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.

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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.

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@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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mellyq | @mellyq | Sep 3 11:48am
In reply to @cheymallery "It is extremely nice to meet all of you. Also, thank you for sharing your stories...." + (show)
@cheymallery

It is extremely nice to meet all of you. Also, thank you for sharing your stories. I have KNCQ1 which is the type that effects potassium. Growing up, I showed signs of LQT, however, all of the signs were mistaken for other issues. One huge issue that followed after my diagnosis and start of treatment is depression. The first beta blocker I was put on actually intensified it. My doctor then also put me on anxiety medication which ALSO intensified my depression. I switched to a new one and now I just feel so emotionless. I honestly miss who I was before all of this happened. I'm 21 years old and all of my friends are afraid to do anything with me because they don't want anything to happen to me on their watch (I can totally understand). I feel like the "pain" is more emotionally than it is physically.

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I'm so sorry to hear about your situation. It's very similar to mine I'm 35 years old and I feel like my life has been ripped from my hands! I'm not sure which type I have yet I'm seeing my doctor today. The other day I passed out and smashed my face and broke my nose... that was my first episode of fainting I normally have seizures (being ecliptic as well) I get an idea of when I'm going to have one.. this was scary because it came out of nowhere. They said at the nurmous ER visits all summer long a million different things. One where I had low potassium and magnesium made the most sense.. they as ER doctors are not capable of diagnosing an actual type... but I wish they would at least give me an idea of how your releasing me with potassium in the negative cbc over 12.2.. idk seems like everything in my opinion has changed. Depression is the worst I have ptsd so I get anxiety over everything.. Depression i had to stop taking my meds bc it was the reason possibly 3 years ago when it first appeared that I needed to get off of most my meds. I did and went asymptomatic for 2 years... just this June it came back and came back for the worst (symptom wise) my last elongation was 490. I'm actually getting a portable Ekg. You should look into like a smart watch that can monitor your sinus rhythm maybe it might help give you an idea when you can do something and when you can't. Staying hydrated with electlytes as you know help... so I would just let your friends know you have minor restrictions and make sure they are aware of your Depression and it honestly makes you feel better with them being around. In the beginning a couple of my friends wouldn't even talk to me because they where afraid to be around me.. but now having the watch I can reassure myself so I don't scare everyone away. I hope things get better for you! I'm praying for you and everyone on here.. this by far is a horrible heart condition seeing as there isn't much research backed behind it!

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