Diagnosed with Brugada Syndrome

[vininola56]

Hi, I am a 57 year old African American woman, I was diagnosed with Brugada in November of 2008,and had a defrilbrlator implanted on November 11, 2008. I have had no shocks to date. My question is am I alone. I would love to talk with other Brugada patients but especially Afro Americans. I know no one with this disease. I was the 19th child my Mother gave birth to, no one else in my huge family that I know of has been diagnosed with this, not even my son who is an only child.

[Chas]

Hi Vininola56 and welcome to the forum.

As you can see there are several of us BrS patients on the forum so you are not alone. I have no idea about the ethnic origins of forum members but as BrS affects all racial types they are likely to be varied.

There are 3 reasons why your family have not had a diagnoses of BrS ie.

1. You may be the first person to have suffered the gene defect responsible. In this case the rest of your family would not be affected.

2. Other members of the family may have suffered but not been diagnosed due to the limited awareness of the condition. (BrS is relatively rare and only recently identified) Have any of your relatives ever suffered from fainting or have any suffered sudden unexplained death from cardiac arrest?

3. People can have the defective gene but not suffer any symptoms, causing the condition to appear to "skip" one or more generations.

Unfortunately your son will have a 50% chance of having inherited the condition, so it would be worth him considering getting screened, especially if he has ever suffered any faints or blackouts.

[fnmartinez]

The point 1 is extremely rare. Points 2 or 3 are the 99.999999% of the cases...

[vininola56]

No fainters in my family, including my son. Thanks for the information, it has helped.

[vininola56]

I feel isolated and alone, I know I am not but I can't relate and deep down I still find it hard to believe I have and icd implanted. I would love to talk to Dr. Brugada and see what he thinks. I feel funny sitting in front of my computer, I wonder if it is safe,should I not be on it for long periods of time??

[Lady]

Hi Vininola,
I know how you feel. I too am the only one in my family. I do not qualify for the ICD however. This support group is probably the best support you will find. I too live in US. Where are you from? I live in Ohio.
I thought your question on sitting in front of the p/c is a good one. Maybe Chas can add it to the FAQ. We should ask Dr. Br or does anyone know that?
Hang in there. You are not alone!
Lady

[vininola56]

Hi Lady, good to meet you, I live in the great state of Texas. I appreciate you responding to me, it helps to know that I'm not alone.

[Chas]

As far as I am aware there is no need to avoid using a computer for long perids if you have BrS, it has never caused me any problems. I have never seen it mentioned in any reports.

If you have an ICD it is best to avoid strong magnetic of electrical fields as these could trigger shocks or disable the ICD. If you have a mobile phone or any device that uses mobile phone technology, it should be kept one or two feet from an ICD to minimise the risk of interference. Airport security should also be warned if you have an ICD as metal detectors should not be placed close to the ICD.

[Keit]

Hi vininola56!

I'm also a 57 year old woman, diagnosed in June 2008, and received my ICD in Dec 2008. Depending on where you live in Texas we may not be that far apart! I live in west central Arkansas.

My ICD went off 5 months after I got it while I was raking leaves. It wasn't nearly as bad as everyone says, it was mostly a big surprise. I wouldn't choose to do it all the time but I'm not afraid of it now.

Everything about having BrS is weird, this site is a real lifesaver! Most of us don't have anyone to talk to about BrS in person except our own families. This is our Brugada family and we have a strong bond. Please don't feel that you're alone, we're here for each other. Someone will have an answer (or an opinion!) to any question. Or we can just talk!

Keit

[vininola56]

thanks Chas for the information. I am in dire need of having some teeth extracted, do you know if this will be complicated because of the icd? I'm in pain and am a nervous wreck.

[vininola56]

hello Keit, I am southwest of Houston. It is good to be able to talk with others that are going through what I'm going through. I am wondering what it will feel like when the icd goes off, you calmed my fears about the impact,but I wonder if it's different for each of us?

[Keit]

Houston's a little far for a quick visit but at least we have this!

Dental work isn't usually a problem. Just be sure your dentist knows about the Brugada and that you have an ICD for back up. The website brugadadrugs.org lists lidocane as a drug preferably avoided but in the amounts used for local anesthetic, by dentists or with steroid shots, it's safe. I've just had dental work done and in Dec I had a steroid shot in my hip, both with no problem. If you never had anything weird happen before you knew about the BrS you should be fine.

How were you diagnosed? Did you have symptoms or was this out of the blue? I felt palpitations at the base of my throat and got really out of breath that didn't get better when I stopped raking. Now I know that if I feel like that I should stop what I'm doing and get someone to stand by just in case.

As far as how it felt when I was shocked, it could very well be different for different people. Fnmartinez has been shocked multiple times and said it felt like a definite electric shock. My son, who was the first in our family diagnosed, was shocked soon after he got his ICD because it was set too low. He also said it felt "electric," like a small explosion. I don't remember feeling anything electric, I felt like something pushed me really hard. I heard a thunk and the next thing I knew I was turned around about 135 degrees to my left looking at the ground. I must have blacked out for a split second and was on my way down but didn't fall. It all happens very quickly and there's no residual pain at all. My son didn't have pain afterward either. He said it's possible that the pain was there for me but it's over so quickly that it just didn't register. Is that a nice way to say I'm slow??? Hmm... Anyway, this would be a good topic for discussion since it's on everyone's mind to some extent.

Have you had genetic testing? Another discussion, maybe tomorrow. Try not to worry, I know it's easier said than done. Someone here referred to her ICD as her angel on her shoulder and others call it their own mini ambulance crew. The bottom line is that the ICD works and it's not so bad!

[vininola56]

Well, I have a dental appt. tomorrow for a consultation.No genetic testing in my family. I did not have fainting spells, I would have problems walking in the grocery store, I would experience things starting to fade,shortness of breath,a very strange feeling and then my mouth would continuously fill with spit, I would grab a box of kleenex and begin to spit into the kleenex over and over and I'd get so hot. That happened about three times and I didn't dwell on it because each time it would go away when I got outside in fresh air. One day sitting, talking to my sister I began to experience chest pain,pressure, she called 911, I was stabilized and taken to ER, from there I was admitted and kept overnight, the next day when the Cardioligist discharged me he told me something was wrong but he couldn't figure out what it could be because all his test were coming back normal, but when they did an ekg (EEG) it showed I was having a heart attack but I felt fine. I saw my regular Dr. the next day and when he did a test on my heart it showed I was having a heart attack,so back to the hospital, the same cardioligist was on duty, said he was not surprised to see me. He supected what was wrong but said it was out of his area of expertise, he then called in Dr. Cheng who happened to be flying in from New Orleans and he said he came straight from the airport to see me, he asked questions and said that he was like an electrician for the heart and he believed I had Brugada Syndrome but we'd only know for sure after he did this test, long story short, he did the test, I had Brugada and in went this icd. I think I feel safer with it thereand I have had no more of those episodes,I hope Keit that I haven't bored you too much. take care.

[Keit]

How did it go today at the dentist? Wow, you had a scare before your diagnosis. Wasn't it lucky that Dr. Chen was there to see you when you needed him! I wasn't bored, none of our stories are boring. We NEED to tell our stories, it helps us and it helps others. Especially those who don't have a definite diagnosis or have the diagnosis but no ICD. Hope you feel ok tonight!

[vininola56]

The dental appt went well, only I went there in pain and left there in pain and am still in pain. Our plan is to remove the teeth in the hospital while I've been put to sleep, now to convince the insurance company of this. So I'm just gonna take it easy and stay out of the air and away from the noise that 3 and sometimes 5 grandsons can make. I don't have much to talk about today,but you have a very good and blessed day.