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Anyone With Pots Had Episodes That Felt Like Heart Attack?


Freaked
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I was sitting on my bed and started getting painier pains in my left arm than usual. Then follows heart rate bounding up to 120, sweating and an intense need to vomit (the heaving made me have an ectopic or two). I've had these kinds of episodes before, though the left arm pain has gotten worse lately, and they looked at my heart. Had echo, ekgs, enzyme blood tests and ct perfusion coronary artery scan which were all okay. Cardiologist suspects pots and have my ttt scheduled for the end of the month.

But these episodes still terrify me. The regular heart rate jumps when I stand are bad enough, as are my stomach probs. But these eps that combine a bunch of heart attack symps... Ugh. Just came off anxiety meds today so maybe that's having an impact.

Anyone else get these episodes?

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All the time. I know several of us have joked in the past that we wouldn't know if we were really having a heart attack or a stroke because many of us experience the "alert" symptoms of these issues almost daily. Chest pain that radiates down my left arm, nausea, shortness of breath, tachycardia, hot flashes and clamminess are a daily occurrence for me. When I have migraines, I slur my words, the right side of my face swells and droops, I sometimes drop things and become off balance. It used to really scare me but over time I've just become used to it. I truthfully don't know if I could tell the difference between these symptoms and the real thing. All I can do is not let it worry me and deal with it as it comes. But, you're not alone and there is definitely an adjustment period to these symptoms.

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I fairly often get intense chest pain that radiates down my left arm, as well as nausea (no vomiting though, thankfully) and sometimes I'll get hot and/or shaky. I jokingly call it "heart-attacking", as in "Oh, no, I'm fine...just heart-attacking again)-- LOL totally agree with Katybug I wouldn't be able to tell if I WAS actually having a heart attack! Which is sort of funny, I try to make light of it- but it is scary, and the actual feeling used to terrify me, but now I just consider very uncomfortable.

Haven't been on anxiety meds- if these episodes coincide with coming off of them though, definitely check with your doctor.

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Yes, regularly. I had one particularly bad episode where the pain went up my chest into my neck and left arm. The paramedics came and checked me out, all OK. He thought it was an attack of GERD (which I don't have) and perhaps anxiety. It was pretty scary, but now when it happens I just relax and wait for it to pass. Since I've been on a beta-blocker everything has improved in that area.

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Count me in as well.

Before I was diagnosed I rushed to the ER a couple of times because of this. Things checked out fine ever time and I was told I suffer from anxiety to the point that I started believing it. I know better now, but to this day this is one of the scariest symptoms I'm dealing with and even if I had countless tests proving that I'm in no danger, I still don't know how to deal with the squeezing chest pain radiating down my arm, combined with tachycardia and sometimes nausea and shortness of breath.

Deep breathing seems to help, and lately I tried taking a magnesium pill whenever I feel such an episode. The pain seems to subside about 30 min after, but it may be a coincidence...

The other thing, in my case beta blockers made this matter worse - when on propranolol, my chest pains were a daily occurrence, now they're less frequent.

Alex

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Yes, and I agree with all the above. For the last two days, my chest has been more painful than usual (I have this daily) and my left arm hurts as well, kinda a muscle ache, tingly, numbing feeling, hard to explain. Sometimes it goes up my neck (carotid area) and sometimes wraps around under my arm and into my back. One EP I had actually told me this has nothing to do with my heart or POTS. I've gotten remarks ranging from, "You're too young to have heart problems" to "Maybe it's the underwire in your bra" to "Maybe you pulled a muscle."

Responses in my head when I heard the above remarks, "You're an idiot!", "It might be the underwire, however the only time I wear a bra is when I leave the house, which is like, never." , and "It might be a pulled muscle if I exercised or if there is any way, shape or form the possibility of pulling a muscle whilst laying in bed or on the couch." :blink:

No one has seemed to be able to figure it out. The last heart testing I had done was at the initial onset of my symptoms over 4 years ago. All testing said my heart was fine, even on my treadmill stress test, the results showed that I have above average exercise capacity. Go figure. I think it's about time I go in again (to a new EP) and ask for full heart testing, just to see where I'm at now.

I do know it is a scary feeling. Like most posters ^^ I wouldn't know if I was really in danger or not at this point. I would encourage you though to seek professional help if this is something new and concerning.

Feel better,

Bebe

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Bebe- HAHAHAHA I am so relieved I'm not the only one whose doctor suggested my chest pain may be due to my bra!!! I couldn't even believe it. Good lord!

I've always been curious as to what the pain actually is. I've read about referred pain (for instance, when someone IS having a heart attack, the pain in the whole chest and down the left arm is "referred pain"...basically pain in the general area of what is actually in pain) and wondered if it could be vein/arterial pain, or like fluctuations in BP/HR that could be hurting the area...?? No clue. I sometimes get the pain down my left rib cage as well, so have wondered if it could gallbladder/kidney/etc pain, but my docs don't seem to think so. Could be stomach related pain? I certainly have lots of pots-related digestive issues, but that really shouldn't shoot down my left arm/up my neck.

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Felt so crap earlier had to go and sit outside the hospital until the pains went away. Glad to know I'm not the only POTS sufferer with this.

I asked docs on healthtap why we get left-sided pains more often (as do anxiety and costochondritis people) and of course answers ranged from 'don't know' to 'pain is not a symptom of pots'. Sigh.

The one thing i do wish I'd had done cardiologically is a proper thallium or echo stress test. I never hear of people getting them done here but I can't believe they aren't when they're so popular in the US. I know my arteries are clear (had them scanned) and that apparently my heart is structurally normal. But I've had chest pain when I run all my life (I'm 21) and I always worry that some sort of coronary spasming might be going on. Though I don't know how that could explain my POTS symps.

I do have severe reflux problems, so that might be contributing. But then you hear that can be indicative of heart probs too, so :-/

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FWIW, my POTS neuro (who is not at one of the big research facilities but is well respected in the POTS specialist community) has told me that this is a regular complaint of many POTS patients and another of the POTS "mysteries" as to why it happens. Similar to why we feel so out of breath. He has told me there is lots of conjecture amongst the docs on why it happens but nothing that anyone has been able to prove. He implied that if they could unlock the keys to the cause of these symptoms, they would probably have the key to successful treatment for us. -_-

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FWIW, my POTS neuro (who is not at one of the big research facilities but is well respected in the POTS specialist community) has told me that this is a regular complaint of many POTS patients and another of the POTS "mysteries" as to why it happens. Similar to why we feel so out of breath. He has told me there is lots of conjecture amongst the docs on why it happens but nothing that anyone has been able to prove. He implied that if they could unlock the keys to the cause of these symptoms, they would probably have the key to successful treatment for us. -_-

Very true; I've certainly read conflicting theories about the pain. Some docs think it's cardiological and others insist it isn't. Sometimes mine is definitely muscular, but then sometimes it feels 'different' and I can't tell exactly where it's coming from. My own cardiologist mentioned spasming after a scary episode one night, which depending on what he meant can be very serious. But he didn't seem at all concerned.

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Oh yes. But it's one of the many symptoms I've learned to deal with over the years. The first year was the worst, because no matter what anyone told me, I was just sure I was dying. Deep breathing and visualization help. And just keep telling yourself that you will be ok, it's not 'really' your heart. Hang in there. You are not alone.

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  • 1 month later...

Hello everyone. I also experience these pains. Sometimes its stabing sharp pain and sometimes it could be squizing pressure pain in the middle of chest (which i read could be heart related). My cardiologist said that stabing sharp pain is not heart related, but he is a little concerned about the squizing pressure pain. He said to definetly make sure its not heart is to do catherization, but i am 31 and all my other cardiac work up was negative, so he wouldnt want to do such an invasive test. But the other option is to do ct scan angiogram with calcium score test. He says if thats negative and all other tests are negative as well, then its not my heart. But i am wondering if its spasms, how will they see it on ct scan. I think ct scan will only show blockages. I saw neurologist yestarday who is very knowladgable in dysautonoma and she told me thats its very common in pots pstients. She recomended to take small dose of beta blocker, atanolol. Did any one here take it ever for chest pains?

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This has been happening to me for close to two years and I still am not used to it. I wish I could say it is just POTs, like some of the posters but, I feel like I am dying/having a heart attack and try to be calm and breath easy but still wonder if one of these times it will be the end!

I do not get short of breath, but I get the intense pressure below my sternum that builds and then goes up and into back. The left sided pain in neck/head, sometimes back, shouder and left arm. If it is a really bad episode my head will feel like it is going to explode from the pressure. Oh and another crazy one, intense pain in my leg, the back of it usually it is like a line of pain behind my knee down my calf, the last place to happen will be the upper leg. I get the sweating,nausea and super high bp. For me, it will sometimes go down if I sit or lie down, but I don't do that unless it is really bad, because when I have to try and get up again, it will be even worse. Once I get one of these episodes, any little thing can trigger it for a while.

I hope I get some more answers and some type of management of this. A year ago, it was triggered and it sent me to the hospital and for days I couldn't even lift my head with it starting up. In fact, I turned my head on the bed and felt just as bad. Not sure if the medications helped me eventually get over that or it was just time ?

Like an idiot I went up three lousy steps yesterday and it triggered one of these episodes. I am still having after effects from it. My leg is killing me, my foot is getting off and on tingling and numbness, and the left side of neck, face, shoulder are sore and throbbing. My bp has gone down, but I am taking it really easy. In fact, sometimes after one of these episodes my bp actually goes lower than normal!

I have had many heart tests and my heart is strong, but I often wonder if there is some vascular issue, but have been told they don't think so. I also have wondered if a tumor is being compressed, but doctors are leaning towards hyper pots. So reading these posts, and hoping my episodes will become more controllable and I will also be able to just think or say " it is just my POTS". For right now, in my mind I am usually going " Stay calm, think calm, but OMG I am DYING!!! Why can't anyone stop this."' LOL obviously, I really need to work on this.

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By recomendation of the last doctor that I saw, I started Atanolol 1/4 of 25 mg. Today is the second day and I almost have no pains at all. I do feel very spaced out and my BP droped to 80/50 today, but no chest pains. So now I am concerned if beta blocker is decreasing my chest pains, does it mean that I could be having heart issues like angina. I am getting really scared.

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  • 4 years later...
On 8/26/2013 at 4:38 PM, issie said:

Yes, expensive hospital stay. Triggered by a mast cell degranulation event. Nitroglycerin helped. They thought it was a heart attack, but no heart muscle damage. Was a MCAS eposiode. Called Kounis Syndrome.

Issie

This is interesting, Kounis Syndrome. They found I had mid LAD disease when they did an MRI heart scan.

I was found to have had an anaphylactic  allergy to Bisroprolol beta blocker that brought my heart rate down extremely low so that I was barely conscious. 

Though I have been off beta blockers for ten months now, all the symptoms that I got from the day I first took them remain, including horrible pressure pain that I presumed to be a form of heart burn, but travels from the centre of my sternum to the heart.

Do you know if this syndrome can be started by am allergy to a medicine, yet remain when taken off the drug?

I still get massive ventricular ectopics, but when I get this heartburn feeling, I took an ecg and found I got huge "T" waves which are only supposed to be a third of the preceding "R" wave, not tower above it. 

 

My Worst T wave re LAD occlusion Be suspicious of coronary occlusion when the T wave towers over the R wave.jpg

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Some discomfort, sensations and pain are not unusual. However severe chest pain like a heart attack is not normal symptom of POTS. Most of us get a full work up including EKG, ECG, chest X-ray and stress test. For most of us these come back normal and our doctors tell then us our chest sensations are nothing to worry about. You should definitely get a work up and confirmation from your dr.

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6 hours ago, Peter Charlton said:

This is interesting, Kounis Syndrome. They found I had mid LAD disease when they did an MRI heart scan.

I was found to have had an anaphylactic  allergy to Bisroprolol beta blocker that brought my heart rate down extremely low so that I was barely conscious. 

Though I have been off beta blockers for ten months now, all the symptoms that I got from the day I first took them remain, including horrible pressure pain that I presumed to be a form of heart burn, but travels from the centre of my sternum to the heart.

Do you know if this syndrome can be started by am allergy to a medicine, yet remain when taken off the drug?

I still get massive ventricular ectopics, but when I get this heartburn feeling, I took an ecg and found I got huge "T" waves which are only supposed to be a third of the preceding "R" wave, not tower above it. 

 

My Worst T wave re LAD occlusion Be suspicious of coronary occlusion when the T wave towers over the R wave.jpg

With Kounis Syndrome, at least for me, it's not a constant thing. If I have a really bad Mast Cell Attack - it can affect my heart. Not everyone with MCAS will have it affect their heart. 

That being said.....beta blockers can trigger MCAS for many - including myself. I can't take asiprin either - that will trigger it for me. Some do use asiprin to create a slow mast cell release instead of of an  instant degranulation that is more intense. 

Kounis is not widely known or acknowledged - except by those who are more familiar with mast cell activation syndrome. 

Issie

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  • 2 weeks later...

I am so glad to read of others with these problems. I have occasional clusters of heart attack-like events and, amongst other things, left side pain (chest, shoulder, arm, abdomen, even going into pelvis). 10 years ago I had an angiogram, more recently a myocardial perfusion scan and echocardiogram but no structural problems found. Initially with these attacks, my EKGs/ECGs have an ST abnormality (indicating ischemia but this isn't definitive). I suffer more widely from sensory symptoms such as tingling and pains, also GIT problems, central chest pain, and brain fog. I have had numerous scans and investigations, all with negative results, and my most recent consultant said that dysautonomia or acute porphyria remained as possible clauses and I am awaiting a consultation with a neurologist.

It seems that the heart attack-like events could be caused by Prinzmetal's angina (also called variant angina), where cardiac arteries go into spasm.

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