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Long Qt syndrome, no symptoms
Hi guys,
Just a quick one. I have been through some extensive testing on my heart due to having pvcs every now and again and sometimes while exercising (recovery phase). Everything checked out ok. I saw a cardiologist called an E.P who checks for electrical faults. He pretty much ruled out long Qt based on my negative treadmill test, and normal holter monitor results, aswell as 'on the spot' ECG recordings. However I have seen a group on Facebook saying how some of them had no prior symptoms and clean test results before suffering a SCA!. My argument back has been, what made them go to get tests specifically for long Qt? Normal people don't just ask for these tests, there must be either family history, a history of fainting at wierd times etc in order for them to be worried in the first place. So then technically they HAVE had prior suspicions etc
Just a quick one. I have been through some extensive testing on my heart due to having pvcs every now and again and sometimes while exercising (recovery phase). Everything checked out ok. I saw a cardiologist called an E.P who checks for electrical faults. He pretty much ruled out long Qt based on my negative treadmill test, and normal holter monitor results, aswell as 'on the spot' ECG recordings. However I have seen a group on Facebook saying how some of them had no prior symptoms and clean test results before suffering a SCA!. My argument back has been, what made them go to get tests specifically for long Qt? Normal people don't just ask for these tests, there must be either family history, a history of fainting at wierd times etc in order for them to be worried in the first place. So then technically they HAVE had prior suspicions etc
2210485, your point noted, however, where's the relevance when cardiophobiac's long qt is not over 500 ms?
In addition, the electrophysiologist already ruled out long qt, based on the negative treadmill test , the normal holter and the other "immediate" ECG results.
Am I missing something here?
My comments were directly pertaining to the original post on this thread, from the details of which, I based my opinion.
Cardiophobia, to my opinion, should be seriously addressed, whether there's a history of heart/heart rhythm issues or not.
I understand that this is the Heart Rhythm Community, however, focusing exclusively on Heart Rhythm problems while ignoring other more-or-less evident issues such as mental & emotional, may not serve the sufferers very well.
I have been through the entire gamut, as a child.
Interestingly, a Cardiologist, with a keen interest in Psychology, diagnosed me with anxiety and stress induced Thanatophobia.
It would have been a case of Cardiophobia, except that besides severe chest pains and heart palpitations, I was also experiencing excruciating back pains and insomnia.
(I was afraid to fall asleep, in the event I would get another attack and die in my sleep!
By staying awake I thought I could avert death, by "willing" it away.)
Please keep an open mind.
Best wishes,
Niko
In addition, the electrophysiologist already ruled out long qt, based on the negative treadmill test , the normal holter and the other "immediate" ECG results.
Am I missing something here?
My comments were directly pertaining to the original post on this thread, from the details of which, I based my opinion.
Cardiophobia, to my opinion, should be seriously addressed, whether there's a history of heart/heart rhythm issues or not.
I understand that this is the Heart Rhythm Community, however, focusing exclusively on Heart Rhythm problems while ignoring other more-or-less evident issues such as mental & emotional, may not serve the sufferers very well.
I have been through the entire gamut, as a child.
Interestingly, a Cardiologist, with a keen interest in Psychology, diagnosed me with anxiety and stress induced Thanatophobia.
It would have been a case of Cardiophobia, except that besides severe chest pains and heart palpitations, I was also experiencing excruciating back pains and insomnia.
(I was afraid to fall asleep, in the event I would get another attack and die in my sleep!
By staying awake I thought I could avert death, by "willing" it away.)
Please keep an open mind.
Best wishes,
Niko
3 Comments
thanks again niko. I am exactly that! a cardiophobiac and i do agree with you that it is a mental phycological issue. i have tried 6 different medications, and one worked for 9 months or more and i decided to come off it as i wanted to return to normal life so to speak. HOWEVER, the fact still stands that all the research i had done through the cardiophobiac years (4 years), i have read a fair few cases of 'clean testing gone wrong'. so the minute i relax, i can always acces that knowledge ive learnt of them cases
this attitude of seeking for false negatives stems from the fabrice muamba case in 2012. the guy earns millions and has regular screenings which are not 100% i know, but bloody well close, and he still has a cardiac arrest 6 months after his last screening.
weve come along way from 2012 with HOCM and different ethnicity's and how we look at their hearts.
weve come along way from 2012 with HOCM and different ethnicity's and how we look at their hearts.
and i think long qt concerns me more as with cardiomyopathys you can see more changes on the ecg's, and holters. where as long qt can hide from you until you take a new medicine, antibiotics or anti anxiety etc
COMMUNITY LEADER
Family history, fainting and incidental ekg findings are all cause for concern.
As for nikos post, respectfully i disagree. Long qt over 500 is at a significantly higher risk for sca.
In fact its an indication for icd placement in many patients. Specifically folks with particular types of long qt, long qt over 550 ms and long qt over 500 ms thats refractory to medical management.
Overall 10 year mortality in these populations is as high as 50% without treatment.
You are half right though niko, i dont think cardio is among this population. SCA from folks with concealed long qt is extremely rare.
Among those who self report sca on social media you can also theorize that a few of them may not,have experienced a true sca, particuarly if the perception is that the arrest was self aborted (not requiring cpr in a hospital).
Syncope secondary to a more prolonged episode of tdp, episodes of tdp requiring in hospital treatment and sca as the result of other complicating factors can likely explain a few of these cases.
In my career, to include time spent in the intensive care unit prior to studying cardiology, i have only seen 1 patient actually die from lqts.
This individuals lqt was extremely severe and was undiagnosed prior to his initial arrest. With a diagnosis and treatment the statistics prove their survivability would have improved, but of course theres no way to know for sure.
So thats 1 out of probably 100-200 patients ive been exposed to that actually arrested, anecdotally speaking.
Ive encountered or heard of noone personally speaking with concealed long qt who actually died.
Again thats not to say it doesnt happen, its just extremely extremely unlikely. Having legitimate long qt is rare enough as it is, and being an extremely rare case among cases that are already pretty uncommon is quite a feat.
Weve kind of already privately messaged about some of the options to draw it out, but if you keep coming up negative for lqts the probability is low that you have it.
As for nikos post, respectfully i disagree. Long qt over 500 is at a significantly higher risk for sca.
In fact its an indication for icd placement in many patients. Specifically folks with particular types of long qt, long qt over 550 ms and long qt over 500 ms thats refractory to medical management.
Overall 10 year mortality in these populations is as high as 50% without treatment.
You are half right though niko, i dont think cardio is among this population. SCA from folks with concealed long qt is extremely rare.
Among those who self report sca on social media you can also theorize that a few of them may not,have experienced a true sca, particuarly if the perception is that the arrest was self aborted (not requiring cpr in a hospital).
Syncope secondary to a more prolonged episode of tdp, episodes of tdp requiring in hospital treatment and sca as the result of other complicating factors can likely explain a few of these cases.
In my career, to include time spent in the intensive care unit prior to studying cardiology, i have only seen 1 patient actually die from lqts.
This individuals lqt was extremely severe and was undiagnosed prior to his initial arrest. With a diagnosis and treatment the statistics prove their survivability would have improved, but of course theres no way to know for sure.
So thats 1 out of probably 100-200 patients ive been exposed to that actually arrested, anecdotally speaking.
Ive encountered or heard of noone personally speaking with concealed long qt who actually died.
Again thats not to say it doesnt happen, its just extremely extremely unlikely. Having legitimate long qt is rare enough as it is, and being an extremely rare case among cases that are already pretty uncommon is quite a feat.
Weve kind of already privately messaged about some of the options to draw it out, but if you keep coming up negative for lqts the probability is low that you have it.
4 Comments
thanks for replying my friend! :-). your always so informative lol. i hope you are well. when you put it like that it sounds more reassuring. well as you know abit about my situation, i added a group on facebook for long qt'ers. and to be honest the majority of people on there tend to have some 'miracle' story how they had prior ecgs ( pre surgery, pre job, military ) that never showed a prolonged qt. it really scares some people (me) that they then doubt the tests theyve had even more. my answers back to them so far have been thaat they must of been mis-interpreted and or they wasnt given a stress test/epinephrine test at the same time in order to reveal a concealed case. otherwise they MUST be confused/lying/exaggerating
and in your time (including intensive care), how many patients would you say altogether you saw? was it 1-2 hundred in total or 1-2hundred with suspected/ long qt
100-200 is all long qt cases suspected and real
i see. so such a minimal percentage then lol. well what do you think on that subject then? do you think some of the people are misinformed, misunderstanding things or just exaggerating their story
Hi cardiophobiac.
You are in the least likely group to suffer from SCA, since you're obviously not an SCA survivor, nor do you have
severe coronary disease .
As far as your observation of SCA incidence based on personal accounts of some facebook SCA group members, this does not constitute the basis for any conclusions regarding future SCA risk as far as you are concerned, which would be equivalent to the risk of you getting hit by lightening, lol.
The one's who survived a SCA have this event as an added risk factor, while others who never had one, might have reasons as you mentioned family history, fainting or other related negative health events, to justify further testing.
Would you have any suspicions or ideas on what brought about your cardiophobia?
It could have to do with events 3 years ago and/or prior.
Example: You may have witnessed someone suffering a -traumatic to you-SCA episode as a child (you may not even have any memory of that) and another event 3 years ago, like palpitations, triggering the cardiophobia.
Did you start experiencing pvcs or other symptoms about 3 years ago?
The trigger could also be any "seemingly" unrelated event,with a less than obvious connection.
You are so young and finding where your phobia came from, will help you deal with it better, so you can go on with your life, without having this weight on you.
I had experienced thanatophobia as a child, following chronic severe (unexplained) chest and back pains, but that belongs to the distant past.
I'll reserve this for another discussion in the future.
Best wishes,
Niko
You are in the least likely group to suffer from SCA, since you're obviously not an SCA survivor, nor do you have
severe coronary disease .
As far as your observation of SCA incidence based on personal accounts of some facebook SCA group members, this does not constitute the basis for any conclusions regarding future SCA risk as far as you are concerned, which would be equivalent to the risk of you getting hit by lightening, lol.
The one's who survived a SCA have this event as an added risk factor, while others who never had one, might have reasons as you mentioned family history, fainting or other related negative health events, to justify further testing.
Would you have any suspicions or ideas on what brought about your cardiophobia?
It could have to do with events 3 years ago and/or prior.
Example: You may have witnessed someone suffering a -traumatic to you-SCA episode as a child (you may not even have any memory of that) and another event 3 years ago, like palpitations, triggering the cardiophobia.
Did you start experiencing pvcs or other symptoms about 3 years ago?
The trigger could also be any "seemingly" unrelated event,with a less than obvious connection.
You are so young and finding where your phobia came from, will help you deal with it better, so you can go on with your life, without having this weight on you.
I had experienced thanatophobia as a child, following chronic severe (unexplained) chest and back pains, but that belongs to the distant past.
I'll reserve this for another discussion in the future.
Best wishes,
Niko
1 Comments
thanks for your reply. i guess it stemmed from a few ectopic beats i had on a treadmill a few years back, and at the time i was going through severe anxiety so i guess it could of been that causing them as i WAS checked over at the time and they couldn't replicate the ectopics at the E.P's treadmill test. I also had 2 x holter monitors and an echo scan. i was told i was good, 66% ejection fraction. not any bad arrythmias really, the holters showed mainly SVE's and only 1 x pvc on the 24hour tape.
what bugs me is that these groups can be so quick to jump on the band wagon and say " oh yea i had no symptoms prior to my arrest " or " well i had a treadmill test and it didnt show, yet i had a cardiac arrest 2 years later " that can really upset people and leave them doubting the tests they've had!. Long qt is a congenital condition. i am dead certain that IF the person had a normal resting ecg to a pre military or pre fire service (for example) screening that DIDNT show a long qt, then either the interpreter had looked at it wrong OR a stress/adrenaline test WOULD show the abnormality. if its in your genes, your dna, it cant hide from everything right?
what bugs me is that these groups can be so quick to jump on the band wagon and say " oh yea i had no symptoms prior to my arrest " or " well i had a treadmill test and it didnt show, yet i had a cardiac arrest 2 years later " that can really upset people and leave them doubting the tests they've had!. Long qt is a congenital condition. i am dead certain that IF the person had a normal resting ecg to a pre military or pre fire service (for example) screening that DIDNT show a long qt, then either the interpreter had looked at it wrong OR a stress/adrenaline test WOULD show the abnormality. if its in your genes, your dna, it cant hide from everything right?
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