Guard Your Heart

Unlike many diseases and illnesses, there isnt much you can do to protect your heart from Brugada Syndrome. We are born with it, ingrained in a faulty sequence of DNA along the sodium channels of the heart. Most people dont know they have it until its too late. Do any of these apply to you?

– Syncope (fainting)
– Family history of fainting
– Early cadiac death in the family such as cardiac arrest (sudden death)
– feeling sick after a big meal,high fever,exercise or alcohol
– feeling sick after taking a medication on this list http://www.brugadadrugs.org
– you are male ( both get BrS, but its more prominent in men)
– you are in the age range of 30s-50s ( although it occurs at every age, this is the danger zone)
– you’ve had abnormalities on your EKGs such as elevated ST, elevated J wave, inverted T wave and a right bundle branch block

So whats my advice to guard your heart? See a cardiologist or talk to your primary doctor for a referral if you feel like any of the info above pertains to you. If you have an early death in the family that is heart related, if you faint a lot, if you have a lot of palpitations, start with getting an EKG. There is no harm in going to a doctor to discuss your concern, symptoms, or family history. It really is that simple.It could literally save your life.If you have been diagnosed than become familiar with the medications to be avoided at brugadadrugs.org. Keep cool, whether its taking meds to lower a fever or being cautious out in the sun or during exercise. Avoid large meals and alcohol. Stay hydrated. Keep your electrolytes balanced…we lose these through sweat, stomach flus, etc

In the meantime, all people should know CPR. If someone dies of cardiac arrest there isnt much time to get them up and running WITHOUT brain damage unless its done quickly. The biggest mistake people make when they see someone fall or appear to be unresponsive is they try to figure out why. Why are they out cold? Why did they faint? Why arent they breathing? Why isnt their heart beating? DONT do that!! Your wasting precious time. Im not saying everyone who has cardiac arrest has Brugada but in general if anyone near EVER is unconscious you should FIRST call 911 and then continue with CPR to buy time until the paramedics arrive. I was told a person needs to have their heart back on track within 4 minutes to have a chance at life. Ive heard from others 9 minutes which seems excessive. Either way, call for help and start CPR. DONT WASTE TIME IF ANYONE NEAR YOU FALLS UNCONSCIOUS!! DONT WORRY WHY! JUST GET MOVING!

One last minute note…if you are suspected of having Brugada PLEASE see an electrophysiologist. This is a specialty within cardiology. They read and fix rhythms all day. Maybe some cant see an EP but if you can , by all means try.Sometimes though, you need to see a cardiologist FIRST and they THEY recommend the EP. Which ever way it happens, please keep that in mind

Find a wealth of info and support at SADS ( Sudden Arrhythmia Death Syndromes) website

23 Comments (+add yours?)

  1. Dee
    Jul 05, 2017 @ 16:26:44

    Alicia,
    One of the earlier comments had me a bit scared. My Brother has BrS, and is the only person in the family to have a near fatal episode. Nobody else was symptomatic and has not been properly tested, but my parents, aunts, and uncles are still around with no issue. I’m terrified of having it, and undergoing a battery of tests with an Electrophysiologist soon. My base EKGs have all been normal, even on stress tests, a 24 hr holter in 2015, 2016, and this yeat, and several doctor visits. I know this means nothing. I am hoping to do the Ajmaline test soon, and if it’s negative I’m hoping I can rest easy. You mentioned “Do bear in mind with BrS your EKG can change with age. So what’s normal now, may not be normal in a few years. ” Do you mean baseline, or even with the Ajmaline? I’m 33 now, and despite no indication of having it, my brother’s diagnosis feels like a death sentence for me. I was really hoping that this would ease my mind, but I guess it shouldn’t?

    Reply

    • AliciaB
      Jul 06, 2017 @ 16:17:58

      I was told the EKG can change through the years with age, and if someone is suspected of having BrS, they should be checked on annually. The ajmaline test supposedly tells you if your sodium channels are defective. If they are not, then you don’t have it.

      Reply

      • Dee
        Jul 06, 2017 @ 16:30:38

        Thanks for your reply. The waiting time for any sort of diagnosis as a sibling of someone with the disease has been agony. Your blog has provided a lot of information in a heartfelt way. Thanks for transforming a harrowing experience into something like this.

      • Dee
        Jul 06, 2017 @ 16:30:39

        Thanks for your reply. The waiting time for any sort of diagnosis as a sibling of someone with the disease has been agony. Your blog has provided a lot of information in a heartfelt way. Thanks for transforming a harrowing experience into something like this.

      • AliciaB
        Jul 06, 2017 @ 16:32:25

        Your welcome Dee. It’s very scary either way, whether you know or don’t know. But rest assured, even if you do have, it life goes on. You slowly learn to accept and live with it 🙂

      • Dee
        Jul 06, 2017 @ 16:43:04

        Thanks. It’s not so much the results that scare me, as I’ve seen my brother live a normal life with an ID, it’s more the fear that I won’t wake up in the morning, or experience the terrifying heart pounding/aching that sent him to the hospital and had ER docs thinking it was a heart attack in the meantime. I was able to get an apt with my brother’s electrophysiologist within a week, but waiting until Monday for a simple consultation, and then waiting for the tests to be scheduled, and then if those are positive, waiting to fit the ID. Anything can happen in those periods, and my anxiety is through the roof, especially since recently I’ve experienced some quick palpitations followed by a few seconds of dizziness. Not as a result of this, but prompting this. I told my GP, then when he asked about my history and how I was screened after I found out about my brother, he was not pleased. When my brother was first diagnosed, my cardiologist just looked at my EKG and did a stress/echo/24 hr holter. My parents did the same. I was not knowledgeable and thought he was right and I was in the clear. I wish I didn’t do the research I did, but now that I know more (I’ve read nearly every study and article on the web), I feel like I’ll never be positive if I have it or not even if the tests at the EP are negative. Sorry for the long winded mental regurgitation. Thanks for hearing me out. You’re a great advocate for something that has very little advocacy.

  2. lees
    May 07, 2015 @ 05:16:37

    Hi Thanks for this blog its very interesting to hear from people that have this condition. I am currently going through testing for this. So far i have had a million ECGS( all normal) an ultra sound of my heart (normal), an MRI of my heart with contrast dye (normal) , 2 stress tests ( both normal) and my final test is next week which im most worried about wich is the drug challenge with ajmaline- Has anyone out there had this done and can you tell me more about it??

    My symptoms started around 7 years ago- Every time i ate anything no matter how big or small the meal i had a run of sinus tachycardia that lasted a few minutes each time and stopped by it self- it became more of annoyance and thats what prompted me to go to the doctors- I had some tests which told me i had a food intollerance to wheat and gluten and they felt that was causing the sinus tachy- I quit this food and my symptoms went for many years. Around 6 months ago during a very stressful time at work and during my life i began waking up in the night with a racing heart it would happen at the same time every night without fail ( when i say racing it was doing around 130-160 bpm) i called ambulances where they hooked me up to a 12 lead ecg and found no problems. Luckily as i have private health care through my work ( i live in the uk) i decieded enough was enough and i was reffered to a specialist who decided to look in to my problems further.,,,,

    My specialist gave me a 7 day event recorder to capture my racing heart (sinus tachy) – randomly during this time i experienced my forst ever run of Ventriculart Tachycardia Monomorphic in pattern and it self terminated after 10 seconds. Id never had this before!!! and was different to what id experienced before ( my only bothersome symptom prior to this was sinus tachy) this was new- My cardiologist wasnt to concerened but this prompted him to investigate further and i have gone through several tests ( mentioned above)

    I have had no fainting spells yet, i have not been hospitalised due to my symptoms, ive had just one run of monomorphic VT in the past 30 years that i am aware of, i am female, 30 years old and the only relative that has died is a grandfather that died in his sleep at 48 ( this is why i am being tested for brugada)

    I have taken an ssri for the last 5 years ( paroxetine) and i wonder if this has caused some of my problems? I am now paroxetine free due to the worry of this drug being the cause of my problems. My cadiologist has put me on a beta blocker which has so far stopped almost all my episodes of pounding/racing heart.

    I hope to god i dont have brugada 😦 but its comforting to know that there are others out there that can offer advice and support

    Reply

    • AliciaB
      May 07, 2015 @ 09:29:15

      Well an ultrasound and MRI usually come back normal because there are no structural abnormalities with BrS. And an abnormal EKG is usually key to being diagnosed. I’ve heard as long as your EKG is normal you don’t have it. But at the same time I’ve heard of people who had cardiac arrest with a normal EKG because they can change one day to the next. The ajmaline challenge is probably the most efficient way to diagnose when all other clues are missing

      Reply

      • Lees
        May 07, 2015 @ 11:09:26

        Thanks so much for your response! im hoping that because i have had so many ECGs over the years and they have been done whilst having my episodes of my racing heart and the fact they have not picked up the brugada sign it wont be this- but as you say brugada isnt always apparant on ECGS. Did you have the ajmaiine test? and any idea how safe it is? Well done on your blog its brilliant and you are so positive! Lots of luck to you 🙂

      • AliciaB
        May 07, 2015 @ 15:09:26

        Many people get ajmaline testing with no problem. I never had it done because I have an abnormal EKG every day. BrS is a defect of the sodium channels. When they give you ajmaline, if your EKG stays normal, it’s assumed you don’t have BrS. If you are given it and there is a change, it’s assumed your sodium channels are compromised and positive for Brugada.They stop the whole thing before it gets too serious. Do bear in mind with BrS your EKG can change with age. So what’s normal now, may not be normal in a few years. I’m hoping you pass the test and all is well. Some people in general just seem to be prone to palpitations whether they have Brugada or not. Don’t worry 🙂

      • Lees
        May 07, 2015 @ 15:01:02

        Thanks for your reply fingers crossed my ajmaline goes ok I’m so scared for this test 😦 I’ve been having tests for nearly 7months now and just need to know. My beta blockers have been brilliant and I can walk up the stairs now without the heart pounding and my sleep is no longer disrupted. We’re you tested using the ajmaline? I’m worried it’s not safe! Your so brave thanks for sharing your story xx

  3. djack22
    Apr 02, 2015 @ 02:15:06

    Thank you for sharing your story. I’ve been dealing with doctors for over 7 months now. I have had a couple abnormal kegs and tow that have said “infarct” on them. But since I am a young male in his late 20’s they keep telling me it’s normal. I have complained about chest paints, palpitations, and shortness of breathe yet doctors continue to tell me there is nothing wrong. Crazy thing is that my sleep doctor took one look at my ekg and immediately said I should be tested for Brugada Syndrome. To bad my PCM didn’t know what it was and my cardiologist only had me do a stress test. Basically no one cared to do their job. Well a month ago I went to the ER cuz once again I woke up with shortness of breathe but this time I got a cardiologist to acknowledge that something was wrong. I currently have a loop recorded inside me and my doctor now is playing the waiting game to see something wrong. It’s frustrating trying to get someone to simply do their job. I’ve been told by two separate doctors that it looks like I have Brugada but no one will test me for it. Either they don’t want to schedule it due to money issues or they choose not too because they don’t know how to test me. I’m trying to find the right doctor for me. It sucks that you went through the a hard time trying to get diagnose but I want to thank you for sharing your story. It helps me feel like I’m not alone in my battle.

    Reply

    • aliciatburns
      Apr 02, 2015 @ 12:47:15

      If some doctors are seeing the Brugada sign on your EKG I would just keep going from one doctor to the next until you get an answer! It’s your life and your heart. Just because one doctor doesnt see or know about Brugada doesn’t mean you should take his word! Go with your gut feeling and keep seeing new doctors. Find an electrophysiologist if you can

      Reply

      • djack22
        Apr 02, 2015 @ 17:17:10

        Thanks… One of my doctors told me that some doctors just don’t know about it. They haven’t been trained. Anytime I bring it up they just look at me like I just made up a new disorder lol

      • aliciatburns
        Apr 02, 2015 @ 17:56:07

        Well it is a rare condition so many doctors have no clue. In one of my posts here I mentioned I saw 7 cardiologists before being diagnosed. And more times than not I find myself explaining what it is to medical personnel.Im glad you have a recorder so they are at least watching you

      • djack22
        Apr 02, 2015 @ 18:04:09

        So what kept you motivated

      • AliciaB
        Apr 02, 2015 @ 18:12:18

        The palpitations lol. I get them so bad at night sometimes I feel like I’m gasping for air or going to die. They get really bad as I transition from being awake to being asleep. I wanted an answer as to why so I kept finding someone new because I wasn’t happy with them dismissing it.Then my father died suddenly and that really scared me. It was just my gut feeling that something was wrong and now my father died of cardiac arrest.I demamded answers.I finally found someone who knew what they were looking at and understood I was making up symptoms

      • AliciaB
        Apr 02, 2015 @ 18:13:04

        Wasn’t making them up! Typo!

      • djack22
        Apr 02, 2015 @ 18:20:30

        I know exactly what you mean! I feel the exact same way when I sleep at night. I kept telling my doctors that too and one just looked at me like I was dumb lol. But it’s freaking me out cuz Its been happening to me every night for almost a month now. It’s crazy how I’m describing all the symptoms of heart failure and and BS yet no one understands. It’s a sucky situation but I’m glad I found someone who knows exactly what I’m talking about and going through. It’s even more of a battle for me since I’m in the military and I have to fight with them too… Once again, I want to thank you for sharing your story.

      • AliciaB
        Apr 02, 2015 @ 18:25:24

        Thank you for serving! My husband was in the Marine Corps for a little bit and my son in law is currently a Marine.Listen, do you have a copy of your abnormal EKG? Can you get it if you dont? Scan and email it to Dr Brugada….ramon@brugada.org. He can tell you what he thinks of it. Make sure it’s one that is abnormal.Also, everyone loves to message me on Facebook to talk. Or email me at ladyalicia105@verizon.net I’m always happy to talk to people and answer questions or be of some help.There is also a private support group on Facebook I can add you to if you want me to. Everyone in it has Brugada

  4. kontjedonder
    Jun 28, 2013 @ 14:26:55

    It’s good to stick with your innerfeelings when you have symptoms that you can relate to other diseases or flu (!). I fainted twice in two years. I was all alone in the bathroom and just fainted. I was feeling well, but my heartbeat was very high at once. It’s like a miracle (but I prefer to think it was my guardian angel :)) that I woke up, realizing there was something not ok. My familydoctor said it had to be a flu or because I’m a busy person (a mum of two and back then a projectmanager).
    With todays knowledge I know the cause wasn’t a flu, it must have been a sign to BrS.

    Reply

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