Was I misdiagnosed?

I hope this starts a new thread. I don't know where the new question button is, so I hope it shows up.

A few months ago I was diagnosed with atrial and ventricular ectopics. I am told this isn't serious, but I have other symptoms that dont match the symptoms of this diagnosis, symptoms that didn't show up on the 7 day moniter because I never had them.

I have what I call my 'good' attacks and my 'bad' attacks. The good ones are simply the extra beat I feel. If I have multiple extra beats in a row then I feel very ill. I am on a beta blocker to stop these.
The bad ones are what concern me. I cannot find anything that fits my symptoms. What happens is this: My heart feels like it is a balloon, being blown up in my chest. Its an expanding feeling, and there is pressure in my chest when this happens. Then my heart seems to deflate, just like a balloon does, and when it deflates, it shakes, or 'quivers' if you will. It beats erratically for a few seconds then goes back to nomal. The whole thing lasts maybe ten to fifteen seconds.
One night I had three of these attacks in a row, and I honestly thought I was going to die. I couldnt call an ambulance because I simply couldn't move. I was so light headed and half concious, I felt like I was outside of myself. It was the scariest feeling I have had. A week later I went to the doctor, and a few weeks later I had a disagnosis, but its not an explanation for the bad attacks. The medication I am on takes care of most of the 'good' ones, but does nothing to stop the bad. I am concerned that something else is wrong and I would like to know what it could be.


This discussion is related to Scared and seeking professional advice.

[Jerry_NJ]

Yes, your post arrived.

Your "bad" attacks are very unusual in my reading experience, and happily I've never experienced them myself.  

That said, I think it is time to discuss further with your doctor. If you are now having the "bad" ones regularly it is a certainty that the monitor will be recording when they take place.  This should be a big step forward.

I live in the USA, private medicine, so I don't know what you have to go through to get an appointment and get a monitor placed, but it seems to me you have an emergency situation.  

[ireneo]

An event monitor can be worn up to 30 days. If your "bad" attacks only happen once every 30 days, then you would still be able to record one of these. You didn't mention how often they occur.

[Kyle2009]

They are rare, the minor ones are more common. The more major ones I may have one of them every month or so, or longer. I never had one when I had the 7 day moniter, and I had thought there are tests to see what your heart has done in the past, but the only tests I have had show what it did at the time of the testing. I need to know what happened those months ago. If it happens again, well, lets just say I don't want to feel like I'm dying again.

[jsuter69]

I read your post...I feel your apprehension and how scared you must be, I was diagnosed with PVC's , PAC's and SVT but not all of my symptoms feel the same, sometimes they do, but every once in awhile, one of those scary episodes happen...the kind that make me want to call an ambulance....I hate that feeling, scared to death and all alone...(I'm not really by myself, I live with my boyfriend but he just doesn't understand my fears)
I also feel like "maybe" my doctor isn't seeing what REALLY is going on with my heart, maybe it's more serious?? But so far....I'm still here
Goodluck and know my prayers are with you Kyle
Julie

[bypeep]

I am so glad to read your post Kyle.  I too have exactly what you describe, "good" and "bad" episodes.  There are three ways that my heart beats that turns me into a recluse for months after it does it and one of them is just how you put it.  The sensation of inflation and pressure followed by an erratic beat.  Another way I'd describe it is like the heart is expanding but tightening at the same time and then it just holds itself like that for a fedw seconds before it slams back  into motion. When it goes into the erratic beat after the pause and expand sensation, it's not going fast or slow really, just totally out of whack.  The quivering terrifies me because I have no idea what it's really doing during that time.  The other two things mine does is the just the erratic beating minus the inflation thing is a somersaulting, feels like my heart is actually rolling over itself then jumping up and down a few times, then doing a few more rolls before it comes out of it.  Luckily these "bad" episodes only occur a few times a year.  Too infrequent to be caught on a recorder, but too frequent for my sanity.  I was diagnosed with benign PVC's and PAC's but I too feel as though there must be something else.  The only thing that makes me question my fears is that I've been having this happen since I was 14 and I'm 35 now.  Still terrifying when it happens though.  Have you found anything new out about the long episodes?  If so, I'm curious what they had to say.

[cindy707]

Hey Kyle i read your post....i hate it when docs say "good" and "bad" because to me they are all bad and the bottom line is the bottom line....i try to keep things in perspective for myself and remind myself if i feel a little funny but nothing pops up that my heart is beating over 100,000 times in any given day...thats number one...number to is that doc should give you a definate diagnosis of EXACTLY what the "bad" is and what your options may be for relief.  In this day of modern medicine he/she should have an answer for you.  My only thoughts on the feelling of the balloon inflating and then deflating to me could be one  of two things and on this i am giving it my best guesstimate.....one is that you may be having a little blood backing up during the ectopics and enough pressure has to build up in order to release it back into the body and the other thought is that since this is coming from the upper area of the heart and it is electrically based that quite possibly the signal is causing your heart to re set the electrical pattern which is a very good good thing.  I don't know Kyle i know for sure that matters of the heart scare all of us since it is the pump that is in our body and sustains life and we all worry that something could go wrong...to me the shaking and quivering makes a little sense to me since this is all electrical based and the heart fires off our electrical pattern in a very specific format and if the heart is recognizing that something is "off" and corrects itself to me means that you have a pretty healthy heart not like some of us that had to rush back and forth to the E.R, to get converted when we had a bead of them......my advice is that if you are super scared and aren't getting the answers from your doc that makes you feel at ease and safe then seriously consider getting a second opinion and a doc that you have a raphor with and are on the same wave length...i had to go thru three of them until i stuck gold with mine and now am a totally different girl....its not just matters of the heart for all of us its psychological as well and you have to have a connection w. your doc or it just doesn't work Kyle...good luck....