Ever have really hard/long ectopics that take your breath away?

[DaveT81]

I've been having increasing issues with my heart rhythm and palps in the last 4 months, following an ablation in June 2017.

Initially things were good, now it seems to be getting worse. I'm an NHS worker so still going to work and I have barely slept in the past few nights as my heart is going bezerk (albeit, not in afib), with really hard, forceful ectopics and pauses of 1-2 seconds.

It's feeling as if my heart has stopped, although I know that it hasn't, but it's now taking my breath away.

On the bus on the way home before, I felt as if the pause was a few seconds, and felt like I couldn't draw a breath. I panicked a very noisy inhale of air through my nose, which was a bit embarrassing on a bus with 10-15 people on it (although, what they were doing on it during lockdown, I have no idea).

It happened earlier too, whilst walking back through the hospital. Felt like my upper chest was constricted for a few seconds and I couldn't draw a full breath.

Does this sound familiar to anybody?

Edit: Adding a link to my last ECG recording on Fri - imgur.com/a/YsyFrfb

[Palpman]

These arrhythmias can really think up new ways to annoy one.

First tachycardia once a week to thumps and then flopping around like a fish out of water.

Now I have "skipped" heartbeats and some are so long that it causes a short panic and I tend to jerk up or cough. I get dozens a day and sometimes they are every second beat accompanied by chest pain.

I have gotten to the stage that I no longer care if my heart stops beating all together. I panic however when the antics get really bad.

The Flecainide has stopped my SVT episodes but my QRS duration has increased to 112 ms that is just over the normal maximum. If the ventricle repolarization is longer than 120 ms then it may cause V Tach and that is not good at all.

I will have to get a Flecainide plasma level to check toxicity but I would hate to stop this drug.

[DaveT81 in reply to Palpman]

I have to be honest too, palpman, but I am feeling the same way. I'm almost willing it to have the guts to just stop beating some days. So many health problems by the age of 38 and a wife that couldn't handle it so I'm really feeling down about all of this now.

Feel as if my heart is just conspiring to pile on the misery.

I'm not sure what the ms is of my QRS but it's getting bigger or 'longer'. I'm really struggling to deal with it now as well.

Was meant to have a 6 day tape before all of the trouble with Covid started.

[meadfoot]

Oh yes Dave I know these symptoms only too well. They are awful. I get pauses of perhaps three or four seconds and they are very concerning. Strangely my stomach then growls and my heart kicks back to normal. It happens regularly and every time I fear the heart won't resume activity.

On other occasions I get what I call donkey kicks where the thud is so fierce it feels as though I have been kicked in the chest. They are nasty but I have to say the pauses are the most frightening. They make me gasp and then my heart goes at a very high rate until it settles again, it can happen several times a day.

I had a seven day monitor recently and of course my heart behaved perfectly throughout apart from a few mild ectopics so again my consultant seems unconcerned. I would prefer an implantable loop recorder fitting but that doesn't seem to be on offer. I feel for you.

[DaveT81 in reply to meadfoot]

I feel as if we're having the same experience haha.

My 'pauses' sometimes feel about 2-3 but there are times I gasp and sit forward or jump awake in bed because I feel like I stopped breathing. I've used my kardia strip to measure and I've only caught 1 second 'pauses' up to now.

I was supposed to have a 6 day tape fitted a month ago but lost my nerve due to covid so now I'll be waiting months again. I may see if I can have it done privately once all of this has passed.

I feel for you too. Always nice to know we aren't alone but when you can empathise with an awful experience it's also sad.

Should also add: I have IBS and most of my bad activity tends to come with bloating, gas, etc. Also think I'm vagally stimulated too.

[polopblue]

Hi Dave,

My own experience is that I have had two ablations in the last two and a bit years for rapid heart beats. I am pleased to say that after the second ablation my rapid beats have stopped however this has been replaced by ectopics. They are few and don't last too long and I have found that they are brought on by eating accompanied sometimes by bloating and excess wind. Once I have rid myself of the wind by burping and or the other method, also deep breaths, then the ectopics settle down and go. The ectopics are accompanied by fluttering sensation in the windpipe area. I have been taking bisoprolol for some time.

I appreciate that we are all different and symptoms are not always the same for everyone and my experience may not help you fathom out what sets off you attacks. I do find that sharing experiences on this site helps us to understand this disability.

regards

Pete

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[DaveT81 in reply to polopblue]

Yeah, I agree. I would be completely lost without being able to get confirmation from people on here that I'm not alone.

I have the bloating and gassy feeling, coupled with stomach and giestion issues. I believe the two are intrinsically linked. I've not yet been able to get on top of the stomach problem though, which is so frustrating. I take omeprazole and I'm trying enzymes at the moment for some good bacteria in my gut.

[DIB69 in reply to DaveT81]

I completely concur with you that digestion and gut issues in general are linked. Lanzoprazole did nothing for me but like you I take enzymes and have recently begun to have a drink of kefir in the morning before food and it seems to be helping. Or is it just coincidence?

[DaveT81 in reply to DIB69]

I wouldn't say a coincidence. The connection is definitely there but I've found that a lot of specialists completely deny it.

How long did you take the enzymes before you noticed a real difference?

[DIB69 in reply to DaveT81]

About 7 days and roughly the same for the kefir (the stuff that contains active cultures is to be found in the refrigeration section of the supermarket). It's really hard to say whether it's these things specifically or a combination of other factors that seem to improve my symptoms. I am convinced, however, that my overall digestive health and levels of stress are a big player in this condition. I've noted that anxiety and stress seem to trigger indigestion and then the old ticker makes its presence felt by 'missing' beats or thumping and bumping around like a wild horse in my chest. At the very worst it can trigger AF......last episode was 3 weeks ago and lasted about 36 hours.

[Goldfish7 in reply to DaveT81]

Hi DaveT81 - I was on Lansoprazole (another PPI) and found it significantly worsened my heart arrhythmias - ectopics atrial and ventricular, tachycardia, etc. Apparently PPI's stop you from absorbing certain vitamins and minerals as they affect stomached acid. I have found over the years that magnesium is helpful in calming my arrhythmias which I think the PPI affected. So no longer taking PPI and heart arrhythmias are not as bad. I'm still taking 200-300mg of magnesium supplement per day. I also make my own Kefir and Saurkraut which is ridiculously easy which I think over 6 months has eased some of my digestive issues

[DaveT81 in reply to Goldfish7]

I have actually stopped omeprazole myself a few times to try something less harsh but each time I find nothing else works and have to revert back.

I may have to give it another go though, as these flutters and ectopics feel like they're going to kill me, they're getting so bad.

[Goldfish7 in reply to DaveT81]

Best of luck - give the fermented foods a go and see if they help balance your stomach/digestion out. Dr Michael Mosley has done a few books and videos about trying to sort out Gut Bacteria which are useful and appear to have a lot of scientific evidence behind them. I know the flutters and ectopics are a nightmare and disrupt sleep badly as well as your waking hours - hope they settle down for you.

[Marytew]

Hi Dave

Firstly, thank you for all your hard work for the NHS. Considering how extra stressful each day must be for you given your work circumstances do you think that this may be a contributing factor to the increased and intrusive ectopics? In addition, having barely slept for the last few days because of them may have additionally compounded the situation. I am only able to commiserate with you as I have no answers but I just wanted to say that I have, on occasion, experienced difficulty drawing breath in association with forceful ectopics. It is a very unpleasant sensation when it happens as I have to make a conscious effort to get air into my lungs. I have also noticed that when it happens it has caused me to briefly stop anything I was doing at the time and that I lean forward slightly – all in the space of 1-2 seconds. The moment then passes but it can leave me unsettled for a while. After it happens I then try to take several deep, regular breaths in and out, which (usually) calms me by giving me something to focus my mind on and, eventually, I start to feel a little better. Take care.

[DaveT81 in reply to Marytew]

Hi Mary,

No problem at all. Working on Covid-19 clinical trials at the moment, so hopefully we can do some good there. I'm not on the 'frontline' per se, but work with those that do.

It is definitely a concern, and I know that the whole situation is getting on top of myself and all of the other staff as well. But it's like being a soldier during a war: you signed up for it, so you 'soldier' on whilst everybody else gets bunkered down.

But yes, all of the experiences with these horrible ectopics come and go within a few seconds but it feels much longer at that time.

I had a big one last night that felt like it last for a good 3-4 seconds and I felt a rush of blood to my head. I did manage to catch a few of them on my Kardia device though.

I'm trying some breathing techniques myself now, so would like to think they'd work out.

[Marytew in reply to DaveT81]

I would think that carrying out clinical trials must produce significant background anxiety in relation to the time pressures involved in trying to get answers – so you mustn’t downplay what you are doing. In addition (I believe) we absorb the anxiety that those around us are feeling – and for you this will include your colleagues as well as family and friends. You mentioned feeling a rush of blood to your head which reminded me that when I have had the ectopics I also felt quite dizzy (and, although this is a different description I think it would equate with a rush of blood to the head). Now I have remembered this, that is probably why I would lean forward when they occurred, as though instinctively lowering my head as one does when feeling faint. Fortunately, my episodes have always been brief, but the 3-4 seconds you experienced must have felt really long and pretty awful. At least, by capturing it on your Kardia device you have proof it occurred because, sometimes, we start to doubt ourselves that something really happened (or at least I do). For me it is about distraction, therefore really concentrating on breathing in and out is the simplest method. Some people have said that breathing in slowly and then ‘huffing’ the breath out in a short sharp way helps them best, while others prefer slow in and slow out. I can’t decide and so I try both ways according to what I think at the time. Take care and be easy on yourself.

[Foulplay]

Dear Dave,

I have these often. I have my whole life . They are scary . Sometimes I have a string of them that last 2-3 minutes. It almost always happens if I don’t get enough sleep. They put me on metroprolol succinate to slow my heart rate. It has really helped . If I start to get one my dr said to pinch your nose and bear down. It usually makes them stop . I think it has something to do with the Vargas nerve . They said none of my irregular heartbeats were life threatening after a 30 day monitor but it doesn’t make them less scary. My prayers are with you in this hard time working at the NHS. I’m in the US and it’s pretty bad over here too although president Trump is opening up a lot of supplies to send to hard hit cities.

[DaveT81 in reply to Foulplay]

I feel for you, as I've been experiencing them on and off for 5-6 years but have gotten so much worse in the last few years since my first ablation.

I find that a lack of sleep doesn't help too. And, of course, that leads to extra beats/pauses which in turn leads to lack of sleep and so on, etc.

I was supposed to have a 6-day monitor myself but the hospital where it was meant to be being fitted had an early outbreak of covid cases amongst staff so I chose to rearrange. But, like you, the last one found nothing as my heart completely calmed down for a week.

I did see a cardiologist a while back though and he said that he suspects they're just harmless extra beats and unless they become 'intrusive' they won't do anything. I'd love to know who judges whether they're intrusive or not.

[Foulplay in reply to DaveT81]

I hope they find they are not serious when you have your monitor . You may ask about the metoprolol succinate to slow your heart rate. I went from 300-400 irregular heartbeats a day to 20 or under. Some are still bad but not like they were without the medicine. Good Luck

[DaveT81 in reply to Foulplay]

So what sort of rate did the drug slow your heart to?

I get really concerned if my HR gets below 60. I had a low resting HR about 9 months post ablation, after losing a lot of weight and getting healthier but these days, as I'm much less active and having a lot health issues, I'm really scared when it gets too low, like it's slowly 'dying'. As stupid as that sounds.

[Foulplay in reply to DaveT81]

My resting heart rate was about 65 now it’s about 58-60 . I wear a fit bit while I sleep so I can see how low it gets . It’s very helpful . It only slowed it a little but it helped even the heartbeats out. I take 1 - 25 mg tablet a day . It really changed my life . They put me on Flecainide and I had horrible reactions to it. It made my irregular heartbeats worse.They took me off of it but left me me on the metoprolol succinate.I started to excercise good again without getting dizzy. When I walk I don’t start getting a bunch of irregular beats. Everyone reacts differently to medicine but this really helped me. I’m an active Grandma who babysits a 16 month old and a 6 month old every day for about 10 hours. I almost had to stop watching them because the irregular heartbeats were so bad but now I’m fine and less tired.

[DaveT81 in reply to Foulplay]

I might have to look into that when I can, as it's become so intrusive lately. I'm getting a lot of dizziness and pressure in my head now, each time I get an ectopic and my heart rhythm, although not in afib, is all over the place.

I had to check my blood pressure last night because when I got back from work it felt like my head was going to explode but my BP was just slightly above normal.

Thanks for your input!

[Foulplay in reply to DaveT81]

I hope they figure it out! I had pressure in my head too when I excercised . It was on top sides and on top of my forehead. I don’t have that anymore either . Everyone is so different and if you don’t follow the usual path it’s hard for doctors to find.

[5195]

Hi Dave, I too have very similar symptoms and find their usually linked to my IBS, (generally caused by stress/anxiety etc) I’m not sure if you’ve seen them but if you watch Dr Sanjay Gupta (York Cardiology) on You Tube he frequently talks about the cardiac/gastric connection.

I had an implanted loop recorder for three years which showed very little (PAC’s/AT etc) and recently as it’s been particularly bad I paid privately for a seven day tape which again Dr Gupta assured me showed benign rhythms only.

The problem for me is that after my diagnosis of AF some ten years ago I have become steadily more paranoid and hyper aware of every palpitation/sensation - there’s nothing like a rhythm disturbance to throw you into a spiral of health anxiety and paranoia!

I sincerely hope you feel better soon and life can return to normal.

[DaveT81 in reply to 5195]

Hi 5195, thanks for your reply. I agree, since ablation I've become painfully aware of every little thing my heart does now.

Also, due to increasingly (presumably, unrelated) health problems, I've found that it has become a vicious cycle of ectopics worsening other problems, which in turn worsens the ectopics.

I've found myself wishing we had some of those amazing health technologies from sci-fi movies that can diagnose anything within 60 seconds and repair you in half an hour.

I'm looking into getting a tape fitted privately too. In the hopes that something can be found as they're getting more powerful/forceful and much more scary now as well. I will check his videos out though, cheers!