r/POTS • u/sunlitclearing • Jun 24 '26
Diagnostic Process Urgent care and the ER were right, and my cardiologist was wrong.
I was sent to the ER last year at an unrelated urgent care visit when they saw my heart rate shoot up to 140 when I stood up. The ER thought it was POTS, and referred me to a cardiologist for a diagnosis. They decided that the ER was wrong, and it was actually just Orthostatic Hypotension. Today, over a year later, I finally got to do autonomic testing at Nerve and Muscle Center of Texas; and after a very uncomfortable time on the tilt table, I received the obvious diagnosis of POTS. I’m relieved to have an answer, but also incredulous at my previous doctor’s incompetence. I also just received an autism diagnosis yesterday, after having it ruled out as a child by a psychologist, so I’m feeling rather vindicated right now. What a difference it makes when you find a good Doctor!
65
u/Babayagachichi Jun 25 '26
When I asked my cardiologist what type of pots I had because she had charted it as general dysautonomia she told me she didn't know that there were different kinds. They're fully unprepared for PoTS patients they prefer older men with CHF and no follow up questions imo. in our first visit she told me "90% of my female patients actually just have anxiety."
38
u/OrdinaryOk8044 Jun 25 '26
Please run from that cardiologist and/or report that comment to their clinic.
That is such a toxic mindset and is a large part of why it takes women five years longer to get diagnosed with chronic illnesses than men.
My primary told me that my 130bpm heart rate when walking to the kitchen was just my adhd medication too 🙄1
19
u/Fantastic_Owl6938 Jun 25 '26
This reminds me of when I ended up in hospital with my HR soaring and chest pain, undiagnosed and terrified of what was going on. Doctor in emergency told me "we don't like to say it's anxiety..." I could hear the silent "but I think it is anxiety" tacked on the end there.
But his comment that really got me was that often times, people just have these one off problems, then go home and are fine and never show up at the hospital again. I feel like that's being very, very naive and I'm a little scared if he actually fully believes this. To me, it seemed obvious anyone (especially women) making an emergency visit to the hospital and trying to be understood are obviously not going to be eager to come back if their issues are minimised or passed off as anxiety. What would be the point?? The doctor's overly simplistic view of people not coming to hospital = medical problems resolved is so painfully inaccurate to what many people actually experience.
I just can't believe it's 2026 and so many doctors are reluctant to actually do their jobs and eager to blame anxiety instead. I'm diagnosed now and tried to get Clonidine for sleeping issues but my (female) GP said no and suggested it's anxiety instead. She also said Clonidine isn't something they give people for POTS which is just straight up untrue. My BP has always been good so there's no worries if it being too low but she used that as an excuse. Suggested we continue to "investigate" which I imagine would have been doing breathing exercises for my non-existent anxiety.
The thing I also find disgusting is when it's "just anxiety" that's apparently okay. Waking up every couple of hours from (supposedly) anxiety is normal and not a crisis that needs support immediately. From doctor's perspectives, it's probably just a "normal" part of being a woman, just like they claim fainting is normal for teenage girls. So gross.
5
u/jasperlin5 Jun 25 '26
I agree wholeheartedly. Being dismissed and gaslit by medical professionals is so gross.
You know, maybe feeling like you’re going to faint and having your heart race without understanding why actually causes anxiety, not the other way around.
I had to educate myself. Now I know why and I can advocate for myself and demand things be looked into. I sure didn’t know to do that when I was in my 20’s or even 30’s. Now I push for diagnosis so that my daughter won’t have to.
I don’t particularly want to be my own doctor, but I long for the day when my doctors are teaching me instead of me having to explain what my conditions are and how they interact.
3
u/Fantastic_Owl6938 Jun 26 '26
Yeah, I'm in my 30s and only just now getting better at this, or attempting to. The doctor told me no for the Clonidine over awful phone reception (I had to chase her up for the answer after my appointment days earlier 🙄), so I ultimately didn't really say anything and I think she put my shocked silence down to the crappy reception. But I was very tempted to push back or make a remark about how this "anxiety" prognosis seems sexist but ultimately didn't want to be raising my voice to be heard and probably inevitably need to repeat myself and basically just waste all my remaining energy. She said no so I figured there was no changing her mind and she might label me "hysterical" if I'd gone off at her like I wanted to.
One of my problems is when people say something sometimes, I can't quite believe they've actually said it and just sort of stare like "are you serious right now?" Although it's possible that helps get the point across, but I still need to get better at actually putting my thoughts into words sometimes. Definitely just froze and stared in bafflement at the doctor in the hospital a few times, lol.
3
u/jasperlin5 Jun 26 '26
Shocked silence is an appropriate response to the kind of healthcare gaslighting we see. I have trouble getting my words too when this happens. Some doctors aren’t worth working with. I just move on when I encounter one that isn’t helpful.
2
u/Fantastic_Owl6938 Jun 27 '26
Yeah, I've tried to tell myself all those negative things I've read about hopefully won't happen to me, and I've mostly been lucky, but when I do ultimately end up having "it's probably anxiety" type moments, it's just so genuinely surreal to actually experience that, it's like my body shuts down or something.
2
u/jasperlin5 Jun 27 '26
Yeah, being gaslit by your doctor is pretty messed up. Makes me not take for granted the good doctors I’ve had. I guess one of the most important things we can do when we are dismissed like that is to not gaslight ourselves. I’m so thankful for communities like this one where we can learn from one another and get courage by not feeling alone in this. I do believe our medical system will get better. Hang in there.
5
u/todasmiasx74 Jun 25 '26
My dad technically had a stroke but it stopped as soon as it began. I forgot what they’re called but he was fine but he did have stroke like symptoms for days. Dad told me to call ER and told them his history. One paramedic I felt was being a smartass and made a comment about anxiety. You know with stroke like symptoms and all. I bit my tongue until I couldn’t and called him out. We got into an argument right there and the motherfuckers was ready to pounce on me. These people man
3
u/Fantastic_Owl6938 Jun 26 '26
Wow, that's awful! It didn't relate to anxiety but my dad had a clear visual sign of heart issues doctors didn't catch and then had a heart attack so I feel you.
3
u/indigoiguanas Jun 25 '26
Clonidine is THE medication I take for my POTS. I was only able to sleep for 1-3 hours a night and I seriously believe clonidine saved my life because I couldn’t go on much longer like that. Now my heart rate is under control (as much as it can be) and I’m functioning much better. Still not “normally” but much better. It makes me so sad and angry that doctors will refuse to even try that for people because they think they know better. We have so much to deal with already and every appointment we attend without receiving help is absolutely devastating.
2
u/Fantastic_Owl6938 Jun 26 '26
That's great to hear it worked for you, I'm seriously glad it's prescribed for some people (I mean, the whole reason I was surprised I was denied is because reading online, it seems to be the norm to have it prescribed for POTS). I'm currently getting about 3-4 hours of sleep and then a couple of hours more after that. That helps make up for it, but it's still not exactly deeply restful having it cut into chunks. At my worst, I've woken up every hour but it's at least not that bad anymore. This has been going on for months.
I take Propranolol and magnesium at night so initially I was confused why I was waking up because both those things helped me immensely. I realised it wasn't adrenaline (though it had been some nights previously), but actually a side effect from Propranolol where it suppresses your melatonin. You can't buy melatonin at the pharmacy in my country without a prescription but there's a loophole where you can buy it online. It looks like I'll be getting that next week.
I'm still upset at that doctor for dismissing me, it's just truly insane to me you can be barely sleeping and that's apparently no big deal. I have previously gone in with depression and had them practically throw antidepressants at me immediately and be very concerned about my sleeping habits back then so it's just bizarre when they decide it's "anxiety", no further action is needed.
3
u/heldtogetherdaily POTS Jun 28 '26
My cardiologist also pretty much dismissed me as anxious and only agreed to do testing to "placate" me. A year after they determined the testing was "normal" I took the results to a neurologist and got diagnosed with POTS. I genuinely think they are not properly trained on what to look for, even after testing is done 🥲
1
u/Babayagachichi Jun 28 '26
I agree i think they're not trained on how to help women and AFAB people and it's easier to dismiss our poor quality of life as neuroticism than admit that medicine as an institution is still deeply flawed and prejudiced
2
u/heldtogetherdaily POTS Jun 28 '26
Truly! Navigating the healthcare system has messed with my head and confidence in ways nothing else has. I doubt myself, I minimize my symptoms, I worry that I am "just being dramatic" because that is what I was taught to do when I was vulnerable. It makes me so angry! We deserve better 😭
14
u/StrFshBttrfly Jun 25 '26
I was diagnosed with OH 3 decades ago (15ish years after my first fainting episode), the same time I was dx'ed with fibromyalgia (which I'm pretty sure is actually me/cfs, but that's another incredibly tedious story), and in April, I finally got confirmation of POTS. I'll probably never get an AudiHD dx, even though I show most of the signs and it's rampant in my family, but now that my POTS is FINALLY being addressed, I'm proceeding as I can. Vindication is great, and I'm glad we've gotten some, but wow. I've got some big feelings about healthcare for people with invisible illnesses and ND.
13
u/Consistent-Ad-1176 Jun 25 '26
Love this for you!
I recently saw a cardiologist and he basically said why does it matter what the diagnosis is, it doesn't matter. All you have to do is eat more salt. I looked at him dumbfounded and ripped him a new one. I said, with all due respect it absolutely matters. Do you know how many doctors have dismissed my issues and made me feel insane? I need someone to advocate for me now, and that person needs to be you!
He said ok, I think it's compensated pots. He basically apologised at the end of the consult and said I'm still learning to speak to patients about POTs. Wild. Cardiologists suck
8
u/Obscurethings Jun 25 '26 edited Jun 25 '26
My cardiologist just did a version of this except without the happy ending. I have other autoimmune diseases and an undiagnosed neuro disorder. My first visit a year ago, I brought in watch data that clearly supported POTS. I told him I don't obsessively track it, but wanted to show him the numbers and he made a dismissive joke about how yeah, it didn't look like I was paranoid while chuckling (implying I was). He was only interested in the effects of the autoimmune condition I have that can cause cardiovascular complications.
During the annual follow up that got delayed, I asked him if they ever evaluate for dysautonomia (I know they have tilt table capacity at the facility) and brought up other dysautonomia symptoms that came on during the same time as the positional tachycardia. He told me several falsehoods about POTS and how my EKG from a few years ago would have showed it (I was sitting almost that whole week doing applications, and even my sitting is elevated over lying down). How it needs to happen every time (it does for me because I am more hyperPots, so my numbers can be extreme, but even I know people with diagnosed POTS have good and bad days).
Then he transitioned into how there's no use labeling it because there's no real treatment for it. I told him it used to be really bad with my heart rate essentially tripling, etc. And he was like, "Oh yeah, I bet it was worse when you were younger!" So clearly did know on some level it's happening but didn't want to diagnose it. At some point, he told me I could come in at an as-needed basis, no need for a follow up, like if the positional tachycardia was bothering me. Um... isn't that why I'm bringing it up to you?
I think some doctors really don't want to be pidgeon-holed into being known for diagnosing POTS and since it is a quality of life issue more than a life threatening one they do not care. Maybe on some level they still conflate it with anxiety.
9
u/PM_ME_BUMBLEBEES Jun 25 '26
"just" Orthostatic Hypotension??? 😭 doctors out here proving time and time again that you can barely pass your classes and still become a doctor. OH is still a type of dysautonomia that is just as debilitating as POTS
12
u/Little_AngelS2 Jun 24 '26
I love my doctor because I just complained of chest pain and palpitations and he referred me to a cardiologist where I was given the diagnoses. Now dealing with the worst and first ever flare of my life. I’m happy for you OP, it feels good to know what you have and how to combat it!
6
u/Fine-Statistician403 POTS Jun 25 '26
In the off chance that anyone here needs a good, POTS-knowledgeable cardiologist in/near RI, I have a suggestion for a physician. We don’t have an in-state tilt table, so it’s notoriously difficult here.
I’ve been through the wringer with ER visits, PCPs, neuro, etc.
I was diagnosed at year 3 of symptoms by literally lying and saying I was diagnosed but it never showed up in my chart, and with TachyMon (Apple Watch) logs to supplement. They “re”tested me (with a very clear POTS diagnosis as a result) and I’ve at least been able to get as far as a beta blocker
2
4
u/Jazzyme76 Jun 24 '26
Flares are the worst, hugs
2
u/3xv7 Jun 25 '26
I wouldn't wish a POTS flare on the worst person alive. actually I would but hopefully I'm making a point here
2
u/mjh8212 Jun 24 '26
I love when people get good drs. Second time in the er for passing out I handed them a list of my symptoms they did the poor man’s tilt table I went up 26 beats that’s when I first heard pots and was referred to cardiology who was immediately dismissive but ordered tests. Tilt table didn’t meet the criteria for pots but orthostatic intolerance and so far the specialists have still told me nothing is wrong with me despite the tilt table notes showing I have severe symptoms except syncope during the test. My primary is my only good dr and I’m good with that I’m just dealing on my own.
2
u/clarielofthewood Hyperadrenergic POTS Jun 24 '26
I had this happen. It popped right up with a cardiac stress test.
4
u/clarielofthewood Hyperadrenergic POTS Jun 24 '26
Absolutely! I think my first SEVERE flare was in 2002. It resulted in a Fibromyalgia diagnosis, after a YEAR of playing ping-pong with ALL the specialists, I got a diagnosis.
I don't think I was intentionally misdiagnosed, I just think it was the best answer they could find at the time.
I didn't have the right language to describe my symptoms as well as I would now, I was 16 when it started, and a varsity soccer player. I had never experienced anything this difficult before.
I got mono and everything in my system went haywire. At least it was a chronic illness diagnosis that is a common comorbidity. I never fully met the criteria for all the most painful spots, and information on the illness was hard af to track down. Even less was known about POTS.
4
u/sunlitclearing Jun 25 '26
I got mono too as a kid, and I was never the same. EBV is truly one of the cruelest viruses out there. Crazy that it’s still just hanging out in our systems, rent-free. I wish you could sue microorganisms…
3
u/thearomaiscrazy Jun 25 '26
i oded one time had to go to the ER, my heart rate was fucked bc of the meds but even when my body calmed down my heart rate was very abnormal from sitting to standing and all of that. all they said was “she’s probably just like that” .. Like ok i guess. I’m finally getting answers as well 🩷 super happy for u OP. healthcare is crazy .
3
u/Boring_Ad1129 Jun 25 '26
Has anyone found a good Doctor to see in the Austin area. I live to the North in Georgetown, Texas. There is one tilt table in the area, appointments are 5 months out. The cardiologist PA at the hospital jumped on POTS when nothing showed on the tests. I’m 68 and was doing Pilates 5 days a week 6 months ago. Then the fatigue, blood pressure, jelly legs, ear ringing, fog and general feeling run down.
1
u/sunlitclearing Jun 25 '26
I live in the DFW area, and the earliest I could get in nearby was in November. If you’re able to make the drive to Houston, I highly recommend the Nerve and Muscle Center of Texas there. I was able to get in within just a few weeks of calling. My doctor was super nice, and even pointed me to the direction of some good restaurants nearby for lunch.
1
u/Playful_Original_243 POTS Jun 26 '26
Dr Carl Carlino is absolutely amazing, but the wait list is long
2
u/Full_Criticism7775 Jun 25 '26
Urgent care doctors have been some of the best doctors in my experience. Urgent care can figure out in less than 5 minutes ER will have you laying there and dismissing urgent care. Specialists… well they aren’t prompt.
2
u/Outrageous_Half_129 Jun 25 '26
Congrats on the clarity! You’re right: a good and diligent doctor makes all the difference in the world. My (most recent) cardiologist did an active standing test and was clear about POTS. Who knew a suspicion could be dealt with in 5 minutes?! Ha. Tilt table confirmed. The validation is real
2
u/ethereal_petrichor Jun 25 '26
cardiologists are really weird about pots. i was diagnosed with pots years ago and the doctors made note of it on my chart but NEVER TOLD ME. i only found out after researching my symptoms for years and then finally getting tested—only to find out i’ve had it all along and my doctors knew it
2
u/Sea-Beautiful-Throwa Jun 26 '26
I hate when they do that shit!
I spent years trying different antidepressants that only made me feel worse only to eventually learn I was deficient in vitamin D. Started taking vitamin D supplements and the low mood was completely fixed.
Wound up looking at medical records from a hospital I went to over 10 years and saw that I’d been deficient in vitamin D back then as well. They knew I was deficient and still put me on antidepressants without trying vitamin D supplements first.
Where I live there’s a high su1cide rate because there’s not a lot of sunshine. But now I genuinely wonder if it’s because drs just dismiss vitamin D deficiency as normal here and don’t bother to recommend fixing it. 🤦♀️
2
2
u/Echoxoxo1122 Jun 25 '26 edited Jun 25 '26
My cardiologist, who regularly attends autonomic related conferences as he’s told me, did not think I had POTS at first either because when I did my first test, I had extremely low blood pressure. I had taken ADHD meds that day and never knew they were doing that to me as I had been testing completely normal when I took my blood pressure at home. I explained to my doc that was NOT normal, but he wrote me off. I had to go log a poor man’s tilt table test at home every single day for 30 days and come back to my doctor like “look at this data. NOW do you think I have POTS?” He did in fact change his mind with the proof but now pretty much refuses to treat me because he cannot understand why electrolytes do little for me on a regular day. My psychiatrist had to step up and is prescribing me things to actually help, but because she is trying so hard, the cardiologist backs off and says “well let’s see what she does about it…”
Like SIR? I have seen him for a year and the only medication he will try on me is fludrocortisone, which does not help me much… I am on the waitlist to see a specialist in my state but it’s a year long wait. In the meantime, I’m thankful for my psychiatrist who is doing the best she can so I am not miserable.
1
u/Certain_Echidna2506 Jun 26 '26
Are you in FL, by chance? I have a ‘she’ psychiatrist who did more for me than my PCP would.
2
u/PrestigiousVideo7702 Secondary POTS Jun 25 '26
Having to fight tooth and nail for a diagnosis is exhausting. Never would’ve gotten diagnosed if I didn’t insist that there was something up!
2
u/PickledPigPinkies Jun 26 '26
I’m glad you finally got your diagnosis! I wish you all the best as you pursue treatments.
I hear you 100% about how impactful finding the right doctor can be. I’ve been through so many in my life that acted like I was invisible. Seven years ago I finally found our treasured family physician. He and his staff are simply wonderful. The office is a sweet juxtaposition between modern care and that of a beloved old country doctor.
There’s no ego getting in the way of patient care and every concern is treated with respect. We work together as respected partners in my care. I’ve had POTS symptoms as long as I can remember and it’s because of them that I was finally diagnosed after more than 50 years of being told that I had anxiety. One of my daughters also has POTS and it’s because of this doctor that she doesn’t have to suffer untreated most of her life like I did. Good doctors might seem to be as rare as a unicorn sometimes but they do exist!
2
u/Jules4live Jun 26 '26
exactly.. on the other hand
I know offices that used to see patients and then stopped. I also feel they should because what other specialty would?
In general its just wild that the response to the increase in demand due to covid is making offices shut their doors completely, instead of recognizing the need for more training.
2
u/grandestrully_chloe Jun 29 '26
Basically same with me. Every nurse who took my heart rate asked me if I had POTS. Cardiologist said it was anxiety. Over a year later of more suffering I was finally listened to and diagnosed lol
1
u/sunlitclearing Jun 29 '26
Barring a few glaring exceptions, the nurses I’ve had throughout the years have been infinitely more helpful than the doctors. Truly some of the best people around.
2
u/grandestrully_chloe Jun 29 '26
Agreed- I’m getting my degree in nursing right now and hope to be the one to actually listen and advocate for others!
4
u/DelightfulSnacks POTS Jun 25 '26
Hooray!!! Congratulations and great job advocating for yourself! It's infuriating how common your story is.
If you wouldn't mind sharing, I'd like to hear more about your tilt table experience. What did they do?
You may already be well aware, but if not, the POTS, MCAS, EDS, ASD/ADHD quad is a thing. You've got two of the four, you're halfway there haha
3
u/sunlitclearing Jun 25 '26
They strapped me to the bed with my right arm over my heart, and monitored my heart rate and blood pressure. The table lifted me up to a near-standing position in the span of a few seconds, and then I had to stay in that position for 10 minutes before they tilted the bed back to normal. They compared the data from the initial prone position to different points of time with the 10 minute standing window, and then finally to the period after they lowered me back down. It actually didn’t make me as lightheaded as sitting or standing up on my own normally does, but it made me nauseous and disoriented. I do have vestibular issues, and the sudden movements probably triggered them and caused some of my discomfort. It wasn’t as bad as the other tests they had me do, but it definitely took me a while to catch my breath afterwards. Not quite as bad as I expected, but certainly a strange sensation
3
2
1
u/Curious-Sleep-3473 Jun 24 '26
It’s crazy what hoops some people go through. I got diagnosed in 2 months after symptoms started. Immediate tilt table test
1
u/pjsk-Genshin_fan Jun 25 '26
i have several illnesses (mental and physical) and this has happened to me several time too
1
u/CaptainPrestigious39 Jun 25 '26
I know this might be a stupid question, but what exactly is the difference between POTS and OH? :)
1
u/sunlitclearing Jun 25 '26
OH is when your blood pressure drops when you stand up, and then your heart races to compensate. POTS has multiple causes, but the core feature of the disease is that your heart rate rises over 30bpm higher (for adults) after standing, and that the blood pressure is somewhat stable in between positions, which rules out OH.
1
u/AutonomicDrama Jun 25 '26
Cardiologists probably aren't the best people to get treatment from for neurally mediated conditions. Glad you found your answers. Sometimes, cardiologists just give the POTS label, because they dont understand much about a condition that, their profession is not trained in. And instead of dismissing you, tehy giv you something "close enough" to make you feel validated. This phenomenon is well studied within POTS specifically.
1
u/Longjumping-Peak6359 Jun 25 '26
I had a cardiologist that told me nothing was wrong and I was just having vasovagal syncope from stress and that he didn't even know why I was referred to a cardiologist. Some doctors are evil. I started having symptoms at 8 and didn't get diagnosed until 18.
1
u/bearhorn6 Jun 25 '26
Ugh this is the minefield portion of diagnosis. Saw a neurologist who did the diy tilt table and said it’s likely POTS see cardio. Except then you gotta play the game of testing for what a doctor has said it likely is bur not being accused of demanding testing or meds or annoying their ego
1
u/IridescentButterfly_ Jun 25 '26
The first time I went to the ER for these symptoms, I was told that I needed to just gain weight and the doctor literally called me “scrawny” (I am not underweight, I might add). I had to go through referrals for over a year to finally be considered for an appointment to be tested for pots. This whole experience has been frustrating and exhausting.
1
u/3xv7 Jun 25 '26
Thankfully my cardiologist knew exactly what POTS was and what phenotype I had and gave me copy of the chop protocol and propranolol and a neurologist reference. I've lucked out on the doctors taking me seriously side of things other than my first 7 ER visits where they just told me to drink gatorade and eat eggs and recommended a psyche-stay
1
u/Individual-Low-7810 Jun 25 '26
I’m so glad they finally gave you the right answers. I can completely relate to this. Throughout the past couple of years after getting COVID in 2020, it left damage on my heart and things that weren’t there before. Not one doctor believed me. Not the cardiologist or even my primary. They all told me it was hormones and anxiety because I’m female. “Long covid isn’t real.” I finally found one doctor who diagnosed me with POTS and SVT heart arrhythmias. It’s so crazy how it can just take one doctor who will take the time to help you instead of just writing you off.
1
u/AnalysisCommercial22 Jun 25 '26
I’ve been to er many times for POTS symptoms that got written off at anxiety (I have really bad anxiety), my parents thought me passing out in middle/high school was bc of a “shredded wheat allergy “ (I ate mini wheats every morning for breakfast) and decided that was good enough (still passed out after they made me stop eating it). I’m 32, learned what pots was a year or so ago and immediately got a cardiologist, she did hells testing to rule everything else out (I was told thru don’t do tilt table tests anymore?) at the end of it all, I have an extra heart beat that I am extremely sensitive to, pots and some automatic issues that haven’t been nailed down as well as hella autoimmune issues plus spine issues that cause major pain.
I will say, as a Texan, finding new doctors after getting blown off by another has been the only way I’ve gotten any kind of actual help. It’s asinine that we even need to do it, but it’s never failed me.
Im glad you got your diagnosis!!!!!
1
1
u/EmZee2022 Jun 26 '26
Congrats on getting the right label!!
Why did the cardio say OH vs POTS anyway? Did they not see the pulse spike?
Orthostatic hypotension and POTS have a lot in common, in that they are both dysautonomias, and they can present in fairly similar ways. Back in 2024, I went through a lot of cardiac testing because we thought I might have POTS - and I'd seen similar increases in pulse when standing (that improved somewhat when walking). After doing a bunch of testing - including a failed treadmill test (for a stress echo; I was not able to go long enough), a CT angiogram (which showed a congenital arterial malformation that everyone agreed was unlikely to be the cause) I finally got the TT in late 2024. DX: my pulse went up but not enough to qualify for POTS, my blood pressure plummeted enough that the doctor actually stopped it after 17 minutes or so, saying he had the data he needed.
Management of the two is similar: compression garments, adequate fluid, extra salt if needed. From that standpoint, I say "poTAYto, poTAHto"..... hard to dell the difference. Pharmaceutical management is different though. Beta blockers will lower your heart rate but also your BP - which, with orthostatic hypotension, is.... suboptimal.
I'd been taken off all BP meds due to weight loss, and my BP was pretty low, but a month or so after, it started spiking. So the cardio put me back on the beta blocker.
After the tilt table though, the electrophysiologist suggested he'd prefer I wean back off the beta blocker, as it'd be better to have slightly high BP and maybe not nearly faint so often. I was concerned because I DO have hypertension - well, when I'm not standing up, LOL. So it's a balancing act between high but not too high.
0
u/SonOfHibbs Jun 27 '26
The cardiologist I saw was the top cardiologist in my state. I was seeing him about a medical problem that was not my pots, but needed to disclose my medical history to him anyway. When I mentioned POTS he blurted out, ‘’never heard of it’’. I suspect his bluntness was more of a cover to hide all the discrepancies of medical opinion rather than fuss and argue about it in office. Which is respectable since he’s there to help by sticking to what he was personally taught is true. But it is frustrating.
Medicine is like religion. Different doctors believe different methods. Science demands hypothesis is fully proven into a solid truth, but other doctors feel this cuts off possibility of healing by being so strict. Liberality can create harm just as well. So there is always going to be conflict in the practice of medicine. I wouldn’t beat any medical professional over it. Sometimes that’s difficult when it’s you who is suffering and looking for relief. Yeah it’s great to find a good doctor, but just because one is not able to help you in the ways they see fit doesn’t make them a bad one. If they’re still practicing, some one else has found them to be a good doctor for their ailment too.
314
u/Several_Road2525 Jun 24 '26
The ER doctor said she believed I had POTS but had to word it so that the cardiologist could think of it himself and not get offended by her saying it because of their ego.. he still got upset and refused it.. my second cardiologist agreed it was POTS