Questions about Long QT

Hi everyone

I'm new to this site and am really just looking for some info. I've read about long qt syndrome and how many people can just collapse and even die. The thought of this sends me into a panic. How can any of us be sure that we don't have it? I understand that it's an inherited disease or can be acquired through certain medications. Is there any other ways people can just get it? I am 31 and there is no known history of this in my family and I've never fainted. I was told I had a heart murmur about five years ago and was given an echo, holter monitor (24hr) and ecg. None of these test showed anything. I've recently had another ecg which appears to be clear, although it wasn't read by a cardiologist.

Do you think I am worrying about nothing? I'm afraid to exercise as I know this can bring it on (when i've no evidence that I even have it!), and sometimes can't get to sleep as I know episodes can occur then as well.

Any info would be gratefully received.

Thanks

By Jetchicky
Posted June 9, 2009 at 8:31 am
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Usually with these types of diseases LQT, CPVT, they are triggered by exercise or stress (I have CPVT triggered mainly by stress). Most people who have them usually have episodes where they pass out or are close to passing out from stress or exercise in the past. They also may have had problems with what feels like a racing heart or something like it. Sometimes an abnormal ekg may be the first sign that something is wrong, so usually the doctor will order a stress echo and if that continues to be unusual then an EP study is done. I have heard not everyone has these signs beforehand, but a lot of people do. Hope I helped!

By Sporty
Posted June 9, 2009 at 9:29 am
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When you feel like something might be wrong with your body, I know that it is easy to go into panic mode... but, I think you should try to relax. You probably don't have Long QT - just by statistics it is something like a 1 in 2000 chance - and you are not in one of the high risk period of your life (I belive for women, the highest risk is in the 20s). It doesn't sound like you are experiencing symptoms. I think you are doing the right thing by getting checked-out if you feel like something is wrong... if you feel necessary, go see a cardiologist and talk about it. But in the end, all of us have no warranty or guarantees in life. I don't mean to be harsh or unkind... I have Long QT and it has been years for me to adjust to the idea that life is really that fragile.

Oh, and don't stop exercising, that will only hurt you in the long run and make you more prone to other health problems. :)

Best of luck you to you.

By JaimeAllen
Posted June 9, 2009 at 1:28 pm
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I have had Long Qt since 1990 ( I was 14 ) I am on my 7th ICD implant and have learned to just really listen to my heart, and body. From what it sounds you do not seem to have have all the signs. If you are really concerned they can do a Genectic test on you to find out if it is in your genes. Good Luck and I hope this helps.

By mrsbrightside
Posted June 9, 2009 at 1:55 pm
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hi everyone. thanks for your replies. the only symptoms that i had and still get which prompted me to go to the docs in the first place was 'funny' beats. i can't even say they are palpatations as they dont last. they're more skipped beats or a couple of quick beats one after the other. they are very random. i am aware that i worry more than most people and tell myself to relax. i feel guilty worrying about it when there are many people on here who actually know they are living with the syndrome and here i am fretting about something that i dont even know i have. i understand its quite rare and mainly hereditary and try and take comfort in this as my family have shown no signs of it. my siblings are 35 and 38 and have never shown concern. maybe they arent aware of it or it just doesnt worry them like it does me. ive found a private cardiologist who has expertise in cardiac issues in young people and although quite exensive i may consider going to see him. thanks

By JaimeAllen
Posted June 9, 2009 at 2:01 pm
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Can I ask why you think it would be long qt when you have no history of it? Have you had any type of SCA episodes? Have any of your family members had any episodes? I would talk to your doc and have him run tests to ease your mind.

By Jetchicky
Posted June 10, 2009 at 11:54 am
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Hi mrsbrightside,

It sounds like what you are experiencing are PVCs, which can be normal in a heart that has a normal structure. I would try not to worry too much about it. You sound ok.

Heather

By Pebs_Bonnie
Posted June 10, 2009 at 4:17 pm
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I found out by stress. For years I was getting out of breath just by walking and people (doctors, nurses, family etc) blamed it on my asthma. But then one nurse disagreed and made me have an ECG I then got referred to G.O.S.H in London and found out that I have got LQT and also found out that my cousin (my nan's cousin's son) died from it. So you can say that it is frightening but I just keep getting told it's good I'm being treated now at the age I am so in some ways I'm lucky (apparently)

By TRcyclist
Posted June 11, 2009 at 12:51 am
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Hi MrsBrightSide,

I have lived with skipped beats (PVCs) for 35 years, always told that they were fairly common and wouldn't hurt me. But recently a holter monitor indicated that one fifth of all my beats are irregular, and a stress test showed long QT under exercise. My doctor is now saying that all those years of irregular beats have compromised my pumping efficiency.

So if you think you are having rhythm problems, you could discuss with your doctor a 48hr holter monitor, exercise stress test, and echo cardiogram (measures pumping efficiency). A simple EKG usually misses Long QT, because you are at rest and it only measures for ten seconds. I don't want to be an alarmist - odds are low that you have LQT, but I also think frequent arrhythmia should not be ignored.

Best - TRcyclist

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