VT??? Please help… @AgentX86 @Tracey_E @crustyg @gemita …. and others?
Hi there guys
It's been a while. I wondered if I could get some advice as I’m really concerned and it's affecting my day to day life significantly due to worry. 3 days ago I had a heart rhythm episode. For context, I have a Micra leadless in the right ventricle and it seems that I feel it when it kicks in (very rarely I’m hardly paced at all). I either have sinus node dysfunction or vasovagal syndrome. I needed an emergency pacemaker due to a long pause. My diagnosis is sinus node dysfunction (but I have a history of vasovagal episodes leading to pauses too).
So when I feel the pacemaker kick in (if in fact it is the pacemaker and not all ectopic beats) it feels exactly the same as ectopic beats, like a thump in the chest/neck. It only ever kicks in for one beat, sometimes two maximum. This heart episode 3 days ago felt like a series of ectopic beats one after another. Powerful ones too (a lot stronger than any pacemaker activity I feel or my normal ectopic beats). It lasted less than 30 seconds but was terrifying in the moment (so powerful). I felt so faint and nauseated I thought I was going to lose consciousness, so called 999 (I got put on hold initially as they were so busy, didn't help with the worry). I was alone with my young son and thought the worst.
In the hospital all bloods were normal etc, they saw lots of single ectopic beats on the monitor but weren't concerned at all. I tried to focus on the event at home and to tell them that it was an episode that had now passed but they just kept saying that everything is fine now! This was clearly a short lived episode like when my heart paused and I needed a PM (they only found that as I had a loop recorder thankfully at the time).
I haven't had any further episodes of continuous ectopic beats. But I have found out that a series of ectopic beats is essentially what VT is. I had no idea. I always thought ectopic beats were harmless. This has distressed me a lot as I have always known VT to be risky. After this brief episode the nausea continued for several hours and I felt completely wiped out for 2 days. I asked at the hospital what could make me feel so dreadfully unwell like this.
The only thing different that day was that I had one cup of real coffee (not decaf) for the first time in months. I do drink caffeinated tea so am not completely removed from caffeine normally. This episode started about two hours later out of the blue whilst I was picking something up off the floor. It doesn't seem too relevant but thought it could possibly be a factor.
I had been doing so well in terms of worrying (it's been 3 years since the PM and I had struggled so much at the beginning due to my brother dying suddenly only 3 months prior to my heart pause and PM insertion of seemingly unrelated, heart failure). He was only 30 and died in his sleep with no knowledge of a heart problem. My dad died suddenly In similar circumstances at age 43 of heart failure with no diagnosis of heart problems whilst alive. I do not have any heart disease etc, although had been getting some unexplained angina type pain on exertion which is unexplained - my arteries seem clear etc from a nuclear CT scan and this pain has seemed to improve over the past few months.
So, back to the arrhythmia issue. I called the cardio physiologist tech people at the hospital the next morning as the hospital said there was nothing more they could do and blood results (electrolytes etc) and ecg were normal. The PM technicians asked me to send a remote download to check my PM was "working" okay and all seems fine. It's very limited what data they can get from these Micras as they're super basic PMs. It doesn't seem that the Micra has a memory for heart events (although I might need to call and ask this specifically).
I wondered, can this single chamber PM cause these ectopic beats, especially this series of beats? I feel like it was ectopic beats and not my pacemaker kicking in this time. What about the rate response setting being sensitive? The pacing voltage? (I had to have automatic threshold testing function turned off as I could feel it every hour). The cardiologist did say that ectopic beats and me feeling my pacemaker would probably feel very much the same! A different cardiologist did explain why the PM is felt and also mentioned pacemaker syndrome. I couldn't fully grasp the significance of that relating to me feeling my pacemaker kick in, as so much was discussed in the conversation. What would you advise? What if it happens again? It's so terrifying in the moment. I live alone with my young son. Should I ask for a loop recorder to be put back in?
I asked my mum to come and stay with me for a few days as I’m so scared. It's 4am and I can't sleep waiting and wondering if it's going to happen again. I don't know why this has affected me so badly. It just felt so wrong and sinister when it happened, it didn't feel right at all. It could also have had a benign cause I assume? Can anyone help me put this in perspective, reassure or advise on the next steps I should try and take. I just want this to all go away.