Please read and see if you can relate

[potsiebarbie]

I haven't been getting a ton of responses on my previous posts, but I'm hoping someone can relate to this, or might even have some comforting insight (because it is really unsettling). When I go from lying to sitting, or sitting to standing I get this weird feeling in my chest (maybe pressure?? Idk), and I'll feel my pulse and it's hard and slow. It eventually progresses into my ever so familiar tachycardia, but when I get that feeling in my chest and it's hard and slow like that it is uncomfortable and scary. It's like my heart can keep up. Once I'm walking around it goes away.  Thoughts? Experiences? Anything would be appreciated. 

[Pistol]

I used to have this happen to me. It was caused by blood pooling and the heart trying to pump with all its might to compensate until it finally starts pumping FASTER rather than HARDER. Often this was accompanied by PVC's which felt awful. Once I found the right medications this all stopped. It was caught on my implanted loop recorder, which recorded every heart beat for 3 years, and it was all harmless. I know that we feel our hearts beat more than others ( this is called cardiac awareness ) and that it can be quite unsettling but it is a common symptom of POTS. Since you had your heart checked out thoroughly and have been told by several doctors that nothing is of concern I think you should be OK. I had to get used to the feeling and once you know that it is not serious you might be less worried. However - medications like beta-blockers and calcium channel blockers have helped me to stop these symptoms. 

[potsiebarbie]

8 hours ago, Pistol said:

I used to have this happen to me. It was caused by blood pooling and the heart trying to pump with all its might to compensate until it finally starts pumping FASTER rather than HARDER. Often this was accompanied by PVC's which felt awful. Once I found the right medications this all stopped. It was caught on my implanted loop recorder, which recorded every heart beat for 3 years, and it was all harmless. I know that we feel our hearts beat more than others ( this is called cardiac awareness ) and that it can be quite unsettling but it is a common symptom of POTS. Since you had your heart checked out thoroughly and have been told by several doctors that nothing is of concern I think you should be OK. I had to get used to the feeling and once you know that it is not serious you might be less worried. However - medications like beta-blockers and calcium channel blockers have helped me to stop these symptoms. 

Thank you so much for replying! I had a doctor hear an irregularity with the stethoscope recently so cardio ordered 4 week monitor. I'm hoping it picks up what the doc heard. My ekgs have started showing irbbb the past few months too. Do you think a 4 week monitor is long enough? I had a 24 hr one last time. It was a good 24 hr right after iv mag so I'm not surprised it was okay. Thanks again for responding! 

[Pistol]

@potsiebarbie - anytime you have a monitor it is a hit-and-miss situation: the palpitation may or may not occur. 4 weeks is about as long as you can have an ambulatory monitor, so I do believe that there is a very good chance it will catch something. So - if you feel something wrong, make sure you push that button! 

[jklass44]

@potsiebarbie I know the feeling you describe very well. I still get it all the time, particularly if I’m reaching up to get something in the pantry or whatever. Oddly enough, I had about a dozen 24 holters and they rarely picked up anything, but my 4 week event monitor I had symptoms almost every day!! Definitely push the button if you feel something funky. Heck, even push it a few times when you don’t feel something because not every pvc/pac is felt!

[Peter Charlton]

Two years of the NHS monitor wearing failing to coincide with what I knew to be my heart, prompted me to buy my own little ECG machine, that way I could record what was happening as it happened. Once I could show the NHS what they had missed, the ball started rolling very rapidly indeed.

[JimL]

Yeah...

[yogini]

Changing positions definitely triggers symptoms.  It can be scary.  Be sure to mention to your doctor and get a full cardiac workup, but many of us get similar symptoms.  My cardiac checkups have come back normal and my doctor told me not to worry

[potsiebarbie]

On 4/17/2019 at 4:29 PM, Peter Charlton said:

Two years of the NHS monitor wearing failing to coincide with what I knew to be my heart, prompted me to buy my own little ECG machine, that way I could record what was happening as it happened. Once I could show the NHS what they had missed, the ball started rolling very rapidly indeed.

What were your symptoms. How did you know something was wrong?

[Peter Charlton]

On 4/19/2019 at 9:11 PM, potsiebarbie said:

What were your symptoms. How did you know something was wrong?

Initially, I thought maybe I had an aortic aneurysm  as I would be standing still and then suddenly it felt as if something had suddenly expanded in my stomach area causing all the blood to fall down to my lower half. I didn't feel faint, it was a bit like going over a hump back bridge very quickly. This was just a single ectopic and didn't happen for days at a time, then I would get one.

My GP though it felt enlarged but a ultrasound showed this wasn't the case, this was September 2014.

I cannot remember what prompted the first wearing of a 24 hour halter monitor, but I didn't get any ectopics whilst wearing it, so was dismissed.

Due to the ectopics happening more frequently, I tried again a year later, still didn't co-incide. and I was once again dismissed. But I was starting to know it was my heart because lying down, I could feel my heart beating in a strange way, so that instead of "ba-dumph, ba-dumph" heart beat, I would get "ba-dumph-dumph" and the third part I would feel in my belly and I could actually see it jump. So I read you could buy your own ecg which is what I did. The following is an early example. As you can see, I wasnt getting one PVC a month, it was now every fifth beat on this occasion.

Gradually these ectopics grew more and mnore frequent, until they all joined together like a runaway train in your chest. Then I would feel as if I was being strangled, I could feel these ectopics as powerful beats that I could feel te pressure of in my groin arteries.

Normally nu VT just feels like a mad squirrel leaping around in my chest, but on one occasion, I thought I might die as it was as if I my consciousness was on a dial that somebody would turn down every three or four seconds, but would spin it back on just before I blacked out, this went on for a bout 45 minutes. I didn't have my ECG with me on that occasion as I would have loved to know what my heart was doing.

[potsiebarbie]

On 4/20/2019 at 5:34 PM, Peter Charlton said:

Initially, I thought maybe I had an aortic aneurysm  as I would be standing still and then suddenly it felt as if something had suddenly expanded in my stomach area causing all the blood to fall down to my lower half. I didn't feel faint, it was a bit like going over a hump back bridge very quickly. This was just a single ectopic and didn't happen for days at a time, then I would get one.

My GP though it felt enlarged but a ultrasound showed this wasn't the case, this was September 2014.

I cannot remember what prompted the first wearing of a 24 hour halter monitor, but I didn't get any ectopics whilst wearing it, so was dismissed.

Due to the ectopics happening more frequently, I tried again a year later, still didn't co-incide. and I was once again dismissed. But I was starting to know it was my heart because lying down, I could feel my heart beating in a strange way, so that instead of "ba-dumph, ba-dumph" heart beat, I would get "ba-dumph-dumph" and the third part I would feel in my belly and I could actually see it jump. So I read you could buy your own ecg which is what I did. The following is an early example. As you can see, I wasnt getting one PVC a month, it was now every fifth beat on this occasion.

Gradually these ectopics grew more and mnore frequent, until they all joined together like a runaway train in your chest. Then I would feel as if I was being strangled, I could feel these ectopics as powerful beats that I could feel te pressure of in my groin arteries.

Normally nu VT just feels like a mad squirrel leaping around in my chest, but on one occasion, I thought I might die as it was as if I my consciousness was on a dial that somebody would turn down every three or four seconds, but would spin it back on just before I blacked out, this went on for a bout 45 minutes. I didn't have my ECG with me on that occasion as I would have loved to know what my heart was doing.

Wow that's intense! It's great that you were able to catch it and it must have been scary in midst of all that for so long. You're a trooper! So how is it treated and is it under control now? What causes it?

[Peter Charlton]

18 hours ago, potsiebarbie said:

Wow that's intense! It's great that you were able to catch it and it must have been scary in midst of all that for so long. You're a trooper! So how is it treated and is it under control now? What causes it?

Two years ago a had an ablation which has successfully stopped the I still get a few palpitations every day, but nothing to worry about, occasionally it will be every other beat for hours, which does make my heart ache the following day. Nobody has told me what caused it, I used to do cycle racing so wonder if I damaged it then?

[Pistol]

1 hour ago, Peter Charlton said:

I still get a few palpitations every day, but nothing to worry about, occasionally it will be every other beat for hours, which does make my heart ache the following day.

This is funny that you mention this! When I used to get horrible palpitations, bigeminy, trigeminy, couplets, triplets etc …  would get really bad chest pains. I told my doctor that this was probably because the heart muscle got such a "work-out". He claimed that the heart does not work that way, but I always felt my heart ache after and during these episodes. And today these severe palpitations and ectopic beats have improved greatly with proper medication. 

[Peter Charlton]

23 hours ago, Pistol said:

This is funny that you mention this! When I used to get horrible palpitations, bigeminy, trigeminy, couplets, triplets etc …  would get really bad chest pains. I told my doctor that this was probably because the heart muscle got such a "work-out". He claimed that the heart does not work that way, but I always felt my heart ache after and during these episodes. And today these severe palpitations and ectopic beats have improved greatly with proper medication. 

All Doctors know is what somebody else who hasn't actually experienced these things has told them.

Just looking at the force of those ectopic beats compared to normal ones should indicate to them that the heart is doing something rather more strenuous than the way they are told the heart works.