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I’m so sorry for your loss.

Some heart problems aren’t really detectable after death. I have Long QT syndrome, which is basically an electrical problem that affects heart rhythm and makes people who have it susceptible to sudden cardiac arrest. Because it’s an electrical problem, you wouldn’t see it if the heart isn’t beating. It’s taken out at least two people in my genetic family. I’m not sure if you were tested for that (genetic testing would be best), but it might be worth looking into.

LongQT is notoriously difficult to pick up on an EKG unless they are using a 12-lead EKG and looking for it and even then it might be a no show. When I was tested, I was originally told by the cardiologist that I did not have it. Then my daughter was tested and she _did_ have it, and she would have only gotten it from me. So they did genetic testing on me and confirmed.

The cardiologist was wrong, but it wasn’t his fault. I’d suggest getting additional testing other than an EKG.

> 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 :-)

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.

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

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?

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.

Are there other hallmarks of the condition that might help rule it in or out?

They told us part of the heart muscle itself was dead, meaning there would have been no hope of resuscitation, but also that it showed signs of multiple infarcts. They just didn't know if they were all at once or had happened over years and had never been diagnosed.

Medical neglect is a not-insignificant part of our childhood stories, and it's hard to figure out what we don't even know to pay attention to as adults.

I wish I had more to offer, here.

I don't think there are, but I'm not a doctor.

It's usually tested for genetically or with an ekg. It doesn't have any outward physical signs or traits that I'm aware of. There are several different subtypes and each has different triggers; so diagnosis usually happens in response to an event. For example, passing out when the phone rings because you're surprised. I don't think a lot of doctors know much about it. In my case, I didn't find out I had it until I was in my 40s and that was because I made contact with my biological family (I'm adopted) and they told me I needed to get checked for it.

I'm so sorry for your loss.

In my first year of college, I lost a close friend in a similar way. Perfectly healthy 18-year-old girl. Went to sleep in her dorm one night and never woke up. It was my first real experience with death, at least at an age that I could truly understand what was happening, and I think not having a real cause made it so much more difficult to process.

They did find a cousin afterwards who had an undiagnosed heart defect, but they said that it was likely unrelated. Still, a small bit of light I suppose from an otherwise tragic event, that otherwise it might not have been found and he might not have known.

My mom's grandfather passed away from an aneurysm in his 40s. Her brother died of an aneurysm in his 20s. Her younger sister had some sort of brain-blood-vessel anomaly related to a benign tumor, but she had it removed. My mom had an aneurysm burst in her 70s but she survived. Her neurologist said that all my great-grandpa's descendents should get brain MRIs to determine if we have the same problem.

Several of my siblings and our kids got brains scans, but nobody found anything to report on them.

Meanwhile, two of my mom's younger sisters (both in their 70s) just passed away since 2021 from pancreatic cancer. Scary stuff.

God I'm sorry for you and your family.

If she ever did some sort of surgery, they often have some samples they keep frozen for various purposes.