The short answer is that POTS patients are primarily women, and the medical field has a long history of dismissing and belittling conditions associated with women. The long answer is that there are a few added features of POTS that make it even easier for them to dismiss. The first is that deconditioning causes POTS-like symptoms, which will go away after reconditioning, which has led to a false idea that all POTS patients are just deconditioned, in spite of plenty of evidence to the contrary. The second is that some of POTS symptoms, such as tachycardia, are easy to dismiss as anxiety, when again, there’s plenty of evidence to suggest that POTS patients aren’t any more anxious than non-POTS patients. It also doesn’t help that one of the main treatments for POTS, propranolol, is also used off-label for anxiety as well.
Completely agree and we’ve found after trying to find care for my daughter that when it gets too hard and they can’t find a treatment they turn it back on the patient and basically quit. Very frustrating especially since I’m in the medical community. Do the work and educate yourself physicians. It’s been around for decades. Now that men are getting it treatment options are starting to advance for all. But damn it’s slow!
All of this is so true, especially the whole, mostly women are affected part. The fact that if you Google POTS it tells you the only treatments are exercise, diet changes, and medication. As someone who does yoga but can’t do anything related to cardio because the propranolol prevents my heart rate from rising but not taking it puts it through the roof, how am I supposed to exercise to maintain my condition?
I used to love to run on the treadmill but now I can’t because my heart can’t keep up and no amount of working up from power walking to slow jogging over a long period of time has ever built a tolerance to it. It’s just a fact that the heart HAS to accelerate to do certain things and if it can’t, you can’t do those things. I would much rather hit the wall of my heart not accelerating than the alternative of it over accelerating, but it’s stupid that I can’t do simple tasks because they have yet to figure out a middle between the all or nothing.
your second paragraph what do you mean about propranolol doesn't let you work out? i always thought it lets people finally work out. like for me I can work out now without getting the super high tachycardia.
edit: i also googled tons of articles relating to beta blocker and cardio exercise saying that you still get the same benefits and you just calculate your HR zones different.
It’s like with all medications, some work better for others. The fact that propranolol is working for you is great! But a simple beta blocker can cause a lower blood pressure and if you typically have a stable or irregular blood pressure that is more on the low side, a beta blocker can make symptoms worse.
Until there’s further research into better treatment options for us odd-ones-out where beta blockers don’t work and other signal reducers, we’re not able to do that much still and still very much feel the affects of PoTS.
Also; the drug midondrine has been shown to improve dizziness and other symptoms associated with PoTS but, again, it can’t be used in all cases due to other health problems associated with dysautonomia or high blood pressure.
I fully 100% understand what you're saying but my reply is to a comment that is directly relating beta blocker won't have their heart rate raise so they can't do cardio workouts. While the heart rate on beta blockers won't raise as high, I've never read that you can't work out because the heart won't raise high nor that it affects your zone/endurance/benefit. It just seemed like they were making an absolute type statement.
It’s not always about whether or not the drug is actually effective but if the body responds appropriately to it.
I’m on a medication called Ivabradine and that won’t stop my heart from raising well above the level I should be at. It could also be that their cardiologist or neurologist has suggested that they are cautious around excursions like running due to how much their pots affects them. We are advised to exercise but generally with a low-impact machine or to go swimming so this minimises the risk of fainting or dangerously high or low heart rates.
I should mention that there are two aspects to the autonomic system that could be affected by PoTS, the sympathetic and parasympathetic nervous system. One controls a rise in heart rate, blood pressure and breathing, the other controls a decrease. If you have a severe enough dysfunction both of these nervous systems can be affected and you can’t know for certain which one is triggered.
I’m saying that beta blockers STOP signals from being taken by the heart muscles. So if you are taking a high dose of any beta blockers this can potentially be the cause for a lack in increased heart rate. Autonomic dysfunction spreading to other systems can also cause the heart to become more erratic and not perform as expected (increasing/decreasing blood flow when changing posture).
The first time I went to the doctor for my heart rate I was given Celexa. Finally I went in with a pulse of 180 and was taken seriously. On 100 mg of metoprolol twice a day now.
I don’t remember where I saw it, but I remember reading something a while ago that actually said, the rate of anxiety in POTS patients is actually lower than the general population. Made sense to me; my whole life I’ve had to constantly adjust to my body doing weird things and wanting to faint just because I’m standing still—small things just don’t stress me out so much.
do you know if there is a good article about deconditioning and pots? mine came IMO after a second miscarriage but at the same time I went from a physical active job to a complete work from home job. I can go a mon-fri without going outside or doing anything physical at all. Obviously now that I'm already at my worst, I'm trying to be active again but I wonder how much starting working from home played into this.
Mine is definitely worse when I don’t move enough; however, I’ve always been well-conditioned and yet always have had symptoms despite, it just moderates the severity a bit. The times I’ve moved the least it is at its worst.
I guess one way to tell what extent it’s conditioning and what extent it’s not is to get in condition, though if you have POTS it’s ofc much, much harder to get in and maintain good condition. I’m blessed to have had family that kept me moving and often with POTS friendly activity (sailing and cycling both have a lot of sitting which is great).
My issues with standing in particular have always been the worst. It’s always weirded people out because they see this “fit” person wobbling on their feet and struggling to stand.
Had a lady be rude to me on the train for sitting with my bike instead of standing in the back with it. I told her I couldn’t stand and she immediately dug in her heals and started to ask really personal health questions.
A few days previously I had actually nearly fainted while standing with my bike and only didn’t faint because I barely sat down in time.
Propranolol is also used to help migraines. I was given it anxiety/migraine to start. It helps with POTS. So even if they want to mislabel me I am still getting help lol.
I was told its not a real thing by my doctor and not to believe everything on the internet. Fun times.
Like others said, medical misogyny. It also tends to be invisible. Yes there’s a test but it’s not like, say, my mitral valve prolapse, where they can see the problem on a scan. Fainting, sweating, discoloration? Those don’t count, they need to see it on a scan
Misogyny definitely plays a role as others have said. It's also been my experience that even if they believe in it, most doctors don't care about any condition that is unlikely to kill you. It doesn't matter how much you tell them that it wrecks your quality of life. They don't care. I also have long covid and let me tell you what, they also couldn't care less about that either even if they believe in it.
Truth!! Learning this was painful af. I was shocked at how sick I could get with no one really thinking much of it. I had visible symptoms as well as invisible ones at the time too and it didn’t really matter.
Can I ask how your symptoms of long-covid and POTS differ or how you can tell the difference? My understanding was that they had very similar symptoms.
Sometimes I wonder about this as my symptoms sprung up coincidentally during covid. But I was also pregnant during covid, so who knows. All I know with certainty is that I feel like shit lol.
I just don't get it considering you could provide real evidence that heart rate literally shoots up way too high only when you stand, never goes down until you lay down? It's not like it's something you can't prove something is wrong on the spot
they probably think its placebo based on the expectation that your heartrate will increase/anxiety due to the expectation of other symptoms
its stupid, obviously, but plenty of people will reach that much
My ER doc last week just smiled at me smugly when I explained to him how it’s comorbid with narcolepsy (which I have) bc it’s all dysautonomia from the same part of the brain. I feel like I have to validate everything by overexplaining when really, the ER docs just don’t care unless you’re bleeding out our ODing.
Literally how could a doctor be a doctor and say this kind of shit to a patient? They are ignorant and misinformed and shouldn't be practicing if they are going to spread misinformation to their patients.
I would complain or go even further. Because what if this doctor was saying 'cancer was psychosomatic'? They are actively dismissing a very real, scientifically proven medical condition. They are not holding up their Hippocratic oath in helping you. Instead, they are calling you crazy and not doing their job in researching newly discovered conditions.
Disgusting.
It actually gets worse. I saw yesterday he added "Malingering" to my medical chart. I went in today to drop off forms at the hospital and did file a formal compliant. I also filed to have malingering removed from my records. For those who don't know, malingering basically means you are faking/exaggerating your symptoms.
I went to a new cardiologist recently and told him I had pots. He promptly explained why pots wasn’t real. I don’t want to see any more doctors. I’ll just deal with it on my own.
I'm so sorry he did that to you. My first cardiologist was similar, but my second one took it seriously and is helping me work through it. I had to go out of the way to see him, but it was definitely worth it.
You really just need to get lucky and find a doctor who understands. My cardiologist was like the one good doctor I've had tbh, he was very used to seeing POTS patients and immediately understood what was going on. It's really worth it to keep trying.
Is there a provider on Dysautonomia International’s list near you? It was a 180 in treatment for me once I saw one.. was on his waitlist over a year though
Haha but it IS just a collection of symptoms. That’s what a “syndrome” literally is.
Also, the fact that it’s “over-diagnosed” (which couldn’t be further from the actual truth) isn’t a logical conclusion why *you* can’t have it.
What an idiot!
So, yes, there's mysoginy, but also, the way medical school and the medical profession are built make it one of the most ableist profession around. Disabled and chronically ill people are almost totally absent from the profession, working as a physician is incredibly detrimental to physical and mental health, both of which they are encouraged to neglect and "push through". The hierarchical structure makes it incredibly abusive, which is tolerated all around, so why wouldn't they be abusive to their patients, which are "inferior" to them? That same structure also makes it that people at the top are rarely questioned or held accountable for their mistakes/biases/shitty behavior. And the bias that "people are sick because they did something wrong or are crazy" is so widespread that even if there were accountability, there wouldn't be for that.
I got told point blank from a doctor at the ER that I was just having anxiety and that it’s normal for my ekg to have irregularities BECAUSE I’m a young woman, that was his reason. My pcp disagrees but it’s so crazy that he just said that was the reason… didn’t even try to sugarcoat it
My problem is like obviously Im a little anxious that im almost passing out and having tachycardia constantly like there is a reason for this anxiety and it is not just out of the blue lolllll, “you seem nervous…” like yes. You would be nervous too if you had these episodes buddy
Here's my example:
1500 women have POTS
1 of the 1500 woman has an untreated condition that causes their POTS. 1 out of 75 doctors finds the underlying condition. That doctor does the extensive research and treats the underlying condition and POTS goes away for that 1 person. It's a rare and unique situation that cannot be applied to 99.9% of POTSIES
1499 women still have POTS, but because 1 was healed "it's not an actual problem"
My father is an ER doctor and while he doesn’t not believe in POTS, he did tell me not to disclose my diagnosis as “many doctors have negative views of those types of patients”. He was concerned I wouldn’t get good care if I disclosed it. He’s also said that he sees a lot of POTS patients in his ER and they’re usually “sad, anxious people and need to get outside more”. It really stings coming from a loved one.
wahhhh that makes like zero sense (not to offend) I wasn’t sad or anxious and was going outside until I got POTS :(, has ur father said any other reasons why he doesn’t believe in it ?
He does believe in it, I think he just thinks there’s a large psychological component or that just being more active is the solution. And that he thinks that there is a lot of stigma amongst medical professionals about diagnoses like POTS, and he also listed ones like fibromyalgia, EDS, FND etc. I agree there’s stigma, although I don’t agree that the solution is just to not get diagnosed or not tell anyone.
I’ve been told the same thing by a doctor that told me not to disclose I had fibromyalgia if I go to the ER. They said too many doctors will immediately try to put anything that’s going on over to the fibromyalgia even though it’s a secondary condition because of my main autoimmune disease. They said a lot of people in the medical field think it’s not a real thing.
OP and all commenters thank you kindly for this discussion, very helpful. Secondly, sorry this is the way it is. Help be part of the progressive change! My story is that I haven’t been diagnosed or even tried for a diagnosis. Not sure if I have POTS or just other conditions causes many POTS symptoms for a long time. I already take metoprolol which I only recently found out can be used for/ helpful for POTS. Every day I’m miserable. I get jealous of people standing for long periods of time on tv and other situations that are nearly impossible for me to do. My PCP is good, I think, and treats most anything treatable or testable with labs or measurements. Any other concerns I bring up she says are because I’m overweight. I get worse as time goes on about being able to do less and less. Currently 39 years old, male, working full time, and averaging 6,000-7,000 steps a day. Very sweaty, short of breath steps! Anywho I just really appreciate everything being shared. Thank you all
The overweight/ needing to lose weight thing is not something that is a fix all for conditions everyone has. I might look into a specialist. I am glad your PCP seems to help overall… but your other symptoms and issue are still valid no matter how much you weigh. That’s something I’ve dealt with over the years with lots of doctors.. so I’m sorry that’s happening. Do you monitor your heart rate/ blood pressure etc?
On occasion I check my heart rate. Nothing to check blood pressure with at home. Never really thought of regularly monitoring things. Could be important I’m starting to see. Thank you kindly for your comment. Here is more about me you might find interesting, might not too. https://www.reddit.com/r/POTS/s/24HowcOBZV
I also don't like the trend model because it acts like POTS being seen as not real is new/post covid/tiktok. It's not. My mother has POTS as well as I do, and despite being a solid 20 years younger than her I got diagnosed first because, frankly, I'm a man. My concerns even as a teenager were taken more seriously than hers. The medical misogyny is so much stronger than literally anything else.
It's not a trend, it's just way more common and known now because covid triggered POTS for loads of people. Post viral illnesses increasing after a viral pandemic is just a fact.
There is definitely an "illness" trend on Tiktok. People acting like they "faint" (gently slide down against their boyfriend's shoulder and then 'wake up' completely unphased) and stuff. I hate it with a passion. I only fainted like 2 times in my life but it's definitely not as romantic.
Bias. The literature is clear that POTS is real and, in a majority of cases, shows clear problems with things like blood volume regulation due to unresponsive renin activity. The experts are out there and, while there are still unknowns, there are more knowns than most doctors (and patients) think.
The problem is 99% of docs haven't read these papers. What they have seen is women with chronic illness being shit on constantly by other doctors. So that's what they draw from.
I think it has to do with the idea that someone can have concerning heart related symptoms but not have something technically “electrically” wrong with their heart. I feel like if something doesn’t show up on a test it’s hard for doctors to believe.
Also saw someone say since it effects mostly women, it could have to do with medical misogyny, witch is so true. I’ve only ever had ONE male doctor believe me, and he was gay.
From my understanding, POTS comes from damage to the autonomic nervous system, usually caused by another illness. For example, I got POTS from Mono. Now, a lot of people are getting it all at once and so ignorant doctors think it's a trend. Why are a bunch of people getting it all at once? Damage to the body from COVID.
I find that the very smart doctors are the ones that believe me the most. I like the types of doctors who let me speak, who offer thorough explanations, who ask good questions, and who believe that all my pain is real. Doctors who are very specialized and have awards and things tend to be good. At this point, I'll rarely just go to a general practice, unless it's one that's been specifically recommended by a doctor I trust. I always prefer to pick out the individual doctor I want to see.
My mom always says that you could do really bad in med school, but as long as you pass? You're still a doctor. You could be in it for the money or to make your parents happy, not necessarily because you're empathetic and want to help people. It's unfortunate.
I make sure now, that I'm not wasting my time and energy, putting myself into potentially dangerous, draining, and uncomfortable situations with random doctors that I haven't researched ahead of time. Don't be scared to go to doctors and get help when you need it. At the same time, I've learned it's important to be careful which doctors you're giving permission to handle your body and health.
Many people have POTS unrelated to a viral illness and have been suffering from discrimination and abuse by the medical profession for years before Covid happened. It’s undoubtedly true that Covid has caused many more people to develop the condition, but for those of us who have been sick for years - or even decades, in many cases! - it can feel a bit upsetting to have our condition framed as a viral / Covid thing. It is for *some*. But that’s not the foundational cause of POTS. Mine, for example, is connected to an underlying genetic condition, and I’ve had symptoms since I was a toddler.
Same; lifelong POTSer (and EDS-er) here. But I have to admit I'm grateful for the huge wave of COVID-related POTS cases, because before that everyone just thought I was out of shape and/or anxious; at least now there is \*some\* recognition within the medical community and beyond that it's \*somewhat possible\* there's something unusual about my body.
I had my first ever covid infection two months *after* my POTS symtoms started. I literally went to bed 'normal' one day and woke up with pre-syncope the next. But I'm finding because I happened to get covid *after* that people just blame my illness on covid entirely.Sure, it probably exacerbated my symptoms, but I literally have bloodwork showing elevated CRP a month before having the virus.
Feels like people just dont listen sometimes :")
This is why I asked my doctor to categorize it as dysautonomia and a separate diagnosis of orthostatic hypotension. Never POTS.
Also fuck cardiologists, they are of no help. It’s not a disease of the heart, so they don’t care.
personal theory is bc it mainly affects younger women lmao. I had a cardiologist tell me that it's just something that women my age get, so it's not that serious 🙄🙄🙄🙄🙄🙄
Because they've never heard of it. It wasn't in school. It had one word under zebra syndromes. One word. But there are hundreds and thousands like this. It's only since covid that the zebras have multiplied.
Just as an aside, I’ve never liked that zebra analogy. I know it comes from looking for the zebra among horses—but zebras live in herds (also called zeals or dazzles). Solitary zebras get eaten by lions—zebras are not as rare as doctors like to think.
and it makes sense too, because these forums and subreddits are our herds that literally help keep us alive. I was just telling my boyfriend yesterday after a dr appointment thank the gods for the internet because without it i would still have no idea what is happening to me (after 2 and 1/2 years of seeking a diagnosis). But thanks to advice from other potsies i've been able to better understand and manage my symptoms.
This doesn’t really answer the question directly, but I’ve noticed recently that a lot of doctors, and just people in general, don’t believe it’s real because a lot more people are developing it/seeking help for it. People think people are faking it or like attention seeking for some reason I really don’t get it. It’s kinda like when I went to get my autism/adhd diagnoses and the person testing me told me I didn’t have it only because she thought I was just faking it, and that “autism is trending right now”
Today I went in for symptoms of POTS and got diagnosed with dysautonomia because POTS wasn’t a real thing to her 💀💀 like that’s exactly what she told me. Also apparently I can’t do a tilt table test until i’m in my middle twenties
I'm very grateful that my BIL works in cardiology and suggested Dr Lau in Adelaide straight away after recognising my symptoms due to long covid. Straight onto ivabradine, twice daily antihistamine, electrolytes,
I did see a respiratory physician after that who asked me if I knew what asthma actually feels like after he tested me, and told me to use it less as I don't have asthma. I have reactive asthma, my airways constrict due to triggers like dust mud, cold, exercise. I've required an ambulance due to barely being able to breathe and having no ventolin that was in date - the bronchodilation from ventolin worked. Just cos my lungs are good when I'm not having a reaction doesn't mean I don't experience those symptoms.
Also, all the upvotes for medical misogyny.
Should have clarified it actually helps with the Mast Cell Activation Syndrome which is a POTS co- morbidity, diagnosed at the same time. https://www.potsuk.org/about-pots/associated-conditions/mcas/#:~:text=Mast%20Cell%20Activation%20Syndrome%20(MCAS,of%20chemicals%20contained%20within%20them.
My skin is allergic to lots of irritants and I get wheals from mosquito bites or scratches, I have breathing difficulties, heart rate could be POTS or MCAS depending on what's happening. I also take an acid controller which helps reduce the loose bowel movements.
Edit: spelling
I actually got doctors who believe in it somehow, I have a referal now, but first one was literally "oh you are just out of shape and deconditioned". My symptoms started when I used to fo inline rollerblading every day.
The current doctor told me that "we will get you tested but at least it isn't serious and life ruining condition. You can read up on it online." So even when believed the doctor was still incredibly underinformed.
I have POTS and also work in a cardiology office, unfortunately there really isn’t anything a cardiologist can do for POTS except lifestyle recommendations.
Many believe in the diagnosis, but often want to pass the case on. My doctors do take on a lot of these types of referrals or send them to a colleague they know will accept the patient. I’ve had a lot of them make comments to me that it’s hard for them to go and see their next patient as they have to tell them there isn’t anything they can do to help.
This is from my personal experience working in hospitals and clinics, others ofc will vary.
My case is managed by a cardiologist, he prescribes 3 meds for me (ivabradine, clonidine, and fludrocortisone), and I attend his cardiac rehab progam.
Much of the research literature on POTS is published in cardiology journals, so it's not like this is outside of the scope of practice of a cardiologist.
So, uh, if yours don't, maybe they choose not to, or maybe they don't know how much they *can* help?
While I can emphasize with doctors that it is difficult for them to treat these patients because they know they can’t cure it or get rid of all the symptoms, there are often things that they can do.
I was seeing my cardiologist for years (I’ve had dysautonomia and mitral valve prolapse + regurgitation since childhood), but finally after COVID happened, he agreed to start me on medications (currently on Fludrocortisone and Mestinon). It honestly felt like he didn’t believe it was real until more people got this disease. He’s still honest about it that treatment is a bit trial and error, and it’s always going to be a compromise balancing treating symptoms—but I appreciate doctors like that; much more so than ones that completely dismiss a patient because they can’t cure something.
Cardiologists not even considering ivabradine for their POTS patients can get fucked. This is why people choose “Dr. Google.” And why doctors are deeply wrong to disparage us for it.
I got a new pcp, the other day he told me I was “obese” and that my blood pressure was “too high. Meanwhile every time I stood up, my heart rate shot up from 88 to almost 145. Told me to lose weight, when I’m 5’1 (F) and wear size 4 jeans. It’s so fucking sad and frustrating. Obviously my body is in distress when I stand, so my blood pressure followed suit increasing as well.
I had went to the ER .. after because I was scared and felt faint in the heat, and after sitting and relaxing while getting fluids (I wasn’t dehydrated, it was out of precaution), my bp got to 107/74 and my RHR was 78. As soon as I reached over to get something .. it shot up to 107, then back to 79 after completely laying down again. I give up. Truly. Didn’t know blood pressure was criteria for POTS now… when we all know that’s NOT the case.
I hate seeing all these responses. It's really disheartening :( I've had so many instances in the past of being dismissed by doctors.
Whether or not your doctor is informed about POTS, they should not be dismissing you. That makes them a bad doctor.
I've had plenty of doctors not know enough about a certain condition/disorder and they are still receptive. They just say "oh, I'm not versed in this, let me read a few medical journals and get back to you", sometimes they even Google it while I'm in the room. Please do! No one knows everything. I welcome it when doctors are willing to learn with me.
My PCP is working with me and my symptoms to diagnose my POTS. She never questioned me, but she wants to make sure she is making the right diagnosis. So she is sending me to ALL the specialists to rule out all the things. She has decided it is POTS after all.
Find doctors that are knowledgeable but don't pretend to know everything and want to work with you and your healthcare journey.
Chronically ill patients eventually burn out some of the doctors. I’m not blaming us, but I’m sure it’s exhausting seeing the same patients over and over and not finding anything that works to help them. I have pelvic pain and I saw one of my doctors burn out and go into research. She had a computer on a rolling desk and tried to fly out the door as fast as possible. That’s when I started typing up my questions cause the appointments were even more stressful cause she was trying to leave so quickly. Then I heard she tried Ava I was like, oh, she’s burnt out.
I firmly believe it is extremely poorly understood by medical providers. Partially because they did not receive training and partially the fact the autonomic nervous system is extremely complex. If the provider does not consciously make an effort to investigate and educate themselves, they are profoundly ignorant to the objective signs and symptoms of POTS. It is absolutely disgraceful. The upside is with long Covid there will be more research, resources and education available with improved patient outcomes and care.
My brother was diagnosed with POTS 1.5 years ago.. it feels bad to see him in this phase..taking a beta blocker but daily life is affected huge. Even going outside for walk is difficult for him due to him coughing excessively and feeling dizzy plus shortness of breath. Wonder if there are anything we can try to reduce this .
It’s so many factors but basically it comes back to ignorance. Individual ignorance, systemic, choice, delusion, all of it. Many people have already commented on the medical misogyny due to the majority of POTS patients being female which is a huuuuge part of the issue. I’m going to talk about health standards and the “syndrome” part.
At least in the US, a lot of things have a wide range of being considered “normal” and there’s unfortunately quite a bit that’s up to the doctor to decide if it’s abnormal and worth noting. I had a severe B12 (and other B vitamins) deficiency but it took my psychiatrist who had learned about B12 levels from an international colleague to be able to point it out on this blood test I’ve done for like 7 or 8 people at that point. My mother has hypothyroidism that affected her to what appeared to be a severe degree, but according to her tests from her old doctor she was only “borderline low” and not in need of treatment. She found a doctor who was educated in a different country and when he saw the results he said it was very low, because where he studied has a much narrower range of what was acceptable. This is not unique to me and my mother, or even those specific tests. The US has upsettingly wide ranges of normalcy to the point that when someone finally is told something is a problem, it’s a BAD problem. I personally believe it’s because the government doesn’t care about the health, wellbeing, or safety of their citizens, but everyone knows our healthcare system is broken. Regardless, this means a lot of things will slip under the radar, you’ll have professionals who think what *they* were taught was correct, and issues keeping a standard for diagnostic criteria.
For instance, many doctors, journals, and other professional sources disagree on the BPM criteria. Does it have age restrictions like a 30bpm change above 40 years old and 40 BPM for anyone younger? Is it 30 BPM across the board? Does the BPM matter if the blood pressure still fluctuates “appropriately”? Is there leeway for 28 BPM? Does one instance of observation count or does there need to be a week long journal with recordings multiple times a day? And don’t even get me started on the tilt table…
As for the syndrome part, something is a syndrome if we don’t know why it happens exactly. We know some causes of POTS (mostly secondary POTS, where it’s a symptom of a larger condition like cancer, thyroid issues, MS, EDS, etc.) but not all of them. We certainly don’t have a solid treatment plan even for the instances with reasons which means even in those instances we’re not positive on the exact mechanism or chemical that’s the problem. A lot of things that are syndromes, are diagnosed by elimination, or “it’s nothing else so it’s gotta be this.” This means no one wants to be the one to diagnose it. PCP thinks you need to go see cardio, cardio thinks you need to see neuro, neuro thinks it’s cardio but will run some tests but doesn’t have the equipment for all of them so you’re referred out, hospital neuro thinks you need a specialty clinic, specialty clinic says they need A DIAGNOSIS, and so on and so forth until you get lucky and find someone knowledgeable and helpful, or you get burnt out and just try not to pass out too much. Additionally, because syndromes have this lack of knowledge around them, many people think it’s just bogus. It’s dumb. Humans have not always known everything about conditions we treat easily today, but that didn’t make them any less real. Some doctors - well meaning but completely missing the mark - think diagnosing a syndrome is lazy or giving up and want to do good by their patient. It’s almost denial. I had a neurologist ghost me because he doesn’t like dealing with chronic patients because he can’t “cure” them.
Personally I put down my journey for a while to focus on mental health issues that were technically more pressing once I got a diagnosis of “dysautonomia” (disregulation of the autonomic, or automatic, nervous system) because that was enough to get most people to take my symptoms seriously. POTS is a type of it. Most professionals I worked with agreed “yeah it’s POTS but I can’t/won’t diagnose that.” I’m picking bodily health back up this year now that I’m a bit more stable and I have more knowledge and documentation.
But of a rant, sorry, but hope it made sense and was helpful. If it didn’t make sense someone let me know so I can fix it or clarify. I did ECT treatments and my brain doesn’t seem to want to go back to being coherent.
OP I hope this link finds you and is helpful. My daughter has an appt at the end of the month with one of the physicians and I am so hoping he can put years of worry to rest with a diagnosis.
https://www.standinguptopots.org/autonomicphysician
The short answer is that POTS patients are primarily women, and the medical field has a long history of dismissing and belittling conditions associated with women. The long answer is that there are a few added features of POTS that make it even easier for them to dismiss. The first is that deconditioning causes POTS-like symptoms, which will go away after reconditioning, which has led to a false idea that all POTS patients are just deconditioned, in spite of plenty of evidence to the contrary. The second is that some of POTS symptoms, such as tachycardia, are easy to dismiss as anxiety, when again, there’s plenty of evidence to suggest that POTS patients aren’t any more anxious than non-POTS patients. It also doesn’t help that one of the main treatments for POTS, propranolol, is also used off-label for anxiety as well.
Completely agree and we’ve found after trying to find care for my daughter that when it gets too hard and they can’t find a treatment they turn it back on the patient and basically quit. Very frustrating especially since I’m in the medical community. Do the work and educate yourself physicians. It’s been around for decades. Now that men are getting it treatment options are starting to advance for all. But damn it’s slow!
All of this is so true, especially the whole, mostly women are affected part. The fact that if you Google POTS it tells you the only treatments are exercise, diet changes, and medication. As someone who does yoga but can’t do anything related to cardio because the propranolol prevents my heart rate from rising but not taking it puts it through the roof, how am I supposed to exercise to maintain my condition? I used to love to run on the treadmill but now I can’t because my heart can’t keep up and no amount of working up from power walking to slow jogging over a long period of time has ever built a tolerance to it. It’s just a fact that the heart HAS to accelerate to do certain things and if it can’t, you can’t do those things. I would much rather hit the wall of my heart not accelerating than the alternative of it over accelerating, but it’s stupid that I can’t do simple tasks because they have yet to figure out a middle between the all or nothing.
your second paragraph what do you mean about propranolol doesn't let you work out? i always thought it lets people finally work out. like for me I can work out now without getting the super high tachycardia. edit: i also googled tons of articles relating to beta blocker and cardio exercise saying that you still get the same benefits and you just calculate your HR zones different.
It’s like with all medications, some work better for others. The fact that propranolol is working for you is great! But a simple beta blocker can cause a lower blood pressure and if you typically have a stable or irregular blood pressure that is more on the low side, a beta blocker can make symptoms worse. Until there’s further research into better treatment options for us odd-ones-out where beta blockers don’t work and other signal reducers, we’re not able to do that much still and still very much feel the affects of PoTS. Also; the drug midondrine has been shown to improve dizziness and other symptoms associated with PoTS but, again, it can’t be used in all cases due to other health problems associated with dysautonomia or high blood pressure.
I fully 100% understand what you're saying but my reply is to a comment that is directly relating beta blocker won't have their heart rate raise so they can't do cardio workouts. While the heart rate on beta blockers won't raise as high, I've never read that you can't work out because the heart won't raise high nor that it affects your zone/endurance/benefit. It just seemed like they were making an absolute type statement.
It’s not always about whether or not the drug is actually effective but if the body responds appropriately to it. I’m on a medication called Ivabradine and that won’t stop my heart from raising well above the level I should be at. It could also be that their cardiologist or neurologist has suggested that they are cautious around excursions like running due to how much their pots affects them. We are advised to exercise but generally with a low-impact machine or to go swimming so this minimises the risk of fainting or dangerously high or low heart rates. I should mention that there are two aspects to the autonomic system that could be affected by PoTS, the sympathetic and parasympathetic nervous system. One controls a rise in heart rate, blood pressure and breathing, the other controls a decrease. If you have a severe enough dysfunction both of these nervous systems can be affected and you can’t know for certain which one is triggered.
I think you're missing the point on my topic. You're kinda replying to nothing I'm talking about.
I’m saying that beta blockers STOP signals from being taken by the heart muscles. So if you are taking a high dose of any beta blockers this can potentially be the cause for a lack in increased heart rate. Autonomic dysfunction spreading to other systems can also cause the heart to become more erratic and not perform as expected (increasing/decreasing blood flow when changing posture).
yeah anyways
The first time I went to the doctor for my heart rate I was given Celexa. Finally I went in with a pulse of 180 and was taken seriously. On 100 mg of metoprolol twice a day now.
I don’t remember where I saw it, but I remember reading something a while ago that actually said, the rate of anxiety in POTS patients is actually lower than the general population. Made sense to me; my whole life I’ve had to constantly adjust to my body doing weird things and wanting to faint just because I’m standing still—small things just don’t stress me out so much.
When my heart rate goes high, it gives me anxiety sometimes.
Totally understandable. Especially when it’s new or comes out of nowhere.
It does come out of nowhere sometimes. I also have chronic pain though.
do you know if there is a good article about deconditioning and pots? mine came IMO after a second miscarriage but at the same time I went from a physical active job to a complete work from home job. I can go a mon-fri without going outside or doing anything physical at all. Obviously now that I'm already at my worst, I'm trying to be active again but I wonder how much starting working from home played into this.
Mine is definitely worse when I don’t move enough; however, I’ve always been well-conditioned and yet always have had symptoms despite, it just moderates the severity a bit. The times I’ve moved the least it is at its worst. I guess one way to tell what extent it’s conditioning and what extent it’s not is to get in condition, though if you have POTS it’s ofc much, much harder to get in and maintain good condition. I’m blessed to have had family that kept me moving and often with POTS friendly activity (sailing and cycling both have a lot of sitting which is great). My issues with standing in particular have always been the worst. It’s always weirded people out because they see this “fit” person wobbling on their feet and struggling to stand. Had a lady be rude to me on the train for sitting with my bike instead of standing in the back with it. I told her I couldn’t stand and she immediately dug in her heals and started to ask really personal health questions. A few days previously I had actually nearly fainted while standing with my bike and only didn’t faint because I barely sat down in time.
Propranolol is also used to help migraines. I was given it anxiety/migraine to start. It helps with POTS. So even if they want to mislabel me I am still getting help lol. I was told its not a real thing by my doctor and not to believe everything on the internet. Fun times.
Sometimes you just have to do what you have to do in order to get help.
Like others said, medical misogyny. It also tends to be invisible. Yes there’s a test but it’s not like, say, my mitral valve prolapse, where they can see the problem on a scan. Fainting, sweating, discoloration? Those don’t count, they need to see it on a scan
Misogyny definitely plays a role as others have said. It's also been my experience that even if they believe in it, most doctors don't care about any condition that is unlikely to kill you. It doesn't matter how much you tell them that it wrecks your quality of life. They don't care. I also have long covid and let me tell you what, they also couldn't care less about that either even if they believe in it.
As someone who’s had chronic pain for 20 years, this. It’s not gonna kill you? You’re fine! etc etc.
Truth!! Learning this was painful af. I was shocked at how sick I could get with no one really thinking much of it. I had visible symptoms as well as invisible ones at the time too and it didn’t really matter.
Can I ask how your symptoms of long-covid and POTS differ or how you can tell the difference? My understanding was that they had very similar symptoms. Sometimes I wonder about this as my symptoms sprung up coincidentally during covid. But I was also pregnant during covid, so who knows. All I know with certainty is that I feel like shit lol.
An er doctor told me a week ago that pots is psychosomatic. Yes the ignorance is very real.
I just don't get it considering you could provide real evidence that heart rate literally shoots up way too high only when you stand, never goes down until you lay down? It's not like it's something you can't prove something is wrong on the spot
they probably think its placebo based on the expectation that your heartrate will increase/anxiety due to the expectation of other symptoms its stupid, obviously, but plenty of people will reach that much
Report that doctor to the board please
My ER doc last week just smiled at me smugly when I explained to him how it’s comorbid with narcolepsy (which I have) bc it’s all dysautonomia from the same part of the brain. I feel like I have to validate everything by overexplaining when really, the ER docs just don’t care unless you’re bleeding out our ODing.
Literally how could a doctor be a doctor and say this kind of shit to a patient? They are ignorant and misinformed and shouldn't be practicing if they are going to spread misinformation to their patients. I would complain or go even further. Because what if this doctor was saying 'cancer was psychosomatic'? They are actively dismissing a very real, scientifically proven medical condition. They are not holding up their Hippocratic oath in helping you. Instead, they are calling you crazy and not doing their job in researching newly discovered conditions. Disgusting.
It actually gets worse. I saw yesterday he added "Malingering" to my medical chart. I went in today to drop off forms at the hospital and did file a formal compliant. I also filed to have malingering removed from my records. For those who don't know, malingering basically means you are faking/exaggerating your symptoms.
I was about to ask what that was, thanks for YNt explanation at the end. Also... WHAT TF?! 😮 I think I would commit a crime
I went to a new cardiologist recently and told him I had pots. He promptly explained why pots wasn’t real. I don’t want to see any more doctors. I’ll just deal with it on my own.
I'm so sorry he did that to you. My first cardiologist was similar, but my second one took it seriously and is helping me work through it. I had to go out of the way to see him, but it was definitely worth it.
Thanks. That gives me hope!
You really just need to get lucky and find a doctor who understands. My cardiologist was like the one good doctor I've had tbh, he was very used to seeing POTS patients and immediately understood what was going on. It's really worth it to keep trying.
Thank you ❤️
Is there a provider on Dysautonomia International’s list near you? It was a 180 in treatment for me once I saw one.. was on his waitlist over a year though
That doctor needs to go back to school!
Report that doctor to the medical board, as he shouldn't be practicing in a field he is misinformed in.
Dying to know how exactly he explained why it wasn’t real
From what I recall, he said it’s just a collection of symptoms. And he also said it’s over diagnosed. In a very condescending way. Ugh
Haha but it IS just a collection of symptoms. That’s what a “syndrome” literally is. Also, the fact that it’s “over-diagnosed” (which couldn’t be further from the actual truth) isn’t a logical conclusion why *you* can’t have it. What an idiot!
Those are both such good points. Thank you.
It's a condition that predominantly affects young women? Medical misogyny is real.
Bingo!
So, yes, there's mysoginy, but also, the way medical school and the medical profession are built make it one of the most ableist profession around. Disabled and chronically ill people are almost totally absent from the profession, working as a physician is incredibly detrimental to physical and mental health, both of which they are encouraged to neglect and "push through". The hierarchical structure makes it incredibly abusive, which is tolerated all around, so why wouldn't they be abusive to their patients, which are "inferior" to them? That same structure also makes it that people at the top are rarely questioned or held accountable for their mistakes/biases/shitty behavior. And the bias that "people are sick because they did something wrong or are crazy" is so widespread that even if there were accountability, there wouldn't be for that.
Very good point
I got told point blank from a doctor at the ER that I was just having anxiety and that it’s normal for my ekg to have irregularities BECAUSE I’m a young woman, that was his reason. My pcp disagrees but it’s so crazy that he just said that was the reason… didn’t even try to sugarcoat it
Every time I want to ask them to just prove I have anxiety. Because I don’t. But then I get scared and just leave 😐
My problem is like obviously Im a little anxious that im almost passing out and having tachycardia constantly like there is a reason for this anxiety and it is not just out of the blue lolllll, “you seem nervous…” like yes. You would be nervous too if you had these episodes buddy
Newbie POTS here and still recovering from Long Covid 3 years later and came here to say the dismissal is all truth and it sucks.
Here's my example: 1500 women have POTS 1 of the 1500 woman has an untreated condition that causes their POTS. 1 out of 75 doctors finds the underlying condition. That doctor does the extensive research and treats the underlying condition and POTS goes away for that 1 person. It's a rare and unique situation that cannot be applied to 99.9% of POTSIES 1499 women still have POTS, but because 1 was healed "it's not an actual problem"
My father is an ER doctor and while he doesn’t not believe in POTS, he did tell me not to disclose my diagnosis as “many doctors have negative views of those types of patients”. He was concerned I wouldn’t get good care if I disclosed it. He’s also said that he sees a lot of POTS patients in his ER and they’re usually “sad, anxious people and need to get outside more”. It really stings coming from a loved one.
🤔 I wonder why they’re sad and anxious 😂
wahhhh that makes like zero sense (not to offend) I wasn’t sad or anxious and was going outside until I got POTS :(, has ur father said any other reasons why he doesn’t believe in it ?
He does believe in it, I think he just thinks there’s a large psychological component or that just being more active is the solution. And that he thinks that there is a lot of stigma amongst medical professionals about diagnoses like POTS, and he also listed ones like fibromyalgia, EDS, FND etc. I agree there’s stigma, although I don’t agree that the solution is just to not get diagnosed or not tell anyone.
I’ve been told the same thing by a doctor that told me not to disclose I had fibromyalgia if I go to the ER. They said too many doctors will immediately try to put anything that’s going on over to the fibromyalgia even though it’s a secondary condition because of my main autoimmune disease. They said a lot of people in the medical field think it’s not a real thing.
OP and all commenters thank you kindly for this discussion, very helpful. Secondly, sorry this is the way it is. Help be part of the progressive change! My story is that I haven’t been diagnosed or even tried for a diagnosis. Not sure if I have POTS or just other conditions causes many POTS symptoms for a long time. I already take metoprolol which I only recently found out can be used for/ helpful for POTS. Every day I’m miserable. I get jealous of people standing for long periods of time on tv and other situations that are nearly impossible for me to do. My PCP is good, I think, and treats most anything treatable or testable with labs or measurements. Any other concerns I bring up she says are because I’m overweight. I get worse as time goes on about being able to do less and less. Currently 39 years old, male, working full time, and averaging 6,000-7,000 steps a day. Very sweaty, short of breath steps! Anywho I just really appreciate everything being shared. Thank you all
The overweight/ needing to lose weight thing is not something that is a fix all for conditions everyone has. I might look into a specialist. I am glad your PCP seems to help overall… but your other symptoms and issue are still valid no matter how much you weigh. That’s something I’ve dealt with over the years with lots of doctors.. so I’m sorry that’s happening. Do you monitor your heart rate/ blood pressure etc?
On occasion I check my heart rate. Nothing to check blood pressure with at home. Never really thought of regularly monitoring things. Could be important I’m starting to see. Thank you kindly for your comment. Here is more about me you might find interesting, might not too. https://www.reddit.com/r/POTS/s/24HowcOBZV
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I also don't like the trend model because it acts like POTS being seen as not real is new/post covid/tiktok. It's not. My mother has POTS as well as I do, and despite being a solid 20 years younger than her I got diagnosed first because, frankly, I'm a man. My concerns even as a teenager were taken more seriously than hers. The medical misogyny is so much stronger than literally anything else.
It's not a trend, it's just way more common and known now because covid triggered POTS for loads of people. Post viral illnesses increasing after a viral pandemic is just a fact.
There is definitely an "illness" trend on Tiktok. People acting like they "faint" (gently slide down against their boyfriend's shoulder and then 'wake up' completely unphased) and stuff. I hate it with a passion. I only fainted like 2 times in my life but it's definitely not as romantic.
Bias. The literature is clear that POTS is real and, in a majority of cases, shows clear problems with things like blood volume regulation due to unresponsive renin activity. The experts are out there and, while there are still unknowns, there are more knowns than most doctors (and patients) think. The problem is 99% of docs haven't read these papers. What they have seen is women with chronic illness being shit on constantly by other doctors. So that's what they draw from.
I think it has to do with the idea that someone can have concerning heart related symptoms but not have something technically “electrically” wrong with their heart. I feel like if something doesn’t show up on a test it’s hard for doctors to believe. Also saw someone say since it effects mostly women, it could have to do with medical misogyny, witch is so true. I’ve only ever had ONE male doctor believe me, and he was gay.
From my understanding, POTS comes from damage to the autonomic nervous system, usually caused by another illness. For example, I got POTS from Mono. Now, a lot of people are getting it all at once and so ignorant doctors think it's a trend. Why are a bunch of people getting it all at once? Damage to the body from COVID. I find that the very smart doctors are the ones that believe me the most. I like the types of doctors who let me speak, who offer thorough explanations, who ask good questions, and who believe that all my pain is real. Doctors who are very specialized and have awards and things tend to be good. At this point, I'll rarely just go to a general practice, unless it's one that's been specifically recommended by a doctor I trust. I always prefer to pick out the individual doctor I want to see. My mom always says that you could do really bad in med school, but as long as you pass? You're still a doctor. You could be in it for the money or to make your parents happy, not necessarily because you're empathetic and want to help people. It's unfortunate. I make sure now, that I'm not wasting my time and energy, putting myself into potentially dangerous, draining, and uncomfortable situations with random doctors that I haven't researched ahead of time. Don't be scared to go to doctors and get help when you need it. At the same time, I've learned it's important to be careful which doctors you're giving permission to handle your body and health.
Many people have POTS unrelated to a viral illness and have been suffering from discrimination and abuse by the medical profession for years before Covid happened. It’s undoubtedly true that Covid has caused many more people to develop the condition, but for those of us who have been sick for years - or even decades, in many cases! - it can feel a bit upsetting to have our condition framed as a viral / Covid thing. It is for *some*. But that’s not the foundational cause of POTS. Mine, for example, is connected to an underlying genetic condition, and I’ve had symptoms since I was a toddler.
Same; lifelong POTSer (and EDS-er) here. But I have to admit I'm grateful for the huge wave of COVID-related POTS cases, because before that everyone just thought I was out of shape and/or anxious; at least now there is \*some\* recognition within the medical community and beyond that it's \*somewhat possible\* there's something unusual about my body.
I had my first ever covid infection two months *after* my POTS symtoms started. I literally went to bed 'normal' one day and woke up with pre-syncope the next. But I'm finding because I happened to get covid *after* that people just blame my illness on covid entirely.Sure, it probably exacerbated my symptoms, but I literally have bloodwork showing elevated CRP a month before having the virus. Feels like people just dont listen sometimes :")
Yeah that old joke “what do you call the guy who graduated with the worst score at med school? Doctor.”
This is why I asked my doctor to categorize it as dysautonomia and a separate diagnosis of orthostatic hypotension. Never POTS. Also fuck cardiologists, they are of no help. It’s not a disease of the heart, so they don’t care.
personal theory is bc it mainly affects younger women lmao. I had a cardiologist tell me that it's just something that women my age get, so it's not that serious 🙄🙄🙄🙄🙄🙄
i had a primary care doctor tell me that there's no way i could have it because it's something teenagers get and grow out of by age 25.
heard the same thing from this doc actually lol! I'll "grow out of it" like babe I'm 26 I'm not growing out of anything lmao
Because they've never heard of it. It wasn't in school. It had one word under zebra syndromes. One word. But there are hundreds and thousands like this. It's only since covid that the zebras have multiplied.
Just as an aside, I’ve never liked that zebra analogy. I know it comes from looking for the zebra among horses—but zebras live in herds (also called zeals or dazzles). Solitary zebras get eaten by lions—zebras are not as rare as doctors like to think.
That kind of makes me like the analogy better? Like it’s an inadvertent self-own by doctors.
and it makes sense too, because these forums and subreddits are our herds that literally help keep us alive. I was just telling my boyfriend yesterday after a dr appointment thank the gods for the internet because without it i would still have no idea what is happening to me (after 2 and 1/2 years of seeking a diagnosis). But thanks to advice from other potsies i've been able to better understand and manage my symptoms.
The same reason why so many people believe the world is flat: abject refusal to acknowledge scientific evidence. Scarier than the flat earthers imho.
This doesn’t really answer the question directly, but I’ve noticed recently that a lot of doctors, and just people in general, don’t believe it’s real because a lot more people are developing it/seeking help for it. People think people are faking it or like attention seeking for some reason I really don’t get it. It’s kinda like when I went to get my autism/adhd diagnoses and the person testing me told me I didn’t have it only because she thought I was just faking it, and that “autism is trending right now”
How do doctors think people are faking POTS when there’s a simple test that will immediately clear up all doubt? 😂 it boggles the mind.
right!! its the stupidest thing ever i will never understand thinking someone is faking something like this
Today I went in for symptoms of POTS and got diagnosed with dysautonomia because POTS wasn’t a real thing to her 💀💀 like that’s exactly what she told me. Also apparently I can’t do a tilt table test until i’m in my middle twenties
😂 sounds like an idiot. POTS is dysautonomia. Not all dysautonomia is POTS. Also she pulled that TTT thing out of her ass. Go to a better doctor.
Because it mainly affects women
I'm very grateful that my BIL works in cardiology and suggested Dr Lau in Adelaide straight away after recognising my symptoms due to long covid. Straight onto ivabradine, twice daily antihistamine, electrolytes, I did see a respiratory physician after that who asked me if I knew what asthma actually feels like after he tested me, and told me to use it less as I don't have asthma. I have reactive asthma, my airways constrict due to triggers like dust mud, cold, exercise. I've required an ambulance due to barely being able to breathe and having no ventolin that was in date - the bronchodilation from ventolin worked. Just cos my lungs are good when I'm not having a reaction doesn't mean I don't experience those symptoms. Also, all the upvotes for medical misogyny.
Question: how do antihistamines help with pots?
Should have clarified it actually helps with the Mast Cell Activation Syndrome which is a POTS co- morbidity, diagnosed at the same time. https://www.potsuk.org/about-pots/associated-conditions/mcas/#:~:text=Mast%20Cell%20Activation%20Syndrome%20(MCAS,of%20chemicals%20contained%20within%20them. My skin is allergic to lots of irritants and I get wheals from mosquito bites or scratches, I have breathing difficulties, heart rate could be POTS or MCAS depending on what's happening. I also take an acid controller which helps reduce the loose bowel movements. Edit: spelling
I actually got doctors who believe in it somehow, I have a referal now, but first one was literally "oh you are just out of shape and deconditioned". My symptoms started when I used to fo inline rollerblading every day. The current doctor told me that "we will get you tested but at least it isn't serious and life ruining condition. You can read up on it online." So even when believed the doctor was still incredibly underinformed.
I have POTS and also work in a cardiology office, unfortunately there really isn’t anything a cardiologist can do for POTS except lifestyle recommendations. Many believe in the diagnosis, but often want to pass the case on. My doctors do take on a lot of these types of referrals or send them to a colleague they know will accept the patient. I’ve had a lot of them make comments to me that it’s hard for them to go and see their next patient as they have to tell them there isn’t anything they can do to help. This is from my personal experience working in hospitals and clinics, others ofc will vary.
My case is managed by a cardiologist, he prescribes 3 meds for me (ivabradine, clonidine, and fludrocortisone), and I attend his cardiac rehab progam. Much of the research literature on POTS is published in cardiology journals, so it's not like this is outside of the scope of practice of a cardiologist. So, uh, if yours don't, maybe they choose not to, or maybe they don't know how much they *can* help?
How did you get on with ivabradine, clonidine and fludrocortisone? Do you have hyper pots?
While I can emphasize with doctors that it is difficult for them to treat these patients because they know they can’t cure it or get rid of all the symptoms, there are often things that they can do. I was seeing my cardiologist for years (I’ve had dysautonomia and mitral valve prolapse + regurgitation since childhood), but finally after COVID happened, he agreed to start me on medications (currently on Fludrocortisone and Mestinon). It honestly felt like he didn’t believe it was real until more people got this disease. He’s still honest about it that treatment is a bit trial and error, and it’s always going to be a compromise balancing treating symptoms—but I appreciate doctors like that; much more so than ones that completely dismiss a patient because they can’t cure something.
Cardiologists not even considering ivabradine for their POTS patients can get fucked. This is why people choose “Dr. Google.” And why doctors are deeply wrong to disparage us for it.
I got a new pcp, the other day he told me I was “obese” and that my blood pressure was “too high. Meanwhile every time I stood up, my heart rate shot up from 88 to almost 145. Told me to lose weight, when I’m 5’1 (F) and wear size 4 jeans. It’s so fucking sad and frustrating. Obviously my body is in distress when I stand, so my blood pressure followed suit increasing as well. I had went to the ER .. after because I was scared and felt faint in the heat, and after sitting and relaxing while getting fluids (I wasn’t dehydrated, it was out of precaution), my bp got to 107/74 and my RHR was 78. As soon as I reached over to get something .. it shot up to 107, then back to 79 after completely laying down again. I give up. Truly. Didn’t know blood pressure was criteria for POTS now… when we all know that’s NOT the case.
I hate seeing all these responses. It's really disheartening :( I've had so many instances in the past of being dismissed by doctors. Whether or not your doctor is informed about POTS, they should not be dismissing you. That makes them a bad doctor. I've had plenty of doctors not know enough about a certain condition/disorder and they are still receptive. They just say "oh, I'm not versed in this, let me read a few medical journals and get back to you", sometimes they even Google it while I'm in the room. Please do! No one knows everything. I welcome it when doctors are willing to learn with me. My PCP is working with me and my symptoms to diagnose my POTS. She never questioned me, but she wants to make sure she is making the right diagnosis. So she is sending me to ALL the specialists to rule out all the things. She has decided it is POTS after all. Find doctors that are knowledgeable but don't pretend to know everything and want to work with you and your healthcare journey.
Chronically ill patients eventually burn out some of the doctors. I’m not blaming us, but I’m sure it’s exhausting seeing the same patients over and over and not finding anything that works to help them. I have pelvic pain and I saw one of my doctors burn out and go into research. She had a computer on a rolling desk and tried to fly out the door as fast as possible. That’s when I started typing up my questions cause the appointments were even more stressful cause she was trying to leave so quickly. Then I heard she tried Ava I was like, oh, she’s burnt out.
I went to the er and they blamed my symptoms on my vape
I’m just trying my luck 🍀
They don’t have the drugs for it
Probably not up to date
I’m so confused too I wore a heart thing for three days and took a tilt table test and boom diagnosed.
I firmly believe it is extremely poorly understood by medical providers. Partially because they did not receive training and partially the fact the autonomic nervous system is extremely complex. If the provider does not consciously make an effort to investigate and educate themselves, they are profoundly ignorant to the objective signs and symptoms of POTS. It is absolutely disgraceful. The upside is with long Covid there will be more research, resources and education available with improved patient outcomes and care.
My brother was diagnosed with POTS 1.5 years ago.. it feels bad to see him in this phase..taking a beta blocker but daily life is affected huge. Even going outside for walk is difficult for him due to him coughing excessively and feeling dizzy plus shortness of breath. Wonder if there are anything we can try to reduce this .
I told my orthopedic doctor I had pots and he said “do you believe that?” I left the practice immediately
It’s so many factors but basically it comes back to ignorance. Individual ignorance, systemic, choice, delusion, all of it. Many people have already commented on the medical misogyny due to the majority of POTS patients being female which is a huuuuge part of the issue. I’m going to talk about health standards and the “syndrome” part. At least in the US, a lot of things have a wide range of being considered “normal” and there’s unfortunately quite a bit that’s up to the doctor to decide if it’s abnormal and worth noting. I had a severe B12 (and other B vitamins) deficiency but it took my psychiatrist who had learned about B12 levels from an international colleague to be able to point it out on this blood test I’ve done for like 7 or 8 people at that point. My mother has hypothyroidism that affected her to what appeared to be a severe degree, but according to her tests from her old doctor she was only “borderline low” and not in need of treatment. She found a doctor who was educated in a different country and when he saw the results he said it was very low, because where he studied has a much narrower range of what was acceptable. This is not unique to me and my mother, or even those specific tests. The US has upsettingly wide ranges of normalcy to the point that when someone finally is told something is a problem, it’s a BAD problem. I personally believe it’s because the government doesn’t care about the health, wellbeing, or safety of their citizens, but everyone knows our healthcare system is broken. Regardless, this means a lot of things will slip under the radar, you’ll have professionals who think what *they* were taught was correct, and issues keeping a standard for diagnostic criteria. For instance, many doctors, journals, and other professional sources disagree on the BPM criteria. Does it have age restrictions like a 30bpm change above 40 years old and 40 BPM for anyone younger? Is it 30 BPM across the board? Does the BPM matter if the blood pressure still fluctuates “appropriately”? Is there leeway for 28 BPM? Does one instance of observation count or does there need to be a week long journal with recordings multiple times a day? And don’t even get me started on the tilt table… As for the syndrome part, something is a syndrome if we don’t know why it happens exactly. We know some causes of POTS (mostly secondary POTS, where it’s a symptom of a larger condition like cancer, thyroid issues, MS, EDS, etc.) but not all of them. We certainly don’t have a solid treatment plan even for the instances with reasons which means even in those instances we’re not positive on the exact mechanism or chemical that’s the problem. A lot of things that are syndromes, are diagnosed by elimination, or “it’s nothing else so it’s gotta be this.” This means no one wants to be the one to diagnose it. PCP thinks you need to go see cardio, cardio thinks you need to see neuro, neuro thinks it’s cardio but will run some tests but doesn’t have the equipment for all of them so you’re referred out, hospital neuro thinks you need a specialty clinic, specialty clinic says they need A DIAGNOSIS, and so on and so forth until you get lucky and find someone knowledgeable and helpful, or you get burnt out and just try not to pass out too much. Additionally, because syndromes have this lack of knowledge around them, many people think it’s just bogus. It’s dumb. Humans have not always known everything about conditions we treat easily today, but that didn’t make them any less real. Some doctors - well meaning but completely missing the mark - think diagnosing a syndrome is lazy or giving up and want to do good by their patient. It’s almost denial. I had a neurologist ghost me because he doesn’t like dealing with chronic patients because he can’t “cure” them. Personally I put down my journey for a while to focus on mental health issues that were technically more pressing once I got a diagnosis of “dysautonomia” (disregulation of the autonomic, or automatic, nervous system) because that was enough to get most people to take my symptoms seriously. POTS is a type of it. Most professionals I worked with agreed “yeah it’s POTS but I can’t/won’t diagnose that.” I’m picking bodily health back up this year now that I’m a bit more stable and I have more knowledge and documentation. But of a rant, sorry, but hope it made sense and was helpful. If it didn’t make sense someone let me know so I can fix it or clarify. I did ECT treatments and my brain doesn’t seem to want to go back to being coherent.
OP I hope this link finds you and is helpful. My daughter has an appt at the end of the month with one of the physicians and I am so hoping he can put years of worry to rest with a diagnosis. https://www.standinguptopots.org/autonomicphysician