Anyone else with tachycardia/heart murmur/ectopics?

[Bluemin]

For the last 4 years I have had issues with my heart. Im not sure if it is covid related as I think i had covid in March 2020 but no tests were out then. I remember symptoms being bad around Christmas 2020 but not sure exactly when they started.

I have tachycardia, so my heart beats really fast at random times. Usually after eating, when standing up after sitting/lying down, when hot and during exercise.

I also get a lot of ectopic beats, sometimes 3 in a row (trigeminy). Also recently diagnosed with an innocent heart murmur.

I've had all the usual cardiology tests, holter monitor, echo, ecg, tilt test etc. They cant see anything physically wrong but have caught all of the symptoms.

Im just wondering if anyone else has experienced unexplained heart issues like this? I find it really scary even though the cardiologist has been very reassuring and isn't worried at all.

I take beta blockers to control the symptoms (1.25mg bisoprolol). I tried tapering off recently and had an awful experience in a gym class where my heart was racing so badly I thought I was going to faint so I've gone back on them again.

Just confused as to why this has happened to me and feel worried as it just feels like I might drop dead of a heart attack one day even though I'm otherwise really healthy!

Yes me. My heart beats at almost 100bpm and I've had ectopic beats for over a year now. I'd say they happen constantly every 10 seconds or so. I've had an ecg and they just keep telling me it's fine and I'm fine? Blows my mind.

Also on beta blockers but they make no difference.

It sounds like post-Covid (or Covid vaccine) orthostatic tachycardia to me - I have it too as well as a bunch of other Long Covid symptoms.
Viruses can throw our autonomic nervous systems out of kilter.
You may have something called mast cell activation syndrome too which would contribute to the food reactions. A low histamine diet and prescription H1 and H2 receptor antihistamines are sometimes prescribed.
If you're able to exercise then you don't have it too badly - but vigorous exercise can exacerbate things if it is LC.
Look it up - Doctors aren't that well informed, but there may be some Long Covid services in your area, otherwise there are some useful Facebook groups.

I have SVT, with these issues and I am controlling it with beta blockers and avoiding my triggers as much as possible, one of which is viral infection.
Has SVT been ruled out for you?
It is notoriously difficult to diagnose, as it is intermittent and sometimes requires wearing a device to give a 24 hour ecg.

Interesting about the Covid elements.. I had it quite early on, deduced from symptoms and having attended an international conference, as it was pre test. I have since noticed a slight increase in flutters, but thought it could be down to ageing. I will do some more reading round.

Yes, I have 15% burden of ectopics with trigeminy. Also a regurgitating tricuspid valve. My heart rate is actually low- between 45 - 55 bpm.

No treatments, no monitoring. Tough luck!

I have SVT and ectopic heartbeats.
diagnosed about 4 years ago.
The consultant put me on bisoprolol minimum dose but it made me feel awful, gave it 6 months but even he agreed it was counterproductive and told me to stop.
its not at all pleasant and can be very scary when i’m having an episode but i’m just trying to live with it…

Yes me too - diagnosed with POTs post Covid. But also suspect something there before that. Two things have helped - ivabradine, similar to beta blockers but doesn’t lower blood pressure. And HRT - in hindsight I think some of my issues started with erratic estrogen levels in my late 30s and my symptoms always play up towards the end of a cycle.

I’ve tried tapering off the ivabradine as I don’t like the thought of being medicated - but like you the symptoms get worse. So I’ve accepted it now and just take the pills. Means things are much more settled and controlled.

It's so interesting to read these responses.

Since I was a teenager I've had runs of SVT. Can last for ten minutes but in the last 2-3 years I've had them last up to 5 hours, which makes me breathless and frankly exhausted.

Last year I collapsed whilst in a seated position. I had a strong feeling something was VERY wrong, pulled the car over, switched off the engine.

I was out for 15 minutes, cold, grey and clammy, agonal breathing. They're was an off duty paramedic who initiated CPR, the defibrillator did not advise a shock.

In ED I was monitored for about 8 hours. My heart rate for in the 50s, Unheard of for me and my BP was very low for me (I have hypertension). I also slept solidly in a very loud ED.

I saw the consultant the next day who said he thought my heart had briefly stopped. I had a monitor device for two weeks.

And guess what? Nada. Nothing abnormal. I was told I had just fainted. I know that wasn't right 🙄

Yes. Started around COVID times. Inappropriate tachycardia and then fast AF. Ended up having an ablation. On very low dose bisoprolol too and the one time I forgot to take it my heart rate shot up to 130. Still have ectopics, fluttering, missed beats, etc etc. Had one or two whilst typing this. Awaiting another Holter. Bloods fine, not anxious, on HRT.

My Dd has this and has been diagnosed with POTS - started after she had glandular fever. She takes beta blockers, wears compression socks/tights and finds some exercise helps- eg yoga/pilates

I also get a lot of ectopic beats, sometimes 3 in a row (trigeminy). Also recently diagnosed with an innocent heart murmur.

Trigeminy is two normal beats then an ectopic, two normal beats then an ectopic and so on.

I have had this since second covid vaccine. Was really unwell for 6 months, and with hindsight should have gone to the GP. Even light cleaning exhausted me.

It got better, I paid for a private ECHO and have 2 regurgitating valves. I take 2.5mg Bisoprolol, and have found magnesium supplements really make a difference.

As soon as I get any cold/virus I feel really rough and exhausted though.

I've had SVT for about 8 years. Had all the tests including EP study. It's well controlled by calcium channel blockers. Things that trigger it, mainly viruses including covid but also any other infection.
DS(29) started with palpitations and ectopics 6 years ago following a virus, this was pre COVID. His is pretty well controlled by a small dose of beta blocker.

So I think covid probably has a role but only as a virus, in the way other viruses can trigger it.

I've had tachycardia for at least 20 years, it's a bit odd when my heart does a bit of a jig when the rest of me is doing sweet FA but it doesn't bother me.

I developed right ventricular outflow tachycardia with ectopic beats years ago pre-Covid after pushing myself to work while ill with fever. I was under the care of cardiology for a very long time and also used beta blockers, although I tapered them off as I didn’t like them. My symptoms disappeared after a few years, And nowadays, I know that the only thing that triggers the very occasional ectopic beat is illness/exhaustion. As long as you know there is no dangerous cause please try not to worry. In my case it felt a lot worse than it actually was

I have SVT. I first noticed it when I was a kid but I wasn’t diagnosed until I was around 18. I’m now mid 40s. My heart rate is normal until I have an attack and it’ll go to around 170-200bpm. If I can lie down very quickly after an attack starts it usually stops quickly but when I’m out and about that’s not always possible.

I’m on a calcium channel blocker now and I’ve had to cut out caffeine almost completely (I still have a Coke occasionally but I have to have decaf tea and coffee now). I also try to avoid sudden movements and situations where I can’t breathe properly (I couldn’t wear a mask during Covid and if I have a cold or go out on a windy day I’m more likely to have an attack).

Alcohol is another trigger for me sadly. I’m happy to have a non alcoholic beer but I do love wine and the non alcoholic wines are still awful so I’m just trying to cut back when I can.

I’ve recently been through cardiology to check everything out as I had a weird situation at the start of the year where I ended up in A&E to rule out a heart attack and I asked about an ablation but basically because my ECGs look normal they can’t do anything more for me unless I have one done during an attack. Since it’s hard for me to move during one I’m hoping to buy one of the machines for my phone, the cardiologist recommended it to me since travelling is unlikely.

Thanks for the responses. In some ways its reassuring to know I'm not the only one as I dont know anyone else with heart issues.

The tachycardia I have is inappropriate sinus tachycardia with orthostatic intolerance. Basically it's POTS but the cardiologist said my blood pressure did or didn't do something so he cant diagnose it as POTS but the symptoms are the same.

I do really struggle with anxiety but for me it starts with the physical sensations that then make me worry. I find it really hard to be reassured by all the tests I've had because in my medical history I've been told I'm fine a few times when something serious was going on, including cancer, so its hard for me to trust that I'm OK when my heart is jumping around! And a fast heartbeat makes you feel all jumpy and nervous anyway.

I cant take HRT, dont drink any caffeine, drink a small amount at weekend, have a really healthy diet and exercise. I do get very stiff after exercising - I do things like Bodypump at the gym and get DOMS for 3 days or so afterwards but not sure if this is normal or not.

I just don't understand why its appeared seemingly out of nowhere. Especially the heart murmur which they only found in the last few months and despite being under cardiology for 4 years.

Oh and I also get pulsatile tinnitus.

I just sometimes feel like I'm going to drop dead of a heart attack. I tnink the hardest thing is that there is no reason found for any of this. No one can explain it and no one knows why it happens or if it will ever go away.

I actually feel so much better on beta blockers. Those who dont get on with them what were the side effects?

I have had for many years. Originally diagnosed as SVT about 30 years ago and then rediagnosed as atrial fibrillation 15 years ago whilst pregnant. “General” consultant cardiologists missed it (because I was - according to them - too young) and I was only diagnosed after a registrar thought I didn’t quite fit the profile.
Once I got to see a specialist in AF it was all much clearer; now on verapamil and flecainide (was on bisoprolol but it gave me numb fingers). He explained that the only ‘cure’ is heart surgery but the medication should control potential damage. No side effects I’ve been aware of, other than now I very rarely have any AF episodes.
Definitely worth seeking out specialists within the cardio world if symptoms aren’t under control imo.

Bizarre. I also have pulsatile tinnitus in one ear which started at the same time as my cardiac issues. I can tell you my heart rate right now just be listening. MRI was clear.

I totally relate to the physical sensation triggering panic that something bad is going on. With POTs many of us are over sensitive to adrenaline so you have a funny heart moment it causes a surge of adrenaline and then it sets off panic/anxiety. Beta blockers help damp the effect of adrenaline which is one of the reasons it helps. When it happens to
me now I work hard to reassure myself that it’s happened before and never been anything serious. If I get a run of ectopics I try and reset by coughing or blowing hard through pursed lips. It takes time but I’m much better now at not letting a funny moment turn into a full on panic attack…. The other things that can help are exercises to help stimulate your vagus nerve - helps better manage the fight or flight response.

Interesting. I’ve had an ectopic heartbeat since having Covid but also have the pulsatile tinnitus. Never thought of them being related. I gave up tea and coffee and found the ectopic heartbeats almost went.

This is EXACTLY how my svt is. Ive had it for over 30 years and I treat attacks with propranolol and vagus nerve exercises.

Wow, it really is good to be able to discuss this with others who get it. I've felt quite alone through it all as DH can be very dismissive of any health things.

@maymummy22 so interested to hear you say you got numb fingers with bisoprolol. I have been getting occasional numb fingertips on and off, and tingly toes. I saw a neurologist who had no concerns. I wonder if it is a side effect of the bisoprolol? I get Reynauds as well.

Menopause it started cardiologist put me on bisoprolol 12 years ago. This week had a pre op assessment. My BP is well up has been climbing slowly for a few years. So now on calcium blockers too.

Very annoying but I have no choice.

oh my god, are all you people me!? I have inappropriate sinus tachycardia, an innocent murmur and also hypertension. I used to feel like I was going to drop dead but have finally accepted it’s all pretty innocent. Oh and I have the pulsating tinnitus too (usually at bed time!).
also on 1.25mg of Bisoprol which I do think helps.
solidarity!