Worried about long QT Syndrome

[Helpplease20]

Hi. I'm a 20 year old girl. Since I was 3 I've had seizures. They're usually random and I have 5 seconds to tell someone I feel sick. I've had one when running, when extremely scared and when ill. Usually just randomly though. They're undiagnosed.

I've recently read about Long QT Syndrome and am worried it's a possibility. My GP said it would have picked it up on my resting ECG (I've had about 30!) all that is picked up is second degree heart block type 1 and inappropriate sinus tachycardia. - yeah for a 20 year old my body sucks.

However I've read about concealed Long QT Syndrome and am worried this might be the case with me? Is this likely? I don't see my cardiologist for another month.

I recently had a 4 day ECG and it didn't pick anything sinister up, just the heart block. If I had Long QT - would it have picked it up on that?

I'm also currently 3 days into wearing a 28 day ECG at home. (2 sticky pads and a little monitor clipped to my chest) would this pick it up?

I'm terrified I'm literally going to drop dead and going into sudden cardiac death. any advice please.

Thanks guys x

[Daniele_T]

Long qt is genetic....someone else in your family would have to have it.
Has any other immediate family member had sudden cardiac death? If not then it's very unlikely.

It also does show on ecg and after 30 of the. It's highly likely that it would have been picked up.

Best wishes

Daniele

[Emilym80]

Hi there,

You said that you have a little time to tell someone you feel unwell before you have these seizures. This does not indicate Long QT, as people who have seizures with cardiac causation will simply collapse out of the blue, with no warning. As such, they often injure their face from the fall.

The fact that it's not shown on your ECG means you're very unlikely to have it. The more abnormal your QT interval is, the more unusual it will appear on the ECG. The higher this value is, the higher the risk for sudden death. So, if your QT interval is normal on the ECG, it's pretty (extremely) unlikely that you have Long WT at all, let alone dying from it.

Your cardiologist may do a variety of tests to try and expose any ion channelopathies or they might decide it's not necessary. With no family history of Long QT and 30 (!) normal ECGs, I don't think you have too much to worry about

[Helpplease20]

Hi, my dad has fainted around 4 times in his lifetime from pain he can't tolerate (back ache) he's 46 now. He's never had any apps about it as they're so rare for him.

I've had a seizure when on a trampoline, a bouncy castle, just sat down, sat on a bus and so on.

I also often wake up just as I'm falling asleep gasping for air with my heart pounding like it's stopped.

I also has IST and second degree type 1 heart block.

I have read about concealed long QT so am worried about that, I'm literally petrified I'm going to go into sudden cardiac arrest at any moment.