Long QT Syndrome: Want to connect with others

I was recently hospitalized because of A-Fib and during that stay found out I have Long QT. I had never heard of it before but now know that it can cause sudden death. Can anyone tell me anything they have experienced. I thought I was tough after my aneurysm diagnosis and then A-Fib but now another area thrown into the mix has me kind of rattled. I am sure there are more people out there. I will be seeing my cardiologist next week and Mayo has a lab just for Sudden Death Arrhythmia but I want a "living with" perspective.

I am currently reading a book "DEATH by prescription" by Terrence Young. I am not that far into it but they have mentioned Long QT and the man's daughter died after taking Prepulslid for throwing up and bloating. He blames the drug. Stay away from that drug if it is still on the market.

Does anyone out there have prolonged QT
I have just an ER visit. That pointed this out to me. Now I am concerned if both my statins and antidepressants are safe to keep taking

Hello @janet26. You may notice I moved your discussion and combined it with a similar one titled, "Long QT Syndrome." I did this so members who were already discussing this similar topic would see your post and have a chance to respond. Members like @lynnw and @cheymallery have talked about QT syndrome in this discussion previously.

@janet26, are you comfortable sharing what the physician's who discovered your QT to you had to say about your statins and antidepressants? Have you had a chance to talk with a pharmacist about your concerns with your medications in regards to your new diagnosis?

Thank you. I was in emergency for chest discomfort, that wasn’t going away over a few days. They ran a no. Of tests and said they did not feel I was having a heart attack, and suggested I just follow with Dr. so a few days later my Dr, had a locum in and she called me in, and told me that the ECG done showed this prolonged Qt wave. I was on escitalpram and she sent me on my way . I went to refill the prescription and happened to mention to the pharmacy that I had just been told about this Qt thing and asked ,is this medication safe. They said you should likely go back to your Dr. so... here I am waiting for a return appointment
My google research has me a little concerned. I was told it’s 490 (.?)
I am wondering if the statin I am on and antidepressants can cause this, will it go away if they are stopped?

Hi @janet26,

You might wish to view this post, "Mayo Clinic Q and A: Understanding and treating long QT syndrome” on Connect’s Genetic Heart Rhythm Diseases Page. I’m tagging @rkincaid who’s written about Long QT syndrome in the past, and might be able to share some insights.

@janet26,aAlthough it’s loaded with information, I always feel that trusting Google for your health Is a bad idea! May I ask what you are concerned about?

I hear dr Ackerman at Rochester is the best in the world for long qt

There is a website for long qt people to check their drugs
Credible meds.org

Hi @penn1023, my daughter has Long QT and she also says Dr. Ackerman is the best in the world. She was one of his patients a couple of years ago. She said she uses NIH to check medications since it's kept up to date. They also have a mobile version that is easier to use for phones and tablets.

Mobile Site: https://druginfo.nlm.nih.gov/drugportal/
DailyMed Site: https://dailymed.nlm.nih.gov/dailymed/

I see your post was from 2018 but I thought I would reply as I am frustrated with so many odd diagnosis as well.
I first found out I have a cardiac artery anomaly, Then a few years later I found out I have a celiac artery aneurysm, Now I am being told I have QT wave prolongation. This has been about a ten year journey. I am not young so I truly don't know if mine is a inherited situation or brought on by medications. All of these are rare and I don't understand why I am faced with so many. It is scary and it seems to take so long to get answers form the medical field. Sorry to complain on line but I am a little overwhelmed and a little frightened.