Heart stops, then thumps

[Tally]

I've been ill with ME for 4 years, and I usually only have problems with fast heart rate but sometimes I get horrible feeling in my chest.

It feels as if my heart is weak, although when I feel my pulse the heart beats seem of normal strength. And then I start having these thumps in my chest which feel like my heart is punching from the inside.

Reading about it online I think I probably have PAC or PVC.

I've worn Holter monitor twice but it has never managed to catch them. Yesterday they started again. I was feeling my pulse in my neck and I could clearly feel that my heart stopped. It's an eerie experience waiting to see if my heart will ever start beating again.

The cardiologist reassured me it's harmless and prescribed beta blockers for tachycardia because I apparently get it even while sleeping. My heart doesn't race any more, which is great, but these pauses in the heartbeat are still freaking me out.

I get other weird symptoms occasionally, like my breathing getting so quick that my airways get dry and hurt, but none of it scares me the way heart does.

Does anyone else get this? Is it normal symptom of ME?

 

[Sushi]

I've been ill with ME for 4 years, and I usually only have problems with fast heart rate but sometimes I get horrible feeling in my chest.

It feels as if my heart is weak, although when I feel my pulse the heart beats seem of normal strength. And then I start having these thumps in my chest which feel like my heart is punching from the inside.

Reading about it online I think I probably have PAC or PVC.

I've worn Holter monitor twice but it has never managed to catch them. Yesterday they started again. I was feeling my pulse in my neck and I could clearly feel that my heart stopped. It's an eerie experience waiting to see if my heart will ever start beating again.

The cardiologist reassured me it's harmless and prescribed beta blockers for tachycardia because I apparently get it even while sleeping. My heart doesn't race any more, which is great, but these pauses in the heartbeat are still freaking me out.

I get other weird symptoms occasionally, like my breathing getting so quick that my airways get dry and hurt, but none of it scares me the way heart does.

Does anyone else get this? Is it normal symptom of ME?

Many of us get short bursts of tachy and skipped beats--I think they are delayed more than skipped. I had them for years and, aside from being scary, they didn't seem to cause any problems.

With various treatments, I very rarely get them now, but yes, they are common. It seems to come from autonomic dysfunction.

Sushi

 

[lansbergen]

Yesterday they started again. I was feeling my pulse in my neck and I could clearly feel that my heart stopped. It's an eerie experience waiting to see if my heart will ever start beating again.

Welcome to the club. I had it too. It did not feel like skipping a beat but real stopping for a moment. It was scaring.

It disapeared with overal improvement.

I think it was the brain pushing the emergency brake.

 

[rosie26]

Hi Tally

I have had all kinds of strange and scary heartbeats. When I was in severe ME I felt like my heart was hardly even beating. Many a time I thought my heart was just going to stop. I learnt a trick though with that one especially if I had weakness and nausea with it. I found if I could bring about a shiver for awhile it seemed to bring me back up to normal so it most likely was low blood pressure ?

I also get the thumping heart and puffing like I have just finished a marathon, this can go on for days until I have rested enough

Also get the fast unusual galloping, fluttering, out of sync heart palpitation. I have had this one long before my collapse with ME. A GP once taught me a manoeuver to do when it happens and it seems to correct quickly.

It is scary Tally, I also found I cannot tolerate some painkiller tablets, I get the slow heartbeat symptom along with all over body weakness and nausea. I think these tablets must lower my blood pressure ? For this one I just had to drink plenty of fluids to get the tablet out of my system as fast as I could. x

 

[aimossy]

I get a weird pulling feeling in my chest.like a huge pause then its like it does a extra big thud pump after.like a muscle seize and then a big catchup.its yuck,feel uuurgh after.get weird flutterings.some times have to catch breath after.
think you guys all got that stuff tougher than me!

 

[Valentijn]

I've had a lot of blood pressure issues, combined with days of elevated heart rate. Also I literally turned blue one night while in the process of drifting off to sleep.

The bad news is we don't really know exactly what is causing it. The good news is that my heart was thoroughly checked out afterwards, and there's no problems with it at all.

Like Sushi said, it's probably autonomic dysfunction, which at least means our hearts probably aren't suffering long term damage.

 

[Sparrowhawk]

I get occasional skipped/bungled heartbeats, which while disconcerting is nothing big. In traditional Chinese medicine they call that "running piglets."

What is really really disconcerting is when I go into afib, i can feel my legs going to sleep. Usually I then spike adrenaline and things get better, but I'm thrown for days psychologically and my sleep and adrenals are trashed.

I've been trying the electrolyte drink SOC recommended and that seems to help with the tachycardia / POTS/OI... I think I did too much salt last week and then threw off my potassium. Trying to get that back into balance.

It's a moving target!

 

[rosie26]

What is afib like Sparrowhawk - what is happening to the heart when that happens ?

 

[Sparrowhawk]

Here is more info on it: http://en.wikipedia.org/wiki/Atrial_fibrillation
Basically it's when the atria (top part of the heart) get out of sync with the bottom part. Instead of a nice one-two one-two rhythm, the top part (atria) are just fluttering.
For me it feels like my arms and or legs are falling asleep -- e.g. the heart isn't pumping blood efficiently.

 

[lastgasp]

... which at least means our hearts probably aren't suffering long term damage.

I'm glad if that's the case for you Valentijn, but unfortunately heart failure is the first biggest cause of ME death after suicide. We also have an increased risk of adverse vascular "events" and perhaps, heart block. Palpitations can be (usually) benign but should be considered warranting further investigation in ME, especially if there are other symptoms of concern like breathlessness and chest pain (which I have and which they're not interested in taking any further than a holter monitor) or fainting. Palpitations are benign in most people but I don't know of anyone with longstanding severe ME who lived a normal lifespan; I think the odds are very much against that.

I'd feel a lot easier in agreeing with you if we were all getting echocardiocgrams and angiograms to rule out cardiovascular disease, but hell will freeze over first. If the results of a simple test are ambiguous but the clinical picture doesn't suggest benign (eg chest pain etc) then the full extent of investigation should be on offer. Instead we're stonewalled with increasing levels of patronising hysterical-ization the more we try to get the tests (which is not exactly easy when you're virtually bedbound and have severe OI anyway).

There's a shocking lack of research into ME heart problems (and severe ME of course), instead we get lots of ambiguous functional "dysautonomia" OI/heart waffle that seems designed to slot onto deconditioning/ sensitization models and funnily enough never leads to stern warnings against GET/GA but even recommendations for behavioural rehabilitation. Lerner and Cheney and a bit of research by MERUK seem to be the only docs in the world thinking this is a worthy area.

 

[lastgasp]

And autonomc disease can cause heart block, so it's not gauranteed the better option.

 

[Tally]

Is it possible dark choclate (over 70% cocoa) could make it worse?

I was trying to test it out by not eating it for a few days, and then eating it again and the skipped beats and fluttering seem to be the worst few hours after eating chocolate.

 

[Sparrowhawk]

Yes, sorry to tell you but any stimulants will not work well if you have a predisposition for heart arhythmias. Chocolate, coffee, caffeinated tea, pseudo ephedrine etc.

 

[Shell]

It seems a lot of us have heart problems. I've already had a couple of mini-strokes, and although one cardio said my heart was fine I am now getting treatment for IST and admission that I have hyperPOTS.
lastgasp I agree with what you say, except that the studies I have read say heart failure deaths are more frequent than suicide in ME/cfs.
I've had a long fight to find a cardio who knows anything about dysautonomic problems and is able to treat me. If I hadn't found him I am pretty sure those TIAs would have lead to a stroke by now.

 

[Katherine]

My ectopic beats started when the CFS started. I never had them pre-CFS. As the CFS improved somewhat over the years, so did the ectopic beats. Interestingly, when I had a full relapse (my only relapse) the ectopic beats came back with a vengeance and they were more easily provoked. As I recovered from the relapse they became less frequent.

 

[Sparrowhawk]

Just had the full once over at the cardiologist. He said of the CFS patients he has seen, I'm tending to less skipped or advanced beats and cardio issues than others, and that is common with CFS in his experience to have such weird beats. Also the echo looks good. We're doing the 30 day holter monitor to see if we can capture any real arhythmias. He thinks I've had SVT not AFIB this whole time. Can't believe I could have been misdiagnosed for 20 years but I'm open to the possibility.

 

[leokitten]

I've been ill with ME for 4 years, and I usually only have problems with fast heart rate but sometimes I get horrible feeling in my chest.

It feels as if my heart is weak, although when I feel my pulse the heart beats seem of normal strength. And then I start having these thumps in my chest which feel like my heart is punching from the inside.

Reading about it online I think I probably have PAC or PVC.

I've worn Holter monitor twice but it has never managed to catch them. Yesterday they started again. I was feeling my pulse in my neck and I could clearly feel that my heart stopped. It's an eerie experience waiting to see if my heart will ever start beating again.

The cardiologist reassured me it's harmless and prescribed beta blockers for tachycardia because I apparently get it even while sleeping. My heart doesn't race any more, which is great, but these pauses in the heartbeat are still freaking me out.

I get other weird symptoms occasionally, like my breathing getting so quick that my airways get dry and hurt, but none of it scares me the way heart does.

Does anyone else get this? Is it normal symptom of ME?

One week or two after my sudden onset illness started this year my heart started feeling very uncomfortable

I could feel it beating very very strongly in my chest (especially when lying down or sleeping) and I could feel it shaking my body and every few seconds my heart felt like it was going crazy "correcting" itself and throwing in extra beats.

Went to cardiologist and 24-hr Holter monitor showed approx 800 PVCs/day.

It lasted like this for months and then very slowly has been going away, I have no more PVCs but still strong beating sometimes. It's less and less every month.

Have to say one of the very early pre-CFS signs I had years ago well before my sudden onset illness this year was a similar feeling like my heart was pounding in my chest and beating uncomfortably but it happened transiently for a short period of time and was much less strong than what happened this year. I did a 24-hr Holter back then and they found nothing.

That being said I believe a person can feel subclinical abnormalities before they become full PACs or PVCs.

 

[Tally]

One week or two after my sudden onset illness started this year my heart started feeling very uncomfortable

I could feel it beating very very strongly in my chest (especially when lying down or sleeping) and I could feel it shaking my body and every few seconds my heart felt like it was going crazy "correcting" itself and throwing in extra beats.

Went to cardiologist and 24-hr Holter monitor showed approx 800 PVCs/day.

It lasted like this for months and then very slowly has been going away, I have no more PVCs but still strong beating sometimes. It's less and less every month.

Have to say one of the very early pre-CFS signs I had years ago well before my sudden onset illness this year was a similar feeling like my heart was pounding in my chest and beating uncomfortably but it happened transiently for a short period of time and was much less strong than what happened this year. I did a 24-hr Holter back then and they found nothing.

That being said I believe a person can feel subclinical abnormalities before they become full PACs or PVCs.

I wore Holter before, even as recently as 3 months ago, and they found nothing, apart from tachycardia every time I move. This time however, they found 500 PVC. Doctor has me on beta blockers.

I'm glad to hear it went away for you.