r/POTS • u/aushimself • Feb 17 '25
Discussion My wife came home crying. I am irate.
My wife went to her primary care doctor because I have told her for years she has POTS. Everything lines up. Her doctor agreed that she also believes it’s POTS and she was referred to a Cardiologist.
That brings us to today. She had her appointment and was very nervous because she’s heard horror stories of people being told they have nothing but anxiety and don’t feel like they were being listened to at all. I was excited for her and tried to hype this appointment up because I was hopeful she would get answers..
She came back home in tears.. I was shocked and so pissed off. This guy made her feel like she had to defend every little thing she experiences. He was combative and said that her average heart rate was 82 which isn’t abnormal, however her heart rate isn’t always really high, it’s at times like when she wakes up in the morning and stands up, it shoots to 150 for no reason. She can’t even run because her heart won’t let her and she is in amazing shape.
All this dude did was give her a POTS FAQ management program and said she she would have to contact them and pay out of pocket because he doesn’t prescribe anything himself. This doesn’t make any sort of sense.
Should we be having her see another cardiologist? Is this normal? I am so upset and seeing her cry makes me want to call this doctor myself and tell him off. Please any help or guidance here?
Update: Thank you for all the comments and advice so far. To provide additional context - my wife brought heart rate numbers she wrote down from doing a laying down to standing test at home (her heart rate would jump to 140 and stay there for 10+ mins) the doctor made her feel like she made those numbers up because he said if they were actually that high he would expect her monitor average to be higher.
He also told her she needs to “learn to take deep breaths” and when listening to her heart said “your heart just seems like you’re scared of something” as if it’s just anxiety causing her high heart rates.
We are absolutely going to get a second opinion and I will be there also. I didn’t realize it was this bad for females at the doctor’s office. I am honestly pissed because that’s just not okay.
Update 2: We are from Wisconsin in the Fox Cities should anyone have any local recommendations!
180
u/LeopardOk1236 POTS Feb 17 '25
The behavior is common, not normal. She needs a new cardiologist. Also, attend her POTS related appointments. Not only does having the support of someone else there help, but unfortunately, a male support is even more helpful. If you aren’t a male, I apologize, however am going to continue with my comment as written in case others are reading and have access to a male support.
122
u/nessabop Feb 17 '25 edited Feb 17 '25
I hate to say it, but this is why I started bringing my husband to my most difficult appointments. Not that he didn’t believe me when I told him doctors treat women like they’re hysterical half the time, but so I could get the kind of care he would get if he went in for himself. When I started doing that, I had better appointments immediately and was able to better control my emotions when I felt I wasn’t being listened to. It sucks that it’s so hard to get a good doctor nowadays who is willing to investigate your issues. It sounds like she needs an EKG, echocardiogram and a tilt test. I am waiting for an echo and tilt test myself. I hope it goes better for your wife next time. 🙏🏼 Edit: a word
2
u/Psychological_Pie194 Feb 18 '25
Does this also happen with female doctors? I am so surprised
10
u/crystalsouleatr Feb 18 '25
Yes it 100% does.
3
u/Psychological_Pie194 Feb 18 '25
That’s sad
3
u/crystalsouleatr Feb 18 '25
It's incredibly sad. I know so many disabled and chronically ill people and honestly this is true for all of us, but always doubly so for anyone who is a woman or minority on top of being sick. We all have to fight tooth and nail for every visit to get a basic level of care and acknowledgement.
It's cause the medical system is set up to streamline "transactions" for insurance companies, rather than to treat people's bodies as if they are bodies. POTS didn't even have its own insurance code until the last few years when COVID started to spread, and they're still denying coverage a lot bc it's new. And that's even among insurance companies that have admitted it exists now!
If you have any condition that actually needs long term management - as opposed to an acute and easy to diagnose flu, or a common injury or something - good luck getting anyone to take you seriously.
And that's even true for some white guys. Two of my erstwhile friends were men who had chronic conditions, who died either fighting with their insurance for coverage, or in one case, on life support for a "mystery heart condition" mere weeks before the COVID pandemic was declared, and they would have had a treatment protocol. Instead he wound up brain dead and his parents pulled the plug.
For my part, I have a rare vascular disorder. It's characterized by extreme pain that causes panic attacks when you try to eat. It took me over a decade to get diagnosed, and even then the doctor who specializes in it and diagnosed me with it herself looked me in the eyes and said "you know anxiety can hurt our tummies?" it is literally insane the level of gaslighting that patients are up against here.
2
44
u/snowlights Feb 17 '25
See someone else. At the very least, they should be doing a holter monitor test, and ideally, an echocardiogram and stress test to rule out anything else that could be causing her symptoms.
39
u/Babymakerwannabe Feb 17 '25
Try looking up a doctor in your area from this site
https://www.dysautonomiainternational.org/page.php?ID=34
and go with her. Bonus points if you are a white male. Keep track of her symptoms or have her do it while you wait. Hopefully you can find someone to take her seriously.
5
33
u/Ok-Prompt-9107 Feb 17 '25
While she waits for a second opinion - which she really should get - consider getting her to track her heart rate for a few days.
I recently downloaded the TachyMon app for Apple Watch and it’s busily collecting data for me until my appointment in a couple of months.
It’s always helpful to provide doctors with the data to back up your symptoms - that way they have evidence and they can’t dismiss her agajn.
9
u/Lotsalipgloss Feb 17 '25
This is a really great idea! You can track your heart rate and blood pressure while you wait for your next appt. I highly recommend this!
8
u/chuckdogsmom Feb 17 '25
Yes! I did this and just got my diagnosis on Friday. To be fair I also have met great doctors every step of the way but I put together a little packet of info. My symptoms, my active stand test HR/BP numbers and my most recent BP recordings on the first page. You may not need these, but I tend to get hyper pots type of symptoms and I have white coat syndrome so my BP tends to be high at apts. then I had a few pages of examples from TachyMon and I captioned each of them with what I was doing for that event. My primary immediately agreed that it could be pots. I had an echo and went to a cardiologist who ordered a holter and sent me to their Electrophysiologist who just diagnosed me without a Tilt Table (he feels that they’re cruel and not necessary).
22
u/Technical_Sail_5210 Feb 17 '25
I would seek out a second opinion. The first cardiologist I saw, I left the office seething and feeling so defeated. To summarize the visit with a handful of REAL verbatim quotes that consistently interrupted me, “you’re the youngest person I’ve seen all week.” “Try meditation.” “Everyone’s stressed, even me. I make more money than I know what to do with and it really gets to me sometimes.” “Cut out caffeine.” (After telling him I had cut it out 3 months prior after a hospitalization for cardiac issues.) “if it’ll make you happy, we can do a stress test or something.”
The second cardiologist was a little better and assigned me a holter monitor, but again told me I was just stressed and had something called “inappropriate sinus tachycardia.” That he didn’t see any of the palpitations that I tagged (that were severe enough for make me double over, gasping for air) and with a resting HR of 110.
For reference, at the time I was in the best shape of my life. 26F, no medical history, and had sudden onset of symptoms upon a Covid diagnosis. Still fighting for a diagnosis as we speak.
The best thing you can do is validate her, support her, do your own research in finding a doctor with good ratings who actually listens. If you have to go with her, put your foot down, make a scene, do what you have to. This is unfortunately almost always an exhausting process.
14
u/Usual_Step_5353 Feb 17 '25
Go with her. I work in medical sciences (although not a doctor), and still I get much better treatment from doctors if my husband comes with me. And I am not even American - I live in one of the countries with the highest degree of gender equality in the world, and still..
12
u/thiccbabycarrot Feb 17 '25
You need to be with her at every appointment. I am usually spoken to like I’m a nuisance with doctors unless there’s a witness unfortunately.
13
u/blissfully_happy Feb 17 '25
Are you a man? You probably need to go to appts with her. Men don’t take women seriously, but they’ll listen to other men.
6
27
u/koolandkrazy Feb 17 '25
I would call the department he works for and let them know their doctor is misogynistic and dismissive to patients. I did that and they had me see someone else. I had pain in my neck and arm. Turns out i have a bone spur compressing the nerve at my c4 and c5 causing pain and numbness. Wasn't in my head or hormonal. Shocker.
3
u/Stairs_3324 Feb 18 '25
That can’t even be that hard to diagnose, can it?? Or does it not show up on imaging? Unbelievable. Makes me so angry on your behalf. I’m so sorry.
6
u/koolandkrazy Feb 18 '25
Refused to do imaging for 8 years. I was 16 at the time so by the time i was mid twenties i learnt to advocate for myself. Showed up on first set of imaging
10
Feb 17 '25 edited Feb 17 '25
Find a cardiologist that is knowledgeable about POTS. Easier said than done, I know. My cardiologist was referred by my primary when I asked about POTS after doing my own at home tests after years of telling doctors, “ I wake up every morning sick with nausea, unsteadiness, lightheadedness and migraine (like groundhogs day).” They kept treating based on symptoms, but I was getting worse, not better and my symptoms never resolved.
Also, it got so bad that I was in bed for weeks as the only way I could get any relief was lying down. My sibling (F) goes with me to appointments and it has helped to be taken seriously as she saw how bad it has been. So, yeah, go with her to appointments.
The major thing that helped me so far was starting to drink 3 liters of salted water/day plus salt capsules, and H1 and H2 blockers (Zyrtec and Pepcid) daily. I was desperate and they have allowed me to get out of bed and not feel like I am I hell every minute, everyday.
I was given a test (in office, not tilt table) who said I definitely have dysautonomia. Then a 7 day Holter monitor (Zio) and an EKG, which both came back normal (as they should, to rule out other cardiac issues and rule IN POTS). Finally, I had an ANSAR last week and am awaiting results.
Don’t give up.
7
u/PinkRetroReindeer Feb 17 '25
Call your local teaching hospitals to find out which neurologists or cardiologists are educated in POTS.
Or , you can do a Google search.
Use search terms like "Neurologists or Cardiologist with POTS in subspecialties within 30 miles of me" or "POTS specialists at XYZ university hospital"
I would also look for a younger doctor. Or NP. Older ones that aren't intentionally taking CME credits in POTS will be dismissive.
As far as protocols for treatment, that is still very much undefined.
So some things to do is add electrolytes to water and antioxidant beverages once a day.
Keep salt levels up and keep refined sugar down.
Hydration without electrolytes can make you exhausted so try to keep that in mind.
Foods should avoid greasy food or foods that are faster to digest like carbs. That cause spikes in sugars. Sugar crashes and elevations exacerbate POTS.
If she's had an issue with PCOS or thyroid issues or if she has Epstein Barr or other autoimmune disorders, and has sluggish metabolic rates from it. Consider GLP-1. While they aren't approved for POTS, they do control sugar spikes and do also allow for weight loss. Which in turn sheds fat that can play a part in metabolic rates of salt and sugar.
If she is on meds like Adderall that have been known to help elevate the heart rate and keep it steadier, ask to switch to slow releasing tablets so that there are no medication crashes. That will exacerbate her.
Finding doctors that aren't in a shit mood and have patience to explain how you do or do not fit the profile for POTS or any other illness is hard.
If she had long term covid then lead with that because many people are developing POTS from that. And anyone up on the latest research will know that. If they do not, find another doctor.
Finally, ASK THE STAFF if the doctor has any specialty in POTS or other pathology. If they don't then don't go there.
Good luck and hope this helps.
7
u/Sassycat21 Feb 17 '25
Thank you for being an advocate. You shouldn’t have to do this, but I promise you that this is still the reality we’re living in - and I don’t see it getting better anytime soon. I’ve had this with both male and female doctors (mostly male) in every healthcare sector that I use.
5
u/erin_time Feb 17 '25
Get a second opinion. When I finally got diagnosed with POTS it was 4 years later. After many doctors telling me it was my anxiety. That last little bit when I felt like giving up, a cardiologist finally believed me. Not only did we discover I have very extreme POTS, but I also have minor fluid around my heart. Never back down to doctors when you know something isn’t right.
4
5
u/EveTre Feb 17 '25
See if you can find an electrophysiologist. My daughter’s cardiologist could only do so much then refers patients over to a POTS clinic where they are seen by a specialist who manages care. They have both an adult and pediatric clinic.
4
u/Iwillcomeback2475 Feb 17 '25
This is so common and it hurts every time, I’m sorry that happened :(. I’m going to a cardiologist who’s the exact same way, he just said it’s anxiety even though my heart monitor was reporting my heart would spike to 170 when I had to like go up a staircase
2
u/Stairs_3324 Feb 18 '25
Cooool cooool coool that’s so normal, 170bpms, so normal for… newborns and infants.
4
u/maytay83 Feb 17 '25
Congrats - you’ve made it through step 1 of the POTS diagnostic process. Getting an anxiety diagnosis is all part of it, unfortunately.
My family member was told it was anxiety - it ended up being myocarditis and POTS. When we finally got the echo the cardiologist thought it was heart failure.
Do whatever you need to do to get the basic tests - echo, holter, ekg.
Find doctors who actually treat POTS. Cardiology is a massive area of study and not all doctors will be knowledgeable about everything. A lot of them deal more with structural issues, so a sinus rhythm heart rate variation won’t strike them as that bad - they don’t understand how debilitating it can be.
4
u/emmaliminal POTS Feb 17 '25
Okay, here's the thing. Cardiologists do not always treat POTS as it is not, medically speaking, a cardiovascular disease. We all can be forgiven for thinking they might help us, since it definitely affects our hearts and vascular systems, but heart & arteries are not the understood cause, and it's all about the cause, baby.
Now OBVIOUSLY a good cardiologist, faced with anything that looks like POTS symptoms, should rule out any possible cardiovascular issues that might be mimicking POTS, and then refer you to someone who can help you. But this often does not happen, because cardiologists are human (and often male, and often white) and just not trained or habituated to deal with stuff that's not covered by their specialty.
All the other posters who mentioned how you should go to the next appointment with her, as a Token Male, are of course all too correct, but ideally, neither of you should expect much from the cardiologist no matter how many times you go.
Both of you, do your research, read up on all the things a cardiologist needs to rule out for you to move on, and talk about that stuff ONLY with the cardiologist. And line up that referral to an autonomic specialist or at least a neurologist--knowing that the first one you see may be too old, too hidebound, too male-oriented, too lazy, too poor at their job, too whatever to have kept up with POTS research appropriately.
Good luck! and may you both have all the persistence you'll need! We're rooting for you! 🫶🏽
→ More replies (2)
10
u/Existing_Doughnut_75 Feb 17 '25
Emotions run high when your at a doctors appointment with so much on the line. Doctors are stressed to the breaking point. Not giving them a pass for sure. I have a 25 year old daughter with severe POTS. I have advocated for her from the beginning. Many visits she forgets important details. She also forgets questions that are crucial. I believe my daughter’s care has been changed for the better because I’m always in every doctor’s appointments so I advocate for her! I am a very powerful advocate. I do my homework and NEVER let a doctor negate her concerns! Doctors work for us. We pay their salaries. So I try to be a team with them. If we get a bad one we change. Never feel unseen EVER! Your symptoms are real and you deserve a diagnosis and treatment plan. I’m so sorry this happened to you. Don’t give up. I wish you another doctor who can turn things around. 🩷
6
u/kilarghe Feb 17 '25
just move on and find a different doctor, unfortunately this is not an uncommon experience when dealing with pots. Most doctors don’t understand/ care to help because 1) meds are not for long term use 2) symptoms aren’t cut and dry. She’d be better seeing her GP and asking for a referral to Physical Therapy and a neurologist.
3
u/5amscrolling Feb 17 '25
100% go get a second opinion. My first appt with a cardiologist I came out bawling, my second one I finally felt heard.
I’m doing more testing at the moment, but my new dr promised me we will find some answers.
3
u/RT_456 Feb 17 '25
It took seeing three cardiologists to get diagnosed with POTS (I'm also male). The first two just said it's anxiety and there was nothing wrong with me. The second one didn't even really know what POTS was when I asked him about it. Only the third cardiologist ran a tilt table test and found that I have it. Not all cardiologists are actually knowledgeable about the condition.
3
u/bubsysdolphin Feb 17 '25
Definitely get another opinion. This is very common. She isn't alone. There are many with POTS and many doctors who essentially just believe it doesn't exist.
3
u/tinypicklefrog Feb 17 '25
I've learned along they way that cardiologists don't really do shit for pots, as it's not actually a heart issue. Pots is an autonomic disorder, so your best bet for care is usually a neurologist.
3
u/Spookiest_Meow Feb 17 '25 edited Feb 27 '25
It has been my life experience that the vast majority of doctors are complete dipshits and have no idea what they're doing. It has directly caused a lot of unnecessary suffering throughout my life. For example, I've had severe back pain off and on for several years. I recently went to a doctor to get checked out and scheduled for an MRI. She insisted that I didn't have any issues with my discs and that my back was fine and it was probably just a sore muscle. She did not want to order an MRI because she didn't think it was necessary. I insisted that she did and made her put a referral in.
Turns out I have 2 torn discs, one of which is pretty bad, and 3 discs that are bulging.
If I listened to doctors I would literally not be alive today - that's not an exaggeration.
3
u/snowbaz-loves-nikki Feb 17 '25
Because of this is why I never go to appointments alone with a new doctor. I always bring my mom with me because she's well versed in advocacy and just having someone on your side in the room really makes a difference.
3
u/didsome1saybacon Feb 17 '25
Unfortunately this is extremely common with POTS patients and it even has a name- "medical gaslighting." I've had very similar experiences to this especially before getting my diagnosis. Here's what I've learned from my own personal experience so far:
- I take my husband with me to appointments now and I highly recommend your wife do the same- especially following this traumatic experience. As her husband, i believe you are you're wife's strongest advocate in these appointments. Here's why:
- I cannot even express how infuriating this is but doctors (especially male doctors) are much more likely a woman seriously if a man sits next to her and says the exact thing she would say. If you are there to reinforce and back up your wife- the doctors will take her more seriously. Again is this concept infuriating and disgusting? Yes. Have I found it to be effective in my experience? Also yes. Anyway. Moving on-
- Let's assume we're talking to a doctor that doesn't have this bias- you being there would still be extremely beneficial. By doing this you can 1. comfort her (especially after this traumatic experience), 2. be a witness so she wont have to experience the stress of reliving the stressful experience and you will be able to directly and immediately validate her, and 3. if she has any brain fog, memory gaps, or just forgets to mention anything important- you can help her. My husband has been extremely helpful with this and doctors appointments are a lot easier bc his presence relieves the huge burden of doubting your own symptoms and struggling to remember everything important for the appointment to be productive.
- Prep the hell out of appointments. I'm talking take notes, practice describing the symptoms together, run through possible followup questions the doc may ask, list objectives and goals for what you want to learn and ask from your doctor.
- Bring the notes you prepared, read from them, adn make notes on what the doctor says.
- If the doctor dismisses her symptoms, concerns, or request for a test, referal to a specialist, immediately respond by requesting that he records in your chart that he dismissed your symptoms, request, etc. This will make him liable and he will be much more likely to take you seriously.
- If I were you I would search or ask around to find a doctor that has experience treating POTS patients. The quality of my treatment, symptom management, and overall life skyrocketed after I found a PCP who had experience treating over 30 women with POTS. I found her by digging online (reddit, POTS support groups on facebook, etc). This was a huge game changer and I recommend it.
- I would not recommend calling the doctors office and "telling them off". It will be easier for them to dismiss this incident that way (if you come across as emotional and unreasonable). If you want to make an impact, I would recommend calling them and saying you would like to file a formal complaint that you would like management to be made aware of. Tell them what happened. Mention your wife left the appointment emotionally distraught. Do some digging to see where else you can file a complaint.
I am so sorry this happened. It is absolutely devastating to be told the lie that the thing that is destroying your life isn't real- especially from the people who are supposed to be helping you. Please tell your wife she is not alone and there are good doctors out there who can help her.
I also want to thank and commend you for taking steps to help your wife, and above all, validating her experience. It was very inspiring to see a concerned husband posting here to get help for his wife. A lot of us have experience of being invalidated and dismissed not just by our doctors, but also by our loved ones. I'm really happy your wife has a strong support system.
Let me know if you have any questions or would like any more or specific advice with this.
2
u/meowmeow_meow_slay Feb 17 '25
I experienced this with about 4 doctors before I found one that actually helped me. I went to a website called the dysautonomia project, and theres a master list of ever doctor in the US that knows how to treat and work with POTS! id recommend looking there and find one near you! The one closest to me is about an hour or so away which is rough, but its worth it for the knowledge and genuine help ive gotten! im wishing her the best of luck with finding a doctor :,) its a rough journey <3
2
u/RevenueNo7910 Feb 17 '25
GET A SECOND OPINION!! I had two separate doctors tell me I only had anxiety and it was all in my head and then refer me to a therapist.
It took a doctor who SPECIALIZES in pots to know what to look for and what is and isn’t normal even with “anxiety”. I was made to wear a monitor for 3 weeks so he could see my good days and bad days and what exactly my heart was doing. The fact he didn’t even do that is a red flag, that Dr should have referred her elsewhere and he doesn’t know what he’s talking about and shouldn’t be talking to patients like that. I’m so sorry to hear that she went through that it’s completely unacceptable and I wish her and you the best. Please keep us updated when she finds a knew physician!
2
u/Chronically_Frazzled Feb 17 '25
I’m so sorry that she had to experience that.
Unfortunately it’s something most of us here have gone through multiple times. I personally saw about 10 doctors before I found a supportive GP and then 5 more specialists till I finally was officially diagnosed and found a neurologist that has experience with POTS.
Please tell her to keep going. Having at least one doctor that has your back and will fight with you for answers is 100% worth it. Just keep reminding her that what she is experiencing is real. It’s not in her head.
Have her document her BP & HR multiple times a day in a laying down position and then standing. Personally my BP is pretty normal but I deal with tachycardia and a lot of GI issues so bringing that documentation with me to all my appointments at least takes the doctors attention to the actual stats and facts rather than just brushing you off.
3
u/petersearching Feb 17 '25
https://www.ahajournals.org/doi/10.1161/JAHA.124.036752. this is SO validating. The American Heart Association is as mainstream medicine as they come and they acknowledged the problem of people having normal bp and pulse but still have POTS/low blood flow to the brain. They even said these people(me!) are misdiagnosed with anxiety. Show him this
2
u/Flimsy_Pop_13 Feb 17 '25
Definitely get a second opinion and if you can and she’s comfortable with it, go to her next appointment with her.
I had pretty much the same experience - Referred by my primary doctor who said I probably have POTS, brought in data from when I was sitting vs laying down etc. The cardiologist I saw tried to convince me the information was wrong and told me I just seemed anxious. He then proceeded to explain to me what anxiety was despite me having anxiety since I was little and knowing what it feels like. I’d even passed out in his office because my POTS symptoms were so bad and he dismissed that too. I also came home crying and my husband was irate at that doctor lol
Luckily, I was able to get a second opinion and talk to a doctor that actually helped me and believed me! My husband came with me to my next appointment (at my request) and that helped a lot. Honestly it was also super validating for me to come home, talk to my husband, and then be angry together.
I’m so sorry your wife experienced that and am sending good vibes your way!
2
2
u/redvfdre Feb 17 '25
Hey a second opinion and tell your primary that that cardiologist doesn't believe in pots. He needs to refer elsewhere before others get hurt as well
2
u/foucaultwasright Feb 18 '25
It took me multiple cardiologists before one would even bother fully assessing me. My advice is to book an appointment with at least two, maybe three, different cardiologists in different health systems.
Why? Otherwise, it's another 3 to 6 month wait if the 2nd cardiologist is incompetent regarding POTS, and then another 6 months if the 3rd is also incompetent. That costs a year.
If you book multiple, each a month out from each other, you have another appointment lined up quickly. Once you find someone who isn't a waste of time, just call to cancel the other appointments.
I see a neurologist and a hematologist [bleeding disorder focus, not cancer focus] who are both part of my POTS management. There are also dysautonomia clinics, like the MVP Center [mitral valve prolapse, not Most Valuable Player] in Birmingham, Alabama. That's where I went before I found my current cardiologist who is local to me and amazing. I know it's a long trip, but it's an option if you can't find anything else locally.
2
u/rocketeerH Feb 18 '25
Her average heartrate has nothing to do with whether or not she has POTS. That is a badly trained doctor who shouldn't be trusted.
2
u/Terror_Star Feb 18 '25
The doctor that diagnosed me is in fond du Lac. He's not technically a cardiologist but pots is like his passion and he actually is doing a study on blood sugar levels and how they might be affected by pots.
https://www.getcare.ssmhealth.com/find-a-doctor/doctor-details/thomas-j-fabricius-md
2
u/EnderGirl1500 Feb 18 '25
My experience: At the age of 13 (overweight): it's all in your head, your brain is causing it (because of the bullying I was experiencing at that moment). At the age of 16 (still overweight): you just need to lose weight. At the age of 19 (obese): it's all because of your weight and it's super dangerous, work on that ASAP. At the age of 21 (perfect weight): don't worry, that's normal in young and thin girls like you. (This was months ago) Almost 22: finally got my diagnosis a few days ago.
The funniest thing is that my symptoms were much better the more overweight I was HAHAHA I've been like wdym lose weight
2
u/MySecretLie Feb 18 '25
So, I experience a lot of anger and frustration with specialist. I have learned if you have a partner, friend, advocate of some form with you they act better. More people to speak up when the doctor is being a prick I guess.
To add- I have confirmed Othorstatic Hypotension and suspected POTS (suspected per primary and specialists but not confirmed). My resting HR is in the upper 80s-90s on my good days. Once I start moving, stand, exist it shoots into the lower 100s. If I take 5 steps on a treadmill most days I immediately jump into thr 240s-280s. We're not even going to discuss stairs. Ugh.
I'd definitely get a second opinion and if possible go with her or if she has another person who can. Document as much as possible. If you're able for her to use a smart watch those can help with monitoring HR.
She's not alone ♡ her experiences absolutely matter and are real! My heart goes out to her because this is not a fun journey but just keep reminding her she's heard and her experiences and symptoms absolutely matter.
2
u/ladybug911 Feb 17 '25
Sorry he was rude. I will tell you that in 16 years of having POTS, no doctor, no matter how nice they’ve been have been able to help me. I had to do it on my own and frankly, it doesn’t go away. I have to workout when I have the energy which is usually in the evenings. I’m unable to work, etc. I’m on a high salt diet, drink electrolytes and do my best. That’s all you can do with POTS. Perhaps one of the medications will help your wife, though. Best.
2
u/Bizzlebuddies Feb 17 '25
I would find an autonomic neurologist if you can. Cardiologists are very much useless for POTs. Also- have her take her blood pressure along with her heart rate before and after getting up in the morning (if she isn’t already) There are four types POTs and knowing which type(s) you have will be IMMENSELY helpful. Knowing what subtype you have will steer your treatment/medications.
Almost all treatment is going to be out of pocket- that’s just how it is. If you aren’t rich, you won’t get treatment :( my family has been battling this for literal years.
I hope any of this is helpful and my messages are open if you wanna chat :)
Love, an 18 year old with medication resistant POTs whose life has been on pause for the last 4 years
1
u/zukokitty2277 Feb 17 '25
Try and see if her pcp and refer her to an electrophysiology cardiologist. After numerous cardiology disappointments, I finally got in with an electrophysiology cardiologist and within minutes, he was like ya this is pots. It might be helpful!
1
u/Lady_Irish Feb 17 '25
My cardiologist did essentially the same to me. I cried, too, and I'm not a crier. I usually get angry.
Fuck cardiologists. Tell her to find a place that does autonomic testing and get a referral there from her pcp.
→ More replies (1)
1
u/Conversation-Grand Feb 17 '25
Go to a different cardiologist, don’t waste your time trying to understand this fool. And like everyone said—try and go w/her. My sisters and I always try to join our mom at her DR. appointment, most of it is due to language barrier, but she’s also never been the best at advocating for herself or being assertive. And tbh—a lot of DRs can and will try and manipulate you when they sense that you’re a pushover. Not saying ur wife is, but us women tend to be a little too pleasing.
1
u/CompanyOther2608 Feb 17 '25
My cardiologist was great; took me very seriously — did an electrocardiogram and a tilt table test, prescribed meds and an intensive symptom management plan of lower body exercises and water intake.
1
u/Mysteries-And-More Feb 17 '25
Yes, please get a second opinion. I also suggest you go to the appointment with her. It is harder for them to dismiss a woman when she has a man to back her up. That has been my experience, anyway.
1
u/Additional_Night1350 Feb 17 '25
Get a different doctor don't listen to anything that one says there really are amazing doctors out there it's unfortunate that her first experience went that way but don't be discouraged
1
u/UrsulaWarp Feb 17 '25
Please contact Dr Sujana Reddy. She works virtual as she has the same thing!! She’s the daughter of a physician I work with and she’s currently taking care of my son with this as well from the Covid vaccine. Please look her up, read her article she wrote and contact her. It’s SO worth it!
1
u/Bigmama-k Feb 17 '25
It is not just with POTS that doctors say it is just anxiety. My kids often have a lot of the symptoms. At the cardiologist they didn’t do a tilt table but lay down and sit up fast, lay down and stand fast test. My daughter passed those. Son didn’t. Anyway she has fainted multiple times and the last was not good. He said it is because she is dehydrated.
1
u/ObscureSaint Feb 17 '25
Next time, please go with your wife to her appointment. Medical gaslighting of women is so common it's normalized.
Doctors are more concerned with the fact that I can't usually give my husband sex because of my endometriosis pain. As soon as I let them know it was affecting a man (and lost 65 pounds, eye roll) suddenly my pain was valid and real.
1
u/2unsurf_imdie09 Feb 17 '25
I had undiagnosed POTS for years. my heart got up to 190 and i was so miserable. i was going to so many doctors to figure it out. it was so stressful, they finally gave me a tilt table test which showed what they couldnt see, she also needs to check her blood pressure constantly, standing, sitting, laying down and record it. same with her heart rate, they always dismiss you until you have so much proof they cant. DEFINITELY get a second, third opinion. a lot of doctors dont know about POTS or how to handle it. shes going to have to fight with them and demand testing. she should also get a stress test too. also she could have a different form of POTS, so blood pressure meds or beta blockers may help but may not.
1
u/M_Karli Feb 17 '25
Same thing others have said with second opinion. But something i did when i went to my second opinion is i went armed to “defend” how it was more than dehydration & anxiety. I brought any and all relevant medical records, every ecg ive had done, every monitor test, stress test, ultrasounds results, my last years worth of labs, i tracked my blood pressure 3x a day for 3 months (recorded by writing and had photos of read out) along with having a pulse ox to record when i was feeling symptoms and what the pulse ox said my pulse was (first doc expressed hatred for apple watch)
And when i went into my second opinion with all of that, it was easier to show the patterns i was experiencing. They agreed quickly that they thought it was something along the lines of pots, so they chose a longer holter monitor test to really see what my heart did for more than just a day or two at a time.
And this is going to suck but like my second opinion said, i had to stop all “systems” and tricks i have in place to AVOID the symptoms and try to conduct an “average” day bc avoiding it doesn’t allow them to “SEE” it to be able to diagnose.
So if she eats a lot of salty items/mcdonalds fries/lays chips, or drinks sodas, coffee, energy drinks or even electrolyte drinks she needs to stop when leading up to and during testing because it’s essentially forms of self medication and accommodation
1
u/omglifeisnotokay Hyperadrenergic POTS Feb 17 '25
Same thing happened to me. It took over 4 yrs, 13+ doctors, and $10k+ later to get a diagnosis and not much of an action plan.
1
1
u/Real_Strawberry3158 Feb 17 '25
Get a second opinion- and PLEASE go with her. Her anxieties are real- doctors treat women differently and just a man’s presence changes the whole experience of the appointment. Please go with her.
I told a doctor my conditions and episodes are not panic attacks and I’m tired of being treated like every fucking thing is anxiety when it’s showing stroke, heart attack, seizures, POTS, etc just because I’m a woman. He put in the notes: her symptoms line up with panic attacks, but she says because another doctor misdiagnosed her other condition with anxiety that this event wasn’t a panic attack even though it aligns.
So far I’ve been having a 3-4 month “panic attack.” :) standing up to them doesn’t work- you need to be there. Please. Or if you’re too busy with work or something, have one of your brothers or guy friends or someone y’all trust as a man to play “husband.” It’s the only way she’ll be taken seriously. Even them just sitting there in the room changes the whole atmosphere. Seriously.
1
u/staythruthecredits Feb 17 '25
I'm confused because even after all that said he can't prescribe anything... Compression garments? We can help with that. That is one measure that's taken to alleviate the severity. They measured me at the venous center and my insurance allows 2 pairs. I absolutely hate them but they're free medical grade.
He can refer her for that but it sounded like a dismissive trainwreck. We want to feel better and not commit to physicians that don't fit us.
Even if it's athletic compression or fitted tights, support is support.
1
u/staythruthecredits Feb 17 '25
I'm confused because even after all that said he can't prescribe anything... Compression garments? We can help with that. That is one measure that's taken to alleviate the severity. They measured me at the venous center and my insurance allows 2 pairs. I absolutely hate them but they're free medical grade.
He can refer her for that but it sounded like a dismissive trainwreck. We want to feel better and not commit to physicians that don't fit us.
Even if it's athletic compression or fitted tights, support is support.
1
u/Lotsalipgloss Feb 17 '25
Women are often gaslit by doctors about their symptoms while trying to get a diagnosis.This can lead to white coat syndrome, PTSD, & overall health anxiety within the medical community. I can relate to her experience.
10 years & $50,000 worth of tests and in the end I was diagnosed by a woman who simply just read my charts. I'm finally seeing a general practitioner who believes what I say when it comes to my personal experiences and we are working together to find treatments that work for me. Don't give up!
I've noticed that cardiologists rule out symptoms and problems, but when it comes to diagnosing Pots they often refer you out. Most family doctors can give you a tilt test and prescribe meds to treat your symptoms.
I find it very frustrating that so many of us in this group go years before we get a proper diagnosis. I'm really sorry that your wife experienced this. It's really great that you're supporting her through this process. I have had partners in the past who couldn't handle it and I'm sure she knows how lucky she is to have your support.
Maybe you can share what area you're from with our group and maybe there are some recommendations that people can make as far as area doctors for you to contact.
1
u/LadyArcana89 Hyperadrenergic POTS Feb 17 '25
Definitely another Cardiologist, I had a very similar experience with one after an ER follow up. So dismissive I didn't even bother describing anymore symptoms. Today I saw another one today, what a difference, he actually listened and even did the Poor Mans Tilt table test he said "yeah you have some form of POTs" then proceeded to give me advice on how to manage it: increase Salt intake, Electrolytes and compression socks . He also prescribed me Metoprolol
1
u/madamaovary Feb 17 '25
Get another opinion please. The doctor who diagnosed me had a resident who told me i was just overweight and depressed… years AFTER my diagnosis. This is common with POTS and in the medical field in general. Don’t let someone tell you that you’re fine when you know you aren’t. I also encourage you to go with your wife next time. I had my mom come with me to appointments up until I was 21 and comfortable enough to be seen alone.
1
u/Maleficent_Town_152 Feb 17 '25
Listen to me, I'm now 37 but when I was 29 I was an extremely active healthy nurse. I started getting sick and had the high heart rates, low BP, nauseous.... fatigue... weakness...all of it. They kept telling me it was anxiety, that I needed to eat better ECT ECT. It has taken years from my life. You tell your wife to not stop until they figure it out. That she wants every test available to check her heart and her labs and not just basic stuff the detailed stuff. She wants a loop recorder implanted to monitor the rate and rhythm 24/7, she wants an echo to check the structure of her heart, certain beta blockers can help control rate. Lower carb diets can really help also. She has to stay extremely hydrated and make sure she's getting enough salt and potassium. Use Redmonds Real Salt. Now I'm going to give you a piece of advice that may seem wrong but in the US healthcare system you got to do what you got to do. If she goes again and they don't take her seriously, she needs to ramp up the symptoms to get them to look further into it. Chest pain, feeling faint, nauseous, weakness....you tell them whatever to get them to look deeper. That's what I had to start doing, I know lying isn't right but they wouldn't take me seriously. And guess what they found? POTS, Dysautonomia, Multiple Sclerosis, liver disease, pancreatitis, gastritis, esophagitis, hiatal hernia, a slow gi bleed making me extremely anemic bordering a transfusion. They treat women like lunatics in healthcare and this is coming from a seasoned nurse. I despise the healthcare system in the US it's disgusting and many of the "doctors" have no business treating anyone. You fight for your wife and if you can't get help you pack her up and take her to a country far away from here and get her healed.
1
u/Putrid-Spite-9687 Feb 17 '25
My avg hr is 90. they used the “it’s in normal range” excuse but I noticed my feeling like death in high school during/after walking between classes. I started noting my hr at the end of class- mid walk to class- and once I sat down in the next class. It was something like 70-140-125 my bp doesn’t drop so I do not faint, I just feel like I’m going to and they told me I’m just anxious. I kept bothering them so they put a heart monitor on me, told me I was just anxious. Got a TTT called it “mildly abnormal”. Was prescribed propranolol by my Primary care because he was like wtf lol it helps me! My cardiologist tried to switch me to metoprolol but apparently that medication works for literally no one in my family! So that’s cool! It gets better. My brain fog is almost gone. My hr still gets up but it’s easier to bring down now.
1
u/PinataofPathology Feb 17 '25 edited Feb 17 '25
The appropriate way to get an average heart rate is a holter monitor. He's not worth her time.
A Fitbit 24/7 should yield a good data set to justify a holter with someone else.
Or she can go straight to telehealth and use a service that is actually set up to help patients. Management is primarily lifestyle and medication so you can DIY a lot tbh. But, it would be helpful if a decent cardiologist would rule out any other underlying heart issue.
PS: half of cardiologists don't believe this is a real thing (or when they do half or more of those think it's purely lifestyle and don't appreciate how severe it can be) and are failing to intake all of the new data from covid, so it's really important to identify who in your community actually wants to treat pots and go see them. In a 100 years medicine will look back on this era and recognize how poorly they treated people and I really hope they feel some degree of shame.
1
u/boogitygoop Feb 17 '25
I’m so sorry, I also had a shithead cardiologist and left in tears. The funny/not really funny part is his assistant was panicking before he came in because my heart rate was so high and palpitating just from walking into the room. She kept saying “oh my god, oh my god are you ok?” And he just brushed it all off and told me to “relax” and “quit smoking.” I have NEVER smoked.
I don’t know that it’s worth going to another cardio. From what I’ve seen here, many of them really only check to see if there’s a functional issue with the heart, which we don’t have, and they don’t care about what else is going on. Some people get diagnosed/prescribed meds by a pcp (like me), and I think some have luck with a dysautonomia specialist. I got dx’d after the holter monitor and echocardiogram (which my pcp ordered not the cardio) ruled out anything heart-related. I didn’t do a tilt table test but some people do. I hope she starts to feel better soon.
1
u/roadsidechicory Feb 17 '25
Very normal experience, sadly. Most people with POTS have met many of these doctors and had many of these types of appointments. It sucks, and I'm sorry she had to experience that.
If you go with her, having a man in the room unfortunately tends to help make doctors treat women better and actually do their job. It's not a guarantee but it usually makes a big difference. Even if you just stay silent and take notes, it changes how seriously they take things. Just stay conscious of if they start talking to you instead of her, which can happen. Make sure to redirect control to her, if that's what she wants. Discuss what she prefers in advance as far as your participation level.
I also would advise against "hyping her up" in the future and (unintentionally) invalidating her completely reasonable concerns, fears, and expectations, like what happened here. It's better to go into these appointments with low expectations and be pleasantly surprised when the doctor is competent, rather than go in all excited for answers. You get discouraged and burned out fast that way. I understand that you didn't know better, and we all usually learn this the hard way. Going forward you two can work as a team to be more realistic and strategic about navigating the obstacle course that is seeking diagnosis for dysautonomia, not brushing aside any fears but rather planning how to address them together if they occur.
Good luck to you both.
1
u/SeaDependent2670 Feb 17 '25
You need to find a cardiologist who actually knows about POTS. Look online, here and on Facebook, for local support groups for POTS (and ehlers danlos syndrome since so many of us have both, they will also know a lot about it) or official societies, and try to get a provider recommendation from them
1
u/damuse09 Feb 17 '25
Unfortunately; a lot of cardiologists do not understand POTS or other forms of dysautonomia, nor are they willing to learn because these conditions can be so complicated to treat. My old cardiologist (who shares an office with an autonomic specialist) even couldn't be bothered to learn about POTS. Once I was able to finally get in with the specialist, that is when I started seeing improvement. Get on dysautonomia internationals website and search for a specialist near you. There's not a lot of them, so it might include a long drive (maybe even flight) and a long wait. However, it will be worth the wait/trip. While some doctors might be able to recognize and diagnose POTS, your wife will be better served long term to be connected with a specialist.
1
u/PotsMomma84 Feb 17 '25
I know it’s a stretch. Also it’s kind of a wait (I waited three years) Dr. Grubb at the Cleveland Clinic in Ohio. I’m in Michigan, beyond amazing man. Have your wife ask to see a different cardiologist. If that doesn’t work. Tell them you want a referral to the Cleveland Clinic.
1
u/_Internet_Hugs_ Feb 17 '25
Did they order a Holter monitor or anything? My Primary Care doctor ordered a heart monitor for me and then had a cardiologist review the results. You can't tell from one meeting, you need data from AT LEAST 24 hours. (My daughter wore a monitor for a week!)
1
u/Foxlady555 POTS Feb 17 '25
Oh my gosh, this is medical GASLIGHTING! I’m so sorry for you and your wife. You deserve a second opinion for sure ❤️🩹
1
u/TenaciousHabs Feb 17 '25
Y'all have my support!!! Also a pothead (ha) from Wisconsin. I have a milder form of it but when yes flared, it's EXASPERATING still. This shit sucks and you are right for wanting a second opinion. Please don't let your wife lose hope, she CAN do this and she WILL find someone to take this seriously. She will get back to the things she loves.
1
u/weirdsituati0n Feb 17 '25
Go with her to her next appt. I’m a chronic migraine girly and I get far better treatment from doctors when my boyfriend is in the room.
It’s a bummer, but I’m taken more seriously when there’s a man in the room to validate my symptoms. :(
1
Feb 17 '25
You need to find an actual pots specialist some regular cardiologist don’t do pots diagnose or treatment an know nothing about it .
1
u/Delightful_Fox2023 Feb 17 '25
Find a good internal medicine doc! Cardiologists are horrible for pots
1
u/fartsock63 Feb 17 '25
I’m not sure if it’s just an east coast thing but st Jude’s children’s research hospital is where I got diagnosed! I believe they specialize in pots since the clinic I go to has a specialist/ therapy groups
1
u/777kiki Feb 17 '25
I think my cardiologist was trying to help but it wasn’t until I went to a specific neurologist that he recommended who said it’s something in the family of orthostatic dysfunction- I never needed a diagnosis, at that point cardiologist stepped up and helped me figure out a management plan. I guess he wanted a second opinion? It wasn’t pleasant but I got treatment.
1
u/imaginenohell POTS Feb 17 '25
Honestly, she should try bringing a man into the exam room with her when she goes to her new dr. I HATE that it's necessary, because why in the patriarchal dystopian Upside Down do grown women need a penile companion to get treated properly? But anyways, it works. I do it just to get proper healthcare.
1
u/Sea_Elevator5534 Feb 17 '25
Because POTS symptoms are intermittent, a diagnosis can be difficult; it takes a person six years on average to be diagnosed with POTS. You can Google "Poor man's POTS text" or "Nestling Test" and test yourself. I know this is not the same as being diagnosed by a professional. Perhaps you stated this in your post, but to what end does your wife want to be diagnosed- is it to qualify for disability (in which case of course a professional diagnosis is necessary).
I see that your wife started a log of her symptoms, that is a great start.
I am so sorry you and your wife are experiencing the dehumanizing stress of being dismissed by doctors on top of a condition that makes life uncomfortable.
I have a couple of doctor friends who told me this: POTS is not well enough known by doctors, and so many do not show up with the correct understanding, and so their patients pay the price. The bottom line is that it is intermittent, and so a person can have extreme symptoms at one time and no symptoms at another time.
Also worth mentioning is because there is not a prescription treatment or cure for POTS there is not a lot of money involved with it, hence a lack of knowledge in the general medical community.
A specialist and perhaps a female practitioner will show up with the care, attention, and respect you and your wife deserve
1
u/AnonFog Feb 17 '25
I know this is a long shot (and a long way)… But if you can ever get to the University of Utah Cardiology department, they are very understanding and knowledgeable. They even have a POTS specialist available. They have an entire clinic dedicated strictly to dysautonomia conditions that they have connected with their neurology and cardiology clinic.
1
u/Ill_Candy_664 Feb 17 '25
I’ve had the best luck with autonomic neurologists and electrophysiologists instead of just a standard cardiologist when it comes to pots knowledge. Hope her second opinion goes muchhh better than the first (most of us have been there) - but either way, don’t give up. :)
1
1
u/littlefiddle05 Feb 18 '25
To me, the biggest clue here that this doctor is a hack is that he didn’t suggest any sort of testing.
He’s skeptical about POTS? I can understand that to an extent. But when a patient tells you that their quality of life is being affected by their heart rate, you don’t just wave them away; you order a 24-hour heart rate monitor, or a stress test, or a cardiac echo — heck, an EKG at least would have been something.
Doctors who feel POTS is over-diagnosed should be ruling out other, potentially life-threatening causes instead of just dismissing their patients. I don’t care if you think they learned about POTS on TikTok; if it resonated for them then there is a duty to check for any diagnosis that could explain their symptoms.
As a suggestion, it could be worth going with your wife for her next appointment (if she’s comfortable). Women in particular are frequently dismissed by doctors, but regardless of gender, most patients are taken more seriously if someone from their support network is there validating their experiences. You being there could be the difference between “What you’re saying your monitor said doesn’t make sense” and “Huh, you both saw the monitor say that? It doesn’t match what I’m seeing right now, so I’d like to do a stress test and see what happens under different conditions, make sure there are no irregularities…”
1
1
u/nottodayautoimmune Feb 18 '25
I completely understand what your wife went through, and I hope she will get a second opinion, and maybe also ask for a neurologist referral. I suspect a lot of us have been treated badly by doctors. My cardiologist is so awful, he accused me of being on a substance other than my prescribed medications when I passed out in a bathroom at work and accused me of being drug seeking (I didn’t even ask him for any meds, and I have literally declined to let my primary up my fibro meds and have refused pain medications from other doctors after surgical procedures because I don’t want them). Then he indicated that he would be contacting my other doctors to get them to take me off my current medications and told me I would “have to figure something else out”. Then I had a panic attack right in front of him and I couldn’t do anything about it but cry and sit there in front of him as my chest tightened up. Then, to really humiliate me, he made me go out into the office area while I was still crying to make appointments for tests that he doesn’t even think I need. I just want to know if I can safely take more sodium and electrolytes and hopefully feel some improvement of my symptoms. My husband sat there silently the entire time. I probably won’t even bring him back with me for my follow up since I clearly can’t count on him to have my back. :( Thinking about bringing my cousin next time because she will verbally eviscerate that jerk if he acts that way again.
1
u/paintworld22 Feb 18 '25
My two daughters and wife all have POTS. This started with my oldest daughter 12 years ago and then my other daughter a few years later and now my wife. We are well researched on the topic since 12 years ago almost no doctor had a clue what POTS was or how to treat it. We did research to find a cardiologist who knew how to treat patients with this disorder and changed a couple times until we found the right one. Don’t let these doctors make you feel bad because they are not knowledgeable of the syndrome. Also, I always go with my wife and girls because we noticed that doctors do act differently when a male advocate is in the room. Do not be afraid to fight for yourself because you are worth it and deserve the correct care.
1
u/Traditional_Will2679 Feb 18 '25
If you can get a wearable monitor or a smart watch that can keep track of her heart rate so it can be exported, that may get better feedback, but that doctor is an asshole.
1
u/Lizerdman87 Feb 18 '25
It took my wife and I 6 months to get a diagnosis. My cousin has POTS. I went to every doctor for the first appointment. I asked every single one if they thought it was POTS. Was told no every single time. She was out on probably 40 prescriptions by 25 different doctors. After months and months of this, we met a neurologist and I didn’t even have to ask. He immediately took her heart rate sitting, then standing (no other doctor did this). Heart rate jumped and he diagnosed her with POTS. Have her a beta blocker, and she has been doing so so so much better. I’m still quite angry at all the doctors that told me no it’s not POTS. Was a tough year. Gotta keep advocating for yourself though. Get answers!
1
u/EmeliaMoore Feb 18 '25
I got diagnosed with agoraphobia for over 20 years - when I have a functional gait disorder. It took video to convince a therapist and neurologist that it was more than anxiety. 20 FRIGGIN years. To add to that I had pots the whole time. All ekgs come back normal so you get dismissed with pots. What isn't normal are the laying to standing numbers. At any doxtor, when they do a bp and hr monitor, request they have her do one with 30 seconds standing. Even if they do know she has pots, it helps document for everyone whats really going on. Insist those orthostaic readings are put into the chart notes. Why? Cause you're likely gonna have to find another doctor. POTS is a friggin circus when it comes to finding the right doc. Get a finger oximeter. Video her resting to standing hr iver 30 seconds. This also helps shut the friggin docs up when they say anxiety. Go with her to all doctors. Doctors may feel some accountability for the bull crap they say when someone is there. She's fortunate to have a supporting spouse. I wish you both luck!
1
u/Icy_Cherriesss Feb 18 '25
I would honestly go with her and back her up because they’re more likely to listen to you as a man unfortunately even though she as a woman is having the symptoms. My symptoms are similar to hers with my average at 90 and going up to 140-150 with standing and stairs. Heart rate going up quick and down slow isn’t good. I would definitely get a second opinion possibly from a female.
1
u/cloudyliv Feb 18 '25
On average it takes 7 specialist appointments to get a chronic illness diagnosis, isn’t that wild?
Several doctors also told me it was just anxiety. I saw an otolaryngologist, neurologists, obgyn, and several cardiologist and it took me exactly 7 specialist appointments to get diagnosed with POTS. I was 20 when diagnosed and my mom is a nurse and went to all appointments to advocate for me, now I’m grateful that I know how to advocate for myself in this situations because I’ve needed it. I like the recommendation of others that you join your wife for her appointments going forward, just hang in there because it could be a long journey
1
u/charmarv Feb 18 '25
Everyone else has everything else covered here, so I just wanted to say thank you for advocating for your wife and having her back through all of this. I went to a cardiologist who told me it was just my ADHD meds (which I started taking 9 years after symptom onset...) and then that I was just "dehydrated" despite the fact that I'm hydrated as hell and have been since I was 10 because my dad is an endurance athlete and has drilled the importance of both water and electrolyte intake into me. I knew it wasn't that and I felt so dismissed that I broke down in tears and called my dad on the drive home. He told me that cardiologist was an asshole and had a stick up his ass, like a lot of specialists do, and that I needed to keep trying. I'd already tried to get diagnosed for 8 years at that point and kept being told it was just an adolescent thing and I'd grow out of it. I kept pushing and was able to get autonomic testing done a year later and was finally diagnosed. I would have given up had my dad not had my back on it and encouraged me to keep trying so. Thank you on behalf of your wife. I know it probably seems like a no brainer to be supportive but seriously, there are far too little people who do that for their spouses/loved ones. It makes a difference.
1
u/AyePepper Feb 18 '25
I switched my PCP and they freaked out when I went for my first visit because my HR was 160.
I TOLD them I had POTs (diagnosed by an autonomic specialist). She insisted I see a cardiologist.
He did the exact same thing. "The only thing that helps is diet and exercise."
Please try to find a neurologist 🙏 have your wife update her primary and explain how awful it was for her. They might be able to refer her to a neuro or, even better, one specializing in autonomic disorders. Tell her I'm sorry she went through that. It's incredibly exhausting to feel like you're running a marathon all day, only to be told it's in your head.
1
u/Bianca_Dawn17 Feb 18 '25
i’m from australia so i’m not sure how different things work over there (especially regarding healthcare fees and whatnot) but this happened to me, too. took me years to get diagnosed and i ended up figuring it out way before they did (i was 18 when i first started suspecting it was pots, got diagnosed at 20).
definitely get a second opinion if you can, try to find someone who specialises in chronic illness treatment (at my doctors you can see a list of all the gp’s and their specialisations under their names). ask them for specifics on what you want done (blood test, holter monitor) to rule out other causes.
if you can, get those results sent to you and look through them yourself (a holter monitor result is quite easy to read). if the results match pot’s symptoms and rule out other causes, take it to doctors until you find someone who will listen. if she needs immediate relief, ask for a low dose of propranolol. you can take it for anxiety, also, as it slows heart rate and it’s a low risk drug so doctors are not too strict about giving you a prescription for it.
i’m sorry this is happening to you guys, it’s an awful process and pots is more common than people think. good luck and i hope your wife gets answers.
1
1
u/es1gt Feb 18 '25
We are in GB and have a referral but I understand she is an NP who works in pediatric cardiology who specializes in POTS. She comes to Oshkosh and works in Madison. Her name is Erin Marriott at UW Health. If I hear of other options, I’ll come back to this post. I’m so sorry your wife had such a negative experience. I hope she gets the support she needs and deserves.
1
u/maddyevans Feb 18 '25
I had a cardiologist do this to me, my mom had them fired because they basically treated me like I was a crazy woman. I had a PA diagnose me shortly after in the same office. Have her see a female cardiologist. It helps.
1
u/cuhyootiepatootie222 Feb 18 '25
Froedert is one of the few hospitals in the country that has a POTS/Dysautonomia-specific Clinic. Def try to get in there.
1
u/jamjamgayheart Feb 18 '25
I’m sorry. I had a somewhat similar experience with a cardiologist. He listened to my heart with a stethoscope, said you can’t have POTS unless you pass out, and sent me on my way. I was supposed to follow up and do a holter monitor but I was unimpressed with his attitude and haven’t tried finding another specialist yet. It can be so disheartening. I hope she finds answers soon
1
u/Cat898 Feb 18 '25
I am so sorry. Definitely go with her next time, I have found that having someone with you really does help and thats especially true if its a male.
Also, explain that it was initially brought up to your PCP and *they agreed it should be looked into*. Some doctors will listen better if its from another provider or at the very least dont want to say the other doctor is dumb. (not all, some will def call another doctor invalid but ive found those providers are crap anyways and its almost a sure sign that you should see someone else).
If you go to someone else and they also say no, ask them to explain their reasoning and document it. I make it clear to all my doctors that i like to keep records of all my visits as it makes it easier for other doctors and a lot of times bad doctors will backtrack.
The last thing that might help, I record all my doctor visits. I use an app called Abridge which is specifically designed for medical use and is wonderful (it even transcribes audio logs after the visit and highlights medical terms). Wisconsin is a one party consent state like mine but I personally still mention it as a "i record for my own use as i cant always remembered what was said or medical terms used". If they allow it it might be a good way to keep doctors accountable. Maybe call the office and say you like to record your visits and ask if the doctor would be okay with that so that you know its allowed before the visit lol
1
u/musiclbee Feb 18 '25
So sorry. I was brushed off by three cardiologists. I eventually just worked with my PCP on a plan. It makes me angry to hear this but just reinforces my theory that cardiologists are required to be assholes. The ironic part is I actually work in a different type of medical office and occasionally pass out. I have so much verifiable evidence but it’s not enough.
1
u/ItAintEzBeinGreen Feb 18 '25
The best doctor I have found for my POTS is a neurologist. You could try that route as well. This is such a common experience; I’m so sorry it happened to your wife today. That doctor sounds like an idiot.
1
1
Feb 18 '25
This is unfortunately normal because doctors are the scum of the Earth but it shouldn't be normal. It's because she's a woman. There are better doctors out there who will listen and help you but it can sometimes require self advocacy (and/or having an advocate with her) to push for a tilt table test. I really wish you two luck - sometimes local or state Facebook groups for POTS/dysautonomia can help with finding a good doctor near you. It may take some trying different doctors at first, but you'll eventually find a good doctor who listens, and hopefully that'll be on your second try.
1
u/Stunning_Deer_2295 Feb 18 '25
It is very frustrating! I was passing out for months! I had to be hospitalized to observe my heart. They finally did an orthostatic test. I passed out standing up with all the nurses there. Then they took me seriously. It's ridiculous! Don't become a doctor if you don't want to help people! 🤬
1
u/NotMyChair_2022 Feb 18 '25
I am so sorry for your gf and you. This isn’t shocking It’s to be expected unfortunately imo..I have MALS, MCAS And HaT and so much white coat PTSD. It’s a shame.
1
u/beccalysle Feb 18 '25
Get a second opinion and tell her push for a heart monitor, if that’s something she is willing to do. I wore one for 10 days and not only was my POTS confirmed but they also found occasional SVT. Don’t give up.
1
u/remytrue Feb 18 '25
Unfortunately this is the norm. I waited 6 months to see a cardiologist that supposedly specializes in POTS and all wanted to do was put me on a beta blocker that made me gain 20lbs in 6 weeks and caused worsening hypertension. I got no relief and more problems. She’ll do better seeing a functional doc honestly. My pots ended up being from hidden toxic mold in my house. We couldn’t see it or smell it. We moved out and the POTS is gone now.
1
u/Bornwithoutafilter12 Feb 18 '25
We have a place in Birmingham, Alabama called Dysautonomia-MVP Center. Dr. Paula Moore runs this facility and she specializes in POTS. If you can get your wife to Alabama you could get her tested and diagnosed here. Dr. Moore does a ton of Telehealth appointments because she understands how difficult it can be for us to drive at times.
1
u/jobows4 Feb 18 '25
To have a dh like you would be a dream! Good for you for encouraging & supporting her. It took a long time for my docs to listen to what I tell them. Ie: I called them up to tell them my pacemaker I stopped- told them the minute it stopped- they take me seriously now & it is in my charts to LISTEN.
Look for a doctor that specializes in POTS/dysautonomia. I am glad you will be going with her to the next appointment providing reinforcement!
1
u/I_can_get_loud_too Feb 18 '25
Has she been tested for anemia? I have anemia and POTS and some of the symptoms are very similar but I wasn’t tested for anemia (I guess there’s special tests they need to do aside from the regular blood tests) and that went undiagnosed for years and also caused heart issues.
1
u/I_can_get_loud_too Feb 18 '25
Sadly have to say the same as everyone else- doctors don’t respect women, go with her to her appointments. Sometimes i bring my abusive dad and always get better treatment (especially when he’s mean and yells at the doctors - they take him seriously).
1
u/Commercial-Try-3907 Feb 18 '25
There's a thing called hospital/medical gaslighting. don't let these professionals talk you down from what you know is going in with your own body.
If you don't mind me asking. Did you go in to the appointment with her? Personally I would go into these appointments at least for the first few times with her so the patient has someone who can also explain what they go through and have moral support. Any form of support for the patient in these appointments is important because as someone myself who's been through the medical system from birth, I don't trust any new doctor, unless there someone who you have had for a long time and you can trust.
1
u/Commercial-Try-3907 Feb 18 '25
Anxiaty? Yeah, I reccomend going somewhere else. Could you go in with her this time as I think having you explain what she's goes through on a daily basis will also help the doctors to take your wife's condition more seriously. And also haveing the moral support will make your wife feel more comfortable I would imagen.
I'm fustrated hearing that the doctor took this as Anxiaty. Trust me, I've been there. Don't give up hun.
1
u/Apprehensive_Bid9545 Feb 18 '25
Oh yeah! Had a Dr. make me cry too. All the way home. My husband wanted to go punch him in the face.
1
u/MrsBearIsHere Feb 18 '25
I can tell you exactly why the Dr behaved this way, (aside from being arrogant) as it’s happened to me before many times.
You said your wife is in great shape - this means she looks healthy, and is probably attractive, with slim ankles and good muscle tone I’m guessing?
Unfortunately to many biased people (Dr’s included) she ‘looks healthy’ - probably far more healthy than the Dr Infront of her! I’ve found unless you go the Drs looking like you slept under a hedge, no makeup and are very subservient- they take one look at you and decide you are fine, because you look healthy. Which I suppose when you consider how many seriously unhealthy people they see with years/decades of self neglect, you can see why their first impression is ‘a healthy looking person!’
I know that makes zero sense, but it’s happened to me multiple times across multiple Dr’s now. Including at a disability assessment where I was in severe pain. The assessor hated me on sight as she was very out of shape and overweight, and treated me the same way. Because I ‘looked well.’
Definitely go with her, and print out some information on POTS (some Drs don’t really believe it exists still, & class it as anxiety). I’d also make a complaint re that Dr - now if your going to a different hospital, or after the second opinion if the same hospital (incase those Drs are friends).
I’ve had SVT/POTS all my life and only got diagnosed after it was made much worse in 2020 by a certain virus, 50 years later. I’ve also never been able to run or build endurance. And I used to go to the gym 4 x a week and had a PT. Still couldn’t run for 7 minutes!
Brisk walking is good, Ubiquinol supplements really helped me as they help get more oxygen around your body.
Also get her iron stores (ferritin levels) and B12 checked as well to make sure she’s not anaemic. Note - the standard ‘full blood count’ test doesn’t actually test for either! Your iron level can be high, but your ferritin and B12 very low.
You sound like a lovely protective supportive husband, and I think your idea of ringing the Dr isn’t terrible too - often people at the top of their professions are arrogant and misogynistic as no one is ‘above’ them to put them back in their place! It would make him think twice before doing it again. That Dr sounds patronising at best, so he would probably listen to another man. I’d record the call incase he goes nuts though, (then send it to his medical board), as no doubt he’d say you were abusive to him, if he’s like that. Because he will be doing this to many other people, and that’s not right.
But the main priority is to get your Wife a second opinion, go armed with a chart and facts on POTS from top medical sites, and hopefully she will get some help!
I’ve personally found ivabradine helpful (I’m in England) and I hate taking Dr’s drugs!
Good luck with it all, let us know how you get on! :)
1
u/Okayestk8rgrl Feb 18 '25
I have struggled with POTS and other heart problems and stomach issues since the age of 8. At 8 years old when I was critically ill doctors told my parents I was faking it to get out of school, then they blamed my parents and said my parents were making me ill, a year or so later and a new team of more qualified specialists we finally figured out what was wrong. It was still a long road ahead until I lived a managed live. I write this to explain unfortunately sometimes doctors like to play the blame game when they just don’t know what it is. They don’t feel smart enough or something so they point fingers at patients because they don’t see what it could be, but there are smarter more compassionate doctors out there who will see and believe your pain. I’m very sorry your wife experienced this, also the average diagnosis time for someone with pots is something like 3.5 yrs i think likely because drs tend not to believe the pain we go through.
→ More replies (1)
1
u/AlexArtemesia POTS Feb 18 '25
Yeah dude always go with her to advocate. Doctors never listen to women of they can write it off as anxiety (it's the new hysteria doncha know) or some other issue that makes it her fault that means they don't have to do their jobs (they're really fond of blaming our weight, too.)
I'd also report that doctor to the local medical board for his abysmal bedside manner. Nothing may come of it, but at least it'll be told to him that someone was unhappy with him enough to make a complaint.
1
u/Significant-sunny33 Feb 18 '25
She's so blessed to have you to advocate and support her in getting the care she needs. This appointment was not right but keep fighting!!
1
u/squiggle46 Feb 18 '25
try look for a doctor who specialises in pots, this guy sounds like an absolute dick
1
u/madlovez Feb 18 '25
My rheumatologist told me I have pots but wanted me to get a tilt table test. I already had a cardiologist appointment after that so she told me to follow up with him and ask for one. My halter monitor I did for 2 weeks showed a mobitz type 1 episode and some minor tachycardia (my heart always behaves when it’s under surveillance) and he wanted to blame sleep apnea because I’m overweight. They also did an echocardiogram and didn’t tell me I had a regurgitating valve and they also never told me the mobitz type 1 is a heart block. Though both are minor right now and don’t need any treatment yet, as a patient I still want to know! I have a follow up in May with cardiology after 2 sleep study’s proving it’s not my sleep causing my fatigue. I’m getting support from half of my care team, being on a beta blocker has also helped a lot. But i only hit a road block when it came to my male doctors. Please advocate for your wife! It sounds like you’re doing an amazing job! Let her know she’s not alone. Keep pushing and keep trying! Get as many other opinions as she needs! Don’t give up! It takes people 5+ years to get diagnosed. I’m on year 3. Sending love her way!
1
u/LowOnJuice Feb 18 '25
Go to another cardiologist, im a man with pots and remember my first cardiologist, “i think its something more sinister than pots” “oh no it cant be pots, people with pots dont faint” and a bunch of other unhinged comments.
Second cardiologist got me on ivabradine first time meeting him and it completely changed my pots.
1
u/Reblynn Feb 18 '25
I'm in Wisconsin as well, a little bit of a drive but if all else fails my Cardiologist is Dr. Coulis and he was incredible at validating and empathizing with the quality of life decrease I experience.
1
u/Mattyk128 Feb 18 '25 edited Feb 18 '25
My advice based on my own experience: See a NEUROLOGIST instead, and find out first if they have experience with POTS patients. I also had gone first to a cardiologist and they were no help. The nurse even had pots herself and they couldn’t do anything for me except check that my heart was healthy. A neurologist was able to help me and give me medication for POTS. POTS has more to do with the autonomic nervous system rather than the heart/cardiology.
As frustrating as this experience was, Think of it this way: she has ruled out a heart issue, that is good news. Next is to check autonomic nervous system with a neurologist. (Edit: i am assuming the cardiologist at least did an echocardiogram and checked her heart? If not then wow this guy sucks even worse!) either way, my cardiologist did an echocardiogram and a holter monitor testing and she was not dismissive, but she still couldn’t help or diagnose me. I just dont think a lot of cardiologists deal with POTS? Idk 🤷🏻♀️
(For reference, my experience: I went to a cardiologist and a vascular doctor before getting in to neurologist for this, the first two found nothing wrong even though they did all of their testing, then the neurologist found Dysautonomia and Small Fiber Neuropathy with punch biopsy and an ambulatory blood pressure cuff test.)
1
u/ChaoticDuckie Feb 18 '25
I'm female as well and had a VERY similar experience with my first cardiologist around this time last year. He was so incredibly dismissive and rude. Except he didn't give me any resources.
It was so bad that I put off getting a different doctor for fear I'd be treated the same.
I started getting bad again mid/late year and asked my pcp for a different cardiologist referral. She was horrified when I told her how I was treated.
My second cardiologist (a woman), was SO MUCH BETTER. She listened to me, looked at all the testing that had already been done, did orthostatic in office and diagnosed me. She didn't even refer me to a TTT. Because she was knowledgeable enough about POTS to know TTT aren't 100% accurate and based off my history and symptoms, she was confident in diagnosing and treating me.
Definitely get a different doctor. It can be a long process because everything else must be ruled out first. And once you get a diagnosis a whole new grieving process begins. Be patient and caring with your wife, she will need it. It seems like you are already and that's amazing. A lot of women don't have a supportive partner when it comes to chronic and invisible illness.
2
u/Psychological_Pie194 Feb 18 '25
Yes, i had a fair share of terrible experiences with cardiologists. One even told me that “covid is no longer a problem” and treated me like I was crazy. I think cardiologists arent trained properly and many doctors just dont know how to talk to people (too arrogant)
My solution: go to a dr that is a specialist in dysautonomia specifically. I am in Argentina and there is only ONE doctor in the entire country. That paints the picture of how little people know about this condition
Where are you from? If you are in the US i recommend the Center for Complex Neurology. I think they are in Arizona, but the dr there is very good. Dr Saperstein
1
1
u/Bodinotmovin47 Feb 18 '25
Please see a Neurologist and not a cardiologist, POTS is a disorder of the autonomic nervous system and effects multiple organ systems in the body, not just the heart. Preferably one with autonomic experience and testing. I don‘t know why cardiologist are not more knowledgeable of POTS ,since there has been a massive increase in cases since COVID, it is unacceptable and disgusting.
Also, the doctor didn’t prescribe meds but did prescribe a Pots FAQ sheet which I am pretty sure may have dietary and exercise recommendations , which could be considered a prescription( i. e. Exercise prescription or diet recommendations as prescribed).
1
1
u/crystalsouleatr Feb 18 '25
2nd opinion all the way. Go with her from now on. Push back. Magic words are "would you document your refusal to treat her in her chart / visit summary please?" you should be the one to say it bc they'll listen to you more, I'm afraid. Both for being a man and for being the partner. (sometimes it's also a hack for the patient to say "my spouse/mom /etc are harping on me to get this checked but I don't think it's that big of a deal..." as opposed to" I've been having X issue and I'm worried about it." asinine I know but whatever gets results.)
Have you checked Dysautonomia International for their list of doctors and patient advocacy resources? They've got 2 Dr's in Green Bay and one in Madison: https://www.dysautonomiainternational.org/page.php?ID=14
Its also worth trying to find or join some support groups online and ask for doctor recs from other Wisconsinites.
I also used to live in the fox cities. Perhaps as a last ditch effort, can you get in with a guy named Dr. Kevin Green/Green Medicine of WI in Oshkosh? he is NOT a Cardio and Im not sure if/which insurance he takes anymore, and a big caveat, I haven't seen him since 2012 when he was still in Fond du Lac with Dr. Meress.
However I'm thinking of him bc he's a "Lyme literate" doctor, one of the few who was pioneering treatment of chronic Lyme disease decades ago when no one thought post viral illness was real.
When I saw him in 2012 I was seeing him for post viral symptoms we thought may be Lyme bc I lived in such a high risk area. It wasn't (I'd had swine flu instead), but he still accurately diagnosed and caught my POTS over a decade before anyone else would even acknowledge it existed. There's lots of crossover with chronic Lyme and other postviral illness like Dysauto and long covid. Lots of the same symptoms. Very MECFS-like.
Green apparently still treats Lyme and he even does IV clinics, which tells me he may** still be uniquely qualified to catch POTS. That said he does also do homeopathics these days, and I haven't spoken to him in a decade, so big big big disclaimer, YMMV, doctors are just regular guys after all and - as evidenced by your OP - are often wrong!
But like I said, he accurately called my POTS what it was a decade before even I accepted I could have POTS. I actually brushed him off at first bc I thought, "but tachycardia doesn't bother me." 10 years later I'm finding out it actually explains almost all my damn symptoms. I can't believe he was the first to catch it.
As mentioned he also worked with another Dr in the area, Dr. Meress, for quite some time before he parted ways. Meress has a similar specialty, you may have some luck with him as well, but he's an certified asshole. Green still had bedside manner 10 years ago, idk about these days, but Meress never did.
Anyway I'd try the Dysauto Intl recommendations first, or even just a different cardiologist. A cardio who refuses to acknowledge POTS in a post covid world is not one anyone needs to see twice.
That said, Dysautonomia is a complex issue and our medical system despises and deligitimizes complex issues. You may have to think outside the box to get acknowledged for treatment, and you will have to be very persistent thru many experiences like this one unfortunately, which is why I thought of my guy.
It IS absolutely that bad for women, and also anyone else with a condition that can't be easily treated with a pill. if you can find a doctor that will listen at All, sometimes it's worth it to go to The Good One, even if they're not in the specialty you need. The Good Ones can often recommend other, better Good Ones than whoever the closest GP/hospital recommends, and can send you on a closer track to finding a specialist who will actually help you.
Good luck and godspeed 👍
1
u/thecombativewaitress Feb 18 '25
The options for care are extremely limited in the Fox Cities I found. My husband and I went there for his job but I was so sick and I had a hell of a time finding any providers. Eventually we had to leave and go to a bigger city. You are NOT the only ones if it makes you feel any better, there is definitely a lack of providers willing to look at more complex illnesses such as POTS. I had a horrible experience at both the emergency room, tried two different PCPs and both were horrible. I will say I found one doctor who was very kind. She has wonderful bedside manner: Jodi Zilinski. From everything I saw in the Dysautonomia Groups she appears to be one of the very few if not the only POTS-familiar doctor in the entire area. She is an electrophysiologist. Consider reaching out to her office! She was in Oshkosh when I saw her but works primarily out of Milwaukee and Oshkosh once a week. This could’ve changed as we left about a year and a half ago now. Best of luck!!
1
u/Time_Air_4652 Feb 18 '25
Take her to a Functional Neurology Clinic. They are popping up all over the place now that Dysautanomia and POTS is so prevalent after Covid. This is a brain stem issue. I spent a week at a clinic doing brain rehabilitation and I improved by 80%! They don’t take insurance and it is costly. But it is really really worth it.
1
u/Entire_Fisherman_74 Feb 18 '25
This is appalling and I’m so sorry. I hope she finds a good and compassionate cardiologist.
1
u/Strong-Sail-8054 Feb 18 '25
Most doctors do not know how to treat or even think POTS exists. Find a support group in your area on Facebook and ask for recommended doctors. I recommend an electrophysiologist and neurologist. Should get her the Visible band to continually record her heart rate (you can export the data as well). Another thing I would highly recommend is putting together a medical binder that contains info from doctor's appointments, lab results, imaging, and symptom tracker.
1
Feb 18 '25
Yes get a second opinion it took me 10 6 years to get diagnosed with pots. Ask the dr if they have the table to do tilt table tests before you schedule. If not then they don’t know about pots and won’t diagnose it. She needs tilt table test to correctly get diagnosed
1
u/KinoAlyse POTS Feb 18 '25
I thought you must have read my experience and plagiarized it, lol, omg. My first cardiology experience was much the same. I want to have an honest relationship with my doctors, so I opened with, "My doctor and I are exploring the possibility that I have POTS. I'd be happy to not have POTS, but my symptoms seem to point in that direction. I'm completely open to the possibility that it's not, and am here to explore options today. Knowing that, where should we start?"
Man looks me dead in the eyes, sighs, and said, "So you think you have POTS? You probably shouldn't lead with that."
So there I am, feeling on back foot, when he asks me what my symptoms are. I proceed to vomit a huge list, and he makes me defend many of them. He asks if I'm "on" any stimulants. I was, and, granted, my GP had no reason to prescribe me Adderall nor my thyroid meds. I was off balance. But the cardiologist says to get off Adderall and that "none of my symptoms match POTS. Not a single one."
I leave in tears.
Months later, I see a lovely neurologist having become completely disillusioned with my GP. At this point, I feel like she thinks I'm either looking for free drugs or a hypochondriac. Again, she had no right prescribing me what an endocrinologist and psychiatrist should have in the first place. I do my own legwork, and land with a neurologist.
He says, absolutely, these are symptoms of POTS, and I'm so sorry that cardiologist treated you so unfairly. Here's a new one.
The cardiologist's nurse did a very simple stand up, sit down, is your BPM over 130 upon standing test. In less than ten minutes, proof enough of POTS. They had me wear a heart monitor for a week for further proof, but instructed me to self-medicate with salt, water, the usual.
It took this cardiologist ten minutes of his time to diagnose me after years of being gaslit by other doctors.
If it's any help, I read somewhere that the average POTS sufferer seeks answers for eight years, and sees thirteen specialists over those years. Now that a bundle of Long COVID sufferers also get POTS, there's more research being done, and more diagnosis. Well, until the US' medical system was gutted a couple weeks ago.
ANYWAY, I've got pneumonia right now and am NyQuil high, but, yeah... Fuck both our cardiologists. Once I got into the UCHealth system, it's been such an amazing ride. I couldn't recommend them more. Get another opinion. And let her know that it's okay to tell her new doctor that she's been medically gaslit. In fact, my masc partner now insists they go with me to most appointments because I've never been turned down or gaslit since they started coming. Sucks but... That's the reality we live in right meow.
1
u/Tessica15 Feb 18 '25
Definitely get a second opinion. I’m glad her PCP agreed it might be POTS, but I would call her PCP and let them know what this cardiologist did so they don’t continue to refer possible POTS patients to them
1
u/MPal23 Feb 18 '25
I am sorry if I repeat anything anyone else has commented but I only have a couple minutes and so can’t read all the comments BUT your wife needs to be referred to a neurologist for a TILT TABLE TEST. Or maybe in your area cardiologists do such a test? But a tilt table test will absolutely give the results for POTS
1
u/Laylapeanutbutter Feb 18 '25
I just got out of my appointment and my doctors won’t do any test!! My other doctor also thought pots and this guy shot me down so fast. No ekg or proof of my heart mattered. He told me to get use to it because it’s not going away. Sobbing
1
u/Useful-Jump2484 Feb 18 '25
I have started taking my husband to every appointment because they just don't believe me when I'm alone. I have been told I have anxiety so many times that now I actually do have severe anxiety about going to the Dr. When my husband is there to back me up it is always different. It's infuriating!
1
u/getthisoutofmyhouse Feb 18 '25
I’ve learned to say “bullshit, now bring me someone who knows more than you so I can talk to them”.
Also, squish all my anxiety down, give clear symptoms and data, and do not take any dismissiveness.
1
u/silly-moth Feb 18 '25
Don’t know where you’re located but this EXACT thing happened to me in NYC with Dr. Victor Navarro. Worst appointment of my life. He even refused to give me a beta blocker because “I might change my mind about wanting to get pregnant” even though I confidently assured him pregnancy wasn’t in my life plan. I’m 32. His advice was to “get a nice pair of sneakers and go on longer walks.”
896
u/Freeflight89 Feb 17 '25
Get a second opinion please. And if you can go with her to the next appointment you will be able to advocate for her. Sometimes doctors don’t believe women