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[Sports42]

I have just been diagnosed with Brugada, anyone else out there??

[Charleneadmin]

Good afternoon,

I am sorry to hear of your recent diagnosis of Brugada. I just wanted to let you know that we are here for any advice, support or information you may need. Please do not hesitate to contact us if you would like some help.

Our email address is [e-mail] or call us on 01789 867 501.

Best Wishes,

Charlene, Support Assistant, Patient Services

[luvmyself]

Very sorry to hear of your recent diagnosis of Brugada syndrome. I was diagnosed in 2016 and had an ICD implanted at that time. I have been doing very well, I have had no episodes since the implant. Has your doctor recommended an ICD?

[Sports42 in reply to luvmyself]

I was diagnosed and left the hospital with not a piece of information, no explanations, nothing, I am waiting to see a consultant gene something or other but seriously only knowledge I have is what I’ve read on Mrs Google!! No ICD, thank god, I don’t have black outs or any symptoms other than when I took a serious infection it triggered my heart thus Brugada was first mentioned and then I went for a test which proved positive. I was told it was very rare and that’s about all I have been told. I want to travel abroad in my camper but I am so frightened of getting to hot as they said that could put a strain on my heart! Any info would be appreciated. Thanks

[luvmyself in reply to Sports42]

Because our cases are so different (I was diagnosed and had an ICD implant almost immediately, I also had years of blackouts) I would suggest that you wait and speak with the consultant to find out how they will proceed. Try to avoid Google until you have more information specific to your own condition from the consultant. There are some posters on this forum that have been diagnosed and does not have an ICD. I am sure someone will respond this forum is not very active and it sometimes takes a while to hear back. In the meantime, you can do a search on here for Brugada and previous post will pop up. Everything will workout for you keep us updated on your progress.

[Emerge in reply to luvmyself]

Hey luvmyself,

How often do you get like inappropriate shocks from your ICD, do they scare you?

[luvmyself in reply to Emerge]

Hi Emerge, I no longer have my ICD. It was removed and replaced on 11/01/2018 with a pacemaker because I continued to have syncope episodes and required numerous emergency room visits. During all this time and before the ICD never fired! it was working absolutely fine there was nothing wrong with it! It was checked at the hospital each time and was in good working condition the battery still had years left before it needed replacing my electrophysiologist decided it was best to replace the ICD with the pacemaker to better pace my heart, I have had no problems since.

[Emerge in reply to luvmyself]

Oh thats awesome news! I did hear they make icds/pacemakers together now but Its great that you dont have to have the icd. Glad you are feeling better!

[JKeen]

Hi Sports42,

I was diagnosed via Ajmaline 4 days ago after my father was confirmed. I wasn't given very much information immediately but I had a letter after just 2 days! for an appointment with a cardiologist only next week! So they have begun moving quickly. There was a mention of a genetics sample being taken which I guess will happen next week and I'm sure there will be mention of an ICD too, I had been told that they might opt to not fit an ICD until the brugada manifests itself in some way such as a blackout. However I think this sounds a bit harsh since it could manifest itself in me simply not waking up one day!

The only way to get the information you are after in your specific case is to speak to the cardiologist and ask them absolutely all of the questions you have, take someone with you, tell them the questions you want answers to because if you are like me the stress can make you forget to ask some stuff.

Can I ask which hospital you are with? I was with my local in Milton Keynes but was able to have myself moved to John Radcliffe in Oxford by request. It's an hours drive for each appointment but the speed with which they move and the far superior quality of care you get from the nations top heart hospital makes it so so worth it!

[Emerge in reply to JKeen]

Hey JKeen can you tell more about the genetics sample that was taken?

[Guy_Smiley]

Hi there!

Firstly, welcome and please don’t worry. You’ve come to the right place. A number of people on this forum, like myself, are in the same situation and live normally. I’ve written in some detail how I was diagnosed after my Father passed away in his sleep after having a “bug”. I was advised to go for tests and came up positive by Ajmaline test but considered low risk due to showing no symptoms so no ICD required. Also, the Ajmaline test is now an indicator and not a full positive diagnosis I believe.

It’s not great having no insurance policy of an ICD but they are not risk free either. I now make sure I treat any fevers aggressively with paracetamol and never get dehydrated. If I suffer from sickness and lose fluids then I need to get to hospital but that’s never happened. I must avoid getting over-heated but I’m typing this is in the sun in Italy so again, it’s not a disaster but I just have to be careful.

My biggest problem is things like life insurance (almost impossible) and having to reapply for my driving licence. Car insurance and holiday insurance are now so much higher too.

Having a positive diagnosis but not getting an ICD fitted is, initially, disconcerting but you’ll get used to it and you’ll be fine. It hasn’t changed my life but I did struggle with these dichotomy of having a serious diagnosis that affected my life insurance but not offered treatment.

Keep in touch.

Best

Guy

[Emerge in reply to Guy_Smiley]

Hey Guy,

So currently i exhibit the type 2 saddleback morphology V2 on my baseline ecg. The Electro says he doesnt believe i have brugada but also says the saddleback pattern is rare in his 20 years of experience. I dunno why this isnt criteria for further investigation, but he seems to avoid the option of doing the Sodium Channel blocker test. However, even if i did, my concern is that i may end up in a similar situation as you..it comes back positive but im left with the option of not being fitted an ICD. So then i have to proceed through life with the fear that im not protected or have that backup. I really dont know what to do because i have anxiety regardless of diagnosis.

[Guy_Smiley in reply to Emerge]

Hey!

Hope I can help but please, I am no expert so always seek an expert opinion. My understanding is the sodium blocker test is only used if you don't exhibit an abnormal ECG. My normal ECG is standard and I show no signs of Brugada until this test, and then it shows. I would suggest that if you show the ECG indicating Brugada then seek a second opinion. Do you have other symptoms like fainting or black-outs? What made you have an ECG in the first place?

I think the main issue with Brugada is so few people see it that they struggle to diagnose when it shows. I would seek out an opinion from someone who is a specialist in the field.

Hope this helps a little.... Look after yourself.

Guy

[Sports42]

I have taken myself off on holiday to France because I have still not heard a word!!! I seen the cardiologist who did that Ajmaline test and said it was positive but not a word only one letter to say I could go back to training, I swim and kayak, in all my years I’ve never passed out, actually bar once in Lourdes when I was expecting my second child 25 years ago!! I think someone is going to ring soon and say it was all a big mistake!!!!