[voisin]

> I have Long QT syndrome

Man, didn’t expect to see this here today. My siblings (from another mother) all have Long QT or are carriers. Two have pacemakers. Their mother died of sudden cardiac event while sleeping which in retrospect was obviously Long QT. I live on the other side of the country and two of my sisters are visiting now and I just read them your comment. One (with a pacemaker, the second to have seizures as a teen) had very much the same experiences as you, with confused cardiologists changing their diagnoses. Back then, it was a miracle they got a diagnosis at all because we happened to live close to a very important cardiology centre.

Anyways, not entirely sure why I am posting this other than to say we experienced a very similar thing and it is quite scary and I am sorry you are going through it. It’s awful, but thankfully manageable with beta blockers or pacemakers. It could be worse, but it’s pretty traumatic. Hope you and your daughter stay ok :-)

[expunged]

That’s crazy. Other than my daughter I’ve never met anyone else who has it.

You totally nailed it lol- I have a defibrillator implant (no pacing) but have never had an event. And my daughter and I both take beta blockers.

It really does keep it under control; Its weird to think about how something so dangerous can be so easily managed when you know what’s going on.

I hope the path to diagnosis for your family was quick. It took awhile in mine and even then I’m not 100% sure how they figured it out.

[PaulHoule]

My understanding also is that you can get long QT from certain drugs, like the early (but still highly effective) antidepressant imipramine.

https://www.ncbi.nlm.nih.gov/books/NBK534864/

I don’t know if it’s a hazard to everyone or if someone who has a propensity to long QT is particularly susceptible to those drugs

[voisin]

The path to diagnosis was around 30 years ago when they started having seizures. It took approx 3 years or so to identify it and again, only by luck given our proximity to a major cardiac centre. I wonder whether something like the Apple Watch EKG could identify it today such that it could alert people that they should go for confirmation by a cardiologist?

[expunged]

I don't know about the Apple Watch but there's a handheld personal EKG called Kardia (https://kardia.com) that works well. You hold the ends of the device and place the bottom on your knee (on bare skin) and take an EKG. You can easily fit this thing in your pocket.

I think our cardiologist worked with them on developing the device and we use it to take EKGs and remotely send them to the clinic. I think it's sensitive enough they can use it to look for stuff like this, but I also think LongQT is tricky enough to detect it just may not always show up. Maybe you could do a series of EKGs over a period of time and send them all in or something.