Dysautonomia, POTS, & Autism [CC]

We keep hearing the word "dysautonomia" appear of late, so what actually is it, what is POTS (my form of dysautonomia), and what is the connection between this and autism? Turns out there are quite a few!
Sources & Resources:
What is Dysautonomia? Long COVID-19 - • What is Dysautonomia? ...
POTS Explained & Chronic Illness Tips - • PoTS Explained & Chron...
Dysautonomia in autism spectrum disorder: case reports of a family with review of the literature - pubmed.ncbi.nlm.nih.gov/22937...
DYSAUTONOMIA IN AUTISM - scienceoveracuppa.com/2019/05...
Dysautonomia in the Ehlers-Danlos syndromes and hypermobility spectrum disorders-With a focus on the postural tachycardia syndrome - pubmed.ncbi.nlm.nih.gov/34766....
Exercise and Non-Pharmacological Treatment of POTS - ​www.ncbi.nlm.nih.gov/pmc/arti...
Identifying Dysautonomia - thedysautonomiaproject.org/id...
Large study ties gut issues in autism to inflammation - www.spectrumnews.org/news/lar....
Check out my thesis! - www.disabledautisticlesbian.c...
Follow me on insta - / disabled.autistic.lesbian
If you want to support me financially, you can buy me a smoothie! - www.paypal.com/paypalme/sydne...
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Autism Resources:
Ultimate resource guide - www.disabledautisticlesbian.c...
How to support an autistic person - www.disabledautisticlesbian.c...
Help! I think I’m autistic - www.disabledautisticlesbian.c...
Unmasking/How to Start Over - www.disabledautisticlesbian.c...
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My Music:
Fearlessly Different (Single) - ditto.fm/fearlessly-different
Bold (EP) - • Bold full
Rewrite History (Album) - ditto.fm/rewrite_history_0d14...
Alive (Single) - li.sten.to/alive
Start Over (Album) - li.sten.to/start-over
The Confused Linguist (Album) - li.sten.to/the-confused-linguist
Find me on Bandcamp - sydneyzarlengo.bandcamp.com/m...
Check out my #ActuallyAutistic playlist made of entirely autistic artists!
open.spotify.com/playlist/3gI...
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Hello my dears!
My name is Sydney and I’m an actor/singer-songwriter who writes music about my experiences being autistic, disabled, gay, gender fluid and in general, a human. My goal is to fill musical gaps and write about things people often forget to make music about. I’m also a vintage enthusiast and disability advocate (among other things). And, most importantly, my favorite color is buttercup yellow :)
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Find me on...
Facebook - / sydney-zarlengo-110498...
Instagram - / disabled.autistic.lesbian
Tiktok - / disabledautisticlesbian
Website - www.disabledautisticlesbian.com/
Email - [e-mail]
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[@straightcray]

Wow, so many astounding parallels to my experience. “Walk it off,” “it’s anxiety,” “lazy.” The health diary/logging. Sending love!

[@fintux]

Anyone with long covid or ME/CFS should be *extremely* cautious about exercise. If the exercise leads to symptoms or worsening of symptoms within 24-72 hours (PEM/PESE), it means you've done too much exercise (can be also mental, emotional or social extortion leading to this) and when this happens repeatedly, it can lead to permanent detoriation of health! So be careful, do not exceed your exercise tolerance window if this is the case.

[@aspidoscelis]

"Control your anxiety" has got to be the least helpful instruction, ever. OK, now I'm worried about my anxiety. In addition to whatever else.

[@PhoenixEvolution]

Fantastic and jam packed vid! being that i also live with all the same experience and plethora of diagnostics, It's refreshing to see another human that just gets it

[@KellyCDB]

Autistic, hEDS, MCAS, and hyperadrenergic subtype POTS here. A lot of my hyperPOTS symptoms are well-controlled with salt and meds, but it still exacerbates communication issues because folks tend to think i'm "overly emotional" or "hysterical" from all the norepinephrine my system dumps into my body to compensate (nearly twice the cutoff for hyperadrenergic subtype). My voice shakes or gets loud, I cry very easily, especially talking about anything even slightly emotional. I do not feel "overly" emotional. I feel whatever my regular amount emotion is. But my affect is heightened, especially if I'm not heavily masking and just letting myself feel and express and be authentic. It started after a flu when I was 13, and was misdiagnosed variously as panic attacks, anxiety, and "fear of standing." Finally got the correct diagnosis 20 years later. I'd love any communication tips from any other autistic hyperPOTSys if you are out there and relate!

[@crystalokeefe197]

I've had this all my life and just now have a name for it. Thanks

[@oliver-violet9381]

i love this channel so much. thank you so much for your videos

[@pixiechicjk]

Wow….I am 45 and you described my wonder years to a tee. I was diagnosed with everything but ASD and am discovering that I am likely on the spectrum. Thank you for this video. You have been so helpful. 😊

[@mmegraham]

Using alcohol helps relieve some anxiety for me, which is good for my body when I'm having a dysautonomic meltdown. I don't find that alcohol use changes any of my other POTS-y type symptoms. Also a big EFF-U to those docs from when you were 13.

[@kaylagoold4053]

This is really interesting. I’m working with a chronic infections doctor, and she actually thinks autism is largely a result of chronic infections (such as lyme, bartonella, bebesia, mold/fungus, etc.) because it has such a high comorbidity rate with said infections and other diagnoses/symptoms that you mentioned. And she’s seen improvement in ASD symptoms/traits with treatments for the other infections. I’m not quite sure I believe 100% that autism is actually a symptom rather than a disorder on its own, but the more I research it, the more I see how it can tie together… Correlation is not causation, but it sometimes gets close/closer! Certainly more to research. And definitely another layer to my imposter syndrome haha 😅

[@tinyty6570]

I Had no idea autism and autonomic disorders can be related ...I have autism and I got diagnosed last year with dysautonomia when I suffered a severe vitamin defeciency with nerve damage and I tried like hell to fix it with Dr's and I developed dysautonomia in the process. My sister also has dysautonomia she was diagnosed years back when she started passing out alot and such and she also has lupus and EDS in addition I have Dysautonomia, b12 absorption issues, and reynauds disease..and i was told im hypermobile but they dont know about eds...looking for the missing puzzle peice still 2 years later Doing the best I can I use a cane to walk a wheelchair for far distances and a rollator walker..making tje best out of a sucky situation

[@JohnSummerford]

16:30 Do you have any other videos on your exercise impact & routine? Thank you

[@disabled.autistic.lesbian]

Yep! Here you go - kzbin.info/www/bejne/o2and6Onl6-ofck&ab_channel=SydneyZarlengo

[@elliotm.5057]

This video clears up a lot of things and I'm going to go research for a couple hours lol but I do have one question, could circulation issues be at the root of my legs falling asleep whenever I sit for extended periods of time? Or, waking up in the morning with your hands numb? I am autistic and I have introception issues, so I always just chalked it up to forgetting to adjust so they wouldn't fall asleep, but now that I think about it there could be a bigger issue here. Is this an experience you've had?

[@disabled.autistic.lesbian]

Oh 100%!!! I am numb all the time. The amount of bloopers I have of me filming videos, having my legs go numb during filming, and then me not realizing it and trying to get up after only to do a complete faceplant is SO many lol

[@kijekijikokwe]

Damn. I thought having 20 diagnoses was kind of a big deal. lol Walking while blacked out was such a flashback too. Thanks for sharing all of this.

[@mnickrowe]

This is most likely a silly question to a silly side tangent. As you’ve had POTS for long time now and mentioned it means spending a lot of time lying on the floor, made me think of all the Studio Ghibli films I’ve seen where it’s a common cultural thing of sleeping on a futon, did it ever cross your mind about having a futon at one point or another?

[@Authentistic-ism]

I'm deep in a spiral of research about peri-menopause at 43, and this sounds not that different and now i have a whole new set of questions.

[@FirstmaninRome]

I've had that pass out with standing once as a child, I think my blood pressure is weird, and sleeping on my hands has cause nerve damage.

[@FirstmaninRome]

I find that my panics are blood pressure related and that propranolol help beta blocker

[@jessicat4047]

Hormone differences could play a part in pots being more common in women, at least in the very binary way science combines gender/sex, it's dumb and annoying but estrogen/progesterone dominant bodies have different reactions than testosterone dominant bodies. Especially with pots symptoms increasing before and during menstruation

[@ilikebread757]

Wait now I need to know the best tortilla chip brand

[@disabled.autistic.lesbian]

Late July is the best brand hands down

[@LordWaterBottle]

Well. Apparently I need to look into POTS because holy shit that sounds like I'm being @ed right now.

[@tango-bravo]

Why did you need to, or seem to want to, “fight” the doctors to get various diagnoses?

[@samanthaw8837]

To get proper treatment???

[@tango-bravo]

@@samanthaw8837 in my experience, doctors typically rush to diagnose, and rarely need to be pushed, I’m assuming this is because they don’t want to be liable for missing something? 🤷🏼‍♂️

[@jessicapaden8710]

Are you from the United States ?

[@dus10dnd]

"Mmm, gender." Yet, reality. I am supportive of anyone's identity, but ignore reality is just an exercise in self-induced frustration. Now, perhaps the inputs to the observations are wrong... it has happened before. But, assuming a relatively unbiased collection of the data... what are you going to do? Life sucks sometimes... or maybe more often depending on your circumstances. I too am someone that self-induces frustration. Life is like a billion papercuts.