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  • Long QT Syndrome so worried

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    Old 06-14-2015, 09:52 AM   #1
    JenES
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    Unhappy Long QT Syndrome so worried

    Hi all. Really long post, I apologize. I'm 20 years old and since I was 3 years old I've had faints/mainly seizures. The first time it happened at 3 I had a temperature. Since then I've had a seizure at least every year, apart from once when I went around 2 years without one.

    Since 3 I've had seizures randomly. However have also had one whilst running (twice) one was a seizure one was a faint, when I was on a trampoline, when on a bouncy castle, whilst sat on a bus, whilst sat eating a meal. I also had a seizure once when I was extremely scared and once when I was extremely upset but now they do occur randomly most of the time - I haven't had a seizure for a particular reason in a long time.

    Most recently my last seizure was 3 months ago at 4am when I woke up with a leg cramp (wasn't particularly painful or anything, it may have just been coincidence) I got up and walked about then had one.

    I have around 5 seconds before I seizure that I know I'm going to have one - then I have a fuzzy feeling in my head and collapse.

    My dad passes out vary rarely with pain he cannot tolerate. My auntie used to have seizures/pass out but she grew out of it, whilst my other aunt rarely passes out but has been known to.

    I've had:
    Several ecgs - probably 20+
    A holter monitor
    An echo
    A tilt table test
    Two MRI brain scans
    EEG

    All tests were clear - nothing has been found to cause my seizures.

    Until recently nothing was found on the tests, they've now seen sinus tachycardia and second degree type 1 heart block on my 4 day holter monitor.

    So, after looking online and by chance finding Long QT and worryingly sounding similar to my situation, I'm worried I could have it.

    The only test I haven't had is a stress test. I was recently in hospital overnight hooked up to an ecg monitor overnight and my heart rate went to 177 and I could feel my heart pounding - it was really random I woke in the middle of the night then my heart began to race, the senior doctor looked at the ECG during this time and said all that was noted was Sinus Tachycardia and mentioned the ECG to be normal. She also didn't mention Long QT Syndrome - I literally randomly found this condition online and it petrified me because blackouts can be caused when scared etc. (although this doesn't happen too often for me, but still, they have happened when scared and after exercise.)

    Anyway, I mentioned not having the stress test to my GP and he said I don't really need it as it would be the same result as when my heart rate was going 177, does this sound correct?

    Does anybody have any advice? Does anybody think it sounds like I have it?

    To explain the hospital situation - I was falling asleep and woke up breathless like I'd stopped breathing for a second, so i woke up like in a shock (this happens often) it's like just as I'm dropping off I'll wake myself up in a worry and gasp a little. I think it just panicked me in hospital more so than usual so my heart kept on racing. At home when it happens it stops after a few seconds and I just go back to sleep.

    I'm currently petrified I'm going to have a sudden cardiac arrest!! I feel like I'm a time bomb waiting to go off.

    My cardiologist has never mentioned this condition to me.

    Thank you, for any advice at all.

     
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