Brugada

[Wilburis]

hello

does anyone here have brugada?

xx

[iwantpeace]

U mean the bruganda syndrome??? It's very rare inherited genetic disorder that affects the heart. How come u ask about it?

[Wilburis]

Hi

My sister has it.

Im waiting for the test in January.

x

[iwantpeace]

The genetic test? Did she inherited from your parents? How was the diagnosis made?

[Wilburis]

She has ongoing problems with her heart so the cardiologist did the ajmaline test just to rule brugada out. It came back positive straight away.

Apparently the genetic test is not very reliable.

She now has a loop monitor.

Im waiting for my test in January.

As a sufferer of panic and anxiety, its not doing me any good all this waiting and thinking.

x

[iwantpeace]

Ohhh, I see. If the results come back negative
It rules out the bruganda right??

[Wilburis]

Hi

She was positive on the ajamaline test.

Apparently the genetic test is only about 20% accurate.

She does have brugada and depending on her results of the loop device, she may warrant an ICD.

Do you know anyone with brugada? x

[iwantpeace]

No. But I've done some research on the subject
Because I worried I might have.
This type of diseases are called ion channelopathies and are ralatevly rare.
Bruganda it's on the same category as long qt syndrome. Are both genetics
And due to some specific mutations in the DNA they cause
The pores that flow electricity in the heart does not work properly
Thus sometimes it can cause dangerous arrytmias.
Thus is basically a simplified description of bruganda.
Don't search online though as it will make u worse
And anxious like it did me.
When u know almost everything (me) ,you worry about everything.

---------- Post added at 11:27 ---------- Previous post was at 11:24 ----------

The rule out question was about you....if it comes negative is it a rule out or there's still a chance?

[Wilburis]

Hi

Are you on Facebook? There is a great group for people with brugada.

Unfortunately, I tend to use Dr Google a lot and scare myself.

So you have a problem with your heart?

I had an echo on my heart and there are a couple of things noted, like about the "T wave"? Im now waiting for the ajamaline test and an mri on my heart to check for structural abnormalities.

I worry about everything and always think the worse. For example, my 13 year old daughter had a lump on her finger. Dr told me its nothing to worry about, but I thought she had cancer and would die. I was obsessed with feeling it. The ultrasound showed she has a ganglion, which is nothing.

My anxiety is back. I feel dizzy all the time. On the school run, I felt I was walking lopsided and I feel faint a lot of the time. Drs don't understand....

[iwantpeace]

Yes I'm on facebook.
I suffer from hypochondria, panic attack anxiety and depression.
I worry about my heart alot and I think that I might die from sudden cardiac dead.

I've had cardiac echo which came back normal thus it ruled out any structural disease.
24 hour holter monitor came back clear. Stress test alto clear
Ecg normal. But it showed "incomplete rbbb" which the doctor didnt said anything
And when I searched online I found that's usually a normal variant among helathy individuals so I chilled a bit. Physical examination came back clear as well. And the cardiologist said "u have nothing wrong, stop thinking about it.
I also take effexor and I'm about to start Zoloft.

---------- Post added at 11:51 ---------- Previous post was at 11:47 ----------

I feel so fragile. Think my heart is gonna stop. I suffer from very bad tachycardias when I'm panicking

[JeSuisDee]

Hi. I know this is an old thread, but I was wondering if anyone on it found peace of mind. My brother was diagnosed in 2009 at 21. I was 26 at the time. I went to a regular cardiologist that did standard stuff, and I thought I was in the clear. Cut to this year, I started having these little palpitations that started to scare me. After one, I felt lightheaded and panicky. It may have been anxiety, I'm not sure. I decided to go to my brother's GP, who did the procainamide study... negative. No issues on my holter. I'm going to participate in a study to test with Flecainide too, but I feel like due to all the uncertainty around the disease, I'll never be happy with my answers, and always feel like there is a chance I'll have it. The gene, in his case, was not found, so I can't rule it out that way. I just want some peace of mind. I can't get an ICD, since I show no evidence of the disease, it's just my brother's diagnosis...

Any insight? Thanks.

[Wilburis]

Hi

Has anyone else been tested in your family? Your parents?

x

[JeSuisDee]

He was tested, but didn't have anything come back. I just got my test back, and had a "variant of unknown clinical significance", which the EP finds reassuring, but I find scary. I'm speaking with a genetic counselor soon.

[Wilburis]

Hi

What does "variant of unknown clinical significance" mean?

x

[JeSuisDee]

They don't know if it causes it or not :(