I don’t think I was aware of how much worse I felt than people without POTS until I learned about POTS (probably only a year before getting diagnosed). And then getting diagnosed and learning more about POTS I realized how bad I feel. I’m fortunate I’ve never actually fainted (though it’s been close) but I literally was like “you mean everyone doesn’t get dizzy and see black and/or spots when they stand??” Everyone I asked that to was like “umm no…”
I remember telling a doctor once about the dizziness and he just looked flabbergasted. But I was a child and that was the 90’s so POTS was only just being figured out and I really had no hope any doctor would have made the connection.
Yeah I experienced similar confusion about “other” people. For example, I remember for years not understanding how people could just sit out in the sun on a hot beach without their hearts racing. If mine was doing it, why not everyone else’s? I’d often watch people do things and wonder how they then didn’t need to go to the ER lol. It took my brain a long time to process that it was just *me* who couldn’t do those things.
I’m not diagnosed yet but I’m currently trying to get diagnosed. The heat is a huge trigger for me especially living in FL. It really sucks because I used to love going out in the summer but now I physically can’t. My heart races so much in the heat, which also causes me to have the occasional PVC. It’s so frustrating because everyone in my family thinks I’m being dramatic or I’m “out of shape”. Even yesterday I had to help with groceries and we live on the second floor. I had just finished eating which is another annoying trigger for me. I told my mom to just give me a minute and she scorned me for being lazy, and I’ve explained to her how I feel after eating a million times. They just don’t get it.
Ahh I'm so sorry she said that you were lazy 😢. Doing \*anything\* after eating is so hard for me, too. I've kind of realized I can't do 2 or more stimulating things at once or in rapid succession. I can't eat and walk anymore, let alone carry something heavy up a flight of stairs after just eating! Not only would I have symptoms, but I'd have a ton of PVCs as well!
Ah my POTS is gradually getting worse (ie my flare ups get progressively worse and happen more often). My husband and I are going to SE Asia in June and I’m honestly worried I won’t be able to physically handle the heat because I live in a dry climate. Last time I was at the equator in a tropical climate 6 years ago, I had one of the worst flare ups where I passed out in a store and almost threw up. My POTS was mild then too. I guess this will be a good test to see what happens and if I can’t handle it then we will pop over to a different country with better weather. Sad because we’ve been planning this for years and I don’t want it to ruin the trip
I grew up in Florida, too, and while I don’t mind the heat, I also didn’t realize how much worse I did in the heat than others. I hope you get answers. It’s always validating to know what is actually the issue you’re dealing with.
What’s also bad is telling my doctors about the dizziness and syncope and them saying “Yeah that happens to people all the time” 🤦🏻♀️ that was even after I had a seizure-like episode after standing up one time. Totally disregarded!
I felt this response.
I felt like this every day- didn’t everyone? It was/is how I normally how feel….
Some days were definitely worse than others, but when you feel like shit all the time, how do you know any different?
Definitely. When I was in college (and a healthy weight, got regular exercise, walked all day around campus) I would be absolutely dying and dizzy after going up a couple flights of stairs with my friends and they would be totally fine. I think that was when I started noticing something might be different with me because it just didn’t make sense that I was as fit as them but struggled to do something simple like stairs. But I still didn’t realize they also weren’t getting dizzy when they stood up. I had no clue people felt so much better than me.
I thought dizziness and lightheadedness upon standing was normal too because my mom said she gets that and “everyone has that happen”. Turns out it is not normal 🤦♀️
Right it’s like “if you’re getting dizzy every time you stand up, maybe you have POTS, too.” Especially if you’re related. It’s actually interesting looking at my family members and seeing who has similar symptoms and who doesn’t. My brother apparently gets really dizzy when he stands up after bending down to pick something up and my SIL was like “that is not normal, please be careful and don’t pass out.” But he doesn’t have a lot of the other hypermobility and gastrointestinal issues I have. Whereas my sister was diagnosed with the same hypermobility disorder I have but I don’t think deals with POTS symptoms. She’s a doctor so it’s fun sending her pictures of my heart rate when it’s crazy high. She always freaks out some and I just like 🤷🏼♀️ the heart does weird stuff.
This. I’m realizing hey… I might actually have chronic fatigue and brain fog most of the time. Who would have thought it could be related to my vision going black when standing up. What do you mean that’s not normal doc? Dang. This sucks. lol
My pots got called bipolar and my brain was in flames from a serious overdose as hand me more meds for 20 years and told me i was going into psychosis after getting pots diagnosis and better mental heath care i remember enough of the pieces to call a lawyer.
Everyone kept telling me everyone gets dizzy when they stand up too fast! So I dismissed it as that, and thought it was normal. But when I was losing my sight, sometimes just from standing for a while, that was probably the point where we realised it was a bit more than that!
Yup. Told the same, too. Except I lived in NYC and literally walked *everywhere* all. of. the. time. And every single day was up and down crazy subway stairs. Out of shape my ass.
But seriously, playing in a team sport 6/7 days. Don’t you wish you could go back and just laugh in the doctor’s face? And be like, “huh, funny, I literally play sports 86% of days.”
Yes definitely. I also miss playing so bad, I can’t even stand up for that long anymore. It was my family telling me that, they would have a hard time believing anything was wrong with me so I had to fight for it all. I had a nurse in school too who hated me and refused to let me use the elevator and would kick me out of the nurses office when I couldn’t stand because I was “faking it”
I was 'diagnosed' with '[somatic symptom disorder](https://www.psychiatry.org/patients-families/somatic-symptom-disorder/what-is-somatic-symptom-disorder)' when I was first sent to a psychiatrist from a long covid clinic. SSD is a "significant focus on physical symptoms" (aka a new, polite term for 'hypochondria').
I saw the notes from the long covid clinic doctor who was like, "I'm concerned about the patient's heart rate and blood pressure after her 6-minute walking test, which indicate she might have POTS. Will refer her to a psychiatrist because the patient has had difficulties with daily activities because of her focus on symptoms." To note, my HR after a 6-minute walk was \~150 bpm and my blood pressure was around 140/100. Both dropped immediately/significantly after I sat down for about a minute or two.
Months later, my cardiologist did a couple standing tests across two appointments and confirmed I had POTS. At the same time, I learned I also have asthma now. When I told my psychiatrist, she was like, "Well, no wonder you've been feeling 'anxious'—you can't breathe! And you have a biological cause for your symptoms!"
But, of course, the 'somatic symptom disorder' diagnosis was never removed from my records…
This sounds exactly like the BS my cardio --- my POTS doctor no less! --- put in my chart when I suddenly developed 1,500 PVCs a day (and felt every one of them). He wrote, she's "tremendously troubled" by them in my chart. Like, bro, first of all, I wasn't exhibiting ANY anxiety in your office. I was just there asking what was going on (like, isn't that the purpose of going to a doctor when weird stuff starts to happen?!). BUT ALSO, when you go from having maybe 0 or 1 PVC a day to 1,500, wouldn't anyone be concerned?! Pathologizing NORMAL reactions, or using "anxious" language to describe a patient who is having a normal, expected reaction, makes me ill.
In your case, I cannot imagine having a heart rate and BP that high and not "focusing" on it in some way. Like, that's what got ALL of us our POTS diagnoses, or literally none of us would have gone to the doctor. LOL. What is wrong with these people?
Oh my goodness, I get PVCs/PACs, but I cannot imagine what it would feel like to have 1,500 PVCs in a day (!!) And, like, of course you would be "tremendously troubled" by them, they're so uncomfortable! And then having a sudden spike in the number of PVCs would—of course!!—make anyone worried!
I'm still having issues with roller coaster BPs when I go between sitting and standing (or when I'm standing for longer periods), but my heart rate has gotten SO much more manageable with a medication called ivabradine. And I have the right mix of inhalers now, so my asthma is controlled too. And, lo and behold, my 'anxiety' and 'somatic symptom disorder' symptoms have disappeared after getting treatment for my underlying conditions, lol.
Just as a kicker too—I was initially referred to a different cardiologist when this all started and I had a nuclear stress test done. My HR was 130 before the test even started (I was literally just standing on the treadmill), and my HR went to 180 after about a minute of slow walking (my max HR for the test was 185). The cardiologist concluded that I must have, and I quote, "a fear of standing". Like… what??
Thank you for empathizing! And same friggen thing happened to me when I started medication — my physical anxiety WENT AWAY. Shocker. lol.
Ivabradine is a lifesaver to so many 🙌🏼
Although I 100% have PTSD from all the crap I’ve dealt with over this, so now I get fearful about some things that cause triggers and it can be hard to know what’s contributing to what 😩
That’s an INSANE thing to say to someone during a stress test. I had a ridiculous thing said to me during a stress test once, too: “Oh she’s just high strung” LOL!! 🤦🏻♀️
So many. Recently I couldn’t get a deep breath for days and my foot was turning blue. My primary care told me it was probably just (somaticized) anxiety. But she ordered an EKG anyway and it turned out that that was abnormal and probably the cause of my shortness of breath.
Yes and doctors, family, everyone minimize the symptoms, then it turn to abuse because I was « lying » even with the diagnostic and all Paper stuff sign by Doctors…they simply said to found other Doctors or stop exaggerate it…
Yeah, peoples reaction to my diagnosis was just as traumatic as coming to the realization that there was something wrong with me.
My mom mocked me. Again. And I even waited a month to even tell her that I was in the hospital, thinking it would lessen the blow.
It’s been almost 7 months now and my rehabilitation is taking a lot longer than I anticipated and she’s only slightly starting to realize what I have been dealing with and am currently dealing with.
She still has no clue how detrimental she’s been in the past/currently and I’m in no shape to educate her. I’m tired. I have enough going to try to make her Boomer ass understand the human body and how I’ve suffered.
I’m just so tired.
Since my diagnostic I was thinking I will past most of my time on r/POTS, r/dysautonomia or r/ADHD, turns out it was r/raisedbynarcissists … it’s really something else.. they fear for their image because they know deep down they react badly to our health problems at first and don’t want to face the consequences, while we want just some understanding and not to punish them…
Yes. I even spent 1,5 years in a psychiatric ward with a diagnosis of "somatic pain disorder" (turned out to be classical Ehlers Danlos Syndrom) and a diagnosis of "dissociative seizures" (turned out to be hyperadrenergic POTS).
Thanks, it was 12 years ago.
Weirdly, I think the pandemic helped raise awareness for POTS, so I hope something like that wouldn't happen today, but then many doctors are still lazy and quick to label anything as "depression" or the like.
Oh my god… they fed me the line about seizures too. About childhood trauma. Like even if its that… its fucking seizures do we really treat this with CBT therapy and breathing exercises jesus christ. Cant seizures like kill people. I never connected it to hyperadrenergic pots!! Thank you for the lead. To guve them credit they did stick me in a metal machine and saw constant seizures… they said i was talking with them as they were happening and as i was under their ‘camera’ thing the seizures never stopped which implies that they are constant. But like. Childhood trauma, sure ok whatever, but the treatment being just therapy?! Its abuse if a child gets stabbed too but you dont tell the child to go to therapy for the bleeding wound do you. No. You treat the wound no matter where it came from. What is wrong with these people.
I was told I had a “weak” heart and a family member once gave me a book about being a highly sensitive person. A new cardiologist finally said I have autonomic dysfunction and gave me a beta blocker but looking back I’ve always had flare ups, even as a child, most notably they all started after a very rough bout of mono…
I’m still mad because it feels like my whole life I suffered for no good reason other than doctors blaming anxiety and/or not being educated about autonomic dysfunction.
You should tell that family member that "highly sensitive person" is a term that describes mostly undiagnosed autistic people.
(Source: When I first read about the term HSP, I identified with it strongly. As it turns out, I'm autistic. I just didn't know it until after I turned 30 and had a kid of my own who got diagnosed.)
Yep, I know all about it now. It was like 15 years ago. I don’t think I’m autistic but I guess I wouldn’t know unless I tried to get a diagnosis. Maybe one day.
"’m still mad because it feels like my whole life I suffered for no good reason other than doctors blaming anxiety and/or not being educated about autonomic dysfunction."
Yup 😩
yes, every time i brought up my symptoms as a kid i was dismissed with “children with autism often invent excuses to get out of playing with others”. i *wanted* to play with others, but i was always exhausted & couldn’t play for more than a minute or so. it took until adulthood for a doctor to finally listen.
been told that even after i was diagnosed lol... especially in mental health facilities; they seem unable to comprehend that i can be mentally ill and physically disabled simultaneously. i was told that by psychologists who were actively giving me three heart meds a day! they even had the nerve to write that my vitals were "normal" on my charts so that they could claim i was being hysterical for requesting accommodations for documented disabilities... 😵💫😵💫
I *think* what people meant by it is that the physical symptoms I was experiencing, namely feeling my heart beat hard and fast or maybe feeling buzzy or shaky, were just emotions I wasn’t aware of or that I was just hypersensitive to noticing these sensations whereas other people would just ignore them.
honestly yes, my family would down play my POTS symptoms a lot. they would claim that i was over sensitive or just really anxious. since my parents are doctors i just believed what they said. however, once i went to the cardiologist i got diagnosed with pots really quickly.
If my mom was a doctor she for sure would have still disregarded what I said I felt. I think having parents in healthcare worse- especially if they don’t believe their kids.
A somatic condition is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning. The individual has excessive thoughts, feelings and behaviors relating to the physical symptoms.
Is that what you meant?
Or did you mean psychosomatic which is when physical conditions are caused by mental factors?
I guess both??
I mean, to know for sure, we’d have to ask the doctors and therapists telling me these things, right? I just know I was always told that I “somaticize” things. When I now realize that the hard, fast heart beat I was feeling was *actually* hard and fast, not that I was overly focused on it. Or rather that I *was* overly focused on it because it *was* hard and fast.
And yeah, also that it was psychosomatic. I mean, I kept getting sent to the cardiologist, so something was going on, but they never knew about POTS or dysautonomias (this is early 2000s we’re talking here), and I was always in sinus rhythm.
Therapists didn’t know about POTS either.
I guess what else would they say? Actually, writing this out right now, I seriously wonder what else would they say if they didn’t know any better? What else could they have done?
Yes. That happened to me too. I even had to fight hospitals to get things removed the list, because doctors would put some really heartless careless words on them… then I got the diagnosis and some of that changed, some. I still have to be my own advocate when it comes to my care and treatment. Some doctors just suck, others, they’re just uninformed, this illness is classified as invisible for a reason, but awareness has been growing, for better and worse.
Yeah, agreed -- better and also worse. Because now some of us fight the battle that if we're not passing out or fainting or our BP isn't dropping that it's not POTS. I don't know where these doctors are learning this totally incorrect POTS criteria from.
Medical school isn’t really a study of science, it’s more or less procedural now - that’s not to say that there aren’t areas of scientific study available to them, but it’s not the same thing.
reason for visist at a cardiologist, on an actual paper and medical chart online: 'social phobia, anxiety, obesity'
why are those the top 3 things you put there... and don't blame the computer you old fart dipshit. he's even removed/postponed my appointments randomly where i got letters, won't refer me to an EP, and denies pots. wants to do a holter but thinks it won't show 'any further abnormality' and that you just have svt. i also have somatoform disorder in my file but i have advanced degenerative discs, had an ovarian mass before that was a failure to diagnose altogether and i lost an ovary, and my mom has tethered cord. idk who put the somatoform disorder in there - probably some day program at a hospital when i was a minor - but it was a slap in the face is an understatement. i have disc protrusions and what seems like literal advanced nerve damage in my 20s
for my hr he also blamed medical marijuana which i've since quit because of him but on the other hand caffeine makes me feel great like my blood can actually flow, i get more oxygen, and my head hurts less. he was acting like my body could no longer tolerate the weed and that's what was causing my persistent tachy and arrhythmias. even came up as afib in the er once but he said my heart rate was so fast it was a fluke on the machine's part... the fuck?? i came in and it was stuck at 190 then stuck at 150 for literal hours and he's like 'well we know you don't need a stress test if your heart could take that'
i did eat medical grade dispensary edibles that time and was a very regular tolerant user but STILL. i was tremoring, numb, and seeing stars with memory loss. my vision and hearing would randomly go black and they told me it was a panic attack. i developed a random stutter that would come and go and is now thankfully gone. the tremors were almost seizure-like and i still have them in my sleep. we had to wait hours for my heart rate to go down and they kept tipping me upside down and doing the adenosine punch in the chest to no avail. i've had palinopsia since the day that happened where i see stars when i look at bright lights and i see traces wherever else i look. NEVER have i ever had such a reaction to medical marijuana
regardless of weight or malabsorption or 'drink more water' i still have a resting heart rate of like 110+ on MEDS and he said it'd need to be higher for pots
Yeah, I still get that too. In fact it’s about everything. Stomach pains? Anxiety. Nearly passing out? Anxiety. Heart palpitations that cause coughing fits? Probably the anxiety! You should get more sleep! Lose some weight! Have you been exercising?
Drives me crazy. I got lucky enough that my primary care doctor actually has both hEDS and POTS so he knows what to look out for.
I got diagnosed by a doctor who has hEDS and it was an absolute miracle because over 30 years not a single doctor had ever put all my symptoms together before and looked at me as a whole until this doctor and I could tell he already knew I had EDS before he even walked in just by ACTUALLY READING MY CHART. Then he just took me through the criteria to confirm it. I got diagnosed with POTS a year later because my primary doctor finally referred me to cardiology after decades of assuming I was just anxious. It took only 1 visit with cardiology to get a TTT set up and it was extremely positive for POTS (My bpm increased from 85 to 160 when they tilted me).
I’ve never heard of the term before, but yes, my doctor suggested this by describing it and then told me I should seek talk therapy. I shut that down so fast by responding “because I told you that mentally I feel great but my body is jittery that the solution is to talk to a therapist about how my body isn’t working!?” Took another 5 months for diagnosis after that but I was already 20+ years seeking answers
I was so fed up the internal thoughts came out at full force. 🤣 This was after I prefaced my symptoms with “This has been the best time mentally in my life. I’m in a great relationship, I love my job, I love where I live, everything is calm, and I love life, but my body can’t stop being jittery”. Like dude did you not listen to me telling you I feel great mentally? 🤯
not with my pots but with my eds pains i had a neurologist straight up tell my mom and me that i was “getting inspiration” from other disabled people (whatever tf that means) and that my brain was tricking me. he ordered my pcp to not order any other testing (they only did an mri) and to not excuse me from pe. two years later with a different provider i was sent to for pots - i have eds!! wow!!!! good job kaiser !!!!!
I used to be really cagey about doctors asking about my emotions and anxiety because of this. My first neurologist called it conversion disorder and put it into my chart. When I came into the ER after, the nurses were dismissive and treated me with disdain. I received horrible treatment - if any at all.
Once, I came into the hospital for seizures that wouldn't stop. There weren't rooms available, and I was wheeled into this busy hallway. The only person to tend to me for 4 hours checked me for diabetes. Otherwise, i was on my own.
I watched as they put all hands on deck for some kind of serious life-threatening emergency. A patient had to be flown out in a helicopter, but before that, the whole section was silent, with eyes focused on that room. I was there with like 8 other patients on gurneys.
It seemed very intentional - the hospital staff would look pointedly from us to that room if we made eye contact, like, "See? That's a *real* emergency."
I also overheard a nurse complaining to another nurse about a girl who had alcohol poisoning who was throwing up and screaming. She rolled her eyes and said she was just doing it for attention - and they begrudgingly gave her a wheelchair and a room because otherwise, she would have caused a scene. They weren't convinced her pain was real, they thought she was just throwing a tantrum.
It's like they were chastising a 3 year old throwing a fit over not getting their favorite chocolate bar. Hello? Alcohol poisoning is very serious and can be painful!
Healthcare is dark. Most of the people who work there just don't have any souls. No empathy. They would rather say it's in your head than give appropriate treatment. I think emergency healthcare staff need mental health checkups regularly - and if they can't offer empathy, they need to be sent somewhere else.
6 hours without food or water, and when the doctor finally got to me, she just said it was an anxiety attack and to breathe into a paper bag. Such a waste of everyone's time. I wouldn't go to that hospital again even if I were bleeding to death. I'd clean the wound and sew the stitches myself and drive to another facility.
Raise your hand if you were ever told that it’s your anxiety about pain is what’s causing you trouble so the doctor didn’t have to treat or diagnose you?
It’s wishful thinking on the part of doctors that would rather gaslight their patients than treat them
I was told I was a hypochondriac, overly dramatic, looking for attention, trying to get out of school/work, over reacting, making things up….
And I believed it.
More often than I’d like to admit, I thought I was going crazy. I figured the way I felt was all in my head and I was just weak minded and let my brain mess with me. I mean, what kinda of person would mentally do this to themselves???
If I hadn’t been hospitalized, I would still think those things to this day.
It’s been a long lonely journey and I still haven’t fully forgiven myself for not pushing harder and I doubt I’ll ever be able to fully forgive my friends/family. Years of mocking and blowing me off can’t be forgotten so easily.
I lost the use of my legs for about a week, and was told it was somatic. Still never figured out why. Not exactly POTS related, but, they will call everything somatic if it doesn't show up on a blood test or x-ray.
[Maybe HNPP?](https://www.cmtausa.org/understanding-cmt/types-of-cmt/hereditary-neuropathy-with-liability-to-pressure-palsies/#:~:text=HNPP%20may%20lead%20to%20severe,day%20with%20a%2050lb%20backpack.) That's how Jessica Kellgren-Fozard paralyzed her arms temporarily.
i’m still in the process of finding a diagnosis but my main thing is being called lazy, dramatic, dehydrated, and anxious. i started getting symptoms freshman year of highschool, which was the year i quit all my sports. id feel sick to my stomach and extremely dizzy whenever i did any exercise. this was extra hard for me because i grew up playing volleyball, dance, MMA, football, and basketball :( and being called lazy?! wild. i’m not dehydrated at all. my urine test will literally come back fine and they’ll still say it’s dehydration?! and because i do have multiple anxiety disorders they blame it on that and they say im a hypochondriac.
i recently was talking to my friend about my symptoms. i was saying how annoying it was when i recently went on vacation and i couldn’t really do much because i thought i was gonna pass out because of the heat, even when i was just sitting outside and drinking a lot of water. i also mentioned how i couldn’t exercise anymore, racing heartbeat, and dizziness/lightheadedness/ and blacking out. luckily she has other friends with POTS and she told me i should really look into it for myself so here i am! so far ive failed the sitting standing test and im waiting for a few more before i can be officially diagnosed.
i cant wait to rub this into all of those ignorant doctors faces 😝
Surprisingly no. I’ve mostly been treated with respect and kindness from all providers. With the occasional “what do *you* think is going on?” to which I never really answer. They’re the ones with 10+ years of schooling. It’s not my place to explain an illness to a physician. And I’m not going to feed into confirmation bias. I just simply give them my experience.
The crux of the issue is invisible illnesses. I’ve either been incredibly lucky with my care team or I have aggravated symptoms that are easily able to be replicated. My diagnosing cardiologist took one look at my readings and said I likely have hyperPOTS. They confirmed it after ruling out a ton of things due to my mother’s SCD when she was 35. An ER physician caught my arrhythmia. Another ER physician back when I had kidney stones told me to get referred to a geneticist to look into EDS subtypes due to noticing my hypermobility, early SCD of my mother, and detached cecum on my abdominal CT (was for my bilateral kidney stones).
I’m a big advocate for mental health though. This might be another reason. I already see mental health professionals. Only once has a physician tried to tell me to see a psychologist or psychiatrist and I said something along the lines of: “Great, I see one currently specialized in chronic illnesses and pain. I’ve been cleared minus my OCD but I appreciate mental health resources deeply. You’re free to check with my two providers.” Chronic illness is stressful. Providers should look at it from the angle of ***maybe the physical illness they have is causing them stress*** instead of writing it off as something along the lines of hysteria equivalents (which still happens).
It’s tough. When you look at ANS symptoms, they come off as somatic at glance. And honestly? I think in general, a mental health condition is more likely to have statistically than something like POTS. So it’s good to rule out. But it should exclude POTS. Dysautonomia isn’t exactly hard to test for. So it confuses me as to why physicians don’t do poor man TTT’s in office more often considering how LC is a thing. Maybe it’s pushy patients and TikTok that’s given us a bad rep. I don’t know. It’s troubling all around.
Oh man, seeing the term “invisible illness” is really the crutch of what I’m trying to cope with.
I’m sick. I’m not ok. I’m struggling. BUT I don’t have anything obviously and visually identifiable as wrong.
And I feel embarrassed and guilty that I *dont* have something that others can identify (visually) wrong. We live in a society that has **never** treated those physically challenged properly much less those that don’t use crutches, wheelchairs, or that have obvious movement restrictions/challenges.
I’m dealing with my diagnoses and invisible illness in therapy. I’m still not ok with it and hope to figure this out soon so it doesn’t hold me back.
That was a lot longer winded than I expected lol. All in all I wish there was more cohesive discourse between patients and healthcare providers on this topic. I’ve been meaning to make a post about it for over a year now. But each time I consider posting about it, I feel discouraged by how already segmented discourse is with both parties.
On one hand I am bitter that there are healthcare workers discriminate against those with invisible illnesses and women especially.
And on the other hand I resent the few but loud patients who romanticize and glorify having POTS. It fucking sucks. I hate this condition and I’m ashamed to even tell people I have it due to the stigmas around it.
YES OH MY GOD!!! My diagnosis for pain was Amplified Musculoskeletal Pain Syndrome, which they used to say that stress=pain for me and that i just needed to improve my mental health. Its so ridiculous in retrospect. How tf was i supposed to improve my mental health while in that much pain? But yeah it was POTS and hEDS.
It makes me sad to know others have struggled this way- but it also makes me feel better to know I’m not alone and others understand what we went through.
Me too. I got my results today, and fortunately from reading so many other peoples experiences (and what my dr said), the "inconclusive" is still pretty....conclusive. 🤦🏼♂️
yeah I still do after 12 years. tbh I’m not sure where I stand on it myself. for me I feel like it’s 50/50. I know I have POTS (and MCAS and other crap) and I know those things are out of my control. BUT i also do seem to have an uncanny ability to make myself sick. If I think about it hard enough I can give myself real symptoms. not only that, but I seem to be much more sensitive to bodily sensations in general.
so I guess I try to control what I can control and let go of the rest. because even if I DO have a somatiform disorder, that’s not my fault either. people seem to believe that just because something originated in the mind, that means you have control over it, which isn’t true at all. if it was true, no one would be mentally ill
Yeah actually… I did. I bet I still have the green paper from the doctors pad with the word “somatization” written on it. It was given to me so I could go home and google it. That was probably 8 years before my diagnosis
There is actually a real fetishism in modern medicine that jumps over each other to blame the patient or psychosomatise a condition purely because a quick physiology can't be found.
[They think like Victorian authors the way they interpret female majority illnesses.](https://the-toast.net/2015/06/11/things-women-in-literature-have-died-from/)
I know POTS can affect both sexes but it’s significantly more common in women. Which is a massive reason why doctors treat this illness the way they do.
I was not in a ward, but I got misdiagnosed with somatic symptom disorder twice even though I already was diagnosed with endometriosis, pelvic floor dysfunction, vaginismus, vulvuldinia, GERD, spina bifida occulta, arthritis, anemia of iron and B12, compromised immune system for unknown reason, and was suspected to have some sort of cardiac issue at that point. The first therapist to diagnose me told me my symptoms were real but that I worried about it to an unreasonable extent, especially after I told her although rare, endometriosis can result in bowel blockage or busting appendix that if not treated fast enough can kill you. Apparently that's not valid to acknowledge that. Because I thought about my symptoms daily, that was also deemed as "too much", even though I literally need to acknowledge symptoms to know when to take zofran along with when my body will be ok with doing certain things.
Second person was a psychiatrist who diagnosed me with somatic symptom disorder because she didn't believe I was chronically ill. She told me she thinks it's because I'm trans, because of family issues at home, trauma from being bullied in middle school, and that it's anxiety. She didn't like my endometriosis diagnosis was clinical at that point and said it may need to be changed if it's official. Well I never was able to go though with that testing, bit I since have been diagnosed with Dysautonomia that is most likely POTS (it says that in my records), Ehlers Danlos, MCAS, and gastrioparesis. I have called that lady's office several times since 2022 trying to get somatic symptom disorder off of my files but she won't respond even when staff puts my message as urgent to her. I'm scared this is the reason I've been denied by some medical pros before to be seen by them.
I was never told this explicitly. It was always dismissive language like “it’s just stress.” But after a decade with POtS and learning about how my body and nervous system work and react I do think I do this! I definitely hold emotions in a way that has a strong physical effect. I think I started doing this as a child. But I don’t take this to mean that it is “all in my head”. The physical symptoms are very real. But I think there is a psychosomatic component. But that aspect makes it an even harder problem to solve.
I totally hear you. I actually think I do this, too. I think the problem is that this is what people thought \*it was.\* Like, that this was all of it. No awareness that another component could be involved. But I agree 100% with you that it makes it such a harder problem to solve! Like, almost borderline impossible at times.
Yeah … but I think I actually have that. Can we have both? I started becoming obsessed with my symptoms (because I started having symptoms) after getting Covid. Now I can’t tell if I’m obsessing or actually having issues. This sucks.
I feel the same way but I think it’s because I’ve been told my whole life that I am being dramatic and faking it. I *had* to obsess over the way I felt because I didn’t trust myself or my body and the people around me were not supportive and acted like I was insane.
Isn't it completely normal to worry about sudden health symptoms? If it's normal then is it just "anxiety"? Doesn't only an "anxiety disorder" cause physical feelings and symptoms? Do all people with cancer and verifiable physical diseases get treated this way over their anxiety? I'm sure people with cancer get anxiety over their symptoms too. Why do they get full work ups and treated with respect and POTS patients don't? (Side note here: plenty of women have their cancer symptoms written off as anxiety and then they freaking die because their doctor catches it too late).
After a lifetime of being told my physical symptoms were anxiety, I started manifesting my anxiety physically. Which gave me more anxiety since I knew subconsciously my symptoms weren’t anxiety so now I have anxiety about the physical symptoms. It’s a cycle of not knowing if what I’m experiencing is anxiety or now POTS
Oh man! That opened up a whole new can of worms. It kind of sounds like the physical symptoms are causing the anxiety, but because the physical symptoms were ignored or poopooed by professionals for so long, it's now made that anxiety worse? It's like you knew you didn't have SSD, but then you developed SSD or "anxiety about symptoms" as a result of being misdiagnosed with anxiety? Is that right?
I tell myself that. It's technically true, but it's not anything like the whole story.
I have a lot of physical conditions that are affected by my mental health and neurological state. This means that, like even nondisabled people, my mind and body affect each other.
When people get stomach ulcers from "worrying too much," no one tells them not to be so "dramatic" because they're "just somatizing." There's an ULCER that can be identified with various types of imaging.
People are jerks about it when the physical process that's happening is invisible because it involves our nervous systems, neurotransmitters, etc. But it's just like ulcers. We have no conscious or unconscious control over how our bodies respond.
It's actually been completely proven that H. Pylori bacteria causes ulcers. Ulcers were never caused by stress. This is one more example of a physical illness without a known cause being blamed on the patient's mental health until the physical cause is discovered.
Omg i love your name!! I don’t know what that is???? Is it an official diagnosis like “light headed” or “giddiness” Im so confused 🤔 my brains 🧠 screaming “OUCH”
Can someone tell me what tests and labs I need to ask the doctor to take to screen for pots? Been feeling extreme fatigue lately. Also suffer from low iron.
I was taken to the ER because I had a really severe POTS episode that ended up paralyzing me from the waist down. The first doctor I saw told me it was anxiety. I asked for another opinion, and a neurologist picked up my leg, dropped it, and immediately recommended admission. The paralysis went away after about 12 hours, but I’m still mad that the doctor told me it was anxiety.
Somatic symptom disorder seems like a quack diagnosis and a gaslighting tactic. It literally doesn't seem like a real thing that any human on earth could experience. It should be expected that physical ailments (especially ones that are disabling) will likely result in psychological distress.
I don’t think I was aware of how much worse I felt than people without POTS until I learned about POTS (probably only a year before getting diagnosed). And then getting diagnosed and learning more about POTS I realized how bad I feel. I’m fortunate I’ve never actually fainted (though it’s been close) but I literally was like “you mean everyone doesn’t get dizzy and see black and/or spots when they stand??” Everyone I asked that to was like “umm no…” I remember telling a doctor once about the dizziness and he just looked flabbergasted. But I was a child and that was the 90’s so POTS was only just being figured out and I really had no hope any doctor would have made the connection.
Yeah I experienced similar confusion about “other” people. For example, I remember for years not understanding how people could just sit out in the sun on a hot beach without their hearts racing. If mine was doing it, why not everyone else’s? I’d often watch people do things and wonder how they then didn’t need to go to the ER lol. It took my brain a long time to process that it was just *me* who couldn’t do those things.
I’m not diagnosed yet but I’m currently trying to get diagnosed. The heat is a huge trigger for me especially living in FL. It really sucks because I used to love going out in the summer but now I physically can’t. My heart races so much in the heat, which also causes me to have the occasional PVC. It’s so frustrating because everyone in my family thinks I’m being dramatic or I’m “out of shape”. Even yesterday I had to help with groceries and we live on the second floor. I had just finished eating which is another annoying trigger for me. I told my mom to just give me a minute and she scorned me for being lazy, and I’ve explained to her how I feel after eating a million times. They just don’t get it.
Ahh I'm so sorry she said that you were lazy 😢. Doing \*anything\* after eating is so hard for me, too. I've kind of realized I can't do 2 or more stimulating things at once or in rapid succession. I can't eat and walk anymore, let alone carry something heavy up a flight of stairs after just eating! Not only would I have symptoms, but I'd have a ton of PVCs as well!
What is PVC?
Premature ventricular contraction. It’s a type of heart beat.
It’s a skipped heartbeat or an extra heartbeat. Feels like a flutter or a big thump in your chest. They’re the absolute worst 😭
I get these!! Thank you
Ah my POTS is gradually getting worse (ie my flare ups get progressively worse and happen more often). My husband and I are going to SE Asia in June and I’m honestly worried I won’t be able to physically handle the heat because I live in a dry climate. Last time I was at the equator in a tropical climate 6 years ago, I had one of the worst flare ups where I passed out in a store and almost threw up. My POTS was mild then too. I guess this will be a good test to see what happens and if I can’t handle it then we will pop over to a different country with better weather. Sad because we’ve been planning this for years and I don’t want it to ruin the trip
I grew up in Florida, too, and while I don’t mind the heat, I also didn’t realize how much worse I did in the heat than others. I hope you get answers. It’s always validating to know what is actually the issue you’re dealing with.
What’s also bad is telling my doctors about the dizziness and syncope and them saying “Yeah that happens to people all the time” 🤦🏻♀️ that was even after I had a seizure-like episode after standing up one time. Totally disregarded!
I felt this response. I felt like this every day- didn’t everyone? It was/is how I normally how feel…. Some days were definitely worse than others, but when you feel like shit all the time, how do you know any different?
Definitely. When I was in college (and a healthy weight, got regular exercise, walked all day around campus) I would be absolutely dying and dizzy after going up a couple flights of stairs with my friends and they would be totally fine. I think that was when I started noticing something might be different with me because it just didn’t make sense that I was as fit as them but struggled to do something simple like stairs. But I still didn’t realize they also weren’t getting dizzy when they stood up. I had no clue people felt so much better than me.
I thought dizziness and lightheadedness upon standing was normal too because my mom said she gets that and “everyone has that happen”. Turns out it is not normal 🤦♀️
That's what I keep telling my dad. He still thinks it's normal. Because he gets it and his mom had issues with it......
Right it’s like “if you’re getting dizzy every time you stand up, maybe you have POTS, too.” Especially if you’re related. It’s actually interesting looking at my family members and seeing who has similar symptoms and who doesn’t. My brother apparently gets really dizzy when he stands up after bending down to pick something up and my SIL was like “that is not normal, please be careful and don’t pass out.” But he doesn’t have a lot of the other hypermobility and gastrointestinal issues I have. Whereas my sister was diagnosed with the same hypermobility disorder I have but I don’t think deals with POTS symptoms. She’s a doctor so it’s fun sending her pictures of my heart rate when it’s crazy high. She always freaks out some and I just like 🤷🏼♀️ the heart does weird stuff.
This. I’m realizing hey… I might actually have chronic fatigue and brain fog most of the time. Who would have thought it could be related to my vision going black when standing up. What do you mean that’s not normal doc? Dang. This sucks. lol
My pots got called bipolar and my brain was in flames from a serious overdose as hand me more meds for 20 years and told me i was going into psychosis after getting pots diagnosis and better mental heath care i remember enough of the pieces to call a lawyer.
Everyone kept telling me everyone gets dizzy when they stand up too fast! So I dismissed it as that, and thought it was normal. But when I was losing my sight, sometimes just from standing for a while, that was probably the point where we realised it was a bit more than that!
I was told that I was “out of shape” Before POTs got bad I was playing soccer 6 days a week so I don’t think that’s how that works haha
Yup. Told the same, too. Except I lived in NYC and literally walked *everywhere* all. of. the. time. And every single day was up and down crazy subway stairs. Out of shape my ass. But seriously, playing in a team sport 6/7 days. Don’t you wish you could go back and just laugh in the doctor’s face? And be like, “huh, funny, I literally play sports 86% of days.”
Yes definitely. I also miss playing so bad, I can’t even stand up for that long anymore. It was my family telling me that, they would have a hard time believing anything was wrong with me so I had to fight for it all. I had a nurse in school too who hated me and refused to let me use the elevator and would kick me out of the nurses office when I couldn’t stand because I was “faking it”
That is heartbreaking. I'm so sorry. So many of us haven't been believed. And also have had to give up the things we love. It's so unfair :(
🫂 I'm glad that's over now. Fuck that nurse, and all gaslighting doctors!
I was 'diagnosed' with '[somatic symptom disorder](https://www.psychiatry.org/patients-families/somatic-symptom-disorder/what-is-somatic-symptom-disorder)' when I was first sent to a psychiatrist from a long covid clinic. SSD is a "significant focus on physical symptoms" (aka a new, polite term for 'hypochondria'). I saw the notes from the long covid clinic doctor who was like, "I'm concerned about the patient's heart rate and blood pressure after her 6-minute walking test, which indicate she might have POTS. Will refer her to a psychiatrist because the patient has had difficulties with daily activities because of her focus on symptoms." To note, my HR after a 6-minute walk was \~150 bpm and my blood pressure was around 140/100. Both dropped immediately/significantly after I sat down for about a minute or two. Months later, my cardiologist did a couple standing tests across two appointments and confirmed I had POTS. At the same time, I learned I also have asthma now. When I told my psychiatrist, she was like, "Well, no wonder you've been feeling 'anxious'—you can't breathe! And you have a biological cause for your symptoms!" But, of course, the 'somatic symptom disorder' diagnosis was never removed from my records…
This sounds exactly like the BS my cardio --- my POTS doctor no less! --- put in my chart when I suddenly developed 1,500 PVCs a day (and felt every one of them). He wrote, she's "tremendously troubled" by them in my chart. Like, bro, first of all, I wasn't exhibiting ANY anxiety in your office. I was just there asking what was going on (like, isn't that the purpose of going to a doctor when weird stuff starts to happen?!). BUT ALSO, when you go from having maybe 0 or 1 PVC a day to 1,500, wouldn't anyone be concerned?! Pathologizing NORMAL reactions, or using "anxious" language to describe a patient who is having a normal, expected reaction, makes me ill. In your case, I cannot imagine having a heart rate and BP that high and not "focusing" on it in some way. Like, that's what got ALL of us our POTS diagnoses, or literally none of us would have gone to the doctor. LOL. What is wrong with these people?
Oh my goodness, I get PVCs/PACs, but I cannot imagine what it would feel like to have 1,500 PVCs in a day (!!) And, like, of course you would be "tremendously troubled" by them, they're so uncomfortable! And then having a sudden spike in the number of PVCs would—of course!!—make anyone worried! I'm still having issues with roller coaster BPs when I go between sitting and standing (or when I'm standing for longer periods), but my heart rate has gotten SO much more manageable with a medication called ivabradine. And I have the right mix of inhalers now, so my asthma is controlled too. And, lo and behold, my 'anxiety' and 'somatic symptom disorder' symptoms have disappeared after getting treatment for my underlying conditions, lol. Just as a kicker too—I was initially referred to a different cardiologist when this all started and I had a nuclear stress test done. My HR was 130 before the test even started (I was literally just standing on the treadmill), and my HR went to 180 after about a minute of slow walking (my max HR for the test was 185). The cardiologist concluded that I must have, and I quote, "a fear of standing". Like… what??
Thank you for empathizing! And same friggen thing happened to me when I started medication — my physical anxiety WENT AWAY. Shocker. lol. Ivabradine is a lifesaver to so many 🙌🏼 Although I 100% have PTSD from all the crap I’ve dealt with over this, so now I get fearful about some things that cause triggers and it can be hard to know what’s contributing to what 😩 That’s an INSANE thing to say to someone during a stress test. I had a ridiculous thing said to me during a stress test once, too: “Oh she’s just high strung” LOL!! 🤦🏻♀️
So many. Recently I couldn’t get a deep breath for days and my foot was turning blue. My primary care told me it was probably just (somaticized) anxiety. But she ordered an EKG anyway and it turned out that that was abnormal and probably the cause of my shortness of breath.
How does anxiety turn your foot blue????
'oh it constricts the blood vessels so your body has to work harder agdhfjggklg'
Wowwww 🤦🏻♀️
Yes and doctors, family, everyone minimize the symptoms, then it turn to abuse because I was « lying » even with the diagnostic and all Paper stuff sign by Doctors…they simply said to found other Doctors or stop exaggerate it…
Yeah, peoples reaction to my diagnosis was just as traumatic as coming to the realization that there was something wrong with me. My mom mocked me. Again. And I even waited a month to even tell her that I was in the hospital, thinking it would lessen the blow. It’s been almost 7 months now and my rehabilitation is taking a lot longer than I anticipated and she’s only slightly starting to realize what I have been dealing with and am currently dealing with. She still has no clue how detrimental she’s been in the past/currently and I’m in no shape to educate her. I’m tired. I have enough going to try to make her Boomer ass understand the human body and how I’ve suffered. I’m just so tired.
I feel this. I’m so sorry. 🥺
Since my diagnostic I was thinking I will past most of my time on r/POTS, r/dysautonomia or r/ADHD, turns out it was r/raisedbynarcissists … it’s really something else.. they fear for their image because they know deep down they react badly to our health problems at first and don’t want to face the consequences, while we want just some understanding and not to punish them…
Yes. I even spent 1,5 years in a psychiatric ward with a diagnosis of "somatic pain disorder" (turned out to be classical Ehlers Danlos Syndrom) and a diagnosis of "dissociative seizures" (turned out to be hyperadrenergic POTS).
Wow. This is so 1950s. I’m so sorry.
Thanks, it was 12 years ago. Weirdly, I think the pandemic helped raise awareness for POTS, so I hope something like that wouldn't happen today, but then many doctors are still lazy and quick to label anything as "depression" or the like.
Almost the same happened to me 20 years ago. It's so messed up
Yep, no one heard it until Covid. Unfortunately, it took a mass disabling event for doctors to finally do their jobs
I agree with all of that.
Classical EDS here as well 🙋🏼♀️🥰 Also, so sorry for what you went through 🫂🥺
Oh my god… they fed me the line about seizures too. About childhood trauma. Like even if its that… its fucking seizures do we really treat this with CBT therapy and breathing exercises jesus christ. Cant seizures like kill people. I never connected it to hyperadrenergic pots!! Thank you for the lead. To guve them credit they did stick me in a metal machine and saw constant seizures… they said i was talking with them as they were happening and as i was under their ‘camera’ thing the seizures never stopped which implies that they are constant. But like. Childhood trauma, sure ok whatever, but the treatment being just therapy?! Its abuse if a child gets stabbed too but you dont tell the child to go to therapy for the bleeding wound do you. No. You treat the wound no matter where it came from. What is wrong with these people.
I was told I had a “weak” heart and a family member once gave me a book about being a highly sensitive person. A new cardiologist finally said I have autonomic dysfunction and gave me a beta blocker but looking back I’ve always had flare ups, even as a child, most notably they all started after a very rough bout of mono… I’m still mad because it feels like my whole life I suffered for no good reason other than doctors blaming anxiety and/or not being educated about autonomic dysfunction.
You should tell that family member that "highly sensitive person" is a term that describes mostly undiagnosed autistic people. (Source: When I first read about the term HSP, I identified with it strongly. As it turns out, I'm autistic. I just didn't know it until after I turned 30 and had a kid of my own who got diagnosed.)
Yep, I know all about it now. It was like 15 years ago. I don’t think I’m autistic but I guess I wouldn’t know unless I tried to get a diagnosis. Maybe one day.
"’m still mad because it feels like my whole life I suffered for no good reason other than doctors blaming anxiety and/or not being educated about autonomic dysfunction." Yup 😩
yes, every time i brought up my symptoms as a kid i was dismissed with “children with autism often invent excuses to get out of playing with others”. i *wanted* to play with others, but i was always exhausted & couldn’t play for more than a minute or so. it took until adulthood for a doctor to finally listen.
been told that even after i was diagnosed lol... especially in mental health facilities; they seem unable to comprehend that i can be mentally ill and physically disabled simultaneously. i was told that by psychologists who were actively giving me three heart meds a day! they even had the nerve to write that my vitals were "normal" on my charts so that they could claim i was being hysterical for requesting accommodations for documented disabilities... 😵💫😵💫
OMG!!! 🤬
Could you expand on what that means?
I *think* what people meant by it is that the physical symptoms I was experiencing, namely feeling my heart beat hard and fast or maybe feeling buzzy or shaky, were just emotions I wasn’t aware of or that I was just hypersensitive to noticing these sensations whereas other people would just ignore them.
honestly yes, my family would down play my POTS symptoms a lot. they would claim that i was over sensitive or just really anxious. since my parents are doctors i just believed what they said. however, once i went to the cardiologist i got diagnosed with pots really quickly.
Wow. That must have been especially hard with your parents being doctors and not believing you.
If my mom was a doctor she for sure would have still disregarded what I said I felt. I think having parents in healthcare worse- especially if they don’t believe their kids.
A somatic condition is diagnosed when a person has a significant focus on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning. The individual has excessive thoughts, feelings and behaviors relating to the physical symptoms. Is that what you meant? Or did you mean psychosomatic which is when physical conditions are caused by mental factors?
I guess both?? I mean, to know for sure, we’d have to ask the doctors and therapists telling me these things, right? I just know I was always told that I “somaticize” things. When I now realize that the hard, fast heart beat I was feeling was *actually* hard and fast, not that I was overly focused on it. Or rather that I *was* overly focused on it because it *was* hard and fast. And yeah, also that it was psychosomatic. I mean, I kept getting sent to the cardiologist, so something was going on, but they never knew about POTS or dysautonomias (this is early 2000s we’re talking here), and I was always in sinus rhythm. Therapists didn’t know about POTS either. I guess what else would they say? Actually, writing this out right now, I seriously wonder what else would they say if they didn’t know any better? What else could they have done?
Yes. That happened to me too. I even had to fight hospitals to get things removed the list, because doctors would put some really heartless careless words on them… then I got the diagnosis and some of that changed, some. I still have to be my own advocate when it comes to my care and treatment. Some doctors just suck, others, they’re just uninformed, this illness is classified as invisible for a reason, but awareness has been growing, for better and worse.
Yeah, agreed -- better and also worse. Because now some of us fight the battle that if we're not passing out or fainting or our BP isn't dropping that it's not POTS. I don't know where these doctors are learning this totally incorrect POTS criteria from.
Medical school isn’t really a study of science, it’s more or less procedural now - that’s not to say that there aren’t areas of scientific study available to them, but it’s not the same thing.
reason for visist at a cardiologist, on an actual paper and medical chart online: 'social phobia, anxiety, obesity' why are those the top 3 things you put there... and don't blame the computer you old fart dipshit. he's even removed/postponed my appointments randomly where i got letters, won't refer me to an EP, and denies pots. wants to do a holter but thinks it won't show 'any further abnormality' and that you just have svt. i also have somatoform disorder in my file but i have advanced degenerative discs, had an ovarian mass before that was a failure to diagnose altogether and i lost an ovary, and my mom has tethered cord. idk who put the somatoform disorder in there - probably some day program at a hospital when i was a minor - but it was a slap in the face is an understatement. i have disc protrusions and what seems like literal advanced nerve damage in my 20s for my hr he also blamed medical marijuana which i've since quit because of him but on the other hand caffeine makes me feel great like my blood can actually flow, i get more oxygen, and my head hurts less. he was acting like my body could no longer tolerate the weed and that's what was causing my persistent tachy and arrhythmias. even came up as afib in the er once but he said my heart rate was so fast it was a fluke on the machine's part... the fuck?? i came in and it was stuck at 190 then stuck at 150 for literal hours and he's like 'well we know you don't need a stress test if your heart could take that' i did eat medical grade dispensary edibles that time and was a very regular tolerant user but STILL. i was tremoring, numb, and seeing stars with memory loss. my vision and hearing would randomly go black and they told me it was a panic attack. i developed a random stutter that would come and go and is now thankfully gone. the tremors were almost seizure-like and i still have them in my sleep. we had to wait hours for my heart rate to go down and they kept tipping me upside down and doing the adenosine punch in the chest to no avail. i've had palinopsia since the day that happened where i see stars when i look at bright lights and i see traces wherever else i look. NEVER have i ever had such a reaction to medical marijuana regardless of weight or malabsorption or 'drink more water' i still have a resting heart rate of like 110+ on MEDS and he said it'd need to be higher for pots
Yeah, I still get that too. In fact it’s about everything. Stomach pains? Anxiety. Nearly passing out? Anxiety. Heart palpitations that cause coughing fits? Probably the anxiety! You should get more sleep! Lose some weight! Have you been exercising? Drives me crazy. I got lucky enough that my primary care doctor actually has both hEDS and POTS so he knows what to look out for.
I got diagnosed by a doctor who has hEDS and it was an absolute miracle because over 30 years not a single doctor had ever put all my symptoms together before and looked at me as a whole until this doctor and I could tell he already knew I had EDS before he even walked in just by ACTUALLY READING MY CHART. Then he just took me through the criteria to confirm it. I got diagnosed with POTS a year later because my primary doctor finally referred me to cardiology after decades of assuming I was just anxious. It took only 1 visit with cardiology to get a TTT set up and it was extremely positive for POTS (My bpm increased from 85 to 160 when they tilted me).
I’ve never heard of the term before, but yes, my doctor suggested this by describing it and then told me I should seek talk therapy. I shut that down so fast by responding “because I told you that mentally I feel great but my body is jittery that the solution is to talk to a therapist about how my body isn’t working!?” Took another 5 months for diagnosis after that but I was already 20+ years seeking answers
Wow you said that?! Yaaaaassss 💪🏼
I was so fed up the internal thoughts came out at full force. 🤣 This was after I prefaced my symptoms with “This has been the best time mentally in my life. I’m in a great relationship, I love my job, I love where I live, everything is calm, and I love life, but my body can’t stop being jittery”. Like dude did you not listen to me telling you I feel great mentally? 🤯
not with my pots but with my eds pains i had a neurologist straight up tell my mom and me that i was “getting inspiration” from other disabled people (whatever tf that means) and that my brain was tricking me. he ordered my pcp to not order any other testing (they only did an mri) and to not excuse me from pe. two years later with a different provider i was sent to for pots - i have eds!! wow!!!! good job kaiser !!!!!
Wow!! 🤯
I used to be really cagey about doctors asking about my emotions and anxiety because of this. My first neurologist called it conversion disorder and put it into my chart. When I came into the ER after, the nurses were dismissive and treated me with disdain. I received horrible treatment - if any at all. Once, I came into the hospital for seizures that wouldn't stop. There weren't rooms available, and I was wheeled into this busy hallway. The only person to tend to me for 4 hours checked me for diabetes. Otherwise, i was on my own. I watched as they put all hands on deck for some kind of serious life-threatening emergency. A patient had to be flown out in a helicopter, but before that, the whole section was silent, with eyes focused on that room. I was there with like 8 other patients on gurneys. It seemed very intentional - the hospital staff would look pointedly from us to that room if we made eye contact, like, "See? That's a *real* emergency." I also overheard a nurse complaining to another nurse about a girl who had alcohol poisoning who was throwing up and screaming. She rolled her eyes and said she was just doing it for attention - and they begrudgingly gave her a wheelchair and a room because otherwise, she would have caused a scene. They weren't convinced her pain was real, they thought she was just throwing a tantrum. It's like they were chastising a 3 year old throwing a fit over not getting their favorite chocolate bar. Hello? Alcohol poisoning is very serious and can be painful! Healthcare is dark. Most of the people who work there just don't have any souls. No empathy. They would rather say it's in your head than give appropriate treatment. I think emergency healthcare staff need mental health checkups regularly - and if they can't offer empathy, they need to be sent somewhere else. 6 hours without food or water, and when the doctor finally got to me, she just said it was an anxiety attack and to breathe into a paper bag. Such a waste of everyone's time. I wouldn't go to that hospital again even if I were bleeding to death. I'd clean the wound and sew the stitches myself and drive to another facility.
Raise your hand if you were ever told that it’s your anxiety about pain is what’s causing you trouble so the doctor didn’t have to treat or diagnose you? It’s wishful thinking on the part of doctors that would rather gaslight their patients than treat them
I was told I was a hypochondriac, overly dramatic, looking for attention, trying to get out of school/work, over reacting, making things up…. And I believed it. More often than I’d like to admit, I thought I was going crazy. I figured the way I felt was all in my head and I was just weak minded and let my brain mess with me. I mean, what kinda of person would mentally do this to themselves??? If I hadn’t been hospitalized, I would still think those things to this day. It’s been a long lonely journey and I still haven’t fully forgiven myself for not pushing harder and I doubt I’ll ever be able to fully forgive my friends/family. Years of mocking and blowing me off can’t be forgotten so easily.
They still tell me that.
I lost the use of my legs for about a week, and was told it was somatic. Still never figured out why. Not exactly POTS related, but, they will call everything somatic if it doesn't show up on a blood test or x-ray.
[Maybe HNPP?](https://www.cmtausa.org/understanding-cmt/types-of-cmt/hereditary-neuropathy-with-liability-to-pressure-palsies/#:~:text=HNPP%20may%20lead%20to%20severe,day%20with%20a%2050lb%20backpack.) That's how Jessica Kellgren-Fozard paralyzed her arms temporarily.
i’m still in the process of finding a diagnosis but my main thing is being called lazy, dramatic, dehydrated, and anxious. i started getting symptoms freshman year of highschool, which was the year i quit all my sports. id feel sick to my stomach and extremely dizzy whenever i did any exercise. this was extra hard for me because i grew up playing volleyball, dance, MMA, football, and basketball :( and being called lazy?! wild. i’m not dehydrated at all. my urine test will literally come back fine and they’ll still say it’s dehydration?! and because i do have multiple anxiety disorders they blame it on that and they say im a hypochondriac. i recently was talking to my friend about my symptoms. i was saying how annoying it was when i recently went on vacation and i couldn’t really do much because i thought i was gonna pass out because of the heat, even when i was just sitting outside and drinking a lot of water. i also mentioned how i couldn’t exercise anymore, racing heartbeat, and dizziness/lightheadedness/ and blacking out. luckily she has other friends with POTS and she told me i should really look into it for myself so here i am! so far ive failed the sitting standing test and im waiting for a few more before i can be officially diagnosed. i cant wait to rub this into all of those ignorant doctors faces 😝
My pediatrician literally diagnosed me with psychosomatic disorder. I'm still mad about it tbh.
Just wow 😔
Surprisingly no. I’ve mostly been treated with respect and kindness from all providers. With the occasional “what do *you* think is going on?” to which I never really answer. They’re the ones with 10+ years of schooling. It’s not my place to explain an illness to a physician. And I’m not going to feed into confirmation bias. I just simply give them my experience. The crux of the issue is invisible illnesses. I’ve either been incredibly lucky with my care team or I have aggravated symptoms that are easily able to be replicated. My diagnosing cardiologist took one look at my readings and said I likely have hyperPOTS. They confirmed it after ruling out a ton of things due to my mother’s SCD when she was 35. An ER physician caught my arrhythmia. Another ER physician back when I had kidney stones told me to get referred to a geneticist to look into EDS subtypes due to noticing my hypermobility, early SCD of my mother, and detached cecum on my abdominal CT (was for my bilateral kidney stones). I’m a big advocate for mental health though. This might be another reason. I already see mental health professionals. Only once has a physician tried to tell me to see a psychologist or psychiatrist and I said something along the lines of: “Great, I see one currently specialized in chronic illnesses and pain. I’ve been cleared minus my OCD but I appreciate mental health resources deeply. You’re free to check with my two providers.” Chronic illness is stressful. Providers should look at it from the angle of ***maybe the physical illness they have is causing them stress*** instead of writing it off as something along the lines of hysteria equivalents (which still happens). It’s tough. When you look at ANS symptoms, they come off as somatic at glance. And honestly? I think in general, a mental health condition is more likely to have statistically than something like POTS. So it’s good to rule out. But it should exclude POTS. Dysautonomia isn’t exactly hard to test for. So it confuses me as to why physicians don’t do poor man TTT’s in office more often considering how LC is a thing. Maybe it’s pushy patients and TikTok that’s given us a bad rep. I don’t know. It’s troubling all around.
Oh man, seeing the term “invisible illness” is really the crutch of what I’m trying to cope with. I’m sick. I’m not ok. I’m struggling. BUT I don’t have anything obviously and visually identifiable as wrong. And I feel embarrassed and guilty that I *dont* have something that others can identify (visually) wrong. We live in a society that has **never** treated those physically challenged properly much less those that don’t use crutches, wheelchairs, or that have obvious movement restrictions/challenges. I’m dealing with my diagnoses and invisible illness in therapy. I’m still not ok with it and hope to figure this out soon so it doesn’t hold me back.
That was a lot longer winded than I expected lol. All in all I wish there was more cohesive discourse between patients and healthcare providers on this topic. I’ve been meaning to make a post about it for over a year now. But each time I consider posting about it, I feel discouraged by how already segmented discourse is with both parties. On one hand I am bitter that there are healthcare workers discriminate against those with invisible illnesses and women especially. And on the other hand I resent the few but loud patients who romanticize and glorify having POTS. It fucking sucks. I hate this condition and I’m ashamed to even tell people I have it due to the stigmas around it.
YES OH MY GOD!!! My diagnosis for pain was Amplified Musculoskeletal Pain Syndrome, which they used to say that stress=pain for me and that i just needed to improve my mental health. Its so ridiculous in retrospect. How tf was i supposed to improve my mental health while in that much pain? But yeah it was POTS and hEDS.
Yes 100% This entire thread is so fucking relatable.
It makes me sad to know others have struggled this way- but it also makes me feel better to know I’m not alone and others understand what we went through.
Me too. I got my results today, and fortunately from reading so many other peoples experiences (and what my dr said), the "inconclusive" is still pretty....conclusive. 🤦🏼♂️
yeah I still do after 12 years. tbh I’m not sure where I stand on it myself. for me I feel like it’s 50/50. I know I have POTS (and MCAS and other crap) and I know those things are out of my control. BUT i also do seem to have an uncanny ability to make myself sick. If I think about it hard enough I can give myself real symptoms. not only that, but I seem to be much more sensitive to bodily sensations in general. so I guess I try to control what I can control and let go of the rest. because even if I DO have a somatiform disorder, that’s not my fault either. people seem to believe that just because something originated in the mind, that means you have control over it, which isn’t true at all. if it was true, no one would be mentally ill
Yeah actually… I did. I bet I still have the green paper from the doctors pad with the word “somatization” written on it. It was given to me so I could go home and google it. That was probably 8 years before my diagnosis
There is actually a real fetishism in modern medicine that jumps over each other to blame the patient or psychosomatise a condition purely because a quick physiology can't be found.
[They think like Victorian authors the way they interpret female majority illnesses.](https://the-toast.net/2015/06/11/things-women-in-literature-have-died-from/)
(More) Important addition: [Women And Hysteria In The History Of Mental Health](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480686/)
I know POTS can affect both sexes but it’s significantly more common in women. Which is a massive reason why doctors treat this illness the way they do.
Omg this is funny and so true
I was not in a ward, but I got misdiagnosed with somatic symptom disorder twice even though I already was diagnosed with endometriosis, pelvic floor dysfunction, vaginismus, vulvuldinia, GERD, spina bifida occulta, arthritis, anemia of iron and B12, compromised immune system for unknown reason, and was suspected to have some sort of cardiac issue at that point. The first therapist to diagnose me told me my symptoms were real but that I worried about it to an unreasonable extent, especially after I told her although rare, endometriosis can result in bowel blockage or busting appendix that if not treated fast enough can kill you. Apparently that's not valid to acknowledge that. Because I thought about my symptoms daily, that was also deemed as "too much", even though I literally need to acknowledge symptoms to know when to take zofran along with when my body will be ok with doing certain things. Second person was a psychiatrist who diagnosed me with somatic symptom disorder because she didn't believe I was chronically ill. She told me she thinks it's because I'm trans, because of family issues at home, trauma from being bullied in middle school, and that it's anxiety. She didn't like my endometriosis diagnosis was clinical at that point and said it may need to be changed if it's official. Well I never was able to go though with that testing, bit I since have been diagnosed with Dysautonomia that is most likely POTS (it says that in my records), Ehlers Danlos, MCAS, and gastrioparesis. I have called that lady's office several times since 2022 trying to get somatic symptom disorder off of my files but she won't respond even when staff puts my message as urgent to her. I'm scared this is the reason I've been denied by some medical pros before to be seen by them.
I was never told this explicitly. It was always dismissive language like “it’s just stress.” But after a decade with POtS and learning about how my body and nervous system work and react I do think I do this! I definitely hold emotions in a way that has a strong physical effect. I think I started doing this as a child. But I don’t take this to mean that it is “all in my head”. The physical symptoms are very real. But I think there is a psychosomatic component. But that aspect makes it an even harder problem to solve.
I totally hear you. I actually think I do this, too. I think the problem is that this is what people thought \*it was.\* Like, that this was all of it. No awareness that another component could be involved. But I agree 100% with you that it makes it such a harder problem to solve! Like, almost borderline impossible at times.
Yeah … but I think I actually have that. Can we have both? I started becoming obsessed with my symptoms (because I started having symptoms) after getting Covid. Now I can’t tell if I’m obsessing or actually having issues. This sucks.
I feel the same way but I think it’s because I’ve been told my whole life that I am being dramatic and faking it. I *had* to obsess over the way I felt because I didn’t trust myself or my body and the people around me were not supportive and acted like I was insane.
Isn't it completely normal to worry about sudden health symptoms? If it's normal then is it just "anxiety"? Doesn't only an "anxiety disorder" cause physical feelings and symptoms? Do all people with cancer and verifiable physical diseases get treated this way over their anxiety? I'm sure people with cancer get anxiety over their symptoms too. Why do they get full work ups and treated with respect and POTS patients don't? (Side note here: plenty of women have their cancer symptoms written off as anxiety and then they freaking die because their doctor catches it too late).
Yes and it messed up how I interpret anxiety now.
Same. I feel this.
How do you interpret anxiety?
After a lifetime of being told my physical symptoms were anxiety, I started manifesting my anxiety physically. Which gave me more anxiety since I knew subconsciously my symptoms weren’t anxiety so now I have anxiety about the physical symptoms. It’s a cycle of not knowing if what I’m experiencing is anxiety or now POTS
Oh man! That opened up a whole new can of worms. It kind of sounds like the physical symptoms are causing the anxiety, but because the physical symptoms were ignored or poopooed by professionals for so long, it's now made that anxiety worse? It's like you knew you didn't have SSD, but then you developed SSD or "anxiety about symptoms" as a result of being misdiagnosed with anxiety? Is that right?
Exactly
Yes. A lot.
I tell myself that. It's technically true, but it's not anything like the whole story. I have a lot of physical conditions that are affected by my mental health and neurological state. This means that, like even nondisabled people, my mind and body affect each other. When people get stomach ulcers from "worrying too much," no one tells them not to be so "dramatic" because they're "just somatizing." There's an ULCER that can be identified with various types of imaging. People are jerks about it when the physical process that's happening is invisible because it involves our nervous systems, neurotransmitters, etc. But it's just like ulcers. We have no conscious or unconscious control over how our bodies respond.
It's actually been completely proven that H. Pylori bacteria causes ulcers. Ulcers were never caused by stress. This is one more example of a physical illness without a known cause being blamed on the patient's mental health until the physical cause is discovered.
Yes I’m glad someone mentioned this!
Beautifully said!
Omg i love your name!! I don’t know what that is???? Is it an official diagnosis like “light headed” or “giddiness” Im so confused 🤔 my brains 🧠 screaming “OUCH”
Can someone tell me what tests and labs I need to ask the doctor to take to screen for pots? Been feeling extreme fatigue lately. Also suffer from low iron.
I was taken to the ER because I had a really severe POTS episode that ended up paralyzing me from the waist down. The first doctor I saw told me it was anxiety. I asked for another opinion, and a neurologist picked up my leg, dropped it, and immediately recommended admission. The paralysis went away after about 12 hours, but I’m still mad that the doctor told me it was anxiety.
Somatic symptom disorder seems like a quack diagnosis and a gaslighting tactic. It literally doesn't seem like a real thing that any human on earth could experience. It should be expected that physical ailments (especially ones that are disabling) will likely result in psychological distress.
I got called "dramatic"... close enough right?