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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janet26 | @janet26 | Oct 25, 2019
In reply to @kanaazpereira "Hi @janet26, You might wish to view this post, "Mayo Clinic Q and A: Understanding and..." + (show)
@kanaazpereira

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?

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Thank you for response my fear is if this is life threatening. How do I know if it is caused by medications or if it is genetic. Can prolonged Qt be like a side effect to medications and if they are stopped ,will it go away? Or if you show that arrhythmia, are you automatically assumed to have the genetic predisposition. I will attempt to find your understanding and treating page. thx

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Oct 25, 2019
In reply to @janet26 "Thank you for response my fear is if this is life threatening. How do I know..." + (show)
@janet26

Thank you for response my fear is if this is life threatening. How do I know if it is caused by medications or if it is genetic. Can prolonged Qt be like a side effect to medications and if they are stopped ,will it go away? Or if you show that arrhythmia, are you automatically assumed to have the genetic predisposition. I will attempt to find your understanding and treating page. thx

Jump to this post

@janet26 here is the Mayo Clinic Q and A: Understanding and treating long QT syndrome page:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-and-treating-long-qt-syndrome/
There is also a Mayo Clinic Long QT Syndrome Clinic page that may provide some information for you here:
https://www.mayoclinic.org/departments-centers/long-qt-syndrome-clinic/overview/ovc-20442144
I have no medical training or background but my adopted daughter who is in her early 30s has Long QT Syndrome which was diagnosed at Mayo Clinic Rochester 5 or 6 years ago. We think it is genetic and I don't believe it can be caused by medication but that would be a good question to bring up with your doctor. With proper care I think you can easily live a normal life. When she was first diagnosed she had a Subcutaneous - ICD implanted but after a lot of problems with being shocked due to false positive readings of the device software and many software adjustments she had them take it out. The doctor convinced her to go with a pacemaker instead which I think she has had for 3 or 4 years and is doing great with it and able to live a very active life.

Are you able to discuss your concerns with your doctor? It helped my daughter a lot to talk with the doctor and her cardiology nurse.

REPLY
1 reply
lynnw | @lynnw | Oct 25, 2019

It can be caused by a lot of medications. Some Antiarrythmics can cause it. I had to have an ablation because the antiarrythmics caused me to have it when I took them for AFib. You might need the predisposition to get it from the medications but if you have it the list of medications you have to stay away from is quite daunting. That is one of the reasons they keep you in the hospital when you start antiarrythmics, to make sure you don't have that issue.

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penn1023 | @penn1023 | Oct 25, 2019
In reply to @janet26 "Thank you for response my fear is if this is life threatening. How do I know..." + (show)
@janet26

Thank you for response my fear is if this is life threatening. How do I know if it is caused by medications or if it is genetic. Can prolonged Qt be like a side effect to medications and if they are stopped ,will it go away? Or if you show that arrhythmia, are you automatically assumed to have the genetic predisposition. I will attempt to find your understanding and treating page. thx

Jump to this post

You can go to a long QT site run by dr Raymond woosley called crediblemeds dot org. It tells you which meds are not safe for people who have a prolonged QT.

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mpeters | @mpeters | Oct 26, 2019
In reply to @janet26 "Thank you. I was in emergency for chest discomfort, that wasn’t going away over a few..." + (show)
@janet26

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?

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I was in the ER with vomiting and dehydration. The doctor told me I had long QT and suggested I work with a psychiatrist to change my antidepressant. I did that and now long QT does not show up on my EKG.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 26, 2019
In reply to @mpeters "I was in the ER with vomiting and dehydration. The doctor told me I had long..." + (show)
@mpeters

I was in the ER with vomiting and dehydration. The doctor told me I had long QT and suggested I work with a psychiatrist to change my antidepressant. I did that and now long QT does not show up on my EKG.

Jump to this post

I appreciate you sharing this experience, @mpeters. It sounds like the ER doctor was quite astute in understanding your problem.
Was the vomiting and dehydration related to the Long QT?

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janet26 | @janet26 | Oct 27, 2019
In reply to @mpeters "I was in the ER with vomiting and dehydration. The doctor told me I had long..." + (show)
@mpeters

I was in the ER with vomiting and dehydration. The doctor told me I had long QT and suggested I work with a psychiatrist to change my antidepressant. I did that and now long QT does not show up on my EKG.

Jump to this post

Thank you this sounds very positive. I am weaning myself off escitalopram until I can get into my doctors and have her help to come off it. Did they tell you that if you show it with medications that it means you are genetically predisposed to it? I am really praying I will have the same results as you. Now do you really watch what medications you take?

REPLY
janet26 | @janet26 | Oct 27, 2019
In reply to @kanaazpereira "Hi @janet26, You might wish to view this post, "Mayo Clinic Q and A: Understanding and..." + (show)
@kanaazpereira

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?

Jump to this post

A general thank you to everyone. I am sorry to hear so many difficult stories from so many people. I am really hoping a change of medications will change my ECG readings.
Time will tell thanks for support everyone

REPLY
ramakambhatla | @ramakambhatla | Oct 30, 2019
In reply to @johnbishop "@janet26 here is the Mayo Clinic Q and A: Understanding and treating long QT syndrome page:..." + (show)
@johnbishop

@janet26 here is the Mayo Clinic Q and A: Understanding and treating long QT syndrome page:
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-and-treating-long-qt-syndrome/
There is also a Mayo Clinic Long QT Syndrome Clinic page that may provide some information for you here:
https://www.mayoclinic.org/departments-centers/long-qt-syndrome-clinic/overview/ovc-20442144
I have no medical training or background but my adopted daughter who is in her early 30s has Long QT Syndrome which was diagnosed at Mayo Clinic Rochester 5 or 6 years ago. We think it is genetic and I don't believe it can be caused by medication but that would be a good question to bring up with your doctor. With proper care I think you can easily live a normal life. When she was first diagnosed she had a Subcutaneous - ICD implanted but after a lot of problems with being shocked due to false positive readings of the device software and many software adjustments she had them take it out. The doctor convinced her to go with a pacemaker instead which I think she has had for 3 or 4 years and is doing great with it and able to live a very active life.

Are you able to discuss your concerns with your doctor? It helped my daughter a lot to talk with the doctor and her cardiology nurse.

Jump to this post

IT IS SOMETIMES CAUSED BY MEDICATION SIDEEFFECTS, AS IN MY CASE, THO&apos; THERE
IS CONGENITAL PROLONGATION OF QT-INTERVAL. AN ELECTROPHYSIOLOGIST IS MORE
APPROPRIATE TO CONSULT FOR FOLLOW-UP. I AM HAPPY THAT THE PATIENT IS STABLE
WITH PACEMAKER. I AM A GENERAL PHYSICIAN, BUT NOT AS INDICATED , HAVE
SIGNIFICANT EXPERIENCE IN THIS PROBLEM. I HAD TO DISCONTINUE A
MEDICATION, TO CORRECT QT-INTERVAL, THO&apos; ASYMPTOMATIC WITH SINUS
BRADYCARDIA (SLOW HEART RATE), PULSE RATE RANGING FROM 55-60/MINUTE...DR
RAMACHANDAR K.

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longqtsyndrome | @longqtsyndrome | Nov 17, 2019

Anyone been diagnosed for long QT syndrome? What type do you have and treatments?

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