A Different Perspective

Hello everyone! It’s been awhile since I wrote a post! But the reason for that is it is not healthy for me to think and write about Brugada Syndrome everyday. As it is not healthy for you to read about it everyday either. But once in while I have something new to say or vent about, even if not often. And today I was thinking about how busy I have been. That is one of the reasons I haven’t been writing. Im back in college getting a certificate in Genealogical Research, one of my favorite hobbies! And I am also back in the equestrian world riding horses and tossing around the idea of getting my own horse. Anyhow, this gave me an idea for a new post.Let’s have different perspective, even if it’s only for a month, a week, a day…what can we do now that we have a second lease on life? We tend to talk about what we CANT do with Brugada. But those of us who were lucky enough to be diagnosed, for lack of a better term, get to live. Life has been renewed. We have our treatment and defibrillators and life goes on. Has it stopped for you? Has life just ended and now you are afraid to do anything? Look at it this way, would you lease a new car and never drive it? Why pay for it to sit in your driveway? Why have it if you won’t drive your car? Well why get an ICD if we just sit around and worry about negative things? This is a hard concept, I know. And one that changes daily. And that is normal,believe me. One day we are on top of the world and living life. The next day we are hidden away in our rooms full of fear.Thats okay!! As long as we don’t let it happen every single day. Be sure to LIVE in your Brugada journey. The diagnosis, although it seems like a death sentence, actually saves lives. After all my father would be here if he knew he had it right? So let’s try to look at this all with a new perspective! Tell me what you will do now that you know your are protected with your defibrillator. Are you in sports? What hobbies do you have? Have any vacations coming up? What about little things you can do daily to bring some sunshine back into the picture. I love my genealogy, horses, I garden, I love learning several languages (right now I study Italian and German).I ride my bike, walk my dogs, play with my kids. All sorts of stuff. What can you start today, even if it’s little, to live your life? I encourage you all to do it. Share your ideas and plans with me as it lifts everyone up! You can even email me if you want as that seems to be everyone’s preferred method because privacy. I just like to hear the success stories of people who are not beaten down and broken from Brugada Syndrome. I’m not!

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18 Comments (+add yours?)

  1. Glen Browner
    May 18, 2016 @ 05:42:36

    I was just recently diagnosed with burgada syndrome what should I be doing or not doing until they decide how to treat me my family doctor who is great but is very unfamiliar with this disorder I’m his first case didn’t really say much I’m not sure what this all means .I fainted a 10 days ago and according to a witness I cracked my head 3 times she said it looked like I had some kind of seizure I was unconscious for 40 seconds and when the paramedics showed up my vital signs were very low so they took me to the hospital 2 hours later I felt fine so I left before I seen anyone but my girlfriend made me go to see my doctor two days later and he sent me to the lab for some blood work and an EKG and 2 days later he called me in and said the the doctor who read my EKG said it looks like burgada syndrome now I’m waiting to see a cardiologist wich will most likely take months and I’m not sure what I should be doing

    Reply

    • AliciaB
      May 18, 2016 @ 09:17:23

      There is not much to do Glen as there is no treatment for Brugada Syndrome. The only “treatment”is having a defibrillator implanted, which they will determine when you see your Doctor hopefully. You can however avoid the medications on http://www.brugadadrugs.org, as these are medicines that are known to causes an arrhythmia. Also, an increase in your temperature, whether from fever, exercise,being out in the hot weather, etc is dangerous. If you have a fever, take medication, with Doctors permission, to lower your temp. Also, be careful not to get over heated during activities or when outside.

      Reply

  2. Daniel
    May 12, 2016 @ 11:33:46

    Basically I’ve been experiencing the frustration of ongoing diognosis…

    My symptoms began July 2015; I’m 22 and otherwise a healthy individual. My symptoms include SOB, ectopic heartbeats, fleeting pains in the left side of my chest and the occasional, but transient, experience of light headiness. I ocassionaly notice an irregular pulse also.

    The event that instigated my first visit to A n E occurred last July: my heart raced, I felt light headiness and experienced a vague aching in my left arm. Upon my visit they found a pattern suggestive of Brugada Syndrome. I can only assume it was type 2 or 3.

    They kept me overnight and eventually decided, I belive in consequence of there being no family history of sudden death, to make me an outpatient. When I eventually underwent a ajamaline provocation test, it came back negative and I was reassured that I don’t in fact have Brugada.

    However, in consequence of these ongoing, and quite acute symptoms, I have visited A n E a further 8 times regarding these issues. Sometimes my ECG comes back normal and a few times it elicits an incomplete RBBB, which I’ve been informed is nothing to be concerned with.

    I am trying to get one with my life but I’m finding this ongoing issue is completely arresting my whole existence. Doctors seem to be consistently uninformed, no uniformity from one doctor to the next and there seems to be no urgency whats so ever when the associated arrhythmias can cause sudden death at any time.

    I’m just frightened they’ve missed it and that I still might have Brugada: ajamaline tests are not full proof and I it just seems too much of a coincidence that I intermittently exhibit a IRBBB and experience these symptoms daily.

    Should I be reassured and carry on trying to shove it to the back of my mind or are doctors neglecting explicit signs? I need some answers, I’m truly in perpetual fear of sudden death.

    I should add that although doctors keep mentioning anxiety, I AM NOT an anxious person. The only anxiety I really experience is in consequence of these symptoms and the associated risk.

    Reply

    • AliciaB
      May 12, 2016 @ 14:44:14

      Hi Daniel! Well its certainly promising that your ajmaline test was negative. That implies your sodium channels are working properly.They are NOT working properly with Brugada.Keep in mind a RBBB can manifest from many things, not just Brugada. So having that present doesnt necessarily mean you have it. Also, RBBB is harmless and present in many healthy individuals.There is also something called Brugada phenocopy which is when your EKG “looks” like a Brugada pattern, but it is not Brugada. There are a lot of studies going on for that as well. Have you reached out to the Brugada brothers? I have emailed all 3 of them and they all answer. Also, you can get a second opinion. It is your heart and your health and if its possible, you can always get another opinion 🙂

      Reply

      • Daniel
        May 12, 2016 @ 15:12:36

        Thank you for replying.

        I think the thing that I find unsettling is the ambiguity in my case. For instance, the ajmaline test was negative inasmuch as it did not elicit a Type 1 pattern, however, it did have some affect to my ECG. Also, the severity of the symptoms causes great distress, and with their daily occurrence and the fact it takes 3 months to see a cardiologist just exasperates the problem. I feel that because one or two doctors think it may anxiety, no one’s paying attention to the fact something sinister is going on.

      • AliciaB
        May 13, 2016 @ 07:14:05

        I think it’s best if you get another opinion. Also, you can email one of the Brugada brothers and even send them a copy of your EKG for analysis 🙂

  3. Daniel
    May 12, 2016 @ 11:33:18

    Basically, I’ve been experiencing the frustration of ongoing diagnosis…

    My symptoms began July 2015; I’m 22 and otherwise a healthy individual. My symptoms include SOB, ectopic heartbeats, fleeting pains in the left side of my chest and the occasional, but transient, experience of light headiness. I occasionally notice an irregular pulse also. Recently, I’ve been experiencing a persistence sensation, almost tickling, in my upper chest/lower throat.

    The event that instigated my first visit to A n E occurred last July: my heart raced, I felt light headiness and experienced a vague aching in my left arm. Upon my visit they found a pattern suggestive of Brugada Syndrome. I can only assume it was type 2 or 3.

    They kept me overnight and eventually decided, I belive in consequence of there being no family history of sudden death, to make me an outpatient. When I eventually underwent an ajmaline provocation test, it came back negative and I was reassured that I don’t in fact have Brugada.

    However, in consequence of these ongoing, and quite acute symptoms, I have visited A n E a further 8 times regarding these issues. Sometimes my ECG comes back normal and a few times it elicits an incomplete RBBB, which I’ve been informed is nothing to be concerned with.

    I am trying to get one with my life but I’m finding this ongoing issue is completely arresting my whole existence. Doctors seem to be consistently uninformed, no uniformity from one doctor to the next and there seems to be no urgency whats so ever when the associated arrhythmias can cause sudden death at any time.

    I’m just frightened they’ve missed it and that I still might have Brugada: ajmaline tests are not full proof and I it just seems too much of a coincidence that I intermittently exhibit an IRBBB and experience these symptoms daily.

    Should I be reassured and carry on trying to shove it to the back of my mind or are doctors neglecting explicit signs? I need some answers, I’m truly in perpetual fear of sudden death.

    I should add that although doctors keep mentioning anxiety, I AM NOT an anxious person. The only anxiety I really experience is in consequence of these symptoms and the associated risk.

    Reply

    • Lavanya Machineni
      Dec 19, 2016 @ 15:43:59

      Hi Daniel,

      My Husband is in the same phase. Recently he got to know that he had type 2 burgada and doctor has suggested for a genetic testing. he never had any fatigue episode or sudden family death history. what is ajamaline provocation test. our doctor did not recommended it. But he always complain having some dizziness which are or not able to relate weather it is occurring due to brugada or anxiety. some doctors say it might be due anxiety and few other doctor are suggesting to have an ICD(just to have assured for not having any sudden cardiac arrest)

      In your case do you had the ICD? we are not able to make any decision on it.

      Thank you,
      Lavanya

      Reply

      • AliciaB
        Dec 20, 2016 @ 08:08:52

        Hi Lavanya! Does your husband have an abnormal EKG? Is that how they diagnosed him?

      • Lavanya Machineni
        Dec 21, 2016 @ 14:38:52

        Hi Alicia Thank you for replying. Yes he do have an abnormal ECG and doctor says he in type 2 pattern. 2012 he visited a family physician and complained about having heavy breathing and then they has suggested to take a ECG. Later we were escalated to cardiologist since he had abnormality in ECG pattern. Other than that he did not had any symptoms which is related to Brugada syndrome expect the dizziness which he complaints here and there and there are no sudden death in the immediate family as of now.

      • AliciaB
        Dec 22, 2016 @ 07:00:17

        Even if there isn’t sudden cardiac death in the family, Doctors are usually concerned if the EKG is abnormal. When it’s abnormal it means you are more likely to have an arrhythmia. If they suggest he gets an ICD, I would certainly listen. It can be life saving. It can seem a bit scary at first to get an ICD but in the end it is there to protect him

  4. Diane
    May 09, 2016 @ 17:18:20

    I was diagnosed when I was 48. Ironically that was the age my father died in the morning in his sleep. They never knew why he died. He had a healthy heart. We now believe it was Brugada. He was getting shots for his rheumatoid arthritis. They think that goofed up his sodium channel. I am now 61 and recently got a steroid shot for my shoulder. I have been having dizziness and fatigue ever sense. I had mentioned my concerns to the doctor but he didn’t think there would be a problem. Like you I have worked directly with Brugada and a paper was even published about me between my doctor and Doctor Brugada. I wish there was some information out there which would help in knowing what meds to take.

    Reply

  5. Diane
    May 09, 2016 @ 15:16:14

    I was diagnosed at 48. I am now 61. My father died in his sleep when he was 48. I have been fine until a few days ago when I got a steroid shot. I now feel exhausted and dizzy. It reminds me how I felt while they were running test on me for Brugada. I did go to the emergency room but really there is nothing they can do for me. Do you ever feel exhausted? I am very athletic: roller blading, biking, Zumba and yoga. It was nice to read your article.

    Reply

  6. Carolyn Thomas
    Apr 03, 2016 @ 13:22:39

    Fantastic new post, Alicia! Love that car analogy “…would you lease a new car and never drive it? Why pay for it to sit in your driveway?” So true! Yet it’s normal and common (especially in the early days and weeks following any catastrophic diagnosis, Brugada or anything else!) for us to want to park that new car in the garage to keep it safe and sound while we try to make sense out of a diagnosis that doesn’t make any sense at all.

    Thanks for the important reminder that taking that car out for a spin is a great way to celebrate what we CAN do. I’m glad that, despite your own very busy life, you still occasionally come back and inspire/enlighten us like this!

    Best wishes to you…

    C.

    Reply

  7. carla di giorgio
    Apr 03, 2016 @ 13:05:18

    Ciao cara Alicia, sono felice di sentirti così positiva e felice che stai studiando italiano, così possiamo dialogare meglio! Mio figlio sta bene, cresce ed è diventato altissimo! Stiamo seguendo attentamente lo studio del professor Pappone che promette un futuro sereno, così come seguiamo i pazienti che hanno deciso di farsi operare. Sono in contatto anche con una mamma che ha due ragazzi che si sono sottoposti a ablazione e che stanno benissimo!! ci crediamo e confidiamo in Dio. A te e alla tua famiglia un abbraccio. Love.
    carla.

    Reply

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