I'm sure I'll come back to it.
If you have questions about med tests or anything else, comments on this & so far all my public posts are open to anonymous commenting and my inboxes are open on whatever platforms you happen to have me on.
Take care of yourselves. Get rest. Get angry. Get busy.
♥ C
More about anticipating rough medical experiences, advocating for a respirator (successfully!) in a medical appointment for the first time, getting autonomic testing, and my cat below the cut.
Dawn (
dawnsupernova) & I prepared for all kinds of catastrophes: Would my provider/s resist my requirement of a respirator? was I going to puke? What if I did pass out? What if the tests triggered my "suspected seizure" neuro symptoms (known as "brain on fire" after a phenomenal book by the same name, although my symptoms are NOT as severe) and not just "probably dysautonomia" neuro symptoms?Thankfully, very little of that happened. My technician went and put on a respirator right away when I explained I couldn't do part of the test that involved en breathing into and out of a tube unless he wore a respirator to ensure the air was clean enough. I always wear an N95 respirator to the hospital (and everywhere else actually), and often it's one of my elastomerics, but I rarely advocate for practitioners to wear them. A lot of this is because there's a real and present danger of my request being pathologized in a way that leads down a path of involuntary psych incarceration for various reasons.
My technician didn't have a problem, though, and popped out to put on a 3M v-flex right away, which was a great way to start.
In one to two weeks I'll get messages back about whether my autonic nervous system is working. Your ANS is responsible for such things as heart rate, blood pressure, respiration, and sweating. Dysautonomia, or dysfunction of that part of your nervous system, can cause all kinds of fun symptoms and disorders. Probably most well-known is POTS, but there are other types too.
Here's a video about what my test looked like. I had a really hard time with inhaling for 15 sustained seconds (but this night be a physical lung size thing?), and 10 minutes is definitely the limit if my standing tolerance these days between these symptoms and joint instability.
I had to forgo all the usual braces and compression-wear as well as medication, so I was very glad to be done with it all and back in my compression socks and fully steel boned corset before we even got in the car.
I won't have results for a while, and my suspected dysautonomia has never caused me to pass out, but Dawn said my heart rate was 180 bpm the whole time we were doing the "standing" part of the test, even though I had been laying flat and unmoving on a table-bed for about an hour beforehand. So that's... fun.
Dawn is making me chicken wings in the kitchen to celebrate a test completed, even though I have a small battery of upcoming tests and appointments still to come. I mentioned it and she and Mik (
stink_mikenzie were just like lol she'll just make you food again? So I guess the high point of being tossed around like a bit of a medical hot potato is that I I'm?get to eat actual potatoes (and chicken wings.)(The potatoes [fries] were great and the wings were amazing. Hot wings are one of my favorite foods of all time and I've been told watching me eat them can be somewhat disturbing).
Went to bed before I fully finished writing any of this. Forgot to take my makeup dose of SSRIs + anti-migraine/anti-seizure drug and definitely started getting the brain zappies from SSRI withdrawal before I fell asleep... but Jaywalker, my cat who lives at Cat House, was asleep on my belly, so I was absolutely not getting up for anything, especially since it's his Birthday Season and Jay gets whatever he wants.
I rescued Jay off the street near the shitty falling apart triplex I used to live in with Void and NIBF (Non-Internet Best Friend) in 2023, and there was a stretch of time before he picked me out by sticking his little stray kitten butt in my face in late August and when I got him in to the vet for his tests and vaccines in mid September. So he has a whole set of weeks where I get to spoil him. Dawn said we might make him a whole chicken breast for himself, which I will absolutely photograph and find a way to share with y'all.
Next medical tests on my docket are a sleep-deprived EEG and some brain MRIs. Not sure exactly how much sleep I need to be deprived of, but they're going to flash bright lights in my face and make me hyperventilate on purpose, so for once I hope I do have maybe-seizure symptoms. At least they'll get them on-camera, so to speak!
Also, to mention: I do know that wider city and world events continue to happen as I go through pretty minor medical bullshit. I'm processing and writing slowly as my brain fights for space to do so between testing, resting, and resetting. (
dawnsupernova) has written something that summarizes a lot of my emotions in this moment, and I'm sure I'll come back to it.If you have questions about med tests or anything else, comments on this & so far all my public posts are open to anonymous commenting and my inboxes are open on whatever platforms you happen to have me on.
Take care of yourselves. Get rest. Get angry. Get busy.
♥ C
