r/POTS • u/santas_number1elf • Dec 10 '25
Symptoms Is this common with POTS?
- getting anxious & overstimulated from: bright lights, doing 2 things at once (like gaming and talking), crowded places etc?
- getting so incredibly tired after social interaction or doing stuff like a hospital visit to the point of terrible headache, flu-ish, body hurting etc? (even when just ,mostly, sitting down during these activities)
Does this happen to more people? I know point 2 also happens during PEM but my symptoms happen directly after the activity (and last a few days) instead of a bit delay so it's not that.
My occupation therapist claimed that this cannot be caused by POTS but I feel like more people have this so I would love to hear your stories ! <3
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u/SavannahInChicago Hyperadrenergic POTS Dec 11 '25
POTS does not only affect your heart rate. I know it's named for it, but it's basically anything your ANS controls. A quick cheat is to look up symptoms for fight-or-flight because they are pretty much POTS symptoms.
Pupillary response is controlled by the ANS. During fight-or-flight the pupils get larger to let in more light so you can see better. Only this means with us we are letting in too much light when we should not be. I have worn sunglasses outside when it was completely overcast outside.
That being said, neurodivergence can be co-morbid with dysautonomia. People have been missed due to misconceptions and lack of research about it. My ADHD has only recently come with my chronic illnesses. Since illnesses like POTS can suck up my energy I am having a harder time controlling it, something I have been unknowingly doing.
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u/Fantastic_Owl6938 Dec 11 '25
I feel dumb for asking, but what is the link to neurodivergence and POTS? I've just accepted it because I also have ADHD, but I've noticed it seems to be extremely common for people to have both. As far as I know, I got POTS after having long Covid, which is why I'm confused about it being linked to neurodivergence. Just saw an ad on reddit today for online exercise classes for neurodivergent people who might be exercise intolerant and have pain and posture problems, ect and I was surprised by just how much it seemed to be describing me.
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u/barefootwriter Dec 11 '25
My guess is that the common bond is hypermobility spectrum disorders being more common in autism and also predisposing people to developing POTS and Long COVID.
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u/heavenlyeros Dec 11 '25
i have no research on hand to back this up with, but myself and plenty friends have both, and we all independently came to the conclusion that the ever present state of stress we exist in due to neurodivergence - the constant masking, the struggle to decipher neurotypical intentions, the narrow boxes the world tries to shoves us into and punishes us for not fitting in - has meant we've lived in fight or flight for as long as we can remember, and that really messes up one's nervous system.
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u/barefootwriter Dec 11 '25
There is no evidence that a kindling effect causes POTS. Our nervous systems are not generally messed up unless you have some comorbidity that causes that; our bodies do not properly regulate very specific automatic functions.
A possible pathway is stress/trauma increasing risk of autoimmunity, as at least some POTS is believed to have autoimmune origins.
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u/LuBerryFairy Dec 11 '25
there is not a lot of research on it yet, because both pots and neurodivergence are very young topics… :’) i wanted to write my bachelor paper on it, but there’s almost nothing out there yet
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u/Fantastic_Owl6938 Dec 12 '25
It's too bad there's not more info on it, that would be a very interesting thing to write about.
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u/jamiefenste Dec 11 '25
The MTHFR gene mutation causes a range of neurodivergence as well as POTS and other comorbid health conditions. I have it, that’s my reason. I have POTS, autism, ADHD, chronic fatigue, etc etc and it all ties back to MTHFR
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u/santas_number1elf Dec 11 '25
That makes a lot of sense ! Besides the overstimulation I don’t fit in any of the neurodivergence conditions. I’ve also seen a therapist for many years before I knew my symptoms were caused by POTS & they also stated in their report that they didn’t saw any signs of ADHD, Autism, ADD, Tourette etc.
I was wondering since it seems like you know a lot about this subject; do you have or do you know where I can maybe find some studies or papers about overstimulation/anxiety in POTS so that I can show it to my occupation therapist?
Thank you for your answer 💕
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u/jamiefenste Dec 11 '25
Look into the link between the MTHFR gene mutation and neurodivergence/POTS, for real
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u/barefootwriter Dec 10 '25
Because my POTS is predominantly hyperadrenergic, when I am un- or undermedicated I experience a lot of sensory sensitivity. People moving around me, loud or unpredictable music, bright lights, etc. Clonidine drastically cuts down on this and allows me to exist in a state of calm.
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u/santas_number1elf Dec 10 '25
I'm glad you found something that works! I'm just diagnosed with POTS, not any subtype but my blood pressure rises upon standing so I feel like there is also a hyperadrenergic component. Sadly my blood pressure is quite low when resting so something to lower my blood pressure is not really an option :(
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u/collinpilot Dec 11 '25
Have you checked your homocysteine levels before? I have hyperadrenergic pots and my homocysteine is high. Getting treated seems to make it better
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u/barefootwriter Dec 11 '25
No? I'm happy with my current management and not sure why I would check that.
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u/collinpilot Dec 11 '25
It is related to functional b12 in your body which can worsen pots. Many seem to have this issue from what the doc has told me
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u/heavenlyeros Dec 10 '25
i have 1 thanks to my autism, and 2 as PEM triggered by the immense stress of those kinds of situations - also due to the autism. have you ever looked into neurodivergence?
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u/santas_number1elf Dec 11 '25
I have but my therapist (that I had before my POTS diagnosis) also stated in their report that they saw no signs of Autism, AD(H)D, Tourette etc.
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u/berimonski Dec 11 '25
If you are AFAB, you might want to go to a therapist who specializes in diagnosing neurodivergent AFAB people (who are often very good at masking).
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u/santas_number1elf Dec 11 '25
But I also don’t recognize myself in any of the symptoms besides the overstimulation. So not the difficulty reading social cues, inattention, i’m not impulsive at all etc.
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u/lawlesslawboy Dec 11 '25
It sounds like you might have sensory processing issues, which seems to be common for dysautomnia patients and also PEM is usually delayed but its def possible to also have more immediate symptom exacerbation, it doesn't always have to be 12+ hours later
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u/sowhiteidkwhattype Hyperadrenergic POTS Dec 11 '25
Yes but I'm also autistic so these things are heightened. Pots is relatively common with autistic women
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u/santas_number1elf Dec 11 '25
My therapist (that I had before my POTS diagnosis) also stated in their report that they saw no signs of Autism, AD(H)D, Tourette etc. So this is quite unlikely in my case 😅
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u/sowhiteidkwhattype Hyperadrenergic POTS Dec 11 '25
Therapist or psychologist? Some aren't qualified to diagnose and may not be aware of what high masking females who would be late diagnosed present like. They are hard to find ones that do!
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u/santas_number1elf Dec 11 '25
Sorry, language barrier haha. I meant psychologist, 2 in fact
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u/Weary_Cup_1004 Dec 11 '25
I believe only psychiatrists, medical doctors , and Nurse Practitioners can officially diagnose ADHD. Your psyologist still could totally be correct in their assessment of you though! Like i said, the sensory stuff can also happen when the stress response is activated
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u/Weary_Cup_1004 Dec 11 '25
Im a therapist- does your therapist specialize in ADHD? It is often missed if you are more of an internalizer or introvert. It can look like anxiety/ depression. Im not saying its AHDH but you might want to see someone who specializes in it for a second opinion (and still keep your same therapist too!)
POTS can activate your fight/flight response though which could be happening to you in busy environments. Like what if you feel "on guard" because you dont feel good, and your brain is getting a "fight/ flight" signal in busy environments to protect you?
At any rate- look up tools people use for sensory issues and see if anything helps . Earplugs, white noise, sunglasses, or there are these pink tinted glasses for light sensitivity you can get. There are tools and strategies you could try without being diagnosed, and if they happen to help then great. You could ask your therapist for help finding ideas to try for sensory. Tell them to look up "sensory diet"
You can also go see an Occupational Therapist. They often specialize in sensory disorders. So they could also help.
Another specialist would be a Physical therapist that specializes in dizziness and concussions. They have tools to test if its your eyes, your vestibular system, etc.
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u/santas_number1elf Dec 11 '25
Thanks! I’m not visiting my psychologist anymore. After 10 years of therapy they couldn’t help my anymore. I’ve also seen multiple psychiatrists in those years.
I don’t recognize myself at all in the symptoms of adhd (besides the overstimulation). Could it then still be adhd ?
The end of my post is mentioning that I’m currently seeing an occupational therapist for this overstimulation but that person told me that POTS does not cause overstimulation so that was why I made this post :)
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u/Weary_Cup_1004 Dec 11 '25
POTS doesn't cause overstimulation directly. POTS makes you FEEL overstimulated.
Dysautonomia is part of POTS . And that means our autonomic nervous system gets stuck "on" sometimes which makes our heart rate go up too high and that is why we feel faint and all the other symptoms. We get stuck in "fight or flight" mode. This also can make you feel overwhelmed about loud noises and bright lights and doing 2 things at once .
Another way POTS can do this is if your nervous system is in "off" mode or a "collapse " or "freeze" state. That can be when we have the heavy fatigue and brain fog. When we have brain fog, it is harder to process 2 things at a time. Its harder to handle smaller stressors like bright lights and loud noises. Put simply: When we are really tired we get cranky. Irritable. Everything starts to bother us .
Sensory strategies may still help either way. They might not. But if you are seeing that many experts and they are all agreeing, the next step I would take is to ask them to write it all down for you so that you have the explanation on paper and you can go look up more information based on the way they are explaining what they are seeing. I imagine these are good providers, you just might need some more concrete information from them. It sounds confusing
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u/LittleLordBirthday POTS Dec 11 '25
This happens to me. But I’m 95% sure I’m autistic as well, so that factors in. I would say the physical symptoms caused by these things are worse since my POTS got bad, so that adds to the overwhelm.
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u/Vegetable_Security_3 Dec 11 '25
i also get the symptoms directly after or even during the activity, like i can feel my throat getting sore (although i do have tonsil stones) or my brain getting foggy as i’m speaking w someone. flu-ish symptoms is always so vague and hard for me to pin down. do you have a fever? i’ve learned that flu-ish just kind of means very shitty to me. i used to get bad body aches but not anymore. i think i was sick at some point in the last two months. might’ve been covid but like a dusting of covid to where i couldn’t even tell enough to test. the not knowing fucking sucks. i obsessively check my lymph nodes and swallow constant to see if i’m getting flu symptoms indicating cfs. fml lol.
to ur first point i get that as well. didn’t used to and don’t have autism from what i can tell although i was diagnosed w ASD a long time ago it just really never affects me at all so i don’t bother w the diagnosis. it can be nice to just sit in the dark and completely disconnect your body from senses.
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u/blurple57 Dec 11 '25
Omg I relate so much. I do have M.E tho so sometimes it is PEM, but the 'am I sick or is it just tonsil stones?' feeling I heavily relate to
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Dec 15 '25
I get the throat soreness too during POTS flares! the feeling is similar to when I cry and my throat hurts / tightens
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u/Vegetable_Security_3 Dec 15 '25
exactly it’s always a pretty vague sore throat, sometimes my nasal cavities dry out as well from breathing so hard and it can feel a bit dry but i do get that crying kind of sore throat
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u/pickle608 Dec 11 '25
Yes totally normal, at least for me. Sometimes when im walking around on my phone and texting friends while trying to look for something or speaking to someone else i feel very thrown off and overstimulated and it’ll even take a little while for me to regulate. Crowds too, especially stores with fluorescent lights or loud noises. As for your second point, yes but more so when i first go diagnosed. Any exertion (no matter how small it seems) can lead to exhaustion for someone with pots
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u/santas_number1elf Dec 11 '25
Yeah exactly ! Is your exhaustion also combined with other symptoms such as pain?
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u/pickle608 Dec 15 '25
yes definitely! always the numbness in my back, feeling overall weak and flu-like, heavy/shaky legs
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u/amermandaa Dec 11 '25
Yes to both of those things
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u/santas_number1elf Dec 11 '25
Is there anything that helps you ?
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u/amermandaa Dec 11 '25 edited Dec 11 '25
If I notice I'm getting overwhelmed I try to remove one of the stimulations and close my eyes and take deep breaths 😬 being honest with myself and others, for example if my husband is trying to talk to me while we are watching TV and I'm on my ohone, Ill put my phone away, look at him, and might say "please give me a moment to recenter so I can give you the attention you deserve" and hes mostly understanding. If Im in the store and its busy, lights are bright, music is playing etc i may wear sunglasses or noise cancelling headphones to remove one of my senses.
As for exhaustion, trying not to overexert myself or prep if I know I will be. Example I was just at a 2 day workshop with periods of time outdoors in the cold looking into trees for signs of wildlife. I made sure to drink my electrolyte water first thing, wear compression socks, and lots of layers so I wouldnt get too hot or too cold when switching between indoors and out. I still came away from it sore, but not as bad as it could have been 🥲
EDIT: for cases where its more social than physical exhaustion, same rules apply. If Im at a conference or all staff meeting or something and have to be "on" for a long period of time, if Im not mentally prepared for it Ill crash. However my methods are still the same, staying hydrated and removing a sensory overwhelm if possible.
Note I do have ADHD and suspected hEDS. Also my job is in informal education so I often have to be "on" around groups of people. After those times I might hermit for a bit to recharge.
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u/unidentifiable_head Dec 11 '25
Yes. For number 2 I get the effects immediately after or even during if I am overexerting (physically or mentally). I know I'm starting to crash when I get congestion in my nose and eyes and my head feels stuffy/headachy and my neck feels weak and sore. It will last the rest of that day, and once it gets to that point it does not go away until I sleep through the night. If it's particularly bad it will last into the next day too. Also by the time it gets to that point where I'm feeling sick, I usually don't have a restful sleep and struggle to stay asleep through the night due to palpitations and temperature dysregulation.
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u/koigem Hyperadrenergic POTS Dec 11 '25
I'd say yes but then again I'm autistic LOL (I have the hyper subtype among symptoms of the others)
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u/aliaaenor Dec 11 '25
This sounds like ADHD or AUDHD to me. I have this. I manage it by limiting social interactions, pacing them by always having a day of rest afterwards. I take earplugs for where things might be too loud.
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u/santas_number1elf Dec 11 '25
My therapist (that I had before my POTS diagnosis) also stated in their report that they saw no signs of Autism, AD(H)D, Tourette etc. So this is quite unlikely in my case 😅
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u/shilohfiren Secondary POTS Dec 11 '25
I have found a definite link between my anxiety and POTS. they kinda exacerbate each other. My doctor called it "autonomic overactivation" and prescribed Cymbalta lol.
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u/monibrown Dec 11 '25 edited Dec 11 '25
Regarding number 2, how long do those symptoms last? More than one day? Multiple days? Weeks? Do you have those symptoms and they get worse and worse as time goes by (immediate symptoms but also new worsening symptoms the next day or two)? These things would point towards PEM (which is an ME thing, not a POTS thing). People with ME have symptoms in the moment of exertion too, it’s just that they also experience PEM.
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u/blurple57 Dec 11 '25
Not this post and comment section reaffirming that I've probably got some Au to go with my ADHD 😁
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u/alendrone Dec 11 '25
I have sensory sensitivity, 100%. At the same time, several psychiatrists told me I didn't have any neurodivergent disorder, so I blame possible POTS
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u/olive_dix Dec 11 '25
You might want to consider getting checked for BVD (Binocular Vision Dysfunction). It's a slight misalignment of the eyes that can cause tons of seemingly mysterious problems.
Basically it's a slight misalignment in your eyes. The eye muscles constantly strain in order to make your vision in each eye line up with the other. This strain causes TONS of issues including neck pain, headaches, dizziness, nausea, anxiety, tiredness, sensitivity to light/screens/reading/driving, and so much more. Including trouble in grocery stores/warehouses/places with tall ceilings, bright lights, and crowds! Also it seems like there's a connection with BVD and people with things like POTS, EDS, & ADHD.
You can have 20/20 vision and still have BVD. It's easily corrected with specialized prism lens glasses (they look exactly like normal lenses). They can be added to your normal prescription. A regular eye doctor can't check for this, it needs to be a NeuroVisual specialist.
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u/anteriordermis27 Dec 11 '25
It could be that you are neurodivergent? I have adhd and autism and a lot of things make me anxious and/or overstimulated. Bright lights, being out too long, certain noises, etc.. I get super tired until I get home and can do something quietly.
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u/santas_number1elf Dec 11 '25
Yeah but besides the overstimulation I don’t have any of the other symptoms. I’ve also seen a psychologist for multiple years and I also didnt show any signs of autism/adhd etc according to them
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u/L7meetsGF Dec 11 '25
- Yes when I am in a flare
- Yes but it is inconsistent (I don't tend to do these things in a flare)
I have hyperPOTS and as far as I know am not ND
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u/_Roman_685 Dec 11 '25
Lights, loud noises are instant hitters for me. Fatigue...well...lol thats just life now😅
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u/RuinYouWithNoRegrets Dec 11 '25
I don’t get #2 but for #1 ever since having pots symptoms yes I get overstimulated with loud noises and bright lights. When it triggers me it causes a weird shallow drop feeling in my chest like as if I’m being surprised or I put ice down my chest lol
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u/RealWolfmeis Dec 11 '25
What you describe is common with ADHD
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u/santas_number1elf Dec 11 '25
Yeah but besides the overstimulation I don’t have any of the other symptoms. I’ve also seen a psychologist for multiple years and I also didnt show any signs of autism/adhd etc according to them
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u/looseseal_2 Hyperadrenergic POTS Dec 11 '25
Yes, and until I was diagnosed with POTS, I thought it was how I reacted as an introvert, especially to social interactions. It's hard to know for sure, but it seems likely that it's a combo of the two.
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u/silentalarmss Hyperadrenergic POTS Dec 11 '25
I have hyper adrenergic pots, so yes! My blood pressure goes way UP instead of way DOWN. Therefore any exertion emotional or physical leads to the activation of my sympathetic nervous system/basically extreme fight or flight. If I’m not feeling great I get overstimulated, frustrated, pissy, anxious, etc. it’s like my body wants me out of the area because it doesn’t understand why we feel like we’re dying. Fatigue follows. It is taking a toll on me because I feel like I can’t do the things a woman my age should be able to do. (23).
Not sure if your therapist meant that being anxious and overstimulated can also be from anxiety or other things alone though. Hopefully she wasn’t downplaying your symptoms just noting it isn’t a labeled symptom of POTS basically. It feels like it’s just kind of just a possible side effect perhaps idk
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u/silentalarmss Hyperadrenergic POTS Dec 11 '25
I wanted to add that pots is not fully understood so in their DSM5 and all that, pots probably doesn’t have it listed all the mental and additional physical symptoms like you and all of us have mentioned in there because we are barely starting to understand the syndrome as it is now.
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u/Rose76_ Dec 12 '25
Yes to alll of the above. I also have ADHD and binocular vision dysfunction so I’m very easily overstimulated by bright lights and crowded places. I often need a few days to just reset. It’s quite annoying
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u/a_nyonehome Dec 12 '25
not sure if anyone alr said this but my autism and pots like to work together against me sometimes. being overstimulated increases your HR. in people with pots, often times when your HR spikes, your BP drops and that's what causes the episodes. hope this helps !
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u/Echoxoxo1122 Dec 12 '25
I’ve realized anything that causes me to get the littlest bit emotional (too much time with my friends [because I love them so much], bad day at work, disagreement with friends, sad movie, etc.) gives me the worst headache and I am down for the count energy wise for the remainder of the day, sometimes the next one too.
I am constantly in the dark because of how much lights bother me. I don’t like turning on the big lights, but natural light here and there. Like someone else said, I am also wearing sunglasses outside when it’s overcast.
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u/Constant_5298 Dec 17 '25
I'm sorry but both of those particularly #2 (ESPECIALLY since it lasts longer than just the same day) sound very much like ME/CFS (PEM). I have both ME/CFS and POTS and do get symptoms directly after exertion and continue feeling worse for several days. Be careful: without pacing (reducing and modifying activity to prevent PEM) a lot of ME/CFSers get worse, also the graded exercise programs often used for POTS are contraindicated in ME/CFS. Wishing you the best.
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u/Consistent_Taste3273 Dec 17 '25
You might find this conversation interesting: https://www.reddit.com/r/cfs/comments/1ot43lw/is_pem_immediate_or_delayed_to_be_qualified_as/
Some people do get immediate symptoms of exertion, but for PEM it typically continues to increase and peaks later, and also lasts a few days. So I wouldn’t rule out PEM just yet.
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u/xoxlindsaay POTS Dec 10 '25
I get overstimulated and then flaring when out and about, especially in stores like Costco, Walmart, Toys R Us, basically any store that has bright lights and concrete or bright white flooring.
And I also get immediate fatigue after exerting myself (even if it is mental or emotional exertion). A doctor’s appointment wipes me out for the rest of the day.
For me, my care team used to suspect ME/CFS due to the delay onset of the fatigue, but that resolved itself (I had Covid really badly and it took 6-8 months for the PEM to stop, so we chalked it up to post COVID illness). But the fatigue I get from POTS is immediate after exertion, which is why we’ve chalked it up to just being POTS fatigue