Brugada Symdrome

Hi

I wondered if anyone here has Brugada?

We have it in my family and I would like to chat to someone about it.

Thank you, Liz xx

[PeterWh]

Liz. Have you searched through past posts on all forums?

[cyrilbarnes]

Hi Lizzie, I thought I had posted a reply a couple of hours ago but it seems to have disappeared in the ether somewhere, so here goes again.

I had an SCA out of the blue five years ago – heart had never missed a beat until then! I was taken to Bristol Royal Infirmary where they diagnosed Brugada Syndrome, and implanted an ICD. Life was back to normal within a few weeks and stayed that way until I developed Atrial Fibrillation about 18 months later. I was then given Warfarin as an anti-coagulant to lower the risk of blood clots, and beta blockers to keep my heart rate below the trigger point at which the ICD might fire inappropriately. The beta blockers make me tired all the time so I am not as active as I would like to be, but I guess it’s better than being shocked and losing my driving licence for six months each time.

Fire away with any questions you have and I’ll do my best to come up with some answers.

[Hidden in reply to cyrilbarnes]

Hello Cyril.

I remember you! We have spoken before on Facebook! You gave some great knowledge and advice!

I have a crazy situation:

My sister is type 1 positive with the Ajmaline test.

I and my mother tested negative.

One cousin (on my mother's side is negative and one is positive).

I have been told Brugada does not skip generations, so surely my mother must have it and the Ajmaline test is pointless?

Any ideas?

Regards, Lizzie x

[cyrilbarnes in reply to Hidden]

Hi again Lizzie, yes I do remember our conversation via Facebook but your moniker there was slightly different. Regarding the ajmaline test, as far as I can gather it is only fool proof if it has a positive outcome. I think I probably mentioned in our previous conversations that my sister tested negative but two of her three children have naturally occurring type 1 Brugada ECG’s. There is obviously a lot about Brugada that even the experts aren’t sure of because some cardios say she doesn’t have Brugada and some say she must have – I tend to side with the latter! I have also heard of people who have tested negative, but a few years later have had the opposite result; so they obviously did have it the first time round but it didn’t show up.

[Hidden in reply to cyrilbarnes]

Hello Cyril

Thank you for replying.

I feel quite disappointed in the fact that my cardiologist said that "as I tested negative", he doesnt need to see my children as I dont have it and nor will my kids.

My sister is contacting the cardiologist and giving him the new information about my positive cousin and I am waiting to see what he says. Ill keep you informed.

x

[Duffers1 in reply to cyrilbarnes]

I had an sca out of the blue last November. They think it might be Long qt syndrome which is similar to brugada. I have an icd.im still having tests. Iim interested to hear that you are really tired on beta blockers. I have been tired too although I wasn't sure if it was the beta blockers or the anxiety meds I also take.i am on a low dose bisprolol

[cyrilbarnes in reply to Duffers1]

Hi Duffers, beta blockers do tend to make the majority of people tired but a lot do get used to coping over time. I started on a low dose of Bisoprolol but as the dose was increased I found I couldn’t walk my dogs without coming back knackered. Things didn’t improve, in fact they got worse, so it was changed to Nebivolol which I get on much better with. I still get tired quicker than I’d like but I can do most things; it just takes a little longer.