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Long QT Syndrome: Want to connect with others

Heart Rhythm Conditions | Last Active: Jun 4, 2021 | Replies (54)
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@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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Replies to "He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently,..."
John, Volunteer Mentor | @johnbishop | Jun 3, 2021

@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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Dana, Volunteer Mentor | @danab | Jun 4, 2021

@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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