1. < Heart Rhythm Conditions

Long QT Syndrome: Want to connect with others

Posted by cheymallery @cheymallery, Jun 26, 2018

Hello! I have Long QT Syndrome and I have a defibrillator implanted in my side. Water triggered my cardiac arrest both times. I just wanted to reach out and try to connect with others who share this same condition as myself.

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

ashtonnorris | @ashtonnorris | Jun 3, 2021
In reply to @johnbishop "Hello @ashtonnorris, I would like to add my welcome to Connect along with @amandaburnett and other..." + (show)
@johnbishop

Hello @ashtonnorris, I would like to add my welcome to Connect along with @amandaburnett and other members. My daughter has Long QT Syndrome also. I shared her experience in an earlier post in this discussion here - https://connect.mayoclinic.org/comment/206413/. Her doctor did a Mayo Clinic Podcast that you may help you learn a little more about the condition.

Is your son currently being treated for LQTS?

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Not yet. We’re being monitored and avoiding prolonging QT drugs. We have the ANK2 mutation and all I know is it causes cardiac arrhythmias and LQTS 4.

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ashtonnorris | @ashtonnorris | Jun 3, 2021
In reply to @amandaa "Hi @ashtonnorris and welcome to Mayo Clinic Connect. You will see that I moved your comment..." + (show)
@amandaa

Hi @ashtonnorris and welcome to Mayo Clinic Connect. You will see that I moved your comment to a discussion about LQTS so that you could connect with members like @johnbishop, @penn1023, and @mayofeb2020 who can speak on the subject.

Here is an article that you may be interested in.
Long QT syndrome (LQTS) is a cardiovascular disorder characterized ... providing the substrate for cardiac events and fatal arrhythmias as torsades de pointes ... with a voltage-sensing domain (S1–S4) and a pore loop domain (S5–​S6) ... Loss-of-function mutations in ANK2 gene encoding the membrane ..."
Long QT syndrome – Bench to bedside - Heart Rhythm O2: https://www.heartrhythmopen.com/article/S2666-5018(21)00008-8/fulltext

Can you share with us what type of symptoms your son is having as well?

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He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently, no symptoms that were aware of. He has a holter monitor currently. I, on the other hand, get episodes where my heart will randomly start racing, bad cramping headache and my vision goes black, but I’m not sure what it is (LQTS or an arrhythmia or anything). I’m waiting for more testing to be done.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jun 3, 2021
In reply to @ashtonnorris "He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently,..." + (show)
@ashtonnorris

He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently, no symptoms that were aware of. He has a holter monitor currently. I, on the other hand, get episodes where my heart will randomly start racing, bad cramping headache and my vision goes black, but I’m not sure what it is (LQTS or an arrhythmia or anything). I’m waiting for more testing to be done.

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@ashtonnorris The Genetic and Rare Diseases Information Center has more information on Long QT Syndrome 4 here: https://rarediseases.info.nih.gov/diseases/10432/long-qt-syndrome-4

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Mentor
Dana, Volunteer Mentor | @danab | Jun 4, 2021
In reply to @ashtonnorris "He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently,..." + (show)
@ashtonnorris

He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently, no symptoms that were aware of. He has a holter monitor currently. I, on the other hand, get episodes where my heart will randomly start racing, bad cramping headache and my vision goes black, but I’m not sure what it is (LQTS or an arrhythmia or anything). I’m waiting for more testing to be done.

Jump to this post

@ashtonnorris Hi, I have had a few of the symptoms you mention of the fast heartbeat and your the first person that mentioned vision going.Black. before they got my pacemaker adjusted correctly I too had one episode of an arrhythmia that my vision went black. It never happen again in the 9 years I had the arrhythmias. I have had a heart transplant now but thought I would mention that. It was my first bad arrhythmia and I did have a pacemaker which at the time was only set to shock me and it did that night but after the black vision issue. So my thought is the blood flow during an arrhythmia basically stops and that's what finally caused the vision issues lack of blood flow. Just something to maybe ask your doctor.
Dana

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