ARVC hot phase

[YogaAtHeart]

Hello,

I’ve been diagnosed with ARVC this year and was wondering if anyone with the same condition have experienced any of these ‘hot phases’ I’ve heard of.

I was rushed into hospital on Saturday morning with bad chest pain and a headache. I was kept in as my Troponin was high. Since then the chest pain has gone to a 10 on the pain scale and lasts 2 hours each time twice a day.

The pain feels as though someone is ripping out my chest and is excruciating, pain killers don’t do a lot to help except morphine and that only just dulls the pain a little.

Doctors think it could potentially be a hot phase of the ARVC or something different causing the lining of my heart to be inflamed.

I’ve been shielding for 3 months so it’s highly unlikely to be virus related.

Has anyone experienced these hot phases and if so what were they like for you?

Thanks

[Arvc_sucks]

So I also have ARVC from what I can gather depending on the gene that presented itself it can be either aggressive or not. I understand the hot phase as I believe I am in one now. They come and go. Where my energy is null and my chest has a sharp pain in it. Also I wear a heart monitor watch ch and it seems to me like my heart rate drops low often which in turn causes my pacemaker/defibrillator to start pacing. Which also makes me tired. Like constantly walking up stairs. But then I’ll either rest for a bit and it’ll go away and I can feel slightly well enough to continue what I was doing. Hope this helps and God Bless.

[YogaAtHeart in reply to Arvc_sucks]

Thank you for your response, so sorry for the delay it been a bit of a rollercoaster! Has your gene been found? I’m still waiting on my results for that.

How are you feeling now? I had my icd fitted 4 weeks ago now, it’s still a little sore but I’m definitely getting there and all seems to be okay. Has your icd been programmed to pace when your heart rate drops/gets too high? I’ve spoken to a few other people with the same condition and they mentioned that the only thing that helped with the hot phases was a delicate balance of upping their beta blocker medication and in turn having their icd programmes to deal with that. I’m so glad that mine is over but I’m terrified of when the next one might show!

[Nic6 in reply to YogaAtHeart]

My sons icd is set to pace the heart if it drops below 40 and pace/shock if beats over 240/250. He's only 22 and still exercises on a regular basis.