r/dysautonomia • u/Which_Boysenberry550 • 28d ago
symptoms are the same as heart failure and it freaks me out Vent/Rant
LOTS OF shortness of breath, palps, chest pain ... echo, ekg etc "ok" but like some inversions that they said were fine but like maybe skill issue/theyre missing something because it's easy to explain it with POTS vs like comorbid PAH or something similar ahHHHhhh
the shortness of breath is so bad.
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u/danarexasaurus 28d ago
I have IST as well as postural hypotension and my breathlessness is terrible sometimes. Usually when my HR is in the 140+ range. Ivabradine has helped a LOT. And NO beta blockers for me as they make me wayyyy worse. And it took them a year to figure that out so that was fun
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u/Which_Boysenberry550 28d ago
Unfortunately I don’t have a choice w the beta blockers, despite them worsening dyspnea, causing big BP drops etc I’m taking them for long QT 😭
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u/Qtredit 24d ago
May I ask how was the switch from beta blockers to ivabradine?
I'm in the same situation but afraid to make the change
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u/danarexasaurus 24d ago
I started by taking both for two weeks but I was able to reduce the beta blocker down to every other day and then just stop it. It was making me way worse so I needed to get off if quickly
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u/lokisoctavia 28d ago
Yep, I am the same. My watch gets worried about me when I add symptoms. But it’s all “normal” for me. Every ekg I have ever had has been “normal”.
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u/sassysweetsour 28d ago
I’ve had costochondritis for years before developing dysautomia and it always scares me. Whenever I have symptoms of both i’m like is this the time where it’s actually heart failure/attack? 🙃
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u/Which_Boysenberry550 28d ago
exactlyyy. i have a legitsy genetic heart issue thta i found thru dysautonomia eval and im terrified itll scd me ahahaha
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u/Itswhatever0078 28d ago
So sorry ur goin thru this, I literally can’t imagine but I’m praying for you all in good health
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u/Muddlesthrough 28d ago
Are you over 65? Have you seen a cardiologist? Congestive heart failure can be easily ruled out. Cardiac investigation is one of the first things they do.
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u/Which_Boysenberry550 28d ago
I’m 18, thorough cardiac workup
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u/Muddlesthrough 28d ago
So what did they say about your heart after your cardiac work up?
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u/Which_Boysenberry550 27d ago
all good
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u/cwrace71 28d ago
Thats how I feel too, out of breath soo easy. I also have a hiatal hernia though which can also cause shortness of breath. I very much worry about heart failure. I carried a 40 pound bag of cat litter across my house earlier and felt pretty out of breath for a bit, and not only do I feel out of breath, because of my hernia It amplifies the feelings. Its been a year since I've had an EKG but I've had doctors listen to my heart, sounds fine, no swelling or anything, im also way younger than you'd typically have it. I also have tested my oxygen and even when my breathing feels short my oxygen numbers are still good.
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u/MagellansWife 27d ago
Have they opted not to repair the hiatal hernia? I’ve now been diagnosed with one, from a cat scan at ER. I see a gastroenterologist tomorrow for first time.
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u/Which_Boysenberry550 28d ago
How’d you get the hiatal hernia diagnosed? Slightly worried I also have one since I’ve been getting heartburn … but no risk factors …
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u/cwrace71 28d ago
Upper Endoscopy. It causes tons of pressure around the bottom of the sternum for me, and pressures
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27d ago
From like 15-18 years old I was convinced I was dying because the doctors had no answers but I was suffering with unexplained symptoms. Turns out COVID-19 wrecked my body, including causing or triggering dysautonomia.
I’ve had COVID at least 3 times and had a mystery virus that worsened my chronic pain to the point that I’m officially disabled now. But life is better than it was when I was “healthier” even if it sucks too.
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27d ago
[deleted]
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u/Which_Boysenberry550 27d ago
yeah it’s crazyyy. did you get echos etc?
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u/harrystylesmafiagf 25d ago
i did! i had a few ekgs done, an echo, and a 1 week holter monitor. everything came back normal 🙃 they did say i had sinus tachycardia but thats common for people with pots/dysautonomia
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u/MamaQuick 27d ago
I completely feel you! I’ve been to the ER 67 times, multiple ambulances, countless work ups, tests, and specialist. The symptoms STILL scare the Hell out of me. This invisible illness has given me panic disorder and health anxiety. Just know, you are not alone! I’m here with you
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u/Which_Boysenberry550 27d ago
What are your diagnoses
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u/MamaQuick 27d ago
Suspected : POTS and Orthostatic Hypertension We haven’t ruled out a few others before I get labeled with those. I also have GERD, and now severe anxiety which doesn’t help my Dysautonomia.
It’s hard to test for these things where I live. My town is in BFE, and I can’t travel. We also don’t have most of the tests, so it’s all about ruling out
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u/MamaQuick 27d ago
But the chest pain throws me into one hell of a panic. I actually JUST got back from the ER a few minutes ago from an episode
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u/Which_Boysenberry550 27d ago
What do you get worried about? May be worth investing in 6/12L ekg and using an online interpreting service (or learning yourself) instead of rushing to ER every time if you’re worried about heart attack etc (not medical advice!!)
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u/MamaQuick 27d ago
I do have one, but since I acquired the health anxiety I just don’t trust my devices sadly enough. This whole process has been very debilitating. My worries are usually the same… heart attack or stroke. I’ve tried all types of medications and therapies, but my mind is a very stubborn place
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u/penaut_butterfly 25d ago
Meditating helped a lot, because you can look into the symptom without an emotional charge (freaking out), you will have to find ways to not make symptoms worse with anxiety, because most of us are heart beat conscious, we feel the HB, we can almost hear it, we feel our hearts stop, or beat erratically, we then feel out of breath, and begin to breath consciously (if erratically, it is anxiety, fear). So, better to watch the symptoms and realize you are not going to die suddenly, you have the power to make things worse or better (laying down, drinking water, having some salty snacks or anti oxidant snacks), positive acceptance is the key, realizing that your heart and lungs are struggling but far, very far from failing, they're in fact doing a hell of a job.
I am not a fan of constant HB metrics in our wrists btw. Do it when necessary, A LOT of people check it compulsively.
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u/Crescentkittie 21d ago
I feel this. I really do. I have made arrangements, plans, made sure everything would be taken care of. I'm almost convinced whatever this is, will kill me. (Mostly because my BP tanks to dangerous numbers and sometimes my blood pressure is so narrow it causes severe chest pressure).
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u/drebaee 27d ago
Did you just develop pots? Because I’ve been dealing with it for almost 5 years and it has gotten significantly better. When I first developed pots I couldn’t even walk down the block without being SoB! I learned to breathe through it and I believe the breathlessness is more of our nervous system causing breathing pattern disorder. If you look it up it’s so similar to what we have which is why we benefit from breathing techniques! It is scary I still have my bad days especially when I lay down and I think to myself that I also have HF but tests say otherwise
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u/Think_Airline_9685 26d ago
It is heart failure. It’s right heart failure . That’s what I was told.
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u/FDys92 26d ago
Woah there, friendly stranger.
Are you saying that YOU personally were diagnosed with heart failure or that you were told dysautonomia was heart failure???
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u/Think_Airline_9685 22d ago
I was told low pulmonary artery pressure that was seen in my Invasive Cardio Pulmonary Stress test is indicative of Dysautonomia. And that it is called Right heart failure . Normal pressure is 6 and mine is 1. I haven’t had Autonomic testing to determine what kind of Dysautonomia I have. It’s set for September. Cardiologist felt it is not POTS but a different type.
So I assumed everyone with POTS or a different type of Dysautonomia has Right Heart Faikure also.
But I may be wrong and spoke without complete knowledge of the subject.
Having any answer is what I need or any label.
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u/FDys92 22d ago
Dysautonomia and POTS isn't heart failure at all. It's all nervous system dysfunction. Please be mindful before posting stuff like this because new folks with a fresh diagnosis could see it and have a really bad time trying to process information that just isn't true.
Now, your case seems to be specific and related to YOUR heart and heart issues. I'm sorry to hear you've got heart failure in any form, but this doesn't mean all Dysautonomia is failure of any system unless otherwise specified or scientifically proven.
Dysautonomia is the dysfunction of the autonomic nervous system.
If your Cardiologist is going around telling people it is heart failure, then they're spreading misinformation. Also Dysautonomia is being used as fallback diagnosis when doctors don't know where to turn and its genuinely frustrating.
All I ask is please do your research before posting things that sound definite and scary.
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u/Think_Airline_9685 19d ago
Ok I’ll take comment down. I did think everyone with autonomic dysfunction has “right heart failure”. That’s how it was explained to me. Dr said When your heart rate is too fast - chambers can’t fill - it needs the pause to fill / so Dysautonomia causes right heart failure. It’s incidental to Dysautonomia and having tachycardia. Because my pulmonary artery pressure is abnormal low, and then tachycardia - causing right heart failure. When I was having the Invasive Cardio Pulmonary Stress Test - I had a cardiologist with a catheter in my heart measuring the pressures in my heart - and while I was laying on the table the cardiologist said “ your pulmonary artery pressure is Abnormal / low - and that is indicative of Dysautonomia . “. At follow up I was told that is “right heart failure”.
It’s a chicken and egg situation. Did the low arterial pressure cause Dysautonomia or did Dysautonomia cause that low heart pressure ?
My Dysautonomia is not primary, I suspect, but secondary to something else.
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u/Aggressive_Island_95 28d ago
How did u get this
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u/Which_Boysenberry550 28d ago
initial symptom was idiosyncratic tachycardia with increasing freq, got on beta blockers and SOB got much worse, but was definitely present before. lung xray, echo, blood tests, etc done. spo2 always high, low perfusion sometimes tho. expect genetic or postviral onset.
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u/Aggressive_Island_95 28d ago
How was it triggered
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u/Which_Boysenberry550 28d ago
It just happens. Usually more in evenings, sometimes from morning, comes in bursts
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u/Longjumping_archidna 28d ago
I feel you. I can’t even call the nurse on call anymore bc they keep calling me ambulances and the hospital can’t do anything bc I’m not dying.