How do we know when it's time to call an ambulance?

[Scout]

I apologise for this subject being potentially morbid, but I am curious — how do we know when to call an ambulance / go to ER, for chest pains, heart related issues, etc?

I have been to ER (and in the ambulance) countless times for severe chest pains and palpitations, but never has there been anything shown up as "bad" for my heart, etc. They run blood tests for troponin, do EKGs, etc, and it all comes back as fine — despite the fast heart rate, which they treat. But these symptoms I experience are truly severe, and would send a person without Dysautonomia to the ER, without a doubt. 

Everyday, I have chest pains — often very bad ones, sometimes a severe pressure on the chest, and most days I have pronounced tachycardia. I've been checked over by a cardiologist, who I see twice a year, and he assures me my heart, itself, is healthy. 

My father had a heart attack very young, in his early 40s (luckily he survived and is still doing well, over 20 years on), so I have to admit: I am concerned that one day, I'll just palm off these symptoms as another Dysautonomia flare, when, in fact, it could be a heart problem at one stage. I can't go to the ER every single time I have a flare, because that would be several times a week.  

Any advice on how to differentiate POTS symptoms and chest pains, to actual heart muscle struggles? 

It's all very difficult... but I believe that forewarned, is forearmed. 

Many thanks, and have a lovely day. 

 

[jklass44]

I’m so sorry you’re going through all that. Is there anything that may be triggering your flare ups? Does your cardiologist have you on any medications? (If so it might be time to re-evaluate)

One of my first symptoms was severe chest pain/pressure/squeezing, and I too would go to the ER, especially when it was accompanied by tachycardia. I had dozens of tests throughout a couple of years and everything always came back relatively normal. The only thing that helped me through those events was IV fluids, but I wasn’t lucky enough to always have a doctor in the ER that would give them to me. 

Are you working full time right now? I found that with a decrease in my work week hours, plus new medications, my chest pain has lessened significantly. 

I hope you find something that helps - best wishes!

[Hutch]

I had a great friend who I miss more than anything in this world. That I had meet threw a girlfriend at the time, he was a friend of her father. One day I happen to be at her house. When Eddie my soon to be bestfriend, had stopped in to say hey to my girlfriends father, long story short do to a vehicle he was driving and I. Being a car guy went out and was checking his car out, and there on the back was a bumper sticker about Dysautonomia. I like to crap my self I couldn’t believe it, as this  was 12 years ago and I never met anyone that knew about it not even a doctor, other then my nero. But having chronic fatigue and pots, I knew to well about Dysautonomia, me and Eddie got to talking and we couldn’t believe how we had all the same symptoms, witch both started after mono, we became best friends was into all the same stuff, he was a healthy 50 Other then Bad Chronic fatigue, 6 years after becoming friends he finally gets some good health insurance, he’s d*** and determine, to get answers about he’s crohnic  fatigue. He’s family doctor gets him into the Cleveland Clinic in Ohio, I went with him, they ran every heart test there was, echo  nuclear stress test chest X-rays ecg, and did blood work, doctor said one thing we know for sure it’s not your heart it’s as healthy as can be. They also were going run blood work for lots of other stuff, and would follow up with he’s family doctor. We came back home, well something crazy happened two  months after being back home, he wakes up can’t breath pressure on Chest, goes to the local hospital. They did a chest X-ray boom a badly enlarged heart. He asked how is that possible explaining what he was just told two months ago, well they must have missed it the  cardiologist said. I ran to his house get the X-rays that Cleveland took came back to e.r even I could tell a difference it was unreal, the next day  cardiologist comes in, he looks at both X-rays, again I ask how this is possible, he then goes to sAy your hearts usely healthy or it’s not it’s hard to catch it in between. I said so what’s all those test about just to make money if not to find a issue early. Long story short he never showed any different signs or the way he felt then he did the whole 6 years I knew him, and we were close told each other anything about how we were feeling, he ended up with a pump assist in he’s heart, and was taking it pretty good, he was in line for a heart transplant, he asked me if he should do it or live out he’s life, with the assist pump, we had many conversations in past about how we thought.  Chronic fatigue was  immune system fighting its self. I brought that up saying if that’s the case I bet it going hate having a heart that isn’t its own. We’ll transplant doctor talks him into it had him convinced he would be normal again that it was probably he’s heart the whole time he had  chronic  fatigue witch I knew was bull. What came next was the roughest thing I’ve ever been threw. watching his body reject the heart, the suffering he was in was hard to watch, he ended up passing 6 months after the transplant, so it’s in my opinion when it comes to the heart they only know when there enough damage to be picked up, I personally no longer go to the er over my chest pain and shortness of breath it’s happened enough times and I’m still here, That I just set threw it, death is nothing to fear we all will one day. There no way around it, once u can cope with that it helps. I don’t respond to beta blockers so I’m always in  tachycardia when I’m up right every single day, 130 to 150 on I good day 120 I do believe that’s we’re my chest pain comes from and push my self to far. So In my opinion if it feels the same as it did last time, no reason to go. 

[MomtoGiuliana]

Have you talked to your cardiologist about these concerns?

If you have a family history of heart attacks and you are experiencing chest pain it can be hard to know what to do.  Since the pain is so frequent it seems you need to be in touch with your cardiologist as to how to evaluate this at home and how to know if it is an emergency.

[toomanyproblems]

Hi OP. I share your concerns. I have heart disease on one side of my family but I'm already 65 (just turned) so I've made it a while. I've had active POTS around 12 years but probably had it longer. They've checked my heart with all the tests they know to do. I have chest pains, tightness and shortness of breath sometimes every day for hours each day. I lie in bed doing deep, long, stomach calming breaths like they tell you but they don't really help.  Clonidine sometimes helps tamp down my sympathetic nervous system enough to calm it. They say, call an ambulance or come to the ER if you *really* feel like you're having a heart attack but I have no idea how I'd tell the difference. I've never done either. I'd literally be in there everyday when it's happening a lot. Plus I don't think heart attack pain goes on like this for hours and hours so that's comforting afterward 😕 

I have so many problems. I feel somewhat resolved to not let them run my life any more than possible. I mean, it's really hard and I have to say I do get scared and desperate much of the time when the chest pains get bad, but POTS as a disease syndrome has actually not been known very long and I guess on some level I just have to accept that they just don't know much about it. FWIW, from reports on POTS forums, it does seems as if chest pain is a very, very frequent complaint and yet it's really rare to hear of anyone actually having at heart attack. In fact I don't recall ever reading of one. The above poster has the only report of any heart problem at all that I can recall, which I think is strange because you would think it would have to stress your heart over time for heaven's sake. But it is what it is. I'll take the good news where I can get it. Good luck to you. 

[dannyg]

Since December I was in the hospital 3 times and emergency room 3 times. I got so scared everytime I drove myself there. I think it made it worse cause me driving in full attack was a bad idea when I think about it. Everytime, I got there felling worse cause I made it worse by exhausting myself more instead of laying down and waiting it out. I would have been better off laying on the couch because everytime I went to the hospital, all they did was take an EKG, check my Pulse and BP, sat me in a wheelchair cause I was shaking so bad and exhausted, then would tell me my Pulse is 100 and BP is 120/90 so Im ok. Im not ok ! I cant breath right, stop shaking, or stand up at all ! Then they take me for an xray and expect me to stand up like nothing is wrong. Then back to the waiting room, 3 hours later to the ER room where I lay shaking watching my Pulse go to around 105 just moving my hand, they stick an IV thing in me, I lay there no IV or anything. Then the doctor comes in, tell him whats wrong, he leaves, comes back 2 hours later, tells me either "your blood work is ok we cant keep you" OR "we will keep you for observation". So then I get taken to a room, they wont give me anyghing to drink, all this time my mouth is so dry, and by the time I get in the bed ... I feel better ! Last time they kept me there 4 days, did nothing while I laid there. Worse part was, when they keep me, they put me on a Cardio diet.... NO SALT ! I need something with salt sometimes with POTS to keep my BP up just just a little. Then they check BP and Pulse laying, sitting, and standing 8 times in 24 hours, and as time goes on and Im stuck in bed, my standing BP drops more than it ever does when I do get up. I"m always saying to myself "why did I waste time coming here, they are doing nothing". And the last time for 4 days I was really upset cause the last 3 days I felt pretty good but was stuck in the bed in the hospital.

 

[toomanyproblems]

I always thought it was crazy people's cardiologists told them that it wouldn't affect their heart. People have heart attacks pooping for heaven's sake. You know it has to stress your heart over time. However, lots of people with POTS -- a striking over representation, are or have been athletes, myself included. Maybe that helps.

[Hutch]

 Let me get your opinion on this. If everyone with pots came off their medications and got a job. that involved standing all day and  everytime they felt bad or passed out get right back up. just keep ignoring all the symptoms are body gives us that screams at us lay your *** down, ignore the  tachycardia and not rest when the bad chest pain comes on.  Do everything a healthy person does daily, get home from full time job clean the house do yard work. How long do you think the heart could handle that?  Or other organs for that matter, How many people with  severe pots would  volunteer for a study like that? I sure wouldn’t cause if learn the hard way from trying just that how fast you get worse, and also started my chest pain. 

[toomanyproblems]

Well, I flat pass out all the time so I wouldn't be a candidate.

[Pistol]

@Scout - I had many trips to the ER for chest pain radiating up my neck, nausea, palpitations and nausea. Sounds like a heart attack, doesn't it? Well - every time everything checked out OK but nobody had an explanation. Well - finally my cardiologist did a heart cath and found a certain type of angina caused by spasms of the coronary arteries ( Prinz-metaL angina ). Since then I have been on medication for that and am much better. BUT - without the heart cath we would not have known. Only a stress test followed by a heart cath ( if deemed necessary by your cardiologist ) will truly show if your chest pain is anything to worry about. What does your cardiologist say? 

[yogini]

Dysautonomia has some scary symptoms, including chests pains, but in and of itself does not usually cause a risk for a heart attack.  However, your  doctor could advise you best.  He or she could do a full workup, take into account your family history and give you guidelines on if and when to go to the hospital.