Question for ACM/ARVC folk: Nocturnal ectopics/PVCs

[EmmJayTea]

Hello. I have some questions for other people who have ACM/ARVC and I hope you will be able to help.

I'm feeling very groggy this morning. I was woken at 1am by frequent noticeable ectopics/PVCs and some non-sustained VTs (ratio of at least 3 per normal beat, approx total 90-110 PVCs per min). It was the thudding in my chest which woke me and I felt very unsettled. This lasted for a good hour and a half. Blood pressure was fine and I didn't go dangerously tachy (mean HR was around 55), which is good, so my ICD didn't need to deliver therapy. It was just uncomfortable.

I'm interested to know if other people with arrhythmogenic ventricular cardiomyopathy experience a similar thing? Is this par for the course? Does it stabilise or become more/less frequent?

I'm tempted to do an ICD data send to my clinic, for them to check it out.

I've had this 3 times now (twice in August), nothing in September. The August episodes accompanied anxiety attacks. Last night, I felt much calmer and was able to accept that it was happening without panicking.

Quick backstory: I was diagnosed with ACM (formerly known as ARVC) in August and had an ICD fitted 8 weeks ago, following a dangerous sustained VT episode in early August.

Overall, I am feeling better with each week that comes. I am trying to be as realistic and positive as possible as I adjust to a new lifestyle. Last night's rhythm wobbles unnerved me a bit.

Thank you for taking the time to read this. 🙂

[Deejay62]

Hi I have dilated cardiomyopathy and various arrhythmias.

Between the 9 months I’ve seen my cardiologist I’ve had colds, chest infection and things I can’t mention.

I’ve been woken several times with my heart beating faintly fast. It’s annoying because I’m not sure what kind of arrhythmia it is, it feels new. Sometimes I’m able to go back to sleep and other times I can’t, I feel wide awake. I’ve had a period where I’ve woken with a faint stabbing pain in my heart I kept thinking it’s going to get worse like a heart attack but it remains faint. I keep looking at my monitor or expect to be zapped by my defibrillator. It is nerve racking, I try not to panic but deep down do.

I’ve been living this up and down for 5 yrs but there’s more up than downs.

I’m seeing my cardiologist on Friday so I have a lot to tell them. Hopefully it comes up on device clinic monitor and they can explain.

[EmmJayTea in reply to Deejay62]

Thanks for sharing your experience. It's very early days for me, so I have a lot to get used to and lots of questions whizzing about in my head.

Yes, the device monitors capture a lot of useful info, so I hope your chat on Friday is fruitful.

If it helps, I had a call from my cardiology clinic today to reassure me that nothing dangerous nor causing concern had been noted by my device. This is reassuring. If I get more of these episodes, then they may tweak my medication.

[Deejay62 in reply to EmmJayTea]

That’s very good news at least it’s not your heart. All the best