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20 year old with Long QT Syndrome worry

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
a holter monitor
an echo
a tilt table test
two mri brain scans

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.

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

I'm currently petrified I'm going to have a sudden cardiac arrest!!

My cardiologist has never mentioned this condition to me.

Thanks.
4 Responses
1124887 tn?1313754891
A normal EKG pretty much rules out long QT. If your Holter test and all your EKGs didn't show any prolonged QT, you should try to forget ever reading about this. It is a rare condition, affecting approx 1:4000.

But I have one question. Your second degree heart block, when did that happen? It's normal during sleep, but it normally shouldn't happen when you're awake.

It is important that you are monitored with EKG during a seizure, to find out if this is cardiac related or not. You could ask your doctor for an implantable monitor which can be carried for years. Only by doing so, you will know for sure if this is cardiac related or not.

Avatar universal
Hi, thanks so much for the reply. I thought that but I have read about concealed Long QT so was worried about that. On the letter it says I was having short runs on second degree mobitz with the longest being at 9.40am where it was 2.38 seconds.
Yeah my doctor is wanting to implant a loop recorder to see if i need a pacemaker.
Avatar universal
Hi, thanks so much for the reply. I thought that but I have read about concealed Long QT so was worried about that. On the letter it says I was having short runs on second degree mobitz with the longest being at 9.40am where it was 2.38 seconds.
Yeah my doctor is wanting to implant a loop recorder to see if i need a pacemaker.
1124887 tn?1313754891
It's OK to be worried about the seizures, but try not to worry about your QT interval. Anything is possible, of course, but with a normal Holter and several normal EKGs, the chance is so slim that it's best to count it as zero.
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