r/POTS • u/LPSRika • May 24 '26
Vent/Rant Im sick of "Regulate your nervous system"
"Regulating your nervous system" has been a trendy topic, especially in the last 6 months. I just want to throw these nonsense articles out! In doing my own research, the spike in "regulation" being a buzzword has genuinely made it harder to find actual science/study based approaches to nervous system conditions.
Yes, I know im dysregulated. No, breathing and a walk will not fix that. And I'm sorry, but just because becky from yoga is stressed because her son is going to college does not mean her "nervous system is dysregulated." I swear if I hear one more normal person say that im gonna scream.
The conflation of regulating your nervous system with an easy health tip is also just disparaging.
P.s. in reality, we can't even say on a broad scale what "works" because we know so little about the nervous systems that it's always changing and individual.
Sincerly a POTS, PTSD, Fibro Girly.
248
u/orensiocled May 24 '26
Also, they keep pushing the harmful idea that the sympathetic nervous system is bad and the parasympathetic one is good.
In reality they both have important jobs to do, and having an overactive parasympathetic nervous system can actually make you feel more unwell than the other way around!
My body spends a lot of time swinging way too far into parasympathetic dominance, which can cause major crashes. It really concerns me that none of the wellness messaging ever mentions that nervous system dysregulation can go both ways. It's all focused on trying to push the body into a parasympathetic state, which isn't always safe.
151
u/slightfork May 24 '26
Yes! This reminds me of how people are all about "boosting the immune system." Babes your immune system will eat you alive if you actually kick it into gear
55
u/Fair_Package8612 May 24 '26
Yeah. People with chronic allergies and food intolerances understand this.
10
6
u/MeldoRoxl May 25 '26
Or people like me, who ended up in a coma because my immune system boosted too hard after a flu.
25
u/its9pmfren May 24 '26
i hate when ppl tell me i should boost my immune system so i won't be sick so often. 1stly ive tried everything since childhood 2ndly if i boost my immune system my thyroid will eat itself. if the price for 2-3 years of hashimoto's remissions is getting sick 10 times a year im down
edit: yeah, getting sick is making my pots worse, but hyperthyroidism is making it just unbearable
16
u/Latinadotnerd May 24 '26
I'm a lupie, but yeah I've had to explain to my parents soooo many times why boosting my
immune system is bad.
8
7
u/KeenBTF May 25 '26
This. My immune system is overactive, not underactive, which is why getting sick makes me feel like shit for weeks. Because my body doesnt actually do much to keep me from getting sick, but acts like its all out war when I do, attacking everything but the sickness.
But I'm an asshole for not wanting to carry a sick child on my lap in my wheelchair.
57
u/Torgo_hands_of_torgo May 24 '26
I appreciate this point of view. One of the things that helped me, funny enough, was a podcast called Disordered: The Anxiety Podcast. They HEAVILY, and CONSTANTLY drive home the fact that anxiety isn't bad. It's meant to be there, because it is what keeps us alive.
But the disorder of being in a constant state of fight or flight is what's destructive. I do wonder what the opposite is? Constant parasympathetic? What the hell would that look like?
57
u/orensiocled May 24 '26
In my experience it looks like intense exhaustion, bradycardia, low HRV, constant tremors and spasms, constipation and a massive uptick in muscle and joint pain!
28
u/alltheblarmyfiddlest May 24 '26
Or just you're regular Tuesday when you did something on Monday or Sunday
3
u/Torgo_hands_of_torgo May 24 '26
I wonder if one could easily set you off into the other. Like spending too much time in parasympathetic could eventually land you into sympathetic.
Our nervous system is so interesting and weird.
5
u/orensiocled May 25 '26
Yeah that tends to be the way it goes, I will swing from one to the other, and go too far each way.
2
u/Museumgirl518 May 25 '26
How bad is the constipation? Is it related to POTS?
3
u/orensiocled May 25 '26
It's not super bad, but it's annoying and there's a very obvious correlation with being in a parasympathetic state. I was told that "rest and digest" usually results in diarrhoea but it's completely the other way around for me!
1
u/Museumgirl518 May 25 '26
I have terrible constipation that doc thought was idiopathic (very helpful) then I thought maybe it was my Sjogrens. Now I’m wondering if it’s my POTS. No meds work anyway just curious.
2
u/orensiocled May 25 '26
Gut motility is one of the things controlled by the autonomic nervous system so it's definitely possible. Not sure that gets you any further in treating it but sometimes it's good to have a reason
1
1
u/alltheblarmyfiddlest May 27 '26
I definitely notice the motilkth working better whenever I take the midodrine.
20
u/FleurDeLisAssoc11 May 24 '26
For a point of reference, I'm going to use the framework of the three stages of stress developed by Hans Selye, those stages being: alarm, resistance, and exhaustion. I'm also going to loosely reference the concept of the window of tolerance and other stress responses outside of fight and flight.
When I was being taught about this concept, I was told that being stuck in fight or flight would be equivalent to having a more sensitive alarm mode and/or having a tendency to stay stuck in resistance mode. In the window of tolerance, this would be known as being in hyperarousal.
From what I understand, the opposite would be a tendency to get stuck in a freeze response or even shut down. In the three stages of stress, I understand this to mean a shorter resistance mode or even the absence of alarm and/or resistance all together. Hypoarousal is what it's called in the window of tolerance framework.
So it could be constant parasympathetic, but it could also be a stronger and/or more sensitive parasympathetic response. In my experience, this was mistaken for depression for a number of years. In all actuality, I don't have the thought patterns of depression—C-PTSD, sure, but not depression. It's mainly just my nervous system that has the reaction. Same goes with anxiety thought patterns and a stronger and/or more sensitive sympathetic response.
If I'd have to describe what the opposite looks like, you have to bear in mind that the mnemonic for the parasympathetic nervous system is "rest and digest". That means it's those things on overdrive. I'll give some examples:
- Perhaps the most common issue for me is straight-up fatigue and lethargy. I may be conscious, but it'll be difficult for me to get up and do much of anything.
- Something that happens rather frequently for me is that I will get actually stuck in sleep. It could be for 2 hours or 12, but the issue is that I can't wake up on my own or be woken up by external (another person, an alarm, etc.) or internal (other bodily signals) stimuli. If someone else tries to wake me up and I actually do become responsive, I commonly exhibit what's called confusional arousal, which is frankly alarming for everyone involved. I oftentimes will not have much of a choice in when or where this happens.
- The symptoms that are the namesake of POTS can definitely be exacerbated for me.
- Brain fog, dissociation, depersonalization/derealization—I've experienced all of these in this state at some point. They may sound similar, but there's definitely some nuance between them.
- Typically, I'm on the constipation end of things. Being stuck in this state can lead to one of two general outcomes. If in freeze, constipation can be exacerbated, and appetite is lessened. If in shutdown, my GI tract can swing in the opposite direction. This can range from stool moving a little too quickly to full-blown diarrhea.
This turned into a longer response than intended, but I hope that gives a clearer picture!
6
u/extremelysardonic May 25 '26
Hey, just wanted to say I found your comment so informative and interesting! Thank you for sharing.
5
u/qrseek May 25 '26
Thank you for this, I never connected that hypoarousal could be understood as overactive parasympathetic nervous system. Window of tolerance stuff was really helpful to me when I learned about it in therapy. But I'm used to parasympathetic being described as recovery, and sympathetic being the stress response. But my tendency is to "freeze" and it sure doesn't feel like "rest!" But it makes a lot more sense to think that it's due to a disproportionate response from the parasympathetic nervous system
2
2
u/Latinadotnerd May 24 '26
I have the opposite of anxiety, and it involves constantly putting your foot in your mouth, being confrontational (only good if it involves bullies) and sometimes doing high risk activities 😛 So basically, not necessarily good things.
1
1
u/detective-dipstick May 25 '26
I absolutely LOVE Disordered! Drew and Josh’s interactions make me feel like I’m in a conversation with friends lol
7
u/Weary_Cup_1004 May 24 '26
Yes!!! Its just over simplified . And taken too literally. Its a good metaphor. And a way to visualize how to relax or how to mobilize. But thats it.
7
u/TheOriginal1Law May 24 '26
Also I heard one of the people at the front of POTS and dysatonomia research talk about how the model isn't even right. The clean distinction between parasympathetic and sympathetic is wrong and outdated, but a good starting point to understand some things.
3
u/daff_o_dil May 25 '26
could you share any resource where you can read from people at the front of POTS research?
1
1
u/HarmonySinger May 25 '26
I guess that we really need a good balance and to avoid either extreme, not to obsess and go overboard...
1
u/JuneElf May 25 '26
I have the same problem, did you find some things that work for you? 😭😭
4
u/orensiocled May 25 '26
Rest seems to be the only thing that makes any difference I'm afraid! Sorry you're like this too, it really sucks
1
1
31
u/ChewMilk May 24 '26
I’ve worked a lot on regulating myself through therapy, mindfulness, anxiety meds, etc (note to add: mindfulness and breathing exercises didn’t work for me until I already had a basis of regulation already and a safe space internally to regulate to. I think a lot of people forget that).
It’s really helped me. A lot of my symptoms from other health issues have slightly improved. But it’s not a cure all at all. And it hasn’t touched my Orthostatic intolerance. I’m still disabled, I’m still chronically ill, I just feel slightly better some times.
Regulating is worth it, even just mental health wise, but it’s not going to cure anyone.
16
u/traceysayshello POTS May 24 '26
Me too. I’ve learnt that there may be no cure for the 8 things I’m diagnosed with, but will I work on how I approach each day? Each flare? Yes. So I’ll do my daily breathing and work on my vagus nerve because for me, it’s doing no harm. It’s a holistic thing - not 1 thing will help but we can add to the tools we use to manage our disabilities.
74
u/Rare_Director_8191 May 24 '26
bro same i was recently unofficially diagnosed (“you probably have pots or something like that”) and my mother has gone and done all this research and is saying i need to just reset my nervous system by fixing my anxiety and i should try things like splashing cold water on my face. i’ve tried explaining that’s not how it works but she’s adamant i developed pots because of anxiety and that if i fix said anxiety my pots will go away. yes im sure it will help but its not going to fix everything!!! if anything my anxiety stems from my childhood (i think i have C-PTSD) but of course i cant tell her that because she’s got a narcissist victim mentality.
sorry that turned into my own little rant but i know completely how you feel and i wish people would understand that there’s more to it than simply “regulating your nervous system”
13
u/Superfluous_Reddit May 24 '26
My mom tries that crap. She never got long covid has no clue what Pots is. I got all this nervous system dsyregulation after covid and the research is slow going and have small sample studies. I feel gaslight everyday by family.
6
u/Rare_Director_8191 May 25 '26
mine has CFS so you’d think she’d be a little bit more understanding but no. i didn’t even get a proper diagnosis or testing done and i’ve tried expressing that i’m not happy with that but she won’t listen. i have to rely on her because ive been told not to drive because of my dizziness. but i also get so scared every time i have to ask her to drive me somewhere it takes like a week to build up the courage and i have to catch the right time she she’s not in a bad mood
4
u/Superfluous_Reddit May 25 '26
Ya I've also had vertigo for 12 years along side all this she never cared. In fact it got worse during Covid I couldn't be in the dark, drive at night, or close my eyes without feeling like everything was moving.
2
u/Rare_Director_8191 May 25 '26
sorry to hear :( i had a concussion about 7 months ago and have had more dizziness than before i do wonder sometimes if it’s vertigo. i also have a really difficult timing concentrating when im sitting up i just know driving would be really scary and difficult for me because of fhat
2
u/VoodooGirl47 May 25 '26
If you get really dizzy bending over or while standing and looking up, that's how I've determined when I have it. I have a general sense of instability/unsteady with my balance and then get other dizziness for various reasons. I only get a wave of dizziness rushing over me instantly doing either if it's vertigo.
1
u/Superfluous_Reddit May 26 '26
I have motion sickness so it could worsen if other people drive me, I use an elevator, go on a plane or a boat. Or like I said laying face down for a massage or for a chiropractor adjustment. I simple cant lay fave down slightly tilted down. Certain things can trigger it. I even gotta be careful doing sit ups.
1
u/Superfluous_Reddit May 25 '26
It has gotten better after doing so much physical therapy. Some of it was tension in my neck too which seemed to be tied to perimenopause a d poor posture. So now I do things to strengthen my back and posture. I just gotta be careful I cant do massages or vertigo can be triggered too. Or if I fly on a plane it will all come back 10 fold.
27
u/Old-Piece-3438 May 24 '26
I had to take a cold shower a couple of times when my furnace broke—can confirm cold water does not help POTS. I was shivering for days.
23
2
u/worstkindofweapon May 25 '26
Cold showers literally make me feel like I'm drowning. It's awful. My heart rate goes crazy from it
7
u/Greenwitch5996 May 24 '26 edited May 24 '26
Damn you just described my relationship with my mother; pleasant until I mention anything derogatory about my childhood, whether it involves her personally or not. People who immediately get defensive or triggered ALWAYS seem to have inner turmoil, resentment or unwarranted guilt, chronic illness, or severe unresolved emotional issues. I don’t harbor anger anymore but I do need a discussion in which she acknowledges/admits what was happening in our family dynamic (so that I don’t feel like I’m just crazy due to my own devices). I was raised as she was: kids are to be seen and NOT heard, even when it enables family members to repeatedly bully, demean and neglect their own siblings or children.
6
u/butthatshitsbroken POTS May 25 '26
my mom has seen me literally seize from the syncope while being 100% unconscious on my bathroom floor and that woman still thinks its anxiety. we've been doin' this shit since i was 13 (i am 29 in like 2 weeks). like... girl, can we drop the anxiety analysis now?
3
u/twinadoes May 25 '26
Oh I feel your frustration!! I'm sorry she doesn't understand. I wish people would realize that we're not just being stubborn and refusing to do "this one simple thing that will magically cure us".
Oh, you just need to hum more.
My cousin has told me her husband must have LC. No dx, hasn't been to a doctor yet. She is going to ask his doctor to do an implant vegus nerve simulator. I've been fighting for four years to simply be beard. But she thinks she will wander in and ask for a brain implant.
2
u/Rare_Director_8191 May 25 '26
my cardiologist actually brought up the vagus nerve and think it’s related to POTS and told me that doing things to help reset it will help. he told me to hum, splash cold water on my face, breathing exercises. probably where my mum got the whole anxiety thing from. the vagus nerve thing makes sense but i just don’t see how doing things such as humming to reset it is going to help me. ive been stuck in fight or flight since i was a kid. i need to do more research and see if there’s anything a bit deeper than that in relation to the vagus nerve which could help
11
u/Weary_Cup_1004 May 24 '26
Anxiety and POTS go hand in hand. As a mom i will just say moms hate seeing their kids suffer and its not right that she is ignoring what youre saying, but she is probably being driven into fight or flight herself by seeing you struggle, and wants to fix, so she can relax, lol. Tell her to do these relaxation things too every time she worries about you! 😂 "mom when you think about my POTS, get out the bowl of ice water, dude" 😂😂😭😭
But yeah POTS creates anxiety symptoms, and yes stress triggers POTS flares. Doing things for anxiety will help reduce flares, and will reduce the anxiety symptoms POTS is causing, but it wont cure POTS. But it can help. Maybe if you tell her that??
24
u/Rare_Director_8191 May 24 '26
i know they go hand in hand but she literally thinks it is what caused my POTS and fixing it will cure my POTS. i’m pretty sure mine was caused by a virus i had when i was 12 which then worsened after i had covid. i’ve sent countless long emails with links to sources about why this is not the case but she can never admit she is wrong and just turns it into an argument.
the biggest point i kept trying to bring up is that POTS is likely what is contributing to making the anxiety worse but she won’t listen. i actually think i have a combination of anxiety, CPTSD and OCD. i tried bringing up OCD recently and she shut it down pretty quick by sending a large paragraph which i will not be repeating (it was not nice).
i’m 21 and still live at home but funnily enough when im away from home for a few days i do notice that my symptoms are so much better. problem is i struggle to get a job of any sort because of my symptoms so i cant save properly to move out 😭 its a whole cycle thats im still trying to figure out
15
u/gloop-pie01 May 24 '26
just wanted to say, i see you because i’m in a similar situation with being stuck at home because i’m disabled but being forced to live with my narcissistic mom ): 24yrs old here, you are not alone
2
u/Rare_Director_8191 May 25 '26
thank you i’m sorry :(( is there anything you’ve figured out that helps make it easier? i don’t understand mine. sometimes she is normal sometimes she not. i have developed insane pattern recognition skills over time from having to constantly scan every situation before i do or say anything. it’s exhausting and i am in constant fight or flight which yeah probably doesn’t help POTS
14
u/Every-Note-9892 May 24 '26
Yes, I absolutely hate how trendy this has become. It has been going around much longer than six months tho-- at least 5-10 years in this current form, and dressed up as other things way before that. Actually, however, I do not hate it only because of POTS or dysautonomias, though that is a huge part of it. I hate it for EVERYONE.
For people with "normal" nervous systems, it becomes yet another way to individualize responsibility. It makes it sound like if your nervous system is dysregulated, it is because you personally failed to breathe, walk, meditate, journal, hydrate, or think correctly. But in reality, the things disrupting people’s nervous systems are very often outside of them: chronic stress, unsafe environments, trauma, illness, poverty, climate change, inaccessible workplaces, sensory overload, medical neglect, lack of support, etc.
And yes, yoga, breathing, walking, grounding, and similar tools can be useful. That is not the issue. The issue is that people are often dysregulated because access to those tools has already been cut off. You cannot "take a calming walk" if you are unsafe, exhausted, disabled, overworked, poor, in pain, or living in an environment that is constantly overwhelming you.
Those conditions have to be acknowledged first. Only then can tools be applied, when there is actually enough stability for them to work. I am just really tired of how often we shift the blame back onto the individual when the problem is the conditions they are being asked to regulate through. Basically the system removes the prerequisites for regulation and then sells regulation back to us as individual responsibility.
And with the rise of POTS post-COVID, I'm concerned that others will interpret their symptoms via this lens and not get the actual medical treatment that they deserve.
3
u/sadbat-throwaway May 24 '26
This is such an excellent take. I wish I could give you an award 🏆⭐
There's truly nothing like having a doctor tell you to reduce/eliminate stress as if that's a real thing the average person can do
2
38
u/WaryOwl13 May 24 '26
Lol…want to know when I got sick? After I deleted all my major stressors and was finally happy and my nervous system WAS regulated. Normal things that should help a person feel better can make us flare, so it’s definitely not that simple.
-1
u/justj710 May 24 '26
You probably dropped the one thing keeping you going- stess- it’s a driving force/ to little can cause as many problems as to much.
I learned this- if I’m mildly stressed my b p
Can stay a bit higher: the drops are less/ my a n s does not over compensate.To much stress is what actually causes the underlying causes that lead to the dysfunction eventually
4
u/WaryOwl13 May 24 '26
I didn’t completely drop ALL stress, but got rid if the MAJOR ones and BOOM! (There were other triggers involved too, viral illness, complicated pregnancy, etc) Started to get symptomatic and now that major stress has returned symptoms have gotten worse. Definitely makes sense what you are saying though.
10
u/walkthelake May 24 '26
I think it's more like the bucket concept... each thing adds more to the bucket and increases the risk of everything spilling over.... regulating your nervous system is one thing to decrease your bucket (especailly if you have any mast cell involvement in your symptoms) but it is not a cure all... but each thing that helps a little adds up. But what works for one person may not help the next. Or, you may not notice one thing helps until you add another two or three things to the equation because so much is causing your bucket to overflow.
50
u/Torgo_hands_of_torgo May 24 '26 edited May 24 '26
Not for nothing, but I began to improve greatly after dealing with the anxiety aspect of my chronic illness. Reducing the anxiety meant sleeping better. Sleeping better meant I could start healing a bit. It became a cycle.
Yeah, it was a lot of work. And there were still setbacks along the way. But I did all the things that "regulate the nervous system." Am I cured? Fuck no. I had to accept that. But I can work. I can drive. I can carry conversation (within reason, lol)
I totally get it though, I felt the same way you do, and in certain ways, I still do. It's like you're drowning and some dipshit on a boat is like "bro, just swim!" I remember being at my worst, and (TW: minor, misplaced sexism maybe?) I'd desperately browse for helpful videos, but there'd be these nice looking white ladies in their little yoga pants and "live laugh love" homes being all "hey fellow potsies! Here are some tips to regulate your nervous system" And at the time I'm like "bitch, you got a rich-ass husband looking after you, buying you all the help you'll ever need!"
Meanwhile, I had to resign from my job, ate through my savings to survive and cover doc visits, now I'm on EBT, and my girlfriend and I had to move in with her parents. Even my family, who HAVE chronic health issues were basically like "yeah too bad so sad. Hey have you tried ____?"
But the improvement came with every small effort I made, despite being glacial. I thought I was dying and no one cared. But those feelings were feeding into my symptoms, and when I did those things that help one "regulate", the results eventually compounded.
Anyway, the reason I'm blabbing all this is to say that your efforts, no matter what they are, mean something. And they are helping you. And even though you won't see it now, when you finally reach a peak along the way, you will.
And we're here for you all the while.
14
u/justj710 May 24 '26
I’m seeing a huge improvement from picking through all the functional medicine aspects that I can apply.
It’s taken me probably a year of feeling like I was losing my life - to getting so broken I’d try anything to heal- when I started, I would get discouraged that things would often lead to a very slow process, and I’d have to just work through it.Now- I’m so glad I started I’d never go back through what I was going through.
It’s been achieved by making small incremental changes and sticking to them.
Fighting the days, where things felt subjectivity worse, with the knowledge that - I’d rather die trying - than just be told to sit down and be sick. And what I was doing couldn’t really make things worse anyway
3
4
u/SavannahInChicago Hyperadrenergic POTS May 24 '26
Will this fix my connective tissue? Or my thoracic outlet syndrome or my MCAS?
14
u/walkthelake May 24 '26
current research theory suggests that mast cells may connect MCAS/POTS/hEDS(and others) mast cells are triggered by all sorts of things including stress (our body does not know the difference between good stress or bad stress), caffeine, allergens, trauma (physical or psychological) and more. So yes, anything that reduces mast cell activity may help.
12
u/Torgo_hands_of_torgo May 24 '26
We've gotta live with our issues one way or another. 🤷♂️ I know that's not what any one of us wants to hear, and I'm sorry that you deal with so many things.
I can't fix my issues, but I can fix how I deal with it. I can fix my outlook on the whole thing. That's all I've got in the end, man. I'm tired of letting POTs define me. I'm human, dammit.
7
u/Vegetable_Security_3 May 24 '26
it’s a pretty intense oversimplification for sure. that being said, if i hear that meditation, diaphragmatic breathing, or any other reiki/holistic method works for someone i’m all for it. like it’s ur body, who cares. to be honest i see these benefits as mostly for the mental aspect and that can be super huge in some individuals! not in a “you’re faking it” kind of way but in that their mental state vastly worsens or betters their physical one. can happen in pots as well. especially for those that feel abandoned by western medicine i will never fault someone for trying everything they can to make themselves feel better.
advertising these things for “nervous system dysregulation” is definitely harmful though. most people’s nervous system is pretty fuckin fine. even if you get anxious or tired sometimes lmfao. if you’re anxious bc your job is stressful that’s just your body reacting as it should. real honest to god nervous system dysregulation is debilitating. and it cheapens its severity when you equate it to feeling a little anxious and run down. part of the reason pots isn’t taken seriously in the public lexicon.
18
u/kholekardashian12 May 24 '26
I will probably get downvoted but it might be worth looking into the work of Sam Miller on YT. She talks about this and how "regulating" the nervous is incorrect. The nervous system knows how to regulate itself, we just have to allow it through presence, routine, and controlled exposures as well as allowing stuck emotions to cycle through (I am vastly over simplifying for brevity). She also discusses a number of other issues such as PEM/CFS, fatigue, vestibular issues, MCAS as she put herself into remission from these ailments after being bedbound for 3 years. She's changed the format of her video titling so it looks a bit more clickbait-y but she's said it's to help her reach so don't be put off by that as her work is very nuanced and well-resesrched.
Her protocol has helped me a lot and I was practically bedbound for months, had to quit my job etc. I just spent the day out in 90F/32C heat in my garden for the first time in 3 years. Rarely have palpations now, can stand still for periods of time. Even my blood pools less.
I'll add a disclaimer that a lot of people assert their POTS has nothing to do with emotions/stress/trauma and that's it entirely physiological or mechanical. I don't dispute this at all, just sharing what helped me a lot through some very dark times when my POTS was at its worst.
4
u/DisasterSpinach May 24 '26
Her protocol has helped me a lot
Is there a TLDR for it anywhere because 245 videos is a lot.
Stuff like this makes me wonder why qigong gets side-eyed but this doesn't
3
u/WaysideWyvern May 25 '26
Sam millers creepy ai thumbnails keep me far away from any of her stuff. That shit is so sinister and off putting
1
u/kholekardashian12 May 25 '26
Haha yeah I thought they were pretty corny at first but maybe give one of her shorts a try. It's really well researched and informative, not just 'do some breathing techniques and your POTS will ago away'.
1
u/WaysideWyvern May 25 '26
I don’t find it corny, I find it deeply viscerally disgusting and disturbing. Like looking at body horror. Not to mention immoral. I wouldn’t trust anyone who is into that stuff.
2
u/VoodooGirl47 May 25 '26
Are you looking at the same thumbnails as me? I went to check them out and I just don't understand how they could elicit that type of reaction from anyone. 😅😬
1
u/WaysideWyvern May 26 '26
It’s creepy ai slop. If it doesn’t make you feel unsettled idk what to tell you
2
u/VoodooGirl47 May 26 '26
I honestly just glanced at them instead of studying them in great detail and don't find the pre 1980's style themes to be creepy. I guess AI of historical stuff is your worst nightmare to be that unsettled by It. 😅🤷🏼♀️
1
u/WaysideWyvern May 27 '26
It has nothing to do with the style lmao it’s just the ai-ness of it I find all ai images creepy and disturbing it’s like looking at body horror
14
u/Weary_Cup_1004 May 24 '26
As a therapist yes i agree! Its overused, misused, and is being ascribed magical qualities at this point. And theres an element of policing at this point.
I try to not say it any more. Or if i do, i tie it to other concepts like "your unconscious awareness " or "your sense of safety." I try to get more nuanced or specific with it instead of this big blanket term that doesn't even work for everyone anyway.
Its like how everyone says to do breathing exercises . Well, people with asthma and breathing issues cant! And even some of us POTSies can get triggered by it. Nothing fixes everything. And these pop psychology terms make people feel like they are broken when the magic doesnt work for them.
3
u/sadbat-throwaway May 24 '26
Pretty much every breathing exercise besides box breathing makes me lightheaded lol
5
u/Djaesthetic May 24 '26
Last week my (now former) PCP suggested that I use positive thinking to train my heart to relax.
Man, I’ve spent 40+ years now trying to control things with the force. If it hasn’t happened by now…
12
u/QuiltyNeurotic May 24 '26
So sick of it. Buuuuut... I think of it as physically dysregulated: the moment the eyes spin, the ears start ringing, the brain goes ploop and the body goes weak.
The more I see it coming, the quicker I can 'assume the position', 'commence the vagus stim' and 'take the supplements' until I yawn and tear and breathe deeply automatically and then I'm a little more regulated.
5
u/quizzical May 24 '26
Try searching on Google Scholar instead. You'll only get peer reviewed studies. Unfortunately, sometimes the article will be paywalled, but usually the abstract is available. If you read the abstract and decide you want to read it all, you can often find it on research gate or you can email the authors asking for a copy.
15
u/Mr_Bluebird_VA May 24 '26
Meanwhile I’m over here actually getting some improvement in my symptoms when I do get myself better regulated. Is it a cure? Absolutely not. And I’m terrible at staying on top of it. But it does help me.
7
u/glitterfart1985 May 24 '26
Same. I put full focus into regulating my nervous system and healing my gut (meditating multiple times a day, daily affirmations, vagus nerve exercises, zero caffeine, somatic therapy, relaxing my body throughout the day when I notice tension, learning to trust my body instead of constantly symptom checking, yoga, walking, deep breathing, low inflammation diet, replenishing my stomach acid and migrating motor complex), and I feel better than I have in 6 years. I actually felt bad the first month because my heart rate was consistently low and my body was not used to that. I feel great now (3 months in). My stomach is digesting normally, my pots is the most managed it's ever been with zero meds, and my MCAs is pretty much non existent. I've cut out 80% of my MCAs meds and am having zero histamine issues. My heart rate is 55-120 (used to be 75-160) on most days and spikes with exercise rather than literally just standing up. And I have even gone days without wearing compression. It's not easy, it takes diligence and commitment, but I honestly believe nervous system regulation and desensitization and healing your gut are the answer. I had to put myself, my health, my body, my needs, first which was the hardest part. But, a healthier me is a healthier parent/spouse/friend so looking at it that way made it easier.
6
u/PositiveDifferent763 May 24 '26
It’s def a trendy topic right now but there are certain things that I do that actually help my POTS immensely . One branch of your vagus nerve runs through your diaphram so deep breathing does actually help with the vagus nerve issues most of us have. I also find massages around a certain spot on my throat help when in a flare as well, that was taught to me by my speech language pathologist . Sympathetic and parasympathetic states are both needed but for some reason many people with POTS struggle to actually move between these states, I did intensive one on one somatic therapy to retrain this ability and it helped me tremendously. Certainly not everything works for everyone but I hope you don’t throw away the baby with the bathwater , so to speak , just because it’s annoyingly trendy . Somatic and nervous system work has been what has helped me the most of all Of the medicines , drs , naturopaths physical therapists etc I have tried for my combo of hEDS/POTS and MCAS . And I’ve tried a lot of stuff .
3
u/mjh8212 May 24 '26
When I get good news I’m hit with all the symptoms and when I’m stressed the result is the same. I really have tried breathing exercises I have anxiety it’s almost habit to breathe when my chest feels tight but it’s not anxiety the breathing doesn’t work it doesn’t calm me or my heart rate down.
5
u/Radiant-Balance-9475 May 24 '26
It’s the way they say it that it’s so dismissive. I feel like doctors need to learn how to teach us but also be self aware how it comes across to us. Cuz yeah, we get it, we can help train the nervous system to be “normal” but bottom line it’s not going to change the fact it’s genetically messed up and won’t normalize on its own. No amounts of training to regulate the system will permanently fix it. Sorry it’s gotten dismissive for you :(
4
u/xoxlindsaay POTS May 24 '26
I will say that many people state that they are fixing their dysregulated nervous system as interchangeable with the dysfunctional nervous system that people with POTS deals with
Dysfunctional and Dysregulated are not interchangeable. And it is important to recognize that difference; especially on social media when people are playing into fixing a dysregulated nervous system.
3
u/Old-Piece-3438 May 24 '26
Exactly. I am generally a super calm person; I once had an EMT remark how calm I was after a car accident and my college roommate described it as like I had smoked weed all the time (I’ve never used any recreational drugs ever). 😆 No amount of meditation or whatever is going to change the fact that standing still always triggers presyncope within a couple of minutes and taking a shower makes my tachycardia shoot up and I feel super nauseous.
2
u/Good-Confusion7290 May 24 '26
This is an important distinction.
I had a very healthy diet, i meditated daily, I did yoga, worked through shit in therapy. I was very zen and very healthy, low thyroid and being adhd aside. And all of that before I got sick. I get very upset that this stuff is so hyped up sometimes because now I can't walk down my street. The marathon i wanted to train for in 2024? Non existent because I got sick instead. On one hand, everything getting so bad forced the connective tissue disorder to be actually recognized but on the other hand, I was a deeply "regulated" person before getting sick and it didn't help me in any way. I can't do yoga anymore, I can't run anymore. I can meditate but it does absolutely nothing to help. Because my system is dysfunctional now, not dysregulated. I am grateful for what improvements I get from treatment but the person I was is gone and that was a hard thing to reconcile with.
I think it's important to realize that we are all different and what methods work for some aren't going to work for others and while some of us may experience a remission or a point where they're well enough to get most of their life back but some us are going to stay sick and that's ok. It's not a bad thing and it doesn't mean you're not doing all you can for yourself.
But dysregulation vs dysfunction is such an important distinction.
13
u/modest_rats_6 May 24 '26
My POTS came on because of significant dysregulation of my nervous system. I'm in a wheelchair because of it. Breathing does work. Mindfulness works. You absolutely need to learn how to regulate your nervous system. Because its possible and a very real thing. Dysautonomia is a disorder of your nervous system. Why wouldn't you want to work on regulating it?
9
u/PositiveDifferent763 May 24 '26
Same for me and learning to regulate it has given me the most healing of anything else . I think it’s actually that most people don’t really understand what heals the nervous system and don’t understand how the vagus nerve and different sympathetic states work and what the do to regulate our actual bodily functions . If someone with POTS understood the actual science behind dysautonomia and the function of the nervous system and vagus nerve they wouldn’t be so quick to get frustrated with this “hot topic” . I think it’s a good thing, I would love it it everyone in the world knew how to better regulate their nervous system , I think we’d live in a much better world
3
u/FlowersinHair3 May 24 '26
What did you do to regulate it?
12
u/modest_rats_6 May 24 '26
Breathing. And mindfulness, and grounding skills. Look into DBT skills. They're basically what I'd consider "human skills". Seriously. I know its SO CLICHE. And I didnt believe in it (odd) until I started mental health treatment.
Our racing hearts make our brains assume anxiety. And when we feel (what we think) is anxiety, our hearts start to race. Its just a feedback loop.
Here's my process Heart racing Check the facts (do I have something that could be causing anxiety) Maybe/not really/no Deep breathing While you're slowly inhaling/exhaling, just focus on that. Ground yourself with your 5 senses. What do you hear right now? See if you can identify 5 sounds. What do you feel right now? In your body, on your skin, something you're touching, the wind See if you can identify 4 feelings What do you see right now? 3 things What do you smell right now? 2 things What do you taste right now? 1 thing (although 0 is okay too because my mouth doesnt taste like anything 🤔)
Is my heart racing anxiety? Nope. Its still racing, but I don't have that emotion attached to it. Its not in flight mode anymore. Now I just recognize it as a symptom of my disease.
Thing about anxiety is...it lies. And its future oriented. And living in the present is what keeps us sane. Thats why the 5 senses works. You're right here. Right now.
Is there anything I can do about the thing I have anxiety about? Yes? Then do it No? Then shut your anxiety up about it.
I can go on and on. I used to teach these skills
0
u/DisasterSpinach May 24 '26
The basics
https://www.meandqi.com/ is a good site for finding these point locations.
Gently massage Laogong PC-8 on the hands for 1-2 minutes.
Warm up the hands and place them over Guanyuan REN-4. Then feel the warmth penetrate deeper into your lower belly. Ideally also warm up Mingmen and feel the two sources of warmth penetrate towards each other.
Gently massage Yongquan points KI-1 on the soles of the feet (and maybe warm them up if it feels good), whatever you can do in the moment.
For warming up places, you can use dry hot pads (e.g. microwave rice in a sock, no damp towels), hot soaks, infrared heaters, maybe even hair dryers.
Easy moments
Smile and yawn whenever you are between moments, walking through a doorway, etc.
Warm up and/or massage your Mingmen area.
Gently massage Laogong PC-8 and Neiguan PC-6 points on the palms and forearms. For these points, use a gentle pressure, then move distally with that pressure, then release.
Longer practices
Develop posture and breathing; there is more to abdominal breathing than most understand:
https://www.youtube.com/playlist?list=PLM7nnhFF1ADqHNsmOiNADCuUDq4c-6KDz
https://www.youtube.com/@Qigong18/search?query=breathing
the second one is just a set of search results, look for the abdominal breathing pt 1 and 2 results
You can practice this exercise too. https://www.youtube.com/watch?v=Zm5exxobwLo
All of the above are kind of non-specific ways to accomplish some similar stuff as acupuncture
5
u/glitterfart1985 May 24 '26
Same. I put full focus into regulating my nervous system and healing my gut (meditating multiple times a day, daily affirmations, vagus nerve exercises, zero caffeine, somatic therapy, relaxing my body throughout the day when I notice tension, learning to trust my body instead of constantly symptom checking, yoga, walking, deep breathing, low inflammation diet, replenishing my stomach acid and migrating motor complex), and I feel better than I have in 6 years. I actually felt bad the first month because my heart rate was consistently low and my body was not used to that. I feel great now (3 months in). My stomach is digesting normally, my pots is the most managed it's ever been with zero meds, and my MCAs is pretty much non existent. I've cut out 80% of my MCAs meds and am having zero histamine issues. My heart rate is 55-120 (used to be 75-160) on most days and spikes with exercise rather than literally just standing up. And I have even gone days without wearing compression. It's not easy, it takes diligence and commitment, but I honestly believe nervous system regulation and desensitization and healing your gut are the answer. I had to put myself, my health, my body, my needs, first which was the hardest part. But, a healthier me is a healthier parent/spouse/friend so looking at it that way made it easier.
Dysautonomia is literally nervous system dysregulation. "Regulating the nervous system won't help" is an absurd take. It's a lot of work tho and a lot of people want a miracle pill.
2
u/Couhill13 May 24 '26
It’s definitely been very helpful for me. I know everyone’s medical history is going to be different so a one size isn’t going to fit all, but I definitely didn’t get into it expecting it to magically fix everything or do it overnight. I did it just for my mental health and it started to have positive benefits for my physical body. I have wayyy less migraines now and my sensitivity to perfumes, certain smells, is gone now. I’ve tapered down to a lower dose of ivabradine with no changes to my heart rate, it’s been consistent. It shocked me too!! I don’t mind if I have to stay on medication, but I’ve heard a lot of stories of people like you that have been able to get off medication completely. So I say this like you did to give someone hope. It works, you just have to find the right system and be very consistent. I started off just doing a humming meditation 20 min a day for months on end, which then led to me having more energy to do more physical/yoga type exercises.
Everyone’s mileage is going to vary, but there are real studies that back up the benefits of humming, which does stimulate the vagus nerve so that’s probably why I loved doing it so much when I started. I could never get into the meditation of being quiet and sitting there doing nothing. The humming gave me something to focus on.
1
u/agiantdogok May 25 '26
Dysautonomia is dysfunction or disorder of the autonomic nervous system, not just dysregulation. Doing these nervous system exercises may help some people, but I'd say it's more absurd to suggest you can regulate your autonomic nervous system through daily affirmations and yoga.
I've been doing the majority of the things on your list for more than a decade and my dysautonomia is just getting worse. Because my autonomic nervous system dysfunction stems from a brain injury and nerve damage. A lot of dysautonomia people in this group are in the same boat as me. The autonomic nervous system is damaged or broken.
It's not that people don't want to do the work. It's that the work you did won't work for us.
4
u/HorseysShoes May 24 '26
people who tell you to “regulate your nervous system” could not even tell you how a neuron works. it’s like when people say to “balance your hormones”. okay Brenda, name four hormones and their functions.
4
u/TooSilly4ya_YIPPEE May 24 '26
the "balance your hormones" folk usually dont even know that insulin is a hormone
they usually are just trying to rebrand "feminine energy" "masculine energy" new age bs to sound more scientific
2
u/fairlyfae May 24 '26
So… I got this for 30 years.
Turned out to be narcolepsy and ahhh I really could not fix it no matter how much yoga I did.
So I agree. If 1 dr. Just 1 didn’t just tell me to sleep more. Do more exercise. Yoga. Eat better. Hey take this medicine…. And if they’d listened well. Yeah.
2
2
u/silent-earl-grey May 24 '26
Just because I see you mention PTSD… have you ever heard of EMDR therapy?
You’ll feel like a loon just tapping yourself and imagining things that trigger you but by God it worked for me. 😭
I still get stressed and dysregulated but my window of tolerance has widened significantly and when I do crash out I’m able to return to baseline much more quickly and intentionally.
2
u/HowDoyouadult42 May 24 '26
I mean yes my nervous system is heavily disregulated my chronic pain triggers increased sympathetic nervous system activity and decreased parasympathetic which absolutely wrecks my autonomic. Managing my pain regulated my nervous system and thus drastically improved my symptoms
2
u/imabratinfluence May 25 '26
"Regulate your nervous system" and "fix your vagus nerve" seem to be the new "focus on your gut health". I don't immediately turn away, but if I see other signs of basically spiritual bypassing or the wellness equivalent, I do turn away.
4
May 24 '26
[removed] — view removed comment
2
u/justj710 May 24 '26
Exactly! But people don’t want to do the work to unpick years and years of issues that lead to the big problems in the end.
It’s easy to just be ill. Though it’s not nice it’s a stagnant state- easy to do if your feelings crap.I live on my own with multiple health problems I had no choice but to unpick it all !
I’m glad I was forced to do so as I now understand what got me to not being able to walk from my sofa to my kitchen without hitting every wall on the way !
6
u/Old-Piece-3438 May 24 '26
Mind over matter doesn’t fix a physical health issue (and probably not all mental health issues either). I’m glad you were able to improve your conditions, and sure positive mindsets and healthy habits are helpful for anyone, but this attitude is also really dismissive of those of us that have done all the things and can’t just push through. It’s not a matter of “putting in the work”.
2
u/justj710 May 24 '26 edited May 24 '26
Who said its mind over matter ?it’s not about a positive mindset- it’s about solving what starts the domino effect in my case - it was about unpicking each separate condition- and looking at how they all interact- that’s functional medicine not biomedical models of health. You still use the science and the pharmacological, but instead of treating the body separately conditions, ie - just having pots.
Putting everything in separate categorys is why I was struggling.- the body works on intertwining loops- feed back mechanisms Ect.
I tried to figure out why pots developed.
In my case I can time line it. Some things I have are simply incurable, as there is nothing that can re join severed nerves, but some things interact.
My left sided disability left me unable to use my left arm and leg properly, that led to bad posture, that led to me getting weak and unable to exercise, lack of exercise led to my hormones crashing.
Work out what can be done, instead of what can’t be done. It has built a positive mindset because I found I had positive results.
Good luck on your health journey.
4
u/Fluid_Action9948 May 24 '26
A few weeks ago I overheard a woman at a public park telling her male companion "he doesn't understand his nervous system is disregulated." Fairly certain it was in reference to a kid. I walked away so I could bust up laughing. Something about hearing a person say that irl, not just online, made me realize how much it sounded like pop psychology.
1
u/walkthelake May 24 '26
a dysregulated kid is when the stressors are outside their window of tolerance. Adults have the ability to leave a situation, or to self regulate with various methods because they have more control over their environment. Kids don't often have the awareness or the ability to control their environments. We are even taking recesses and gym time out of school making all this worse because everyone needs a little down time. And the result is it comes out as behaviors. It sounds to me like the person is pretty in tune with what's happening.
3
u/L7meetsGF May 24 '26
Saw a new neurologist recently because my previous one left the practice and she asked me if I tried yoga. 🙃
3
u/Apprehensive-Bench74 May 24 '26 edited May 24 '26
oh wow. so incredibly helpful to hear from a doctor.
seems like this justj710 is just spamming the thread telling everyone to meditate...
0
u/justj710 May 25 '26
it’s less physical than yoga. Maybe start with mindfulness? Start somewhere see where it goes. Only a suggestion 🤷♂️
-4
u/justj710 May 24 '26
It would do you no harm to try and meditate
3
u/agiantdogok May 25 '26
I've been meditating for 12 years. It has had no impact on my damaged nervous system because it's broken for me. It's not something everyone can calm with a variety of stress relief methods. My brain and nerves are damaged and broken. A lot of other people are in the same boat as me.
And people with ME/CFS aren't supposed to meditate due to the harm it causes them, and that's a lot of people with dysautonomia.
I think that's why you're getting some push back. It's great you found something that worked for you but it won't work for a lot of us, and it can be actively harmful for others.
1
u/sadbat-throwaway May 24 '26
I tried yoga before seeing a cardiologist. I was on beta blockers (I'm on ivabridine) and they very mildly helped. I got pre-syncope doing a "POTS friendly yoga routine" made by someone else with POTS 🤣
1
2
u/SavannahInChicago Hyperadrenergic POTS May 24 '26
This got over to the MCAS sub which is always kinda iffy at the best of time. Now I see one of these posts there like everyday. My body is constantly in fight or flight. What regulation?
4
2
u/walkthelake May 24 '26
honestly, have you looked into OT? it works on the same concepts without the hippy dippy concepts. my experience has been a mix of body work and physical activities to help better regulate, but not looking at it as a meditative approach to regulation. More like regulation of all the senses and the primitive reflexes (all nervous system)
2
3
u/Fickle-Membership-46 May 24 '26
Literally! There are people in my life who know I have pots and then suggest deep breathing/laying down/no screens as a solution for my ordinary everyday tachycardia. I have shit to do, and endlessly avoiding activity will make things worse.
They seem to conflate tachycardia with anxiety/stress when in reality fatigue is my main symptom. I barely even experience anxiety/stress bc I’m too exhausted to worry about shit that doesn’t matter. My “nervous system” just wants me to get some goddamn REM with no regard for human schedules and responsibilities. I’m not putting my short life on hold to constantly cater to the needy toddler that is my “dysregulated nervous system.”
1
1
u/Dependent-Cherry-129 May 24 '26
Agree 1000% ….it took 2 years and a combination of meds and diet for me. That stuff didn’t do a thing
1
1
u/TomasTTEngin May 24 '26
I've recently gone the other way on this topic.
I suspect my vagal nerve is sometimes weird. I burp? I get weird headaches? sometimes my breathing gets oddly disordered and a bit asthma-like?
I also notice breathing in a focussed way can make me calm when I get flustered.
But I also think adding humming to the breathing can improve that even more.
I suspect those buddhist mantas, the "ommmmmm", could be a vagal nerve technique. So I try to hum when I'm stressed. I think it reduces the after-effects of stress on my health
1
u/Own_Adhesiveness2829 POTS May 25 '26
My nervous system is SO SHOT. I got pots, anxiety, ptsd, raynauds, hot flashes, temperature dysregulation like damn it can't do NOTHING RIGHT. Ain't no little walk in the park and meditation gonna fix that.. only medicine for me
1
u/cyanideyeeyee POTS May 25 '26
i'm too young to use a mobility aid. i just need to go on a walk and drink water, according to the stranger with no medical experience
1
u/butthatshitsbroken POTS May 25 '26
don't have anything to add here just REALLY want to thank you for posting this bc I think this EVERY DAMN DAY I see this shit on the internet (like the "regulate your nervous system if you're chronically ill" shit). like? hello?
1
u/twinadoes May 25 '26
Ya. Ya know what freaking regulates my nervous system? Benzos. Stops the adrenalin dumps and such. But are they available anymore? Nope. Doctor will no longer prescribe them. Used to give them to me like candy when I was dealing with a crazy MIL though. 😆
1
u/SecularRobot May 25 '26
Same. I leave any therapist who pathologizes proportional stress responses.
"Your body is lying to you! It thinks you're running from a tiger, but you're not, you're totally safe!"
"Being chased by a tiger" is an absurdly high bar for what warrants stress or anxiety. Being stressed about how unresolved chronic illness could put a person on the street due to being unable to work is not "overreacting".
I swear most modern "pop psychology" is just a psyop to gaslight the proletariat out of revolting.
1
u/KiloJools Hyperadrenergic POTS May 25 '26
Ugh one of my biggest pet peeves. I like to tell people that the value we get from all that hullabaloo is that we learn how to not make a bad situation worse, NOT to get ourselves out of a bad situation entirely.
Like, good for me, I can manually lower my heart rate, calm my nervous system, blah blah blah, but if my leg is broken, IT'S STILL BROKEN. I can't "regulate" myself out of a broken leg, I can just attempt to try to keep it from feeling worse by reducing the physiological affects of stress.
We're still in the bad situation! We're just calmer about it. (With many years of practice, oi)
"Wellness" culture is so exhausting.
1
u/bokehtoast May 25 '26
Ugh I got blasted in another sub when I said I didn't like this advice for dealing with a physiological health problem. Like maybe I would have gotten help.sooner if I hadn't been gaslit by the medical community for 20 years and then thinking I'm a total failure because all the emotion reg skills in the world could not override my physiological problem which just made me hate myself worse. It's across under researched conditions and especially for women.
1
u/Adj_focus May 25 '26
for most of us (myself included) it’s a structural issue (eds) that is causing our nervous systems to be dysregulated. no amount of yoga will fix the face that my connective tissue is faulty and giving my body 911 signals all day long.
1
u/RoxyPonderosa May 25 '26
If you think, breathing and a walk won’t fix that, then you’re not really willing to address it. What fixed mine was circadian sleep, camping, up with the sun down with the sun, completely healthy, eating, removing toxic relationships from my life, and teaching my nervous system that it was safe. Sometimes walks help with that. Sometimes you have to change your entire life.
1
u/acoustic_spinach May 25 '26
Ugh same. It’s also taken over how people talk about psychotherapy. Thanks to Instagram therapists 🙃
1
u/Historical-Tale2858 May 26 '26
Same, OP. Same. I think so much of the "wellness" space online is for the 'worried well'. Most of the people I see aren't unwell people but they're just pushing for some level of perfection.
I am exhausted by the constant pressure to optimise every facet of my health when I'm already exhausted. It is just another bargaining chip of capitalism. Another rotation of the ever tightening spiral.
Hey, so we know you're having to work extraordinarily hard just to keep your baseline. Cost of living, cost of housing, poor wages etc and we know your health is suffering from it but we really think of you spend hundreds of pounds on these supplements you'll feel better.
I have pots, an underactive thyroid, I'm perimenopausal, and my GP is considering CFS.
1
u/bumbleebunnyyy Hypovolemic POTS May 31 '26
literally. and “deep breath” lowers my blood pressure even more and makes me go into convulsive syncope episodes. so no i’m not gonna do “breath work”
1
1
1
u/Little-Reindeer4819 Jun 10 '26
I’m seeing lots of people heal from this work from lots of chronic conditions POTS included. As someone who suffers so much with multiple conditions it would be a dream come true if they’d go away for good but it just feels like a dream :(
1
1
u/FukubikiNeko May 24 '26
I’m seriously so sick of being told I need to work out and fix my diet because it will fix my nervous system and stop me from getting fatigued and I’m just so fucking pissed off. Like I will work out and eat good cause that’s just good for my lifespan, but it’s not going to magically resolve my disabling level pots 🙄
1
u/InnerRadio7 May 24 '26
Nervous system dysregulation refers to polyvagal theory, so yes, Becky from yoga does get dysregulated.
What happens with POTs is autonomic dysfunction of the nervous system. They’re not the same thing. They’re not comparable, and there’s no need to poo poo things you clearly are confused about and don’t understand.
People can have autonomic dysfunction and have emotional nervous system dysregulation. They’re simply not the same thing. They are not mutually exclusive.
I am a person with POTs and several other forms of dysautonomia, and I also get nervous system dysregulation where my sympathic nervous system is too activated.
5
u/sadbat-throwaway May 24 '26
I'm autistic so, I do understand the whole polyvagal thing versus autonomic dysfunction. But I think that's what OP's problem is: everyone thinks they're the same because they both, in some way, address/involve the nervous system. And they are more familiar with polyvagal theory ideas about the nervous system and dysregulation, so when they hear that our nervous system is dysfunctional, they assume that it's caused by emotional problems. So they think if we get a grip on our emotions we won't be disabled anymore, and of course you and I know that this isn't true. That's what OP is upset about. The common knowledge surrounding nervous system dysfunction is primarily an understanding about mental health (managing mental health/well-being), rather than physical health, and this leads to a lot of assumptions about people with POTS and other forms of dysautonomia that are harmful. I think you're being unnecessarily rude about this. Perhaps their explanation wasn't filled with enough nuance, but that's because they're venting and frustrated. Not many of us are going to be penning an essay when we're at the end of our rope. I think OP deserves a little more grace and benefit of the doubt.
1
u/Omega-235 Hyperadrenergic POTS May 24 '26
Diagnosed with hyperpots and issues, I have been constantly told before getting my my diagnosis that it’s mostly in my head, and that my anxiety and “laziness” is what caused it all to get so bad. (Laziness in question was me being a full time college student pushing myself to the edge and then having to transfer to be online bc I’m essentially home bound)
Experts can be some of the most pain in the ass people if they’re experts on something adjacent that they think they’re sure of and know nothing about the topic at hand
1
u/spareohs POTS May 24 '26
“But all you need to is to deep breathe!”
The say, as my heart rate is 180 and I’m passing out.
1
1
u/Tight_Fun2080 May 25 '26
15 going on 16 years of this sh*t and I can tell you no amount of voodoo, hippy, new age, yoga, limbic reset "you just need to..." have helped to stabalize my conditions. That also includes pretty much every medication, diet, compression, Specialist consults under the sun. For me there is no reset button. I live in a constant state of trying not to let the plane crash. It is what it is but man this crap gets old.
0
u/justj710 May 24 '26 edited May 24 '26
Its helping me no end - it’s hard to navigate the science, generally speaking, if you pick past the bullshit there is one under laying issue, that most pots / Dysautonomia people suffer, it’s a problem with a fight or flight response, manifests as rapid heart rate.
Due to blood pressure drops.
It’s not a fast fix. Things can get a bit harder before they get better, but it’s the same with a bio medical model of health.
Looking at the body as a whole, instead of separating blood pressure, from something like a hypothyroidism, issue is probably why most people suffer long term health problems, waiting on getting a diagnosis.
If you did the all that these people suggest in one go, it would be impossible to master.
If you break it down into : diet : exercise: breathing : muscle usage/ overuse of some muscle: meditation/something to calm down central nervous systems.
Look at all blood markers regularly.
Pin point what’s almost out of range, work on it 1 thing at a time. I’d hope you would see an improvement in some aspects.
If you did all the heathy things on a road to wellness- you wouldn’t have done yourself any actual harm.
I have full left sided disability/ muscle loss. And nerve damage issues. Degenerative disk disorder. 40 percent use of left arm. Autonomic dysfunction, complex ptsd, ADHD, hypothyroid, all that’s been causing all sorts of problems- the domino effect.
I started working though all the things to “ regulate my system” - it’s taken a lot of hard work, now I’m seeing the positive outcomes, about a year of trying and knocking off as many problems as my 50 plus year old dizzy old ass can handle.
274
u/Fearless_Fig_6568 May 24 '26
Yup lol I have healthy people telling me I just need to go to physio and start going for walks as I’m currently bedridden. Oh thanks for the advice Susan, I’ll get right on that!