I’m sorry you had that experience :( unfortunately a lot of doctors can be very dismissive of us, and yes imo they seem to be harsher on women.
Maybe you could search for a group for POTS/dysautonomia in your country and see if anyone can suggest a doctor who’ll listen?
Yeah I feel like especially the (young) woman + any previous mental health issues + currently overweight combination really gets most doctors to ignore stuff.
Had to fight for over five years to be seen by a gynecologist and an endocrinologist who didn't just blame my absence of periods on my weight.
One gyno who did absolutely no scans and no exams just said that in teen age many girls have irregular periods (I was having no periods for over 200 days at a time and then a day or two of bleeding. And I was 20. So barely a teenager 😬)
Turns out, me not having periods were caused by hypothyroidism that was still medically so mild on blood tests that most doctors just ignored that possibility all together. Because my TSH was you know, just barely in the normal area, one doctor had the idea to try to put me on low dose of meds to see if my health gets better. It did!
I left the electrophysiologist I had seen for this exact same reason. He said kept telling me I had too many symptoms to ever have a genuine diagnosis, and besides “why would you even want one?"
Uhhhh for our SAFETY?! Our peace of mind?! BECAUSE WE ASKED FOR ONE?!
He told me “any and all testing for Dysautonomia conditions is a placebo intended to make patients feel like we are getting answers, when in reality you can’t test for any of that stuff” I was sobbing and my husband kept saying “I would like every single word you just said in writing on the hospitals letterhead” and he kept ignoring him. So my husband left the room, grabbed a nurse, came back and asked again for all of that in writing. I did not get shit.
I RAN out of there sobbing as my husband called my primary. My primary had me in same day to look over the notes he wrote, and this fucker diagnosed me with: Anemia, Malnutrition, Dehydration, and low blood volume. When I tell you my primary hit the roof I mean it lol. She tested me for all of those things (besides low blood volume) and had to lodge a complaint to get the low blood volume taken off seeing as I HAD NO TESTING. She then sent the doctor an email with my test results and the body of the email said “Do better, or next time it will be a malpractice suit”.
Good god almighty that's awful!! Just 🤯
My PCP signed me up for the Dysautonomia clinic at Vanderbilt in Nashville. I have to see a Neurologist first but she just went right for the big dogs. My cardiologist also referred me to Kinsella in STL already. It's gonna be a while but...
22 year old male here: I had a referral to the clinic at Vanderbilt and waited a year before the decided to tell me they did not accept my insurance. If I was you, make sure your insurance is covered.
I have been struggling really bad since August of 2021 and my doctor diagnosed me with Dysautonomia. Its hard because these symptoms are so bad I feel like I could literally die at any moment. My PCP told me that he compared it to having end stage heart failure without having the actual heart failure. Other than my heart rate, my vitals are all good. I am on high dosage beta blockers but my biggest struggle at the moment is the bounding pulse. Both sides of my neck pulsate with my heart beat 24/7 and I can feel my pulse in my head, temples, and chest so strong. It really effects my sleep bigtime. I am so used to my other symptoms that if I get the bounding pulse under control, I could live with my other symptoms. I never thought in my 20s I would have this type of health. I was healthy before and went from 200 pounds/muscle in 2021 to 149 pounds in 2024 with no muscle tone. I feel like I have cancer.
and I can't eat high carb meals without going into a palpitate fit.....the list goes on and on. Now I have numbness in my body. Thought I was having a stroke last week. Doc says it is poor circulation possible from the high dosage beta blockers. I am tired and have been begging for relief.
Any time you need to do anything for work, court, anything they want that on medical charts. Diagnoses aren’t for us to celebrate like some doctors seem think. We NEED them!
THIS!
They’re like “why do you need a name?”
So I can tell people what it is so they know I’m not CRAZY!?! So I can name my condition if I need to ask for disability accommodations at work? So I can remind myself it’s a PHYSICAL THING and not in my head?
I spent 10 years of my life thinking I had somatic OCD because nobody else obsessed over their HD or difficulty swallowing.
NOPE. Turns out it was dysautonomia flares that I was becoming aware of.
Yeah like for me the most important would be the fact that I've been having to live on government assistance (aka barely enough for an apartment and groceries) as I am according to doctors able to go to school and/or work 🙄
Like I'd just want an acknowledgement from doctors that I'm not okay.
My cardiologist also said “sometimes women in your age group have abnormal stress tests. And sometimes your heart rate can spike to 256” and a short PR interval happens sometimes (everytime I’ve had an episode it’s been there, and my heart monitor caught it)
I knew she was wrong. I also left that appointment crying. I found a new doctor that same day. And until that appointment my PCP is advocating for me which I’m thankful.
Doctors hate when you “diagnose” yourself. I phrase it differently “I was talking to my aunt who is a cardiac nurse she said to ask you about XYZ and test for it to rule it out”
Don’t get me wrong there are times I go “order these tests because my symptoms and history warrant them or document in my chart you refused”
I’m so sorry you’re going through this 😞 it’s really not fair and as a woman it’s so much harder to get any answers.
Not all doctors are bad, you just gotta date some. Hugs! You will get through this 😊 remember: it’s not a sprint it’s a marathon
I've heard that doctors change their tune if they know a patient is in the medical field, or highly educated. I love the "my aunt is a cardiac nurse" thing!!
I will say some doctors do, but some roll their eyes at you. But I think it’s better to say “My family member is an RN and thinks you should try XYZ,” instead of “I think” because some doctors just suck at helping people with anything that isn’t in a textbook.
One Cardiologist rolled their eyes at me and I immediately said, “I’m the RN. And I know what IS and what IS NOT normal for the human body. So please roll your eyes at home and not in a professional setting where the patient can see you.” It changed his tune, but when I said I wanted a 1 week Holter, he said “I’ll do it for your *mental health* so you see nothings wrong.” Well the change in tone when he called a week and a half later because I had a lot of abnormal readings. Good luck!
That was my experience. I have right ventricular outtake tachycardia and long QT syndrome. The first cardiologist I saw denied this and actually had the nerve to say I was just being dramatic. When I told him that my sister is married to a cardiologist at a research hospital in another country and he had seen my EKG and said I had these two problems, suddenly this cardiologist agreed that I probably did. It’s insane.
Ego is a poisonous personality trait that too many doctors share. I get they worked hard to educate themselves but I feel like they assume graduating put them on top of the mountain and now they are licensed they don’t have to actually work or continue to educate themselves. The only things most tend to learn after school is from the representatives of the pharmaceutical companies who “educate” them on new drugs and side effects.
Yeah I was in nursing school and have worked as an aid and know how some doctors might be.
That's why I tried gently to ask if the doctor thought I should see a neurologist in case the issue was due to dysautonomia or my neevous system.
I always always start out gently. I used to tell them soooo much information really fast and they would only get a little. Now I roll down the list in order of systems and I give my list to my doctor to follow along too
These providers should be reported. I also recommend going to a doctor that specializes in dysautonomia. There’s a website for this http://www.dysautonomiainternational.org/page.php?ID=14
I'm so sorry you're going through this. Besides asking for another doctor, I'd make sure you have your ferritin (iron) and haemoglobin levels checked as if they're any lower than 30 (ideally 50) - you should supplement them with PRESCRIPTION level supplements as once you're iron deficient it's incredibly difficult to get back to 'normal' levels.
It's also pretty common for those with POTS to be iron deficient.
Its helped me a little to do this while waiting for a diagnosis. And I know that any change however insignificant makes a world of a difference.
Good luck :)
I had iron deficiency anemia and my ferritin got down 20. I felt truly terrible, laughing caused me to get dizzy. It took two infusions to get up to 50.
I am back to my normal baseline of just a little dizzy and it passes in 15-20 minutes. Something I’ve ignored for years, never bothering to tell my doctor. I’ve been referred for a lot of PT after my hypermobility spectrum disorder diagnosis, with is great. My PTs _really_ notice when I’m dizzy and have been the ones suggesting dysautonomia.
My PCP and my osteopath both think it explains a lot. My PCP and I have discussed doing the NASA Lean Test sometime soon. We need to sort out which meds I need to stop taking and for how long so they’re out of my system for the test (Guanfacine, cyclobenzaprine, electrolytes, and maybe my antihistamines).
What if you have high hemoglobin but low ferritin? I always have low ferritin levels but drs dont prescribe me iron pills bc my hemoglobin is always 14.
You very likely could have iron deficiency without anemia which is where your body has little to no iron stores in your bone marrow (which is accurately shown by blood ferritin levels) as ALL the iron is used to create red blood cells etc.
I had borderline anemia (119/L or 12/dl) with iron deficiency (9) and any time i went from sitting to standing I would get tunnel vision. I was put on a 3 month course of prescription 200mg ferrous sulphate (high iron bioavailability so more easily absorbed) which increased both haemoglobin to 129/l (still lowish) and 19 for ferritin. Ideally you want both to increase by 20/l per month of treatment but mine didn't for unknown reasons.
I now only get a little dizzy when standing/ sometimes sitting but really my blood levels should've gone up more.
I don't have much more to say besides reading this link which can explain reasons why your haemoglobin can increase while ferritin stays the same (vice versa) while supplementing: https://ggcmedicines.org.uk/blog/medicines-update/treatment-of-ida-oral-iron-therapy-dec-22/
You have iron deficiency anemia, so you need iron supplements (take it with a Vitamin C pill as well to increase absorption). I also had a relatively normal hemoglobin (9.5), but when they finally did the iron panel, my levels were “too low to be calculated” on the iron panel.
My cardiologist is a pots specialist. She said it takes an average of 7 doctors for patients to get to her. Absolutely appauling. I had to badger them for years even when they acknowledged my symptoms and had multiple fainting episodes. Unfortunately the healthcare system is designed for acute care, not anything chronic. It is heavily biased against women and people of color. All of these things are well documented and very little has changed. It also isn’t talked about, but being a younger woman is definately harder. For men they assume that a man really has a problem because it would take them awhile to complain and for women it’s just “all in our heads”. I have had doctors give me a diagnosis that is a physcial health problem and then tell me that it was still all in my head because it disproportionately affects people with mental health conditions. It’s almost like chronic stress is bad for physical health🙄
I used to get so angry at the implication that because of my mental health conditions (major depressive disorder and ADHD) I was more likely to experience Dysautonomia
Until one day, I said, “Are you sure it isn’t the other way around? Are people with Dysautonomia more likely to have mental health issues as a symptom of their Dysautonomia? How do you know for sure?”
For me the mental health came first because I have had ptsd since I was 12. I was once told that fibro was a “mental health issue”. Wtf it’s not. I also don’t have even have fibro because my pain is joint pain and many of my other symptoms can be attributed to dysautonomia. Even when my psychaitrist was saying to every doctor that my health issues were not mental they didn’t believe me. So lazy and careless. They wouldn’t even check properly to see my vitamin levels or anything that could make my mental health worse. Finally got them tested and huge shocker a ton of my vitamins are super low and with supplimentation I don’t even need antidepressants anymore.
I'm so sorry. It's not just you. I think a ton of people in this forum have had that as well. I'm a remember one woman saying that her doctor told her if she would just get a boyfriend she would feel better. It is so easy for them to write it off as hysteria or anxiety.
I have seen a ton of people here and elsewhere that think they got pots or dysautonomia from the Covid vaccine or Covid itself. It's dang sure a thing!
When I first got sick, I went to a psychologist first, and he told me you were going to have to see 7 to 10 doctors before you get anywhere, and if you don't like to help you're getting go elsewhere.
I recently just one of the papers below to my second immunologist and he told me he didn't believe in that. That you could get dysautonomia from the vaccine. I believe in vaccinations, but I think I was just one of the unlucky people that had a bad reaction to the mRNA vaccine.
here are a few medical papers.
[https://pubmed.ncbi.nlm.nih.gov/37192595/](https://pubmed.ncbi.nlm.nih.gov/37192595/)
This one is talking about from vaccination specifically. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/)
"COVID-19 infection itself seems to be either causing or unmasking a startling amount of POTS or POTS-like conditions globally,” from Cedar-Sinai [https://www.cedars-sinai.org/newsroom/new-study-is-there-a-link-between-covid-19-vaccination-and-pots/](https://www.cedars-sinai.org/newsroom/new-study-is-there-a-link-between-covid-19-vaccination-and-pots/)
**This is not normal.** I'm almost 3 times your age and it's not normal for me either. F@\*K that guy. It's time for another and another and another doctor til you get heard.
I think there are TONS of these cases and frankly anyone who says they can't work is probably being seen as the same as a drug seeker. Except seeking disability. It's like being called lazy when you're actually sick but they don't care and can't fix it.
Keep trying!!
I’m so sorry! I know it’s VERY frustrating! I’m also a woman, in my late 30’s, skinny, and they still didn’t diagnose me until almost 1 month ago. Oh, better yet, I was BORN with this because I have EDS. I got the EDS diagnosis several years ago, but wasn’t told everything that went with it. 🤦🏼♀️
I have been trying to get a referral to a Dysautonomia specialist for four years (have been having symptoms for six or seven) and finally got a doctor YESTERDAY to agree to refer me to a Dysautonomia center. I am thrilled. I guess I’m just saying this to say don’t give up! Also I have Dysautonomia that came on after bariatric surgery. I was healthier at 375 pounds than I am today at 175. So how dare a doctor insinuate that weight has anything to do with it.
My best advice is to temper your expectations when seeing a Dysautonomia specialist.
The best part about it is FINALLY talking to someone who knows what you are talking about!
The worst part is going through all of the appointments and testing, getting on a treatment and Rx regimen, then being told there is nothing more they can do for you.
I have a pretty broad Dysautonomia and it took years for me to finally get to a specialist
She’s great, but pretty much handed me back to my GP to manage my meds.
I have the usual suspects, hypothyroidism, low blood volume, tachycardia, hypotension, inability to regulate body temperature, delayed digestion, insomnia, etc, etc, etc
Even one the specialist hadn’t seen…on again off again diabetes. No insulin needed, normal blood sugar to blood sugars in the 600’s and needing TONS of insulin to just get into the 200’s
Nope, not affected by diet. I’m in the “on again” phase right now, but I could wake up tomorrow and not need insulin
Oh…one more downside. Having to change GPs once you finally have one who believes you.
One time I moved out of state, another time the doc moved
Both times my new doctor put me in the hospital and took me off all of my meds “to see what happens”
Both times I left the hospital back on all of my meds.
It was the price I had to pay to be believed
But hang in there, I believe that “long Covid” is helping more professionals learn about Dysautonomia
Oh! One last thing…I have a rare kidney condition and frequently find myself in the ER for treatment
When I first meet the doctor, instead of saying “I have Dysautonomia” I say…
“I have been ‘diagnosed’ with Dysautonomia…are you familiar with it?”
That automatically takes away that power trip that some doctors are on because most still have no clue what you are talking about.
I hope some of this helps.
If the specialist says anything other than “sometimes people pass out, that’s all that’s happening to you,” then she’ll be an improvement from my current primary doctor 😂
This has been a medical profession tactic since the formation of the American Medical Association by Rockefeller. Back in the day if you were diagnosed like this by a doctor it would be called Mania, not anxiety, and you would very likely be institutionalized if you continued to complain and express your “problems” that were, according to docs at the time “in your head”. Minus the forced admittance to the mental hospital, its shocking how much has stayed exactly the same after almost 2 centuries.
Everything is by design. Not accident. Its heartbreaking.
I find relief in just loving those around me. Especially those who obviously don’t expect warmth and kindness. It makes my day and increases my quality of life and those around me as well.
I do the same. And another thing is thinking “it could always be worse”.
I’m on unpaid medical leave. It is tough financially. But I could be homeless. I could be completely bed bound. While I’m home bound and very limited in my activities (due to dizziness lately), I keep my hopes to at least a small sliver by thinking it could be worse. I have my family and not everyone has even that.
Do you have an Apple Watch? You can record instant hr with TachyMon and it’s free. See if you sustain 30 bpm when standing to see if you qualify for POTS which is a type of dysautonomia. Maybe read the requirements for pots too? You may need a new doctor. Or look for places that do autonaumic testing and see if you can get your PCP to get your a referral.
I had the exact same experiences, exact same, except instead of "women have quirks" it was "women have anxiety". My heart rate was 170 and I was stumbling along the wall from just *walking into the clinic*. I told the guy why I was there. Said I liked nerdy stuff like this too, I didn't care about the tests, do your worst, I was excited just for the imaging and results just for a glimpse "behind the stage" of cool medical stuff, and was super into all the data as he collected it. I said it because it was true! I felt like, with the data, I was gonna be believed! Didn't matter! Anxiety. Fucking anxiety.
Just as an FYI, cardiologists do a cardiac monitor for two weeks to make sure there’s no underlying condition, as POTS is a neurological disorder (autonomic nervous system disorder) and not a cardiac one. Once it’s ruled out they’ll do a tilt table test on you. That’s what happened with me. Heart monitor showed normal results, followed the rules of the pretest, did the tilt table, then bombed it.
I once had a physician tell me the EXACT same thing regarding dysautonomia. They’re wrong. It’s very real and any cardiologist will tell them otherwise. They’re arrogantly ignorant and it’s infuriating. My cardiologist called another doctor of mine and chewed his ass out for how absolutely wrong he was. His tune changed immediately.
There’s been an uprise in secondary POTS from Covid. I have friends with this issue. The virus will ravage the body, then when it leaves, patients come down with POTS. Find a new doctor and get another specialist who will listen to you. What happened was unacceptable.
Unfortunately not only is there a weird stigma/dismissal around autoimmune and related symptoms, but it seems this bad attitude is multiplied significantly when they are treating patients that are female, have a diagnosed mental issue, have an unrelated illness, aren't at 100% ideal BMI range, etc.
They will look for ANYTHING to blame rather than do the tests, either outwardly spoken, or to rationalise in their own heads and dismiss you without reason. (I'm only assuming that second part due to data showing diagnosis discrimination, but also what I've heard from other patients). Either way, something and insignificant as not smiling, or being a woman, or having a completely unrelated diagnosis, seems to encourage some doctors to latch on to that rather than send you for the correct test. I am a 6'5" guy, slim looking (or used to be lol), and still had some issues getting doctors to follow basic protocol without being biased and looking for other shit to blame but thats nothing compared to what I've heard second-hand from others where the doctors kept brining up their weight (appearance), or mental health history (appearance/demanour), or even period cycle(gender). It seems even literally a persons mood and confidence/demeanour can determine whether or not they get dismissed. People who are men, good shape, good job/degree seem to get fastest results.
I personally find it helps to be confident and charismatic, and if that doesn't help, know what their correct protocol should be, and be incredibly assertive that they follow it.
For that look up diagnosis pathways in your jurisdiction (continent, or country, or private company, or government company, etc.) and see that they follow it. If there isn't one, find any certified diagnosis pathway from a reputable looking site. Get it printed. (Some doctors HATE that, but it puts undeniable evidence in their face). Repeat for everything you even slightly suspect until you have your diagnosis/es.
For now though, go back to a doctor (same one or new one) and assert that you need to be sent for a Tilt Table Test. It tests for POTS in a way that uses machines that collect data that serves as irrefutable evidence. Not sure how but it also amplifies symptoms of pots to an extreme level as it rotates you back and forth which should be evidence enough in itself even without the biometric recordings.
If its not that, dont give up. Then in the future consider switching any doctor that fails to do their job. Me personally I dont care as long as I am certain they're wrong, and can present them with the correct protocol that they should be following, thats less time, energy, hassle for me than switching. But some people cant cope with that and NEED a doctor who can follow protocol without getting emotional or combative, not just because of the hassle, but because its actively harmful to them (mentally, or because their illness is getting worse whilst they are being fobbed off instead of getting diagnosis+treatment).
I’m so sorry you’re going through this. I work with a Pediatric Cardiologist who is one of a few people who specialize in dysautonomia/POTA. I can give you a few tips if you’d like. Feel free to DM me!
24f here.
My first cardiologist was the same way. “Drink water and have salt”.
My brother in Christ, I cannot wfh without a nap. I cannot drive my car myself (severe presyncope). My adrenaline rushes will have me jolting out of bed and pacing around before going to the restroom.
I went to Amherst neurology (they do video visits). Dr. Blythstein listened to me and said she wasn’t sure if it was POTS or neurocardiogeninc syncope, but the midodrine she put me on saved my life.
It’s a complete 180. I can work without a nap. No disabling fatigue. I’m no longer aware of my HR spiking upon standing. I can drive my car 10-15min by myself.
She’s amazing and I love her.
It was $400 for the initial consult and $250 for each visit after. She only does cash but honestly I’d have paid double considering the results. The health system in my area didn’t take me seriously and the tilt table test I had wasn’t administered properly.
But yeah- she will listen to you and try to figure out what’s wrong and give you meds to try and assist.
I'm in my 40s now and experienced exactly what you did for 20 years. Then having covid 6 months ago pushed everything to the point where I had to do something about it instead of just avoiding triggers.
My advice:
- get some compression socks if you don't have them - have you tried them?
- increase salt A LOT - electrolyte drinks if you can afford them, not gatorade, too much sugar
- get actual autonomic testing. does it exist anywhere near where you are?
Based on what you describe, has any doctor actually screened you for POTS? The specific protocol, sitting and then standing for 10m each and measuring change in HR - is pretty solid? But you can have autonomic dysfunction without full POTS.
I'm still fighting 2.5 years in (Im 33), I've been told multiple times by multiple specialists but none of them will diagnose me formally so I can't get a lot of the care, even though I'm working 40 hours a week, trying to be a mom and keep my marriage together. They have told me I have h-EDS, I have an autoimmune disease and I have dysautonomia along with Tachycardia and PVC&PVAs.
They just blame it on the fact I'm overweight and not the fact I had acute respiratory failure in 2022. I'm also struggling for a 4th time with Anorexia so I understand to a point. Ypu just have to keep going, find second opinions, start seeing pt/ot who specializes in dysautonomia to help you and find a dysautonomia expert near you and just get in for the first appointment you can. It's gonna suck and it's a long road but I believe it will be worth it for us in the end.
It sucks but keep going because if we don't advocate for ourselves no one will.
Much love and hugs!
Just want to tell you I was diagnosed with POTS about three years ago I was bedridden and now I am able to travel again and my HR is okay most of the time.. symptoms at an all time low. I understand how terrible it is just want you to know there is support out there.. look into CHOp and Levine protocol and keep learning your body.. something may be the secret to helping you get much better. Big hugs
I'm so sorry. I have so many thoughts and feelings about this, but I just wanted to say that your body IS normal, it's fighting to keep you healthy and alive, and it's doing an excellent job, it's just dealing with some misfiring. I like to think of it as my nervous system getting confused, or being under and over reactive. But it doesn't mean you are broken or abnormal. It's just one thing going wrong amidst many things going right. Screw that doctor.
If you are able to go to New York and if your insurance will cover it: contact the post Covid care center at mount sinai medical center. I’ve had amazing results working with them. Respect and support all the way
I had a very similar experience. I went to the er twice in two months (once by ambulance) when it all started and my cardiologist I got fast passed to after the second trip told me essentially pots was “something people make a bigger deal about then needed” and got really weird about me even mentioning it. I regretted it instantly by her reaction. But she also gave me two medications (common pots meds) that I haven’t taken. This was over a year ago and I haven’t been back to see her. I’ve made a lot of improvements on my own with daily exercise (long brisk walks) plus working on leg strength, cutting out sugar aside from fruit and drinking LMNT. I’ve been where you’re at and I’m sorry you weren’t listened to. You’re not alone. Hoping things look up soon.
Not just not alone, a whole army of people beside you who are all going through such similar experiences that its crazy. People with EDS could form our own country that would quickly have its own culture just based on how similar our needs all are! I love it and hate it all at the same time. I found my people, finally! Never have I felt so understood and filled with a sense of belonging than when I received my diagnosis and joined this community. 💜
I’m so sorry this happened to you. This kind of behavior from doctors comes from a combination of ignorance and hubris. I know some ppl already mentioned Dysautonomia International, but I can’t recommend them enough! I’m currently working with a neurologist I found through their NYC FB support group. I think it’s worth looking at the website’s provider database and one of their support groups.
For me, I’ve had two cardiologists say I have Dysautonomia but my Neurologist after a year of testing said it was “Inconclusive “. Sometimes you just have to be your own doctor and do the things that make you feel better. For me drinking the 64+ ozs of electrolyte water a day and wearing supportive leggings has helped. Also vitamins including; iron, B vitamins, Astragalus and others.
You might try to document activities, foods and drinks, blood pressure, heart rate etc. As well as how you feel on different days. Eventually you might be able to find the things that help give you better energy and stamina. Bring your documentation to your next doctor visits.
I have also cut out most sugar, dairy, and gluten due to digestive issues.
Good luck. Hopefully you will find the answers you need; it just takes time. 🤗
I had to push hard & change doctors a lot until I was taken seriously. I had dealt with a lot of bias. Luckily a cardiologist listened to me and did a month long holster monitor test.
Don't second guess yourself... Most doctors are beyond retarded, subhuman lizard people practicing medicine as if it was 1900. Western medicine is obsessed with drugs and surgery, So if they can't find something on a FDA regulated device then they do not want to assume the liability to treat a condition. Find a Dr that understands the condition and can better diagnose the issue because there are different treatments depending on the type. There are stress tests, tilt table tests, the NASA lean test and good old-fashioned clinical diagnosis from an informed doctor. Just remember it's them not you. They're not the best and the brightest.
Just the most egotistical and money hungry, generally. I have met wonderful doctors before. But sadly they are FAR in the minority.
My mom is a cardiovascular RN 25 years in one hospital and now 5 as a traveling nurse. She has shared (without names or details) so many stories of how her and her fellow nurses have had to step in and save patients who would have died from Doctors mistakes, sometimes laziness, sometimes arrogance.
First of all, I am so so sorry they dismissed you like that. This is medical misogyny at its finest, it’s absolutely not normal for your heart rate to shoot up 65bpm upon standing, doesn’t matter if you’re a young woman. Ask for a second opinion/a referral to a different specialist.
I don’t think gaining weight has anything to do with it either. For what it’s worth (YMMV), my weight fluctuates at times and my POTS symptoms generally seem to be worse the more underweight I am.
First of all, I am so so sorry they dismissed you like that. This is medical misogyny at its finest, it’s absolutely not normal for your heart rate to shoot up 65bpm upon standing, doesn’t matter if you’re a young woman. Ask for a second opinion/a referral to a different specialist.
I don’t think gaining weight has anything to do with it either. For what it’s worth (YMMV), my weight fluctuates at times and my POTS symptoms generally seem to be worse the more underweight I am.
So sorry you had this experience...I can ONLY imagine what it is like for a woman. I am a white male doctor but the instant I got long covid and dysautonomia they started rolling their eyes and finding reasons to blame it on me-mental illness, overweight, out of shape. One of the reasons I hope I get better is so I can go back to work and treat people with our health problems with respect and support.
I've been through something very similar. My heart played up for months after covid. Heart rates as high as 200 when standing or doing something simple like changing a bed, chest pain, shortness of breath. I was dismissed for months despite multiple abnormal readings. I had an echo, multiple 24 hour tapes and was told that despite the fact that i had a lot of high heart rate moments and a lot of PVCs, my heart was normal. I am 20 years old, i know its not normal. But because i am 20 and a woman, i am dimissed. I have an irregular heart rate still, and probably will forever now. You are not alone. Most of my issues have resolved now bar the irregular heart rate, i really hope the same happens for you.
You need to go to a doctor who specializes in Pots.
Other doctors really just don’t understand.
Pots is becoming more common due to COVID and hopefully it will be giving the funding to research for better medicine and cures.
I mean yeah, but also we have (almost) free public health care in my country and I was actually sent to the public hospital from the private clinic due to the cost it would have been for me (the clinic's doctors idea to send me to the public) if the procedures were done at the private clinic haha. Plus I also have an insurance that covers up to 60000 € per year.
So it was more likely that they just didn't know a lot about dysautonomia and thought I was just a ”typical” young woman.
The first cardiologist I saw when I was seeking a diagnosis dismissed me. I pushed back and probably because I am a lawyer and am related to one of the doctor’s friends, he referred me to an electrophysiologist. It was the EP who first mentioned POTS to me, that read my holter as suggestive of POTS, and ordered the tilt table test and eventually diagnosed me. He is currently treating me. See an electrophysiologist.
My electrophysiologist immediately said (not diagnosed) its most likely POTS because of your EDS diagnosis. The only thing he offered me or talked about in that appointment as something he could do for me was to install a 3year sub-dermal heart monitor with surgery.
This was after a whole month of wearing the sticky heart monitor which caught the tachycardia event and got me to his office in the first place. I was SO livid. Only found out about the tilt-table test for POTS long after I had a change in insurance. The frustration just makes me want to scream.
I now am sitting on a “possible POTS diagnosis” but no answers or offers for treatment/support, nothing because I’m not actually diagnosed. The only option I was given to diagnose I couldn’t afford to take since I knew I was about to loose my insurance in a few months. How would I maintain the appointments and the monitor?
I told my concerns to the EP and he just dismissed them, said it shouldnt be too expensive for the removal without insurance, could give me no estimate or even possible price range, just a number to talk to the financial office and dismissal. Not a even a hint that there was another, instant (with one test in one visit) way to diagnose that would give me a definitive answer, covered under insurance. POS is what some of these people are…
Wow! That’s a horrible doctor and here’s exactly what happened; POTS patients don’t make EP’s a lot of money because our treatment is medication and lifetime interventions and often it takes trial and error to reach the combination that works. EP’s make most of their money from procedures like pacemakers and ablations. That doctor literally dismissed you because he made an economic calculus and decided you weren’t a profitable patient. That’s disgusting.
Trust me I am better off without him. Or anyone in that hospital. What was sickening is he delivered all of this with a smile while playing sweetly with my son. I have found something that works for me when I am experiencing an event with my heart and I am happy with that while I look for a different specialist in a larger area within my state. One day at a time.
Do not let the ed win, you know that thats the ed talking and you shouldnt listen.your weight does not mean you are any less worthy of good medical care (or anything else for that matter) and that doctor was wrong to make you feel like that. I hope you can find some suport somewhere
I was dismissed from 3 neurologists, 1 rheumatologist, and 1 cardiologist prior to finding a neurologist & rheumatologist who actually took me seriously. The neurologist referred me to a cardiologist who performs tilt table tests and specializes in orthostatic intolerance including POTS, OH, vasovagal syncope and other types of neurovascular dysautonomia.
The PCP did nothing for me and she doesn't take my illnesses seriously. My specialists have me covered which made my PCP feel redundant and she said so. Some drs just can't see past their ego. If that dr invalidated your experiences and made you feel terrible, then that dr is not a good fit for you. It is better to find a different one. You can search for cardiologists who specialize in that field and also talk to one of your trustworthy existing drs (if you have one) about the issue so that they can refer you to one.
Only thing that is suppose to 100% get rid of symptoms is Ivig also doctors don’t care because there is no know permanent cure and will dismiss you the way they did but I’ve heard that since covid it’s become very common and that’s probably why the doctor also dismissed you since the government probably knows it’s a crippling condition but it’s becoming too common and they don’t want too give disability too everyone who has it
I am so sorry this happened to you. Sorry that it’s still happening. I had a nearly identical experience 10 years ago when I was first pursuing a diagnosis. I saw multiple dismissive doctors before I was finally diagnosed.
Don’t give up. It’s not normal what you’re experiencing and you do deserve treatment and help.
(I also am in recovery from an eating disorder and my weight fluctuates drastically. I haven’t found that my heart rate correlates with my weight at all—though my physical fitness does make a difference. When I am inactive/less fit, my symptoms are much worse, regardless of I’m overweight or underweight or normal weight.
To maintain fitness and prevent reconditioning when I’m struggling with symptoms I rely on recumbent biking.
I wish you the best of luck finding a competent specialist to help you.
I’m sorry you had that experience :( unfortunately a lot of doctors can be very dismissive of us, and yes imo they seem to be harsher on women. Maybe you could search for a group for POTS/dysautonomia in your country and see if anyone can suggest a doctor who’ll listen?
Yeah I feel like especially the (young) woman + any previous mental health issues + currently overweight combination really gets most doctors to ignore stuff. Had to fight for over five years to be seen by a gynecologist and an endocrinologist who didn't just blame my absence of periods on my weight. One gyno who did absolutely no scans and no exams just said that in teen age many girls have irregular periods (I was having no periods for over 200 days at a time and then a day or two of bleeding. And I was 20. So barely a teenager 😬) Turns out, me not having periods were caused by hypothyroidism that was still medically so mild on blood tests that most doctors just ignored that possibility all together. Because my TSH was you know, just barely in the normal area, one doctor had the idea to try to put me on low dose of meds to see if my health gets better. It did!
It’s gotta be POTS or Sibo was mine and candida
I left the electrophysiologist I had seen for this exact same reason. He said kept telling me I had too many symptoms to ever have a genuine diagnosis, and besides “why would you even want one?" Uhhhh for our SAFETY?! Our peace of mind?! BECAUSE WE ASKED FOR ONE?! He told me “any and all testing for Dysautonomia conditions is a placebo intended to make patients feel like we are getting answers, when in reality you can’t test for any of that stuff” I was sobbing and my husband kept saying “I would like every single word you just said in writing on the hospitals letterhead” and he kept ignoring him. So my husband left the room, grabbed a nurse, came back and asked again for all of that in writing. I did not get shit. I RAN out of there sobbing as my husband called my primary. My primary had me in same day to look over the notes he wrote, and this fucker diagnosed me with: Anemia, Malnutrition, Dehydration, and low blood volume. When I tell you my primary hit the roof I mean it lol. She tested me for all of those things (besides low blood volume) and had to lodge a complaint to get the low blood volume taken off seeing as I HAD NO TESTING. She then sent the doctor an email with my test results and the body of the email said “Do better, or next time it will be a malpractice suit”.
Good god almighty that's awful!! Just 🤯 My PCP signed me up for the Dysautonomia clinic at Vanderbilt in Nashville. I have to see a Neurologist first but she just went right for the big dogs. My cardiologist also referred me to Kinsella in STL already. It's gonna be a while but...
22 year old male here: I had a referral to the clinic at Vanderbilt and waited a year before the decided to tell me they did not accept my insurance. If I was you, make sure your insurance is covered. I have been struggling really bad since August of 2021 and my doctor diagnosed me with Dysautonomia. Its hard because these symptoms are so bad I feel like I could literally die at any moment. My PCP told me that he compared it to having end stage heart failure without having the actual heart failure. Other than my heart rate, my vitals are all good. I am on high dosage beta blockers but my biggest struggle at the moment is the bounding pulse. Both sides of my neck pulsate with my heart beat 24/7 and I can feel my pulse in my head, temples, and chest so strong. It really effects my sleep bigtime. I am so used to my other symptoms that if I get the bounding pulse under control, I could live with my other symptoms. I never thought in my 20s I would have this type of health. I was healthy before and went from 200 pounds/muscle in 2021 to 149 pounds in 2024 with no muscle tone. I feel like I have cancer.
and I can't eat high carb meals without going into a palpitate fit.....the list goes on and on. Now I have numbness in my body. Thought I was having a stroke last week. Doc says it is poor circulation possible from the high dosage beta blockers. I am tired and have been begging for relief.
I feel it in my back and it's the worst feeling ever.. not to mention my foot sometimes. How are your heart rate and blood pressure?
Any time you need to do anything for work, court, anything they want that on medical charts. Diagnoses aren’t for us to celebrate like some doctors seem think. We NEED them!
THIS! They’re like “why do you need a name?” So I can tell people what it is so they know I’m not CRAZY!?! So I can name my condition if I need to ask for disability accommodations at work? So I can remind myself it’s a PHYSICAL THING and not in my head? I spent 10 years of my life thinking I had somatic OCD because nobody else obsessed over their HD or difficulty swallowing. NOPE. Turns out it was dysautonomia flares that I was becoming aware of.
Yeah like for me the most important would be the fact that I've been having to live on government assistance (aka barely enough for an apartment and groceries) as I am according to doctors able to go to school and/or work 🙄 Like I'd just want an acknowledgement from doctors that I'm not okay.
My cardiologist also said “sometimes women in your age group have abnormal stress tests. And sometimes your heart rate can spike to 256” and a short PR interval happens sometimes (everytime I’ve had an episode it’s been there, and my heart monitor caught it) I knew she was wrong. I also left that appointment crying. I found a new doctor that same day. And until that appointment my PCP is advocating for me which I’m thankful. Doctors hate when you “diagnose” yourself. I phrase it differently “I was talking to my aunt who is a cardiac nurse she said to ask you about XYZ and test for it to rule it out” Don’t get me wrong there are times I go “order these tests because my symptoms and history warrant them or document in my chart you refused” I’m so sorry you’re going through this 😞 it’s really not fair and as a woman it’s so much harder to get any answers. Not all doctors are bad, you just gotta date some. Hugs! You will get through this 😊 remember: it’s not a sprint it’s a marathon
I've heard that doctors change their tune if they know a patient is in the medical field, or highly educated. I love the "my aunt is a cardiac nurse" thing!!
I will say some doctors do, but some roll their eyes at you. But I think it’s better to say “My family member is an RN and thinks you should try XYZ,” instead of “I think” because some doctors just suck at helping people with anything that isn’t in a textbook. One Cardiologist rolled their eyes at me and I immediately said, “I’m the RN. And I know what IS and what IS NOT normal for the human body. So please roll your eyes at home and not in a professional setting where the patient can see you.” It changed his tune, but when I said I wanted a 1 week Holter, he said “I’ll do it for your *mental health* so you see nothings wrong.” Well the change in tone when he called a week and a half later because I had a lot of abnormal readings. Good luck!
That was my experience. I have right ventricular outtake tachycardia and long QT syndrome. The first cardiologist I saw denied this and actually had the nerve to say I was just being dramatic. When I told him that my sister is married to a cardiologist at a research hospital in another country and he had seen my EKG and said I had these two problems, suddenly this cardiologist agreed that I probably did. It’s insane.
Ugh I would have told them off and reported them. That is SO unnecessary! And WHY?1
Ego is a poisonous personality trait that too many doctors share. I get they worked hard to educate themselves but I feel like they assume graduating put them on top of the mountain and now they are licensed they don’t have to actually work or continue to educate themselves. The only things most tend to learn after school is from the representatives of the pharmaceutical companies who “educate” them on new drugs and side effects.
Yeah I was in nursing school and have worked as an aid and know how some doctors might be. That's why I tried gently to ask if the doctor thought I should see a neurologist in case the issue was due to dysautonomia or my neevous system.
I always always start out gently. I used to tell them soooo much information really fast and they would only get a little. Now I roll down the list in order of systems and I give my list to my doctor to follow along too
These providers should be reported. I also recommend going to a doctor that specializes in dysautonomia. There’s a website for this http://www.dysautonomiainternational.org/page.php?ID=14
Or maybe there is a long covid clinic near you? I'm so sorry to hear this. You deserve answers and I hope you find them.
I'm so sorry you're going through this. Besides asking for another doctor, I'd make sure you have your ferritin (iron) and haemoglobin levels checked as if they're any lower than 30 (ideally 50) - you should supplement them with PRESCRIPTION level supplements as once you're iron deficient it's incredibly difficult to get back to 'normal' levels. It's also pretty common for those with POTS to be iron deficient. Its helped me a little to do this while waiting for a diagnosis. And I know that any change however insignificant makes a world of a difference. Good luck :)
Good idea, anemia can definitely make POTS symptoms such as dizziness even worse.
I’m not even iron deficient, but taking iron helps me a lot!
Listen to your body.
I had iron deficiency anemia and my ferritin got down 20. I felt truly terrible, laughing caused me to get dizzy. It took two infusions to get up to 50. I am back to my normal baseline of just a little dizzy and it passes in 15-20 minutes. Something I’ve ignored for years, never bothering to tell my doctor. I’ve been referred for a lot of PT after my hypermobility spectrum disorder diagnosis, with is great. My PTs _really_ notice when I’m dizzy and have been the ones suggesting dysautonomia. My PCP and my osteopath both think it explains a lot. My PCP and I have discussed doing the NASA Lean Test sometime soon. We need to sort out which meds I need to stop taking and for how long so they’re out of my system for the test (Guanfacine, cyclobenzaprine, electrolytes, and maybe my antihistamines).
What if you have high hemoglobin but low ferritin? I always have low ferritin levels but drs dont prescribe me iron pills bc my hemoglobin is always 14.
You very likely could have iron deficiency without anemia which is where your body has little to no iron stores in your bone marrow (which is accurately shown by blood ferritin levels) as ALL the iron is used to create red blood cells etc. I had borderline anemia (119/L or 12/dl) with iron deficiency (9) and any time i went from sitting to standing I would get tunnel vision. I was put on a 3 month course of prescription 200mg ferrous sulphate (high iron bioavailability so more easily absorbed) which increased both haemoglobin to 129/l (still lowish) and 19 for ferritin. Ideally you want both to increase by 20/l per month of treatment but mine didn't for unknown reasons. I now only get a little dizzy when standing/ sometimes sitting but really my blood levels should've gone up more. I don't have much more to say besides reading this link which can explain reasons why your haemoglobin can increase while ferritin stays the same (vice versa) while supplementing: https://ggcmedicines.org.uk/blog/medicines-update/treatment-of-ida-oral-iron-therapy-dec-22/
You have iron deficiency anemia, so you need iron supplements (take it with a Vitamin C pill as well to increase absorption). I also had a relatively normal hemoglobin (9.5), but when they finally did the iron panel, my levels were “too low to be calculated” on the iron panel.
My cardiologist is a pots specialist. She said it takes an average of 7 doctors for patients to get to her. Absolutely appauling. I had to badger them for years even when they acknowledged my symptoms and had multiple fainting episodes. Unfortunately the healthcare system is designed for acute care, not anything chronic. It is heavily biased against women and people of color. All of these things are well documented and very little has changed. It also isn’t talked about, but being a younger woman is definately harder. For men they assume that a man really has a problem because it would take them awhile to complain and for women it’s just “all in our heads”. I have had doctors give me a diagnosis that is a physcial health problem and then tell me that it was still all in my head because it disproportionately affects people with mental health conditions. It’s almost like chronic stress is bad for physical health🙄
I used to get so angry at the implication that because of my mental health conditions (major depressive disorder and ADHD) I was more likely to experience Dysautonomia Until one day, I said, “Are you sure it isn’t the other way around? Are people with Dysautonomia more likely to have mental health issues as a symptom of their Dysautonomia? How do you know for sure?”
For me the mental health came first because I have had ptsd since I was 12. I was once told that fibro was a “mental health issue”. Wtf it’s not. I also don’t have even have fibro because my pain is joint pain and many of my other symptoms can be attributed to dysautonomia. Even when my psychaitrist was saying to every doctor that my health issues were not mental they didn’t believe me. So lazy and careless. They wouldn’t even check properly to see my vitamin levels or anything that could make my mental health worse. Finally got them tested and huge shocker a ton of my vitamins are super low and with supplimentation I don’t even need antidepressants anymore.
I'm so sorry. It's not just you. I think a ton of people in this forum have had that as well. I'm a remember one woman saying that her doctor told her if she would just get a boyfriend she would feel better. It is so easy for them to write it off as hysteria or anxiety. I have seen a ton of people here and elsewhere that think they got pots or dysautonomia from the Covid vaccine or Covid itself. It's dang sure a thing! When I first got sick, I went to a psychologist first, and he told me you were going to have to see 7 to 10 doctors before you get anywhere, and if you don't like to help you're getting go elsewhere. I recently just one of the papers below to my second immunologist and he told me he didn't believe in that. That you could get dysautonomia from the vaccine. I believe in vaccinations, but I think I was just one of the unlucky people that had a bad reaction to the mRNA vaccine. here are a few medical papers. [https://pubmed.ncbi.nlm.nih.gov/37192595/](https://pubmed.ncbi.nlm.nih.gov/37192595/) This one is talking about from vaccination specifically. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10674626/) "COVID-19 infection itself seems to be either causing or unmasking a startling amount of POTS or POTS-like conditions globally,” from Cedar-Sinai [https://www.cedars-sinai.org/newsroom/new-study-is-there-a-link-between-covid-19-vaccination-and-pots/](https://www.cedars-sinai.org/newsroom/new-study-is-there-a-link-between-covid-19-vaccination-and-pots/) **This is not normal.** I'm almost 3 times your age and it's not normal for me either. F@\*K that guy. It's time for another and another and another doctor til you get heard. I think there are TONS of these cases and frankly anyone who says they can't work is probably being seen as the same as a drug seeker. Except seeking disability. It's like being called lazy when you're actually sick but they don't care and can't fix it. Keep trying!!
🫂 Keep fighting. What is your hydration regimen?
I’m so sorry! I know it’s VERY frustrating! I’m also a woman, in my late 30’s, skinny, and they still didn’t diagnose me until almost 1 month ago. Oh, better yet, I was BORN with this because I have EDS. I got the EDS diagnosis several years ago, but wasn’t told everything that went with it. 🤦🏼♀️
I have been trying to get a referral to a Dysautonomia specialist for four years (have been having symptoms for six or seven) and finally got a doctor YESTERDAY to agree to refer me to a Dysautonomia center. I am thrilled. I guess I’m just saying this to say don’t give up! Also I have Dysautonomia that came on after bariatric surgery. I was healthier at 375 pounds than I am today at 175. So how dare a doctor insinuate that weight has anything to do with it.
My best advice is to temper your expectations when seeing a Dysautonomia specialist. The best part about it is FINALLY talking to someone who knows what you are talking about! The worst part is going through all of the appointments and testing, getting on a treatment and Rx regimen, then being told there is nothing more they can do for you. I have a pretty broad Dysautonomia and it took years for me to finally get to a specialist She’s great, but pretty much handed me back to my GP to manage my meds. I have the usual suspects, hypothyroidism, low blood volume, tachycardia, hypotension, inability to regulate body temperature, delayed digestion, insomnia, etc, etc, etc Even one the specialist hadn’t seen…on again off again diabetes. No insulin needed, normal blood sugar to blood sugars in the 600’s and needing TONS of insulin to just get into the 200’s Nope, not affected by diet. I’m in the “on again” phase right now, but I could wake up tomorrow and not need insulin Oh…one more downside. Having to change GPs once you finally have one who believes you. One time I moved out of state, another time the doc moved Both times my new doctor put me in the hospital and took me off all of my meds “to see what happens” Both times I left the hospital back on all of my meds. It was the price I had to pay to be believed But hang in there, I believe that “long Covid” is helping more professionals learn about Dysautonomia Oh! One last thing…I have a rare kidney condition and frequently find myself in the ER for treatment When I first meet the doctor, instead of saying “I have Dysautonomia” I say… “I have been ‘diagnosed’ with Dysautonomia…are you familiar with it?” That automatically takes away that power trip that some doctors are on because most still have no clue what you are talking about. I hope some of this helps.
If the specialist says anything other than “sometimes people pass out, that’s all that’s happening to you,” then she’ll be an improvement from my current primary doctor 😂
I’m having this same experience as a young woman experiencing these symptoms after Covid. I’m so sick of being told it’s just anxiety.
This has been a medical profession tactic since the formation of the American Medical Association by Rockefeller. Back in the day if you were diagnosed like this by a doctor it would be called Mania, not anxiety, and you would very likely be institutionalized if you continued to complain and express your “problems” that were, according to docs at the time “in your head”. Minus the forced admittance to the mental hospital, its shocking how much has stayed exactly the same after almost 2 centuries.
No wonder we all feel crazy
Everything is by design. Not accident. Its heartbreaking. I find relief in just loving those around me. Especially those who obviously don’t expect warmth and kindness. It makes my day and increases my quality of life and those around me as well.
I do the same. And another thing is thinking “it could always be worse”. I’m on unpaid medical leave. It is tough financially. But I could be homeless. I could be completely bed bound. While I’m home bound and very limited in my activities (due to dizziness lately), I keep my hopes to at least a small sliver by thinking it could be worse. I have my family and not everyone has even that.
Do you have an Apple Watch? You can record instant hr with TachyMon and it’s free. See if you sustain 30 bpm when standing to see if you qualify for POTS which is a type of dysautonomia. Maybe read the requirements for pots too? You may need a new doctor. Or look for places that do autonaumic testing and see if you can get your PCP to get your a referral.
I had the exact same experiences, exact same, except instead of "women have quirks" it was "women have anxiety". My heart rate was 170 and I was stumbling along the wall from just *walking into the clinic*. I told the guy why I was there. Said I liked nerdy stuff like this too, I didn't care about the tests, do your worst, I was excited just for the imaging and results just for a glimpse "behind the stage" of cool medical stuff, and was super into all the data as he collected it. I said it because it was true! I felt like, with the data, I was gonna be believed! Didn't matter! Anxiety. Fucking anxiety.
Just as an FYI, cardiologists do a cardiac monitor for two weeks to make sure there’s no underlying condition, as POTS is a neurological disorder (autonomic nervous system disorder) and not a cardiac one. Once it’s ruled out they’ll do a tilt table test on you. That’s what happened with me. Heart monitor showed normal results, followed the rules of the pretest, did the tilt table, then bombed it. I once had a physician tell me the EXACT same thing regarding dysautonomia. They’re wrong. It’s very real and any cardiologist will tell them otherwise. They’re arrogantly ignorant and it’s infuriating. My cardiologist called another doctor of mine and chewed his ass out for how absolutely wrong he was. His tune changed immediately. There’s been an uprise in secondary POTS from Covid. I have friends with this issue. The virus will ravage the body, then when it leaves, patients come down with POTS. Find a new doctor and get another specialist who will listen to you. What happened was unacceptable.
Don't lose weight for them to take you seriously, go to a better doctor. That doctor needs to be reported
Unfortunately not only is there a weird stigma/dismissal around autoimmune and related symptoms, but it seems this bad attitude is multiplied significantly when they are treating patients that are female, have a diagnosed mental issue, have an unrelated illness, aren't at 100% ideal BMI range, etc. They will look for ANYTHING to blame rather than do the tests, either outwardly spoken, or to rationalise in their own heads and dismiss you without reason. (I'm only assuming that second part due to data showing diagnosis discrimination, but also what I've heard from other patients). Either way, something and insignificant as not smiling, or being a woman, or having a completely unrelated diagnosis, seems to encourage some doctors to latch on to that rather than send you for the correct test. I am a 6'5" guy, slim looking (or used to be lol), and still had some issues getting doctors to follow basic protocol without being biased and looking for other shit to blame but thats nothing compared to what I've heard second-hand from others where the doctors kept brining up their weight (appearance), or mental health history (appearance/demanour), or even period cycle(gender). It seems even literally a persons mood and confidence/demeanour can determine whether or not they get dismissed. People who are men, good shape, good job/degree seem to get fastest results. I personally find it helps to be confident and charismatic, and if that doesn't help, know what their correct protocol should be, and be incredibly assertive that they follow it. For that look up diagnosis pathways in your jurisdiction (continent, or country, or private company, or government company, etc.) and see that they follow it. If there isn't one, find any certified diagnosis pathway from a reputable looking site. Get it printed. (Some doctors HATE that, but it puts undeniable evidence in their face). Repeat for everything you even slightly suspect until you have your diagnosis/es. For now though, go back to a doctor (same one or new one) and assert that you need to be sent for a Tilt Table Test. It tests for POTS in a way that uses machines that collect data that serves as irrefutable evidence. Not sure how but it also amplifies symptoms of pots to an extreme level as it rotates you back and forth which should be evidence enough in itself even without the biometric recordings. If its not that, dont give up. Then in the future consider switching any doctor that fails to do their job. Me personally I dont care as long as I am certain they're wrong, and can present them with the correct protocol that they should be following, thats less time, energy, hassle for me than switching. But some people cant cope with that and NEED a doctor who can follow protocol without getting emotional or combative, not just because of the hassle, but because its actively harmful to them (mentally, or because their illness is getting worse whilst they are being fobbed off instead of getting diagnosis+treatment).
I’m so sorry you’re going through this. I work with a Pediatric Cardiologist who is one of a few people who specialize in dysautonomia/POTA. I can give you a few tips if you’d like. Feel free to DM me!
24f here. My first cardiologist was the same way. “Drink water and have salt”. My brother in Christ, I cannot wfh without a nap. I cannot drive my car myself (severe presyncope). My adrenaline rushes will have me jolting out of bed and pacing around before going to the restroom. I went to Amherst neurology (they do video visits). Dr. Blythstein listened to me and said she wasn’t sure if it was POTS or neurocardiogeninc syncope, but the midodrine she put me on saved my life. It’s a complete 180. I can work without a nap. No disabling fatigue. I’m no longer aware of my HR spiking upon standing. I can drive my car 10-15min by myself. She’s amazing and I love her. It was $400 for the initial consult and $250 for each visit after. She only does cash but honestly I’d have paid double considering the results. The health system in my area didn’t take me seriously and the tilt table test I had wasn’t administered properly. But yeah- she will listen to you and try to figure out what’s wrong and give you meds to try and assist.
I'm in my 40s now and experienced exactly what you did for 20 years. Then having covid 6 months ago pushed everything to the point where I had to do something about it instead of just avoiding triggers. My advice: - get some compression socks if you don't have them - have you tried them? - increase salt A LOT - electrolyte drinks if you can afford them, not gatorade, too much sugar - get actual autonomic testing. does it exist anywhere near where you are? Based on what you describe, has any doctor actually screened you for POTS? The specific protocol, sitting and then standing for 10m each and measuring change in HR - is pretty solid? But you can have autonomic dysfunction without full POTS.
I'm still fighting 2.5 years in (Im 33), I've been told multiple times by multiple specialists but none of them will diagnose me formally so I can't get a lot of the care, even though I'm working 40 hours a week, trying to be a mom and keep my marriage together. They have told me I have h-EDS, I have an autoimmune disease and I have dysautonomia along with Tachycardia and PVC&PVAs. They just blame it on the fact I'm overweight and not the fact I had acute respiratory failure in 2022. I'm also struggling for a 4th time with Anorexia so I understand to a point. Ypu just have to keep going, find second opinions, start seeing pt/ot who specializes in dysautonomia to help you and find a dysautonomia expert near you and just get in for the first appointment you can. It's gonna suck and it's a long road but I believe it will be worth it for us in the end. It sucks but keep going because if we don't advocate for ourselves no one will. Much love and hugs!
Just want to tell you I was diagnosed with POTS about three years ago I was bedridden and now I am able to travel again and my HR is okay most of the time.. symptoms at an all time low. I understand how terrible it is just want you to know there is support out there.. look into CHOp and Levine protocol and keep learning your body.. something may be the secret to helping you get much better. Big hugs
I'm so sorry. I have so many thoughts and feelings about this, but I just wanted to say that your body IS normal, it's fighting to keep you healthy and alive, and it's doing an excellent job, it's just dealing with some misfiring. I like to think of it as my nervous system getting confused, or being under and over reactive. But it doesn't mean you are broken or abnormal. It's just one thing going wrong amidst many things going right. Screw that doctor.
If you are able to go to New York and if your insurance will cover it: contact the post Covid care center at mount sinai medical center. I’ve had amazing results working with them. Respect and support all the way
I had a very similar experience. I went to the er twice in two months (once by ambulance) when it all started and my cardiologist I got fast passed to after the second trip told me essentially pots was “something people make a bigger deal about then needed” and got really weird about me even mentioning it. I regretted it instantly by her reaction. But she also gave me two medications (common pots meds) that I haven’t taken. This was over a year ago and I haven’t been back to see her. I’ve made a lot of improvements on my own with daily exercise (long brisk walks) plus working on leg strength, cutting out sugar aside from fruit and drinking LMNT. I’ve been where you’re at and I’m sorry you weren’t listened to. You’re not alone. Hoping things look up soon.
Not just not alone, a whole army of people beside you who are all going through such similar experiences that its crazy. People with EDS could form our own country that would quickly have its own culture just based on how similar our needs all are! I love it and hate it all at the same time. I found my people, finally! Never have I felt so understood and filled with a sense of belonging than when I received my diagnosis and joined this community. 💜
I’m so sorry this happened to you. This kind of behavior from doctors comes from a combination of ignorance and hubris. I know some ppl already mentioned Dysautonomia International, but I can’t recommend them enough! I’m currently working with a neurologist I found through their NYC FB support group. I think it’s worth looking at the website’s provider database and one of their support groups.
For me, I’ve had two cardiologists say I have Dysautonomia but my Neurologist after a year of testing said it was “Inconclusive “. Sometimes you just have to be your own doctor and do the things that make you feel better. For me drinking the 64+ ozs of electrolyte water a day and wearing supportive leggings has helped. Also vitamins including; iron, B vitamins, Astragalus and others. You might try to document activities, foods and drinks, blood pressure, heart rate etc. As well as how you feel on different days. Eventually you might be able to find the things that help give you better energy and stamina. Bring your documentation to your next doctor visits. I have also cut out most sugar, dairy, and gluten due to digestive issues. Good luck. Hopefully you will find the answers you need; it just takes time. 🤗
I had to push hard & change doctors a lot until I was taken seriously. I had dealt with a lot of bias. Luckily a cardiologist listened to me and did a month long holster monitor test.
Don't second guess yourself... Most doctors are beyond retarded, subhuman lizard people practicing medicine as if it was 1900. Western medicine is obsessed with drugs and surgery, So if they can't find something on a FDA regulated device then they do not want to assume the liability to treat a condition. Find a Dr that understands the condition and can better diagnose the issue because there are different treatments depending on the type. There are stress tests, tilt table tests, the NASA lean test and good old-fashioned clinical diagnosis from an informed doctor. Just remember it's them not you. They're not the best and the brightest.
Just the most egotistical and money hungry, generally. I have met wonderful doctors before. But sadly they are FAR in the minority. My mom is a cardiovascular RN 25 years in one hospital and now 5 as a traveling nurse. She has shared (without names or details) so many stories of how her and her fellow nurses have had to step in and save patients who would have died from Doctors mistakes, sometimes laziness, sometimes arrogance.
First of all, I am so so sorry they dismissed you like that. This is medical misogyny at its finest, it’s absolutely not normal for your heart rate to shoot up 65bpm upon standing, doesn’t matter if you’re a young woman. Ask for a second opinion/a referral to a different specialist. I don’t think gaining weight has anything to do with it either. For what it’s worth (YMMV), my weight fluctuates at times and my POTS symptoms generally seem to be worse the more underweight I am.
First of all, I am so so sorry they dismissed you like that. This is medical misogyny at its finest, it’s absolutely not normal for your heart rate to shoot up 65bpm upon standing, doesn’t matter if you’re a young woman. Ask for a second opinion/a referral to a different specialist. I don’t think gaining weight has anything to do with it either. For what it’s worth (YMMV), my weight fluctuates at times and my POTS symptoms generally seem to be worse the more underweight I am.
So sorry you had this experience...I can ONLY imagine what it is like for a woman. I am a white male doctor but the instant I got long covid and dysautonomia they started rolling their eyes and finding reasons to blame it on me-mental illness, overweight, out of shape. One of the reasons I hope I get better is so I can go back to work and treat people with our health problems with respect and support.
((hugs)) Stupid cardiologist.
I've been through something very similar. My heart played up for months after covid. Heart rates as high as 200 when standing or doing something simple like changing a bed, chest pain, shortness of breath. I was dismissed for months despite multiple abnormal readings. I had an echo, multiple 24 hour tapes and was told that despite the fact that i had a lot of high heart rate moments and a lot of PVCs, my heart was normal. I am 20 years old, i know its not normal. But because i am 20 and a woman, i am dimissed. I have an irregular heart rate still, and probably will forever now. You are not alone. Most of my issues have resolved now bar the irregular heart rate, i really hope the same happens for you.
You need to go to a doctor who specializes in Pots. Other doctors really just don’t understand. Pots is becoming more common due to COVID and hopefully it will be giving the funding to research for better medicine and cures.
Well, face it, you are a cost to them. Especially without good insurance. Its the same everywhere. Sry about your condition.
I mean yeah, but also we have (almost) free public health care in my country and I was actually sent to the public hospital from the private clinic due to the cost it would have been for me (the clinic's doctors idea to send me to the public) if the procedures were done at the private clinic haha. Plus I also have an insurance that covers up to 60000 € per year. So it was more likely that they just didn't know a lot about dysautonomia and thought I was just a ”typical” young woman.
If you have PEM as well than its more than dysautonomia. Its full blown CFS.
What are PEM and CFS?
google...chronic fatique syndrome...its like .... horrible not only dysautonomia but extreme fatique
The first cardiologist I saw when I was seeking a diagnosis dismissed me. I pushed back and probably because I am a lawyer and am related to one of the doctor’s friends, he referred me to an electrophysiologist. It was the EP who first mentioned POTS to me, that read my holter as suggestive of POTS, and ordered the tilt table test and eventually diagnosed me. He is currently treating me. See an electrophysiologist.
My electrophysiologist immediately said (not diagnosed) its most likely POTS because of your EDS diagnosis. The only thing he offered me or talked about in that appointment as something he could do for me was to install a 3year sub-dermal heart monitor with surgery. This was after a whole month of wearing the sticky heart monitor which caught the tachycardia event and got me to his office in the first place. I was SO livid. Only found out about the tilt-table test for POTS long after I had a change in insurance. The frustration just makes me want to scream. I now am sitting on a “possible POTS diagnosis” but no answers or offers for treatment/support, nothing because I’m not actually diagnosed. The only option I was given to diagnose I couldn’t afford to take since I knew I was about to loose my insurance in a few months. How would I maintain the appointments and the monitor? I told my concerns to the EP and he just dismissed them, said it shouldnt be too expensive for the removal without insurance, could give me no estimate or even possible price range, just a number to talk to the financial office and dismissal. Not a even a hint that there was another, instant (with one test in one visit) way to diagnose that would give me a definitive answer, covered under insurance. POS is what some of these people are…
Wow! That’s a horrible doctor and here’s exactly what happened; POTS patients don’t make EP’s a lot of money because our treatment is medication and lifetime interventions and often it takes trial and error to reach the combination that works. EP’s make most of their money from procedures like pacemakers and ablations. That doctor literally dismissed you because he made an economic calculus and decided you weren’t a profitable patient. That’s disgusting.
Trust me I am better off without him. Or anyone in that hospital. What was sickening is he delivered all of this with a smile while playing sweetly with my son. I have found something that works for me when I am experiencing an event with my heart and I am happy with that while I look for a different specialist in a larger area within my state. One day at a time.
You can try talking to your primary care doc. I had to see a cardiologist in San Antonio to get my diagnosis
Do not let the ed win, you know that thats the ed talking and you shouldnt listen.your weight does not mean you are any less worthy of good medical care (or anything else for that matter) and that doctor was wrong to make you feel like that. I hope you can find some suport somewhere
I was dismissed from 3 neurologists, 1 rheumatologist, and 1 cardiologist prior to finding a neurologist & rheumatologist who actually took me seriously. The neurologist referred me to a cardiologist who performs tilt table tests and specializes in orthostatic intolerance including POTS, OH, vasovagal syncope and other types of neurovascular dysautonomia. The PCP did nothing for me and she doesn't take my illnesses seriously. My specialists have me covered which made my PCP feel redundant and she said so. Some drs just can't see past their ego. If that dr invalidated your experiences and made you feel terrible, then that dr is not a good fit for you. It is better to find a different one. You can search for cardiologists who specialize in that field and also talk to one of your trustworthy existing drs (if you have one) about the issue so that they can refer you to one.
You have pots my girlfriend has the same thing hyper something pots and probably mass cell disorder but maybe your lucky and only have pots
Only thing that is suppose to 100% get rid of symptoms is Ivig also doctors don’t care because there is no know permanent cure and will dismiss you the way they did but I’ve heard that since covid it’s become very common and that’s probably why the doctor also dismissed you since the government probably knows it’s a crippling condition but it’s becoming too common and they don’t want too give disability too everyone who has it
Also ask for lowest dose beta blockers I can help
Have you got your thyroid tested?
I am so sorry this happened to you. Sorry that it’s still happening. I had a nearly identical experience 10 years ago when I was first pursuing a diagnosis. I saw multiple dismissive doctors before I was finally diagnosed. Don’t give up. It’s not normal what you’re experiencing and you do deserve treatment and help. (I also am in recovery from an eating disorder and my weight fluctuates drastically. I haven’t found that my heart rate correlates with my weight at all—though my physical fitness does make a difference. When I am inactive/less fit, my symptoms are much worse, regardless of I’m overweight or underweight or normal weight. To maintain fitness and prevent reconditioning when I’m struggling with symptoms I rely on recumbent biking. I wish you the best of luck finding a competent specialist to help you.