New To This...

Use this discussion board to address concerns or to find support from others with the disease.

New To This...

Postby Simon » Sun Jan 04, 2015 9:56 am

Hello,

My name is Simon. I am 30, from Canada.
Recently I went to the hospital for chest pain & arrhythmia. My ECG came back with RBBB. Which was weird because I've had a few ECG's in the past decade, all came back fine. So, they did another ECG + blood tests + chest x-ray. The blood tests + chest x-ray came back clean. The emerg doc was able to definitively rule out a heart attack. They also gave me this substance (that happened to have a numbing effect in the mouth/throat) to try and see if it was gas. Anyway, the doctor acted all non-chalant/stoic about the whole thing. He did say that the RBBB itself wouldn't be worrisome, but the fact that i was having chest pains made it worth investigating (ha). Anyway, he said he wanted me to see a cardiologist to be on the safe side (i agreed). So he wrote me up the requisition and handed it to me. I didn't read it until the afternoon (as i was tired from being at the hospital for 7 hours). So i read it and i see, "RBBB. Brugada?" - I am like, what the heck is Brugada? So i go on the net...and well. I just can't believe it. This is a very serious, potentially deadly thing, and the guy just acts like he could give two cares in the world on the surface - even cutting me off/talking over me and rolling his eyes. Why the hell would he write this? is he a sadist? I mean wouldn't he have had to see something on my ECG to warrant an assumption of such a heavy thing? It's driving me mad. Appt not for another week. Any responses? Thanks so much.

-Simon.
Simon
 
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Joined: Sun Jan 04, 2015 9:44 am

Re: New To This...

Postby Laurabeth » Mon Jan 12, 2015 3:54 pm

So very sorry Simon. We are also very new to the world of possible Brugada. We visited an emergency room after my son had a syncopal episode and were told to follow up with a cardiologist to rule out Brugada as well. We contacted our sons cardiologist and were more or less blown off since it was during the holidays, and were told that they could schedule another consultation sometime in January. Not a good answer......so through a friend we got a quick appointment to see the electrophysiologist in pedatrics in the Medical Center. The cardio EP doc was also concerned with Brugada after the office visit and EKG. We are waiting for January 20th, when my son is scheduled for a procainamide challenge to test for Brugada. As a mom......I'm scared every minute of every day. I know you are scared too.....just hang in there. Get the appropriate....and swift care that you need. I hope you get testing soon and get brugada ruled out!
Laurabeth
 
Posts: 2
Joined: Tue Jan 06, 2015 5:16 pm

Re: New To This...

Postby ggVal19 » Tue May 19, 2015 10:32 am

I was diagnosed with Brugada 23rd March 2015. In 2006 I collapsed in the passenger seat of our car. I had no chest pain just a terrible dizziness. My husband had to resuscitate me. After tests at the hospital I was told I had had a heart attack. Subsequently I had dizzy spells and a blackout. I then developed paroxysmal AF. During one attack of AF I was given flecainide. When my heart was back in sinus rhythm it showed a Brugada pattern in V1. I was referred to an eclectrophysiologist. Before I had the appointment I had 2 seizures. No neurological problem was found. I saw the electropysiologist and because he had not seen an ecg for any of my symptoms I had a an ILR inserted. I had no symptoms for 2 years so they then decided to do an ajmaline test. It was positive almost immediately. My point is that it takes time to diagnose Brugada. No doctor wants to make the diagnosis because of the implications. I was told had I seen the right doctor in 2006 I would now have an ICD. I was however fitted with another ILR. The effect on my family has been devastating. My youngest daughter has 2 sons and she is being tested this week. I am so worried that she may prove positive. My eldest daughter is so afraid that she has refused the test. I was 56 when I had my first symptom I am also female so not the normal patient for this syndrome.
ggVal19
 
Posts: 4
Joined: Sun Mar 29, 2015 12:15 pm

Re: New To This...

Postby Chas » Wed May 20, 2015 4:33 pm

Hi ggVal19 and welcome to the forum.

It is always a difficult time when the first member of a familly is diagnosed with BrS and it will take time to come to terms with it. While the screening test are not particularly difficult, it can be quite stressful waiting for answers. You may also find that many doctors do not have a lot of experience of the condition and it is best to talk to an "expert" if you want detailed information.

If you still have unanswered questions, some of us have found it worthwhile to check the internet for information as well as talking to our doctors, although you need to be careful as some of the information is old and there are differences in opinion between "experts" so check several sources the talk it over with your specialist.

You can also ask questions on this forum to get answers from a patients perspective. Replies can be slow these days because we were hit with huge quantities of spam some time ago that made the forum unusable. This took months to resolve and many regular poster appeared to give up. Hopefully they will come back as people start to ask more questions.

Just remember that many people live long and normal lives with the condition. If someone is found to be at high risk an ICD provides very good protection, and those considered as low risk, a few precaions will help to keep the risk low
Chas
 
Posts: 249
Joined: Wed Aug 13, 2008 11:22 am
Location: UK

Re: New To This...

Postby ggVal19 » Thu May 21, 2015 1:21 pm

Hi Chas. Thank you for the support. Sometimes it is better to speak to people outside the family as they are not emotionally involved. I am keeping everything crossed for my daughter for her test tomorrow. My girls are particularly worried because of how this whole thing started. My husband has never recovered from having to bring me back. Had I been asymptomatic I think the concern would be less.
ggVal19
 
Posts: 4
Joined: Sun Mar 29, 2015 12:15 pm


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