electroma89

[electroma89]

Animated scrap metal figures by Guillermo Galetti

[electroma89]

The Blade of Frontiers (with a sturgeon spiky tail)

[electroma89]

Hello!

I'm reaching a point of desperation. Asking for some help/advice regarding orthostatic intolerance .. If you know about this or know about people who'd be willing to discuss it, I would be extremely grateful for any help I can get. It's starting to feel hopeless. Shares are appreciated. ;;

I want to make sure I'm understanding something. I'm autistic, so sometimes words don't quite translate to me: a sentence written a specific way may be difficult for me to interpret.

With that in mind, TL;DR: What is the diagnostic criteria for POTS? Is it that you have to have a 30bpm increase from a resting heart rate (or over 120bpm) AT ANY POINT upon standing in a 10 minute period, or SUSTAINED FOR A FULL 10 MINUTES?

Why I'm asking (VERY long under the spoiler):

I've been experiencing worsened symptoms upon standing for the past several years, ever since I got COVID. I've always had some weirdness in my body - of various kinds - but it's never been this severe. (For instance, I've been "cold-natured" and had cold hands and feet and my hands/legs would turn purple when I was young, and I'd get winded when exercising, maybe "uncomfortable feelings" (which I think now is blood pooling?) in my legs, but I wouldn't struggle to the point I am now.) I'm experiencing:

Dizziness and lightheadedness, sometimes feeling like my head is spinning, upon standing. I usually have to stop and wait for my head to feel less dizzy before I can walk, a solid few seconds, then I'm okay Enough to get going.

A severe increase in heart rate upon standing, especially if I was lying down (30-60 bpm from what I've monitored), but it happens if I was only sitting down/squatting too.

Blackened vision bordering on loss of vision, sometimes loss of hearing, upon standing

MUCH more fatigue with general tasks despite the fact I've been consistently exercising, doing HIIT workouts to keep my body conditioned, daily, for the past 4 years!!!

Extreme shortness of breath and dizziness, sometimes to the point of wondering if I'll faint in the shower. (today I took my heart rate while in the shower and it was over 150bpm. I was just standing there. Shaving.) I haven't fainted yet.

Significantly worse symptoms in the morning vs the evening or at night. At night I actually have energy!

Sluggishness, lethargy in the mornings, often leading into the afternoon

Issues with prolonged standing - I have to wear 20-30mmhg compression socks to be able to stand or have long days out, like when I'm selling things for my job or going out for an active day with friends.

Everything gets worse when I'm menstruating. :))))))

This has had a significant impact on my life. And from what I can gather, it sounds like POTS. I've been pursuing a diagnosis for two years. Doctor after doctor has addressed other concerns: we've done blood tests, heart monitors, ECGs, ultrasounds - my heart is physically healthy. I went to a cardiologist who specializes in POTS, and he looked me in the eye and said "I think you have POTS." MULTIPLE TIMES.

And I do already do what I can with this. I exercise (again! Literally four years of decent exercise! 45 minutes a day! And I recently started walking an hour a day so I get nearly 2 hours of focused activity!!!), I ONLY drink water and plenty of it, and I eat salt on my food. I already do everything.

I'm worried this is affecting my outcomes. Specifically, I'm worried since I've been essentially doing the "treatment" for this type of thing, that my result are better than they would be otherwise.

The tests:

I've actually done the gold standard tilt table test, and apparently I didn't have the numbers necessary to diagnose me with POTS. I was diagnosed with orthostatic intolerance (the heartrate issues) and vasovagal syncope (which is the issue with vision/hearing upon standing, I guess). But given my symptoms, I feel very strongly my body is exhibiting signs of POTS. That's .. a big reason I'm making this post.

My "official" tilt table test results (taken last year) were, to make it brief:

Baseline: 59 bpm

Tilted 30 degrees: 60 bpm

Tilted 45 degrees: 76 bpm, then 64 bpm

Tilted 70 degrees: 78 bpm. It hovered around the high seventies/low eighties for a bit, then at the thirteen minute mark, went to 94.

My heart rate didn't go below 80 for the rest of the test, which was about 20 more minutes. The lowest it got was 82 but it would waver between 85-87 and 94 mostly; the highest it got was 101, when my blood pressure dropped significantly and I had to ask to be laid down so I wouldn't fall down off the table.

The people running the test said they got enough information even though I ended the test early, and every doctor insists the tilt table is the "gold standard" test - the absolute best - for detecting POTS, even though it doesn't EVER take you to 90 degrees? It slowly tilts you up, which allows your body to adjust? And I had to hold myself up, the straps holding me down were just for positioning I guess??? What do you mean this is a better test for something that impacts me when I'm going from lying down to a full 90 degree upright position within seconds?????

I've done two "poor man's tilt table" tests, or standing tests, at home. Below are the numbers. The first time I did it (2023), I didn't know you should take it at intervals for 10 mins, so I only did 5.

BP: 124/69 hr: 72 - laying down (This was after 5 minutes of lying still, not speaking, and actively trying to relax)

BP: 124/80 hr: 139 - first stand up (I stood up "normally," I didn't rush to stand or jump up)

BP: 123/89 hr: 131 - 5 minutes after (I stood still, and made sure to not lock my knees too much)

The second time (2024), the person helping me with the test didn't understand we needed a full 10 minute reading, so we only got up to 8 minutes. Still, these were the results:

Resting: 66 bpm

Standing: 131 bpm

2 mins: 96 bpm

4 mins: 95 bpm

6 mins: 97 bpm

8 mins: 95 bpm

Doctors look at my symptoms and remind me well, we treat POTS ad Orthostatic Intolerance the same. They don't think it matters if I technically have a specific diagnosis or not.

I know this. I have been told this so many times. I want the validation of a diagnosis I fit the criteria for. I want to be able to explain to people what's going on with me. I want, since I'm at the ripe old age of twenty five and can barely shower in the mornings, the bare minimum of having a name for what I have to deal with every single day.

But I'm really worried. I'm worried I've ruined my chances of this being caught by exercising/"treating" it too much, or I'm misunderstanding the diagnostic criteria, or I'm just stupid in general, being overdramatic and should give up because I've been told I have orthostatic intolerance, what does it matter if it's POTS specifically?

But this looks so much like POTS. This sounds so much like POTS. And I am getting the numbers necessary, or else ones a WHOLE lot like them, at home. And that's what's bothering me?

If I wasn't taking standing tests and finding such high bpm increases, which again, seemingly fit the diagnostic criteria, I wouldn't be bothered. But I am.

This past week I went to nurses that work in a specific doctor's office, the doctor who apparently "diagnoses everybody with POTS." I was hopeful they'd listen. They did a standing test in the office.

My heart rate started around 70 when resting. (there's multiple reasons it was higher than what my "actual" resting rate is, but I won't explain that; this post is too long already) I stood up and it went to around 125. And then within a few minutes, it went down to 80 or 90, I wasn't checking exact numbers.

They couldn't diagnose me based on those numbers.

i can't shake the feeling if i'd been able to relax fully, or had just gotten my body to unwind, i might have had a resting rate of 60 - closer to the baseline when i was allowed to rest before the tilt table - and could've gotten diagnosed.

i feel like a failure.

Advice, information, all is appreciated. If anyone understands the diagnostic criteria, or has a similar story, I'd really love to hear. Thank you.

[electroma89]

Thank you for the tag and letting me see that picture because what 🤣🤣😭

I was feeling fancy yesterday so I had white wine in my red glass with my lunch

@naterson @lokislittlesigyn @cozy-the-overlord @arklayraven

Tagged by @buckstattoos to share a random photo from my gallery. You get an apple from the volunteer work banquet a few weeks back

Tagging @donttelltheelff @aintgonnatakethis @jimothystu @eddiestach87 @lostinthelxghts @buckybarnesss @morrison-the-ii and @howiehamlin show me your photos this is a threat (it is not theres absolutely no pressure just like to be a menace sometimes k bye 💜)

[electroma89]

don't give up

[electroma89]

If it requires fake smiling I probably won’t go

[electroma89]

[electroma89]

I'm back over here after so long! Thank you for the tag 🥰 (estoy hablando en inglés porque la mayoría de mis mutuals aquí hablan ese idioma, no porque tenga la realidad alterada 🤣)

I tag my (hopefully still) mutuals 😭 @naterson @lokislittlesigyn @lucywrites02 @cozy-the-overlord @moumouton4 @gaitwae @scribeofmorpheus (I don't remember the other users but if you see this and we used to talk consider yourself tagged 😭😭😭)

new tag game, because I can

no pressure tags:

@red-velvet-0w0 @nyxisagod @lynx-brynjar @encryptidarchivist @justbugsnstuff

@justanotherenbyhere +Anyone else

[electroma89]

BBC / PARIS OLYMPICS 2024 Tom Hiddleston

[electroma89]

Aya Nakamura. La garde républicaine. Paris 2024.

Légendaire!

[electroma89]

I'm vibrating imagining old conservatives watching Aya make the National Guard dance to her songs.

Like, I honestly don't like her songs but this moment? Icon.

[electroma89]

the palestinian olympic team in paris 🇵🇸

[electroma89]

@moumouton4

2024 Paris Summer Olympic Games Opening Ceremony

[electroma89]

Do we all agree that the metal show mixing opera singers, fire, art and history was INSANE, right?!🤯🤩🤘

[electroma89]

Gojira performing a metal version of ”Ah! Ça Ira” at the Paris Olympics opening seremony (x)

July 26th 2024

[electroma89]

[electroma89]

The Hobbit trilogy (2012-2014), dir. Peter Jackson