Cardiologist Gaslighting Me? (POTS)

Treatment and medication
1

Hi everyone,

I’m a 24-year-old male just looking for some advice around whether or not I should continue pursuing a diagnosis of Postural Orthostatic Tachycardia Syndrome, any advice would be very appreciated. I have seen two GP’s that both had never heard of the condition and now two cardiologists. The first cardiologist I saw would not even begin to look into it and told me to find a cardiologist that knows more about the subject. The second cardiologist did not even want to give me the time of day for a proper tilt table test and just told me my issues are anxiety.

I have only been so convinced I have the condition because someone I have now cut ties with told me they are 100% sure i have the condition (they also have POTS). Since knowing this person I have tracked my heart rate on three different brands of sport watches and have been tracking it for the past 4 months on an apple watch. My heart rate increases by 25-130+bpm upon standing and then settles back down to a more reasonable level, this varies so much depending on the weather and is much worse on hot days.

My other symptoms include:
Chronic Fatigue
Insomnia
Heart Palpitations
Varicose Veins (first got them at 17 years old)
Light-Headedness
Dizzness
Onset of Passing Out (I have never properly passed out from it)
Terrible Circulation
Hot/Cold Sweats Throughout the Night
Blurry Vision on Hot Days
Anxiety
Tremor
HR that can reach 200+ bpm on a light workout depending on weather
Constant need to nap, some days needing 3-4 hours of sleep during the day
Can’t focus on my School/Uni work unless I’m lying down in bed

I have dealt with all of these issues since I was about 13 years old and I am now stressed as it has been a 6-month period in which I have found out absolutely nothing. I recently had a holter monitor test which only lasted around 20 hours before they wanted it back, and the cardiologist told me that everything came back good. I am a little unsure of how that would have been a good indicator of the condition, as the test does not record posture. The test still showed that my heart rate jumped from about 55bpm to 130bpm when I stood up in the morning as well as probably around 30-40 other times my heart rate jumped upon standing sometimes up to 150bpm (my symptoms were very mild on the day), but the cardiologist still did not see issue. When asking about the link between varicose veins and POTS he shrugged his shoulders and at one point said “well if there is anything wrong it’s probably manageable anyway”

I have been very upset about it because of the stress it has caused me and I feel like I have been not taken seriously by the cardiologist. My first visit to him he asked me to lay flat and then checked my heart rate when I stood up, which on the day it went from 88bpm to 118bpm which he said is close but not enough for a diagnosis. The only issue I have with that is that he only had me lying flat for about thirty seconds before standing (my usual HR lying down is between 65-80), not giving my heart rate enough time to settle, I had also been under the impression that an increase in 30bpm is the minimum requirement for a diagnosis anyway?

I had also brought up with him that on days I have consumed alcohol my HR can average around 130-140 bpm, which he said I should look into. I am having a stress echo done on Thursday and another follow up with the same cardiologist in a couple of weeks.

The cardiologist has almost told me nothing over two visits and has not even taken my personal experiences into consideration. I have also never made a formal complaint about anyone ever, but not sure if I should do so after my experience, as i feel like it has drastically affected my health and ability to study. This is especially due to the 6 months of waiting and the fact that he hasn’t suggested any of the proper POTS tests or taken the time to even understand the basic test for an initial POTS diagnosis. He also told me a HR of over 200 while on a very light jog is normal, but from what I’ve read worked out my max HR is 196, indicating that a HR above 200 could be potentially dangerous.

I’m just hoping someone can tell me that I’m not going crazy for thinking that I could have the condition, any help and/or advice would be greatly appreciated.

I can provide any other information if need be, I have screenshots from my heartwatch app also for reference
Thanks, Matt

2

Hello Matt,
So sorry for all you have gone through. unfortunately this the the process that many people go thru to get the diagnosis of autonomic disorder. My daughter finally got her diagnosis after 6 years of seeing every possible type of doctor and endless research on our part on which doctors to see next. when the blood pressure issues finally reared their head she was taken seriously - but not too seriously. She was sent for the tilt test at Beth Israel Autonomic Clinic. Her results were ambiguous and so the clinic did not accept her but simply sent the results to her primary. Needless to say her primary had no idea how to interpret them and sent her to a cardiologist friend who said he knew exactly what it was. My daughter at this point was 19 years old but I still accompanied her to the doctor appointments (we were a team). The cardiologist took 3 months to get into and basically told me (he did not direct any info toward my daughter) that is was vasovagal syncope and simply be aware of your surroundings if you feel faint. My daughter then asked about the chest pain she gets and he turned to her, said ‘Oh that is only when you get anxiety’ and turned back to me. Fact was the chest pain did not come on when she was anxious. I felt the same way you do and considered calling the insurance company to stop payment

My advice going forward would be to find a clinic or doctor listed on one of these websites that works with autonomic disorder and just forget the others. Hopefully you live near one of these doctors. If not a lot of them do telehealth and can possibly work with your GP on testing and such but they should be able to prescribe medication and lifestyle changes for you.
Hope you find what you need.