Looking for advice on what feels like chains of ectopic heartbeats?

[Ix49]

I used to have Wolf Parkinson White, which would occur with SVT runs and ectopic heartbeats which could be quite painful and alarming. My fear was always the ectopics, they'd cause such sudden pangs in my chest that my brain processed them as dangerous. However, it was a fast run in my sleep that then seemed to make me black out which led to further testing. During the further tests, I had what felt like a run of ectopics with a bit of squeezing. I didn't get to see my usual cardiologist, a trainee explained there was a risk of cardiac arrest and I was sent off for an ablation.

The ablation of the WPW/accessory pathway was a success. Nothing else came back from the EP study pre ablation, I was just told I had ectopics and not to worry. I tried to ask why the other Dr had mentioned cardiac arrest and if that was still possible given I was still having chains of ectopics. They just said they didn't agree with her and I was sent home.

It's been 10 years now. I still get ectopics, some I barely notice (like a little jump), some are picked up on ECGs but I don't feel them and others jolt and hurt a bit, usually if I'm stressed. But this year I started to notice them during exercise and with the squeezing sensation they can cause. I spoke to my GP, they weren't worried. I was given a 7 day ECG, I didn't feel anything in those 7 days and it came back that I'd only had 100 ectopics in the 7 days which consisted of PACs and PVCs but nothing to worry about.

However, about a week ago I had a sudden shocking ectopic. It was the usual caught off guard fluttering sensation, but it didn't stop. It kept going for what felt like 5 or so beats, my anxiety was through the roof after the 2nd sensation because I kept thinking of that comment 'could have had a cardiac arrest'. The beats eventually stopped with a squeezing type sensation in my chest. I spoke to the GP, he wasn't too worried. He looked through my file and saw the thing that alarmed the Dr 10 years ago was 'broad complex tachycardia' but they'd not stated what. He seemed to think 1 she maybe made a mistake, and 2 if anything concerning happened the main concern was likely the WPW underlying it at the time.

He's done a referral to cardiology and suggested a loop recorder because he recognises that we need to know what happens during those moments. But I'm now back to severe fears that I'm going to have a cardiac arrest. My biggest fear is NSVT. I explained to him that it feels like a chain of ectopics, but obviously without a monitor I can't say if normal beats are getting through. I'm seriously struggling with anxiety in the meantime. Has anyone else been through this?

[Stuartc100]

Yep ive had 2 episodes of what you call a chain they are called a salvo (4 or more on the bounce) they are scary as all hell, i've been through the ringer with it all over the past 2 years had every heart test and its all come back clear, the school of thought is its actually gastro induced (i suffer with gerd and a Hiatal hernia) so it might be spasms or the vagus nerve is irritated. i've also had ectopics for nearly week but very subdued ones (almost feel like hiccups) i must admit that doubling my PPI's seems to bring them under control so there is some logic to this, and of course anxiety good old anxiety the docs love that one, but who wouldnt be anxious when your heart is flip flopping and banging around!

[Ix49 in reply to Stuartc100]

Thanks for your reply and sorry to hear you're going through it too.

It's interesting that you say it could be gastro, I was suffering with constipation and indigestion at the time when it kicked off worse than normal. Have you had a loop recorder fitted for this? My fear is if they catch it on a monitor it'll be something awful.

The anxiety bit is the worst, I know from the past if I don't downplay it they'll blame it all on that. But as you say, it naturally kicks off when facing the unknown especially when it feels like your heart is jumping. I wish they would factor it in and offer some support with it.

My issue is I can't really take medication (one of the reasons was asthma, I'm not sure why else they advised against it). I'd be happy to learn to manage them better if it wasn't for the fear that my heart might stop from it.

[Stuartc100 in reply to Ix49]

Not had loop recorder i had a 24hr holter though and it picked up something like 25, although sods law i wasnt having a "flare up" ive had echo cardigram, ecg's and just recently and CT angiogram and all have come back fine, there isnt much else they can do for me re the heart, once i got the anxiety under control and i could think clearly there were events that always preceded the attacks for me it was bending over lifting items or not eating for a long time (then once i ate they would actually stop!) all pointing towards my gut.

Get all the tests done, insist on them i have a great GP and she understood i just need that reassurance and it has defo helped me, i know my heart is good (never smoked, and stopped the booze when the ectopics kicked off) and ive lost a bit of weight which is always good. Push for all the tests at least that will settle your mind.