Dd having constant ectopic heartbeats - she wants me to ask some questions.

[VentricularEctopics]

Dd is 21, very fit and active (runs long distances and goes to the gym), healthy weight and generally fit and well.

She is very anxious and is autistic.

A couple of days ago she started to have constant palpitations (has had them before probably related to anxiety), after a few hours went to A&E where an ECG identified an extra heartbeat, which she was told were ventricular ectopics. She had blood tests checking thyroid, iron levels, and to see if there were any cardiac crisis markers - all came back clear and she was discharged with instructions to talk to her gp.

She’s talked to her gp, who was very reassuring, sent some information, said that some people get them for a while and that her blood test results were reassuring.

Dd is mainly reassured, but is still worried and it feels weird and wrong! She’s not feeling well in herself, but it’s difficult to know what is anxiety related. She keeps feeling dizzy, but can feel like this due to anxiety anyway.

The constant extra beats are a sensory nightmare and she can’t switch off from it at all. Intrusive thoughts means she’s going from thinking she’s being over dramatic to thinking she’s dying.

She daren’t have caffeine or alcohol, eating feels weird, she daren’t exercise.

Does anyone else have this? Any advice? How do you learn to live with it?

I’ve advised her to ring her gp tomorrow to talk it all through and see if there’s medication that might ease it. I’ve also said if she keeps feeling dizzy she should go back to A&E.

Should have said; she’s been referred for 24 hour monitoring, and depending on the results of that may be referred to a cardiologist.

Does she drink enough?
I used to get the same around 15-20 and in hindsight I definitely didn't drink enough at that age.

Yes she drinks plenty. She’s overly health conscious!

I think she needs to talk to the GP again, or perhaps a different gp at the same practice who is more switched on to autism issues.

The standard advice for this condition is that it usually doesn't need treatment unless it's very frequent. However that will be the standard advice based on a default neurotypical person. The additional sensory overload and anxiety that your dd is experiencing means that the condition is having a significant impact on her quality of life. Treatment is available but she (or you) will need to advocate for why it's important she should have it.

They're a bloody nuisance - I get them when I'm harbouring/recovering from a virus of some sort (the post Covid ones lasted around a year). I also have POTS, so I'm quite conscious of how I feel on a daily basis.

Once it was clear that I wasn't about to expire from the things - from slightly panicked looking GPs saying I needed the hospital immediately when they heard them, then being treated like royalty in A&E until they were happy nothing serious was going on and discharged me - I got to the point of rolling my eyes at them. I did get a finger SATS/pulse monitor just in case and my Fitbit is set up to send notifications if there's any atrial fibrillation detected (absolutely nothing), so I'm confident that if there was anything to worry about, I'd know about it.

She's being investigated to make sure there's nothing 'bad' going on, so hopefully it'll become something that can reframed as something that helps her be aware of her health and stress levels, rather than being so intensely distressing.

If they are stress or POTS related, she might find wearing compression leggings reassuring and reduce the incidence if she's getting up quickly or getting dehydrated, though.

Thank you! These are very reassuring, I’ll send her these replies!

She might benefit from watching some of Dr Sanjay Gupta's videos on Youtube. He has a few on ectopic beats.

He is very focussed on managing anxiety, what people can do to help themselves and trying to understand from a patient point of view.

Thank you!

I suffer from them when anxious and then I get more anxious about them until I end up in a panic attack. They are horrible things even when you know they aren’t harmful.

If they are stress related then doing some mindfulness exercises, yoga etc may help.

I regularly mention mindful stuff and yoga, so maybe this will spur her on to try!

I get them when I'm anxious or recovering from a illness. I have had ecgs, holter monitor etc. Once, I had them for a long period, very badly. We went away on holiday and they eased off, almost immediately. It is reassuring to get the tests done. I found, when I stopped worrying about them, they lessened significantly. I still know I will get them, though, if I have a flu, for instance.

Thank you, you’re all very reassuring!

I get them and have had them for 5 years (still here!).

I take daily beta blockers which did calm them down. I can still feel when I get them but they aren't as strong as they were.

Thank you.

I live with these and it's horrid - I feel for your DD. I had the 24hr ECG and echocardiogram about 10 years ago - everything structurally normal, they're benign.

What triggers mine are caffeine, lack of sleep, hormones (the days leading up to my period) and the worst one - the day after drinking. I don't really drink anymore for that reason. A sudden rush of adrenaline like if for example I got into an unexpected confrontation with someone could set them off badly.

I've been on daily propranolol now for years to help deal with them - I do get the odd ones but I'd say it reduced them by about 80%.

Should we be worried that she currently has them constantly?

I've gone through periods over the years where I've had them constantly for a couple of weeks, it's horrid. My mum is also plagued by them and has been since her 40s but she's now in her 70s and still going which I try to remind myself of!

Distraction is a good technique - they're less noticeable/worrying when you're moving around and thinking about other things so pottering around the house or going for a walk is a good idea when they're bad.

Thank you!
At the moment she feels like it’s worse when she does anything.

She says she’s not feeling anxious about it, but I’m not sure how you wouldn’t be!

I had/have these, along with palpitations. I had a 48hr holter thing and they were spotted on that happening pretty frequently, along with a racing heart. Although I had a stressful job, they seemed to happen even when I wasn’t feeling stressed and often in the evening when I was sitting down or lying in bed.

Although I didn’t feel stressed, I think I’d built up a constant level of low stress that was causing them. Caffeine made them worse so I gave that up and that helped. Changing my job helped too. I was offered beta blockers but decided to try HRT (perimenopause) and that seems to have helped enormously.

At their worst, they were all consuming, like my heart was jumping around in my chest, but I think a lot of that was anxiety and fear. Once I had the holter and once I’d made some changes to improve them, they weren’t so bad - and because they weren’t so bad, I felt less anxious and got them less, even though anxiety wasn’t the sole cause.

I have had times where I have had them constantly, numerous times every day but it was usually due to an underlying stress, even if I wasn't actively thinking about it. I personally don't find alcohol or caffeine affect them. For me, it seems to be stress or illness. Perhaps hormones play a role too? I don't have as many now, post menopause.

Thank you. I’m showing dd these replies and they’re helping.

I would suggest she starts taking 100% rda of magnesium every day before bed, eats a banana (for potassium), a full glass of milk (for calcium) and one bag of ready salted crisps (for sodium) at some point every day. Heart rhythm is dependent on having adequate levels of all of these electrolytes and people can often get deficient in one or all of them which can trigger PVCs (premature ventricular contractions) which are also know as ectopic beats.
She should also make sure she is drinking a sensible amount of water (and not too much) as that helps
If it would help her to know that they are just PVCs and she has a regular rhythm, then take a look at the Kardia (on Amazon) which records an ECG at home in combination with your phone. It gives an immediate indication of what is going on. Any recordings can be saved as pdfs which is very helpful to show a cardiologist as imho cardiac arrthymias always quieten down as soon as you set foot into a doctors office! However, it may not help her mental balance to be able to do this, so you should work this out before buying one.

Is she finding that the extra beats are right next to each other, so one after the other after the other… or is she getting one then 30 seconds later another, 2 mins later another type thing?

I have these (from childhood) and diagnosed POTS now. Treatment involves extra sodium and lots of water!

I’ll pass this on to her, thanks.

The way she describes it, and the ECG, there’s an extra beat all the time.

My dad has a kardia ecg machine so I know how useful they are - I’ll see if I can get one sent down to her.

I’ll get her to look at POTS symptoms to see if any look familiar.