AV block and possible pacemaker

[Pachira1243]

Hi everyone

Quick history - I've suffered from missed heartbeats for 3 years or so now, sometimes I can feel my heart missing every 4th beat. I also have a low heart rate, often drops down to 40bpm.

I had a loop recorder implanted in March 2023 to understand more about my heart rhythms. It's picked up AV block 2nd degree, I saw a cardiologist on Monday who has now referred me for a cardiac MRI, but is talking about me needing a pacemaker. Even though I know that is the preferred treatment for some AV blocks it's still a big shock as I'm only 42, fit and healthy otherwise with two young children. They did say they'd really think hard about it due to me being young.

Over the last couple of weeks my Garmin watch has shown a couple of random dips to 32bpm just in the middle of the day. I've not felt any symptoms, but wonder if that is how AV block would show up on my watch?

I'm also now really struggling with anxiety wondering if I'm suddenly going to collapse, which I know rationally isn't likely otherwise the cardiologist wouldn't have let me just go home. But I'm finding it hard to not overthink it all. I keep really hoping that they are wrong.

Is anyone in a similar situation who might have some encouraging words? Or experienced similar with random heart rate drops?

[SteelyD]

Hi,

I have just been diagnosed with a slow heart beat and recommended for a Pacemaker. I too have a Garmin watch which has been recording rested beats as low as 32 usually when Im relaxing or during sleep. The cardioligist says that the high level natural pacemaker in my heart isn't working. I havent passed out but I do get lightheadedness and when my heart goes slow I feel fluttering in my chest and palpitations in my neck. It is a bit worrying and I fear that my heart may just stop. The consultant doesnt seem too worried about it and the thing is he reckons it could be a year before I get the Pacemaker. (unless things get worse)

I have asked if I can get the Pacemaker sooner and also asked him for a diagnosis, because I don't know how I stand with travel insurance etc. early days

[Pachira1243 in reply to SteelyD]

Hi - thanks for your reply. It's always reassuring to find others in a similar situation, even though it's an unfortunate situation. Did your cardiologist talk about AV block causing the low heart rate? I stupidly didn't ask more about that at the time as I got thrown by talk of a pacemaker, so am just waiting for the follow up letter to get more details. I'm being referred for more tests to see if there's any possible underlying cause, but the Cardiologist I saw didn't think they'd show anything up that would change things. I didn't ask about timescales either, and the waiting is so hard mainly the mental worry of it all I also fear my heart will just stop, and like you say knowing what you can plan for too.

It's good they didn't seem too worried about it, I also didn't really get a sense of urgency.

Since mention of a pacemaker though I suddenly seem to have lots more symptoms, so there must be anxiety at play as I felt quite well up until that point.

[SteelyD in reply to Pachira1243]

Hello again.

The Cardiologist didn't mention AV Block to me ( not that I can remember) just a slow heartbeat. I think I mentioned it to you but I wrote to him via his Secretary with questions and I got a reply the other day ;

He said my diagnosis is "Sinus Node Disease" which I'm sure he didnt mention on the day.

He said that he has urgently requested a Pacemaker for me.

we'll see.

[Pachira1243 in reply to SteelyD]

Hi, apologies I only just saw your message. That's great that you got a response back through his Secretary answering your questions. How do you feel now you have a formal diagnosis? Fingers crossed that you get your pacemaker quickly, not sure what the waiting times are like for that.

I had a follow up letter from my consultant which was really helpful, and actually said that they'd discussed my case in the MDT and decided that I don't need a pacemaker at this point seeing as I don't feel too poorly currently. I've got an exercise treadmill test next week so will see what that shows. Still waiting on an MRI appointment. I'm much less anxious about things now I seem to have a plan to follow.

[SteelyD in reply to Pachira1243]

Hi Pach, Sorry Ive just noticed that you asked me a question of how I feel about my diagnosis. I dont really know because I dont really know how serious it is. Also up till now its alwayas been described as a 'slow heart beat' . This sounds so much better than 'Sinus Node Disease' - that sounds more serious. I suppose I have to just not think about it untill I get the call for the Pacemaker. He has told me to look out for the next level of seriousness which would be feeling dissy or passing out. I do get slightly lightheaded now and then but nothing to worry about - so far so good.

Your investigations Scan. treadmill etc seem much more thorough than anything Ive had. I suppose this is just the difference in health boards. Im in Scotland.

[EMBoy]

Hi,

I understand exactly how you are feeling - I have 2nd degree AV block (Mobitz type 2) and a pacemaker.

In AV block, your atria will be beating at normal sinus rhythm, but some of the signals will not go through to the ventricles and your watch will pick this up as a low heart rate.

About a year before my pacemaker was fitted, I noticed lots of missed beats and I started feeling light-headed and slightly off balance. I would be walking along the pavement and would find myself drifting off to one side. Eventually, I did collapse (twice) and, the second time was taken to hospital after the paramedic spotted my AV block. My pacemaker was fitted 24 hours later and the cardiologist said that at 63, I was too young, and as I was a smoker, insisted I have a CT scan to make sure there was nothing else wrong. Luckily, it showed only minor calcifications.

I know the thought of having a pacemaker at your age is very daunting, but if it does come to it, don't worry about it too much. The surgery is quite uncomfortable, but not painful and after a couple of weeks of recovery (which is slightly painful) you will be able to live a normal life, doing all the things you did beforehand. It's 4.5 years since I had my PM fitted, and there are many times I don't even think about it.

Hopefully you won't need a pacemaker, but if you do, it will give you a whole new lease of life.

All the best!

[Pachira1243 in reply to EMBoy]

Hi, thank you so much for your reply it's really kind. And it's reassuring to hear. I'm really pleased you are doing so well post-pacemaker.