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. 😊
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!
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.
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.
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
OMG, ive never heard of this. I have suffered from most of these problems and the Dr's have either ignored it or had trouble pinning it down. "exercise induced asthma" was the closest I got. I'd tell them about my vertigo but I could never pinpoint when it came about. I have heart palpatations, but only noticed them when I was super bored (like in church as a kid) but when I was in the Dr's office they'd run the test and find "nothing abnormal". They'd check my blood pressure and be "nope, nothing here". Excessive sweating. I keep getting tendonitis, I'm wondering if it has something to so with this. I have "short" tendons which means I have great explosive power but get hurt by repititous movements easily. I started weight lifting years ago and my personal trainer was confused because although I could lift weights like a champ and leg press huge amounts, I simply couldn't do squats. Any time I tried I went literally white, then green, then passed out. Ive got lactose intollerence which the dr's can't find but basically have IBS whenever I consume any dairy and am allergic to gluten, but not celiac. I had migraines continuously as a child, found swimming (which I was forced to do) torturous, basically panic attack while in the water. In a resting state (which is what I'm at the Dr's office) they can never find anything wrong. This fits so much, knowing this is a thing makes basically my whole life so clear. I'm going to my GP armed with this knowledge to see what can be done. As a personal comment on the building up slowly vs explosive exercise thing; My older brother used to try and make me "normal" when I was a kid. He was a psycho bully. Part of this was him using negative reinforcement for corrective measures through physical punishment to try and "toughen me up." e.g. Outswim me or I'll drown you, outrun me because if I catch you i'll cut you. Obviouslty this resulted in me being in a consatnt state of panic but more importantly this made it so that I learnt to mask my symptoms. If I showed any weakness in front of him I'd get it twice as bad. I learnt to ignore things like vertigo and just grit my teeth, pretend like nothing was wrong and get through it. It made my mask into "me." When I grew up I got a very physically demanding job. basically swinging a sledgehammer for 12 hours a day. The first 20 minutes of that job was horrible. I went behind a nearby shed, fell over and threw up. I took 5 minutes, washed my mouth out and went back to it. The other guys knew how it was and were supportive, but questioned if I could do it. I finished the day and they said "so, are you coming back tomorrow?" I did, and then the next day and the next. The first 2 weeks were the hardest of my life, but then it's like my body went "well, if this is how it is I'd better get with the program." It's like my lung problems evaporated after that. My body became stronger and even my brain fog lifted quite a bit. I think I had been trained to fear exercise, that it was just something you do to stop being tortured if you fail to go fast or hard enough, but after a few weeks of anxiety telling my body "something horrible is going to happen" and then nothing bad happening, my entire auto system just... relaxed. It was like exposure therapy in a way. I was early 20's then and if I did that now it'd kill me. I got an infection which meant i needed to give up that job and went to work in an office, which honestly is a pity. I got a rocking body from that job which I lost and later reclaimed about 10 years later by going to the gym. Yet again, after not exercising for so long I felt terrible when I first started again. Luckily I had a great personal trainer who encouraged me to take things at my own pace, she really took the pressure off of me and soon I was back to my old muscular self. If I could do it all again, my advice is find someone who is supportive and knowledgable, like my personal trainer, to guide you through how to exercise safely and to motivate you gently while still giving you a little push here and there but don't be afraid to push against this arbitrary limitation that your body is yelling at you through anxiety.
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 😅
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
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?
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
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?
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
@@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? 🤷🏼♂️
"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.
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Wow, so many astounding parallels to my experience. “Walk it off,” “it’s anxiety,” “lazy.” The health diary/logging. Sending love!
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. 😊
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!
"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.
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.
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.
I've had this all my life and just now have a name for it. Thanks
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
OMG, ive never heard of this. I have suffered from most of these problems and the Dr's have either ignored it or had trouble pinning it down. "exercise induced asthma" was the closest I got. I'd tell them about my vertigo but I could never pinpoint when it came about. I have heart palpatations, but only noticed them when I was super bored (like in church as a kid) but when I was in the Dr's office they'd run the test and find "nothing abnormal". They'd check my blood pressure and be "nope, nothing here". Excessive sweating.
I keep getting tendonitis, I'm wondering if it has something to so with this. I have "short" tendons which means I have great explosive power but get hurt by repititous movements easily.
I started weight lifting years ago and my personal trainer was confused because although I could lift weights like a champ and leg press huge amounts, I simply couldn't do squats. Any time I tried I went literally white, then green, then passed out.
Ive got lactose intollerence which the dr's can't find but basically have IBS whenever I consume any dairy and am allergic to gluten, but not celiac.
I had migraines continuously as a child, found swimming (which I was forced to do) torturous, basically panic attack while in the water.
In a resting state (which is what I'm at the Dr's office) they can never find anything wrong.
This fits so much, knowing this is a thing makes basically my whole life so clear. I'm going to my GP armed with this knowledge to see what can be done.
As a personal comment on the building up slowly vs explosive exercise thing;
My older brother used to try and make me "normal" when I was a kid. He was a psycho bully. Part of this was him using negative reinforcement for corrective measures through physical punishment to try and "toughen me up." e.g. Outswim me or I'll drown you, outrun me because if I catch you i'll cut you. Obviouslty this resulted in me being in a consatnt state of panic but more importantly this made it so that I learnt to mask my symptoms. If I showed any weakness in front of him I'd get it twice as bad. I learnt to ignore things like vertigo and just grit my teeth, pretend like nothing was wrong and get through it. It made my mask into "me."
When I grew up I got a very physically demanding job. basically swinging a sledgehammer for 12 hours a day. The first 20 minutes of that job was horrible. I went behind a nearby shed, fell over and threw up. I took 5 minutes, washed my mouth out and went back to it. The other guys knew how it was and were supportive, but questioned if I could do it. I finished the day and they said "so, are you coming back tomorrow?" I did, and then the next day and the next. The first 2 weeks were the hardest of my life, but then it's like my body went "well, if this is how it is I'd better get with the program." It's like my lung problems evaporated after that. My body became stronger and even my brain fog lifted quite a bit. I think I had been trained to fear exercise, that it was just something you do to stop being tortured if you fail to go fast or hard enough, but after a few weeks of anxiety telling my body "something horrible is going to happen" and then nothing bad happening, my entire auto system just... relaxed.
It was like exposure therapy in a way.
I was early 20's then and if I did that now it'd kill me. I got an infection which meant i needed to give up that job and went to work in an office, which honestly is a pity.
I got a rocking body from that job which I lost and later reclaimed about 10 years later by going to the gym. Yet again, after not exercising for so long I felt terrible when I first started again. Luckily I had a great personal trainer who encouraged me to take things at my own pace, she really took the pressure off of me and soon I was back to my old muscular self.
If I could do it all again, my advice is find someone who is supportive and knowledgable, like my personal trainer, to guide you through how to exercise safely and to motivate you gently while still giving you a little push here and there but don't be afraid to push against this arbitrary limitation that your body is yelling at you through anxiety.
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.
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 😅
i love this channel so much. thank you so much for your videos
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.
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
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?
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.
I find that my panics are blood pressure related and that propranolol help beta blocker
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
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?
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
16:30
Do you have any other videos on your exercise impact & routine? Thank you
Yep! Here you go - ua-cam.com/video/m5DFpqbJuGg/v-deo.html&ab_channel=SydneyZarlengo
Wait now I need to know the best tortilla chip brand
Late July is the best brand hands down
Well. Apparently I need to look into POTS because holy shit that sounds like I'm being @ed right now.
Why did you need to, or seem to want to, “fight” the doctors to get various diagnoses?
To get proper treatment???
@@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? 🤷🏼♂️
Are you from the United States ?
"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.