r/dysautonomia • u/IndependentSad5795 • 1d ago
Vent/Rant Cardiology denial
Hi all. So I have had (assumed) dysautonomia all my life. (But I didn’t know what was likely wrong with me until I did my own research) I began feeling sick in elementary school. All the weird symptoms came and went. And over time they have gotten worse I am now 34 with 4 kids of my own. And I struggle with every issue (I know you all understand) My main issues this last few months have been weakness anytime I exert myself in the slightest. (I don’t lay around) but if I do just a little more or extra- I feel my heart rate increase just like running up my stairs I go from 80bpm to 150. It drops right away again but the sick feelings I get from that- the weakness and tremors. Hello legs. It’s awful.! I can’t do anything without feeling unwell. I’m always nauseous and have over 50 other strange symptoms that just cycle. I get stuck in fight or flight a lot so I lean towards wondering if I have hyper-pots.
But I can’t get a dang diagnosis! My PCP referred me to cardiology as I do have PSVT (can be 250 bpm) as well. And haven’t seen a cardiologist outside of the ER.
Well the whole cardiology office DENIED me. Said that since my referral said possible POTS. They do NOT see POTS patients AT ALL. And that my symtoms can be managed at home. WHAT!!! I don’t even have a diagnosis I haven’t ever had a TTT.!
I called to ask them why they won’t see me being that I don’t have any diagnosis. And they said since my 2 day holter monitor was relatively normal and indicated dysautonomia (heart rate fluctuated from 40 bpm to 190 bpm) and I never exercised at all. They said they can’t see me.
I wanted to cry. I did cry. I was so angry. I told the MA on the phone that I guess I’ll just end up in the hospital because they won’t even give me 10 minutes to have a consult!
Has this happened to anyone ???
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u/MagellansWife 1d ago
I’m dealing with this too, for ~10yrs now since an upper respiratory thing left me permanently deaf in one ear… and have never been able to get help. This is just utterly demoralizing. 💔😭
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u/GalacticHitchhiker 1d ago
I wish I could help more but I can, like everyone else here, commiserate with you. I snuck ahead of a literal 2 year wait to get in to one of the two dysautonomia specialists in my state by being the first to accept a cancellation and what I got out of that meeting was a $500 bill, a lack of interest from the doctor in doing any actual testing, and some lifestyle change recommendations (that, to be fair, Did help me). I'm taking a daily Allegra, a daily vitamin b complex, and Omeprazole for acid reflux/stomach issues. I'm also wearing compression leggings every day, taking Nuun tablets (electrolytes, the doctor basically recommended massively increasing my salt intake), and trying to commensurately increase my water intake which I am better about some days than others. It's never gone but I definitely feel better more often than worse these days after multiple years of barely functioning. I wish you the absolute best of luck and I'm sorry this is happening to you!
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u/PawtyTime 1d ago
My cardiologist told me at annual follow-up (had admitted to only seeing since he signs my Rx) told me “well you didn’t die in the past year so your fine”. The amount of gaslighting in the chronic illness community is insane.
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u/Think_Airline_9685 23h ago
Yes - same as you !!!!!! I saw 2 different cardiologists locally that gave me 2 day Holter monitor, a Zio patch monitor and the several week Holter monitor. 2 different types of Stress test, several EKGs, echocardiogram, pulmonary function test, bloodwork and 6 minute exercise test that watches your oxygen sats/ technician stopped that test after 2 minutes due to heart rate 184.
So that was Cardiology and pulmonologist work up locally. “There is nothing wrong with you.”. “Just tachycardia with No Arrhythmia”. I said “could it be POTS?” They said maybe. Second cardiologist said “oh POTS ? That’s not serious.”
I also went to ER 9 times. Once was from fainting in grocery store and hitting my head. “Nothing is wrong with you “. I could go to ER every day and no help provided.
I kept calling pulmonologist and she finally said we think you might have Pulmonary Hypertension . (That’s very serious and has a 2 year life expectancy).
I had to go to Boston. Thank God I had to go to Boston because they stopped dismissing me ! I had Right Heart Catheterization- in this test your pulmonary artery pressure is measured. Right on the table the doctor said “your pulmonary artery pressure is abnormal- LOW and that’s indicating Dysautonomia.” But Boston cardiologist and pulmonologist said they don’t think it’s POTS but another form of Dysautonomia. I have full Autonomic test in September 2025.
They started me on Mestinon. Wow it’s game changer. I am able to stand up long enough to take a shower ! It’s amazing ! But symptoms break through couple hours after the pill - and come and go all day. So I don’t leave the house . Can’t grocery shop or anything. Go to Mass General in Boston - or go to any big city or medical school hospital system like Duke, Tufts, etc. Do not go to local, small Town, small city health care providers.
I had symptoms for a few years but got very bad starting January 2023. I was 68. Before that I was Very fit - hiking, walking - doing whatever I wanted to do !
Now I just stay home. Linda h
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u/fourforfourwhore 1d ago
I have POTS and SVT of unknown origin currently. I didn’t get denied from cardiology, but I just wanted to let you know that it’s very often that POTS and SVT also get blown off AT cardiology, with an expensive bill… very expensive.
I got a 2 month monitor, 47bpm - 268bpm. Yes, 268. I had 6 SVT episodes ranging from seconds to 30+ minutes. I was hitting a daily HR of 190 when I wasn’t in SVT, and, same as you, all of this is with zero exercise. I don’t even do stairs anymore, as I literally can’t. Not only did I get a $5,000 bill after insurance from the cardiologist that I could not afford to pay and wrecked my credit and financial situation, I also received no help. IE “You have SVT but it’s not dangerous. The rest is indicative of anxiety.” They recommended I eat a banana a day and “just breathe and relax”. I’m not joking, my SVT is life altering. My POTS is horrible too. Some days I literally cannot walk at all. There have been MANY days where I can’t eat all day because every time I eat I go into SVT. I’m sorry you got blown off, after those shenanigans I wish I did too. Unfortunately have been seen 6 times by 3 different cardios, and I just sent them in an EKG strip of my resting HR at 216 last night in SVT. They asked me if I was feeling stressed about work. I’m not joking.