What was your clue?

Alot of people ask me how I knew something wasnt quite right with my heart health. Its hard to answer because Ive suffered with palpitations, chest pain and preventricular contractions for years but they didnt concern the dcotor. They always bother me, especially at night, when laying down and for some reason when Im on my left side. Maybe thats because I have a right bundle branch block? It is a typical sign in Brugada.My EKG also says I have an axis deviation so maybe thats why symptoms can be positional? Who knows? Just speculating

Im asking people what was that main clue, that defining moment when you said “I think I need to see a doctor and talk about this” for me it was when I was on vacation and we went to a waterfall. You have to walk about a half hour down stairs to see the whole thing and get to the bottom to see the beauty of it. But guess what? That means you have to walk UP STAIRS for a half hour. It was also August and very hot. I had just come from horse back riding on a trail for an hour and that takes alot of muscle, strength and stamina. Most think horse back riding is just sitting there lazily doing nothing while the horse moves. Well if your doing it for real, thats not the case. You are controlling the horse with your body, mainly squeezing your legs together as tight as you can around its body to cue the horse what to do. And you kick it in the side to cue it. They weigh around 1200 pounds so you can only imagine how hard of a kick and squeeze you need to do to get this animal to do anything. They probably think a fly landed on them. My point is for one hour I was getting a muscle workout and riding up and down rocky paths. THEN, went right to the waterfall when I was already taxed physically. At the bottom of the waterfall I was already exhausted from riding, being dehydrated and hungry. But the only way out of there was walking up the stairs in the sweltering heat. Every couple of steps my heart was pounding, flipping, turning…I was dizzy and couldnt breathe. I felt weak and faint (fainting is a huge sign in Brugada) but I kept going. I had no choice. 3/4 of the way I just stopped. The kids were leaps and bounds ahead of me but I couldnt move. I was scared to move. What I was feeling in my chest was not right. My husband came over to me and I started crying a little. I knew right then and there something was wrong. There is no reason a 33 year old woman should be reduced to tears because shes afraid to climb any more stairs. I eventually made it to the top and was very close to fainting.I was sweating so much, which causes you to lose electrolytes like potassium, sodium and magnesium, which causes arrythmias. The mix between dehydration, over heating, physical activity and low blood sugar was almost a lethal mix for me but at the same time my cue from my body telling me “get your ass to a doctor ASAP!”

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7 Comments (+add yours?)

  1. kontjedonder
    Jun 28, 2013 @ 13:42:39

    Hi Alicia,
    It’s like reading my own story! My symptoms (same as yours) were there for 2 years and they were documented during a 24h and 4h Holterresearch (portable ECG) and still the cardiologist in my own (Dutch) hospital (highly recommended on cardiology!) weren’t able to diagnose.
    A cardiologist in UZ Gent (Begium) did an electrofysiology test and then found out that my aritmea were frequent and there were dangerous ones too. The ajmaline test signed the Brugada syndrome.
    It has been only 2 weeks ago when I had this test and immediately got my ICD implanted.
    Because of my age I can say I was lucky for probably 10 years. My first atrial fibrillation was the first sign that there was something wrong with electricity of my heart, but the lack of symptoms in my twenties, didn’t made the doctors decide to search to the cause of it all. Now I’m 32 years old and diagnosed with BrS type 1.
    I’m still searching for answers. There’s so little information about people with BrS and there experience! I will read your blog and I’ll try to add my experience on your messages. Hopefully others with BrS get their favour by it.
    (Oh and my english isn’t always correct, sorry for that, but hopefully it is understandable… )

    Mir (from The Netherlands)

    Reply

  2. Mir
    Jun 28, 2013 @ 13:41:14

    Hi Alicia,
    It’s like reading my own story! My symptoms (same as yours) were there for 2 years and they were documented during a 24h and 4h Holterresearch (portable ECG) and still the cardiologist in my own (Dutch) hospital (highly recommended on cardiology!) weren’t able to diagnose.
    A cardiologist in UZ Gent (Begium) did an electrofysiology test and then found out that my aritmea were frequent and there were dangerous ones too. The ajmaline test signed the Brugada syndrome.
    It has been only 2 weeks ago when I had this test and immediately got my ICD implanted.
    Because of my age I can say I was lucky for probably 10 years. My first atrial fibrillation was the first sign that there was something wrong with electricity of my heart, but the lack of symptoms in my twenties, didn’t made the doctors decide to search to the cause of it all. Now I’m 32 years old and diagnosed with BrS type 1.
    I’m still searching for answers. There’s so little information about people with BrS and there experience! I will read your blog and I’ll try to add my experience on your messages. Hopefully others with BrS get their favour by it.
    (Oh and my english isn’t always correct, sorry for that, but hopefully it is understandable… ;))

    Mir (from The Netherlands)

    Reply

  3. Erica Haak
    Jun 26, 2013 @ 09:09:44

    I just had a hunch – a mother’s instinct, if you like – I had said to my husband for the previous 6 months or so that I thought something wasn’t quite right with Reuben, but I had no idea what it was. He was a perfectly healthy little boy… he just had some behavioural issues. It was like God was telling me to keep my eye on him, that’s the best way of describing it. The first clue I had about my son (who was only 4 at the time) was a very random faint whilst at preschool. It was sketchy – I’ve never really known if it truly happened or not… But I had to take the teacher’s word for it. Reuben denied it – didn’t know anything about it – but I guess that doesn’t mean it didn’t happen. Then there was another faint (with fever). I didn’t wait for anymore – we went straight to the ER that day. He was basically diagnosed then and there (confirmed about a week later).

    I had no clue with myself – only found out via a routine ECG that Reuben’s cardiologist asked me to have done. I show no symptoms…. At least not at this stage. I do notice things like my heart seemingly beating heavier, kinda thumping more, when i lay in bed… And I do get dizzy sometimes, but I don’t rightly know if they are symptoms of BrS or not.

    Reply

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