Brugada syndrome recently diagnosed

[Brugada]

Hi. Recently diagnosed with brugada syndrome and just looking to chat with anyone who has been living with this for a while. Eager to find out how it is likely to impact my life ...

[Seagull51148]

Hi

I don’t know if you will read this, however I will post anyway.

I was diagnosed with Brugada 15 years ago after a cardiac arrest in my sleep. Luckily my wife woke up and realised something was very wrong, and called 999, they told her to get me off the bed to perform CPR, as she couldn’t lift me she called in our 2 teenage sons to help and, thankfully, they dropped me, which probably restarted my heart. I came round before the ambulance arrived, but went to hospital for a check up.

I was told I had a heart syndrome and sent home. I received a very panicky phone call the next day telling me to return to hospital asap,

On returning I was confined on the CCU ward and told after numerous tests that I had Brugada Syndrome and would be fitted with an ICD. My entire family was checked, and it has been found that my Mother , sister, daughter, niece, and several cousins have the syndrome either type 1 or type 2. It also seems that I have had 2 uncles and 2 cousins die from it, as they all dropped dead from cardiac arrest, but, this was before Brugada was identified.

I had no further problems for 18 months when my medication for an unrelated illness was changed, and that night I had 3 ICD shocks, leading to another week in hospital.

This seemed to have been the spark for a series of shocks, all when I was asleep for the next 5 years, probably totalling about 40. At first I would go to A&E after every shock, but realised that there was nothing to be done, so I stopped going and would phone the Cardiac unit next morning

As you probably know, there is no effective drug therapy to treat Brugada, so it was something to just put up with, which I did. I actually became quite blasé about the shocks, although never a pleasant experience. In 2017 my Consultant at StGeorges told me of a ground breaking operation that could prevent the worst effects of Brugada. I agreed to have the op, and a surgeon was flown in from America to perform it, as it had never been carried out in this country before.

The operation wasn’t a huge success, in fact I had more ICD shocks after it and would get 2-3 in a night. In 2017 it was decided to have another go at an ablation, and during the op it was discovered that I had the ‘scarring ’ in all 4 chambers of my heart, not the usual 2. Thes were ablated and appears to have worked so far. I have hap no new episodes for over 5 years now.

Although there’s a chance that I may get more episodes, I now go to bed not thinking “Will I have a shock tonight “ If I’m honest, it affected my wife more than me, as she would almost be expecting me to wake up with a shout as my ICD shocked me. I did start to get vertigo towards the end of the shocks I was getting which was really unpleasant.

Anyway, I hope this helps you, there is a light at the end of the tunnel, and if they offer you an ablation take it.

I don’t often look in on this site , so sorry if you miss my post.