"Low Risk" - My Experience

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

Re: "Low Risk" - My Experience

Postby Keit » Thu Jul 11, 2013 3:57 am

Hi Stinger and Jennie,

Susan is right, keep looking for a doctor who really knows about BrS. Unfortunately, that's easier said than done since we often can't tell how much they really know! And it's true that BrS doesn't always show up the same in every EKG you have.

This is so frustrating. I wrote my original post 4 ½ years ago and it doesn't seem like anything has changed. There is still no standard protocol unless you have really strong symptoms, test results, or cardiac arrest. I believe in what I wrote in my first post. As a matter of fact I believe it even more now. I'm trying to write an update but it's hard to keep it short and it's stressful to write about.

The tests are not necessarily good indicators of BrS. My son, who also has BrS, simplified what our doctor said about the tests with this analogy: A kid is bouncing a ball against a door, catching it as it comes back to him and bouncing it again over and over. Every once in a while after he bounces the ball, the door opens unexpectedly and the ball goes through instead of coming back to him. There is no way to know when or why the door opens so there's no way to hold the ball instead of bouncing it. During the tests, even though the doctors are trying to stress the heart to make it react, they can't always “hit the open door” at the right time and there's only a small reaction or even no reaction. It doesn't necessarily mean you don't have BrS, especially if you have other indications that you do.

My son and I were told for years that our EKGs were not normal but since they couldn't find anything else wrong they must be normal for us. If your EKG looks like the BrS pattern, it probably is! If I hadn't found another doctor I wouldn't have made it back to the first one for my 1 year appointment. My ICD has saved my “low risk” derriere a total of 9 times!

Jennie, the biggest factor in my doctor's opinion that I should have an ICD was the fact that my brother died of sudden cardiac arrest at age 29. I had genetic testing and was lucky to have an identified BrS gene mutation so we could test the rest of the family. Even if I didn't have that gene I would have gotten the ICD because of my brother.

Diagnosing BrS is usually difficult and knowing what to do about it is often even more difficult. Doctors can run tests but have to look at the entire picture, including ruling out other heart conditions. If you have BrS, the bottom line is still that no one can predict what will trigger problems in each individual who has it. Current tests aren't a reliable measure of risk. ( Look for Chas's post above about this study http://www.ncbi.nlm.nih.gov/pubmed/21636035 ) While it's easy to stress over this, don't let anyone tell you it's all in your head. You need to trust your doctor but you also need to trust your gut.
"Low Risk"-My Experience
http://www.brugada.org/support_group/viewtopic.php?f=2&t=501
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Re: "Low Risk" - My Experience

Postby stinger98 » Thu Jul 11, 2013 5:47 pm

Hey keit thanks for the reply. I know exactly what u mean when u talk about fruatration. I am going to seek out another drug challange just to try and be on the safe side. Actually I trust My EP doc a lot. I have a long history also with anxiety and since this brugada thing its now more like a depression. I know for a fact I have head stuff going on. But when is enough just that.....enough?? I mean seeing DR after DR is like just asking for a ICD even when tests are negative. I mean I want to live a full healthy life like most anyone else but I've already mentioned 2nd opinions to My wife and dad who now Think I'm completly nuts. I have to get on a depression medication. I can't believe there is not one out there that dosent block sodium channels. My symptoms see faint like feeling fatigue and palpatations......which can be related to anxiety and depression. I really just don't know what to do. Where are all the people who had weird ekgs and negative test results?? There has to be people out there who have been in My shoes.
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Re: "Low Risk" - My Experience

Postby stinger98 » Thu Jul 11, 2013 5:51 pm

Also I should mention for what its worth Dr Ramon brugada had seen 10 ekgs of mine and has been made aware of My ep study and drug challange. Wouldn't he advise something else of he thought I was at some risk?
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Re: "Low Risk" - My Experience

Postby Keit » Thu Jul 11, 2013 7:09 pm

You really are in a tough place. Xanax seems to be safe but is antianxiety, not antidepressant so it may not help you enough. I know research is ongoing but there are no definite answers yet. They can't give patients a medication and watch to see what happens, they have to use lab models which takes a long time. This is a big topic on its own so more later.

Dr. Brugada can only do so much long distance and as much as I appreciate the fact that he takes the time to look at what we send him, he's not always right. He agreed with my first Dr. that I was low risk. (I really need to get my update posted.) It turns out that contrary to test results, I am high risk and I'd be dead now if not for my current Dr. and ICD. Current tests are not definitive. Like I said before, a positive result shows you're positive but a negative result doesn't necessarily mean you're negative. They need to look at everything and be willing to “err on the side of caution.”

Where do you live? Probably a dumb question but have you searched the “list of doctors” thread? Are you willing to travel to see a Dr. people are happy with?
"Low Risk"-My Experience
http://www.brugada.org/support_group/viewtopic.php?f=2&t=501
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Re: "Low Risk" - My Experience

Postby Keit » Thu Jul 11, 2013 7:45 pm

Jennie, I was so concerned with you and your daughters I neglected to tell you how sorry I am about your brother. It's been 13 years since I lost my brother and I'm sorry to say that it never gets better. He died 3 years before BrS was a named disease so it wasn't until my son was diagnosed that we knew why Joe died. We still miss him, and what should have been. His death saved my life, and my sister's, son's, and Mom's lives.

I suppose there are people with BrS who are low risk. My Mom is probably one of them since she's never had problems with it. But she has an ICD because she has the gene and her child died from cardiac arrest. Since there is no way to know when or what will trigger the arrhythmia the only sure protection is an ICD. You have been told you have BrS and your sibling died from SAD. That's a pretty definite diagnosis.

Write down ALL your questions and ask them at your appt., check into genetic testing, and try not to be bullied by the doctors. If you're not comfortable with the answers you get, check the "list of doctors" for one other people in your area trust and like. Hang in there and try not to panic.
"Low Risk"-My Experience
http://www.brugada.org/support_group/viewtopic.php?f=2&t=501
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Re: "Low Risk" - My Experience

Postby stinger98 » Thu Jul 11, 2013 7:47 pm

I live in southern califonia. I checked the doctors boards. Got a couple names. Thanks for all your help, I do appreciate it
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Re: "Low Risk" - My Experience

Postby Keit » Fri Jul 12, 2013 3:01 am

I've met Dr. Vincent Chen at UC San Diego and like him a lot.
"Low Risk"-My Experience
http://www.brugada.org/support_group/viewtopic.php?f=2&t=501
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Re: "Low Risk" - My Experience

Postby devega_lynn » Fri Aug 02, 2013 1:48 pm

hello keith i was also diagnosed having brugada syndrome and need to be implanted by ICD, when i read your story on how ICD worked for you, i was a little bit scared, was that the always reaction when it shock your heart, you faint? and as if something hit you? just curious...atleast i can have a hint on what will happen to me in the future having that device, thank you...
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Re: "Low Risk" - My Experience

Postby Keit » Sat Aug 03, 2013 1:32 am

I didn't mean to scare anyone by telling my story, I wanted to share for several reasons. One was that we all wonder what will happen if we get shocked and how it will feel. My experience shows that it's not always the same, it's very unpredictable which makes it impossible to prepare for. What you feel and whether or not you faint depends on a lot of factors.

The ICD monitors constantly and makes corrections as needed. You may be paced numerous times and never even know; you don't feel it at all. But if your heart acts up and pacing doesn't work, the ICD increases the therapy until it either gets you back to normal or has to shock. During that time, some people say they feel things going on in their chest. If the problem continues and your heart isn't pumping enough blood to your brain, that's what causes you to faint. The shock itself doesn't make you faint. You definitely feel it if you're awake but I didn't experience any lingering pain. It happens very quickly.

Remember, you may never get shocked, your ICD could keep you safe without ever needing to shock.
"Low Risk"-My Experience
http://www.brugada.org/support_group/viewtopic.php?f=2&t=501
Keit
 
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Re: "Low Risk" - My Experience

Postby CB1990 » Wed Mar 09, 2016 1:00 am

Thank you so much for all this great information. My son was diagnosed in Dec. 2015, an external defibrillator was attempted and failed, the device could not sync with his heart, poor readings or no reading at all. The device was sent out for testing but doctor feels it just was not a good fit for him, didn't work in his body. So at 25 he did not yet opt for the single-chamber defibrillator. He was tested positive genetically.

When this first came about there had been a period of time (like 2 weeks) where he was dizzy and an episode occurred at school, found himself on the floor and didn't know how he got there. For a 3-4 week period of time going from his reg. cardio doctor to a specialist, the Brugada pattern was seen without the use of drugs. I think that we got more information from this forum than we would get from continuing to seek 3rd, 4th and 5th opinions. Thank you for sharing your situations.

Laura
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