Long QT syndrome? Scared :(

I was born with a hole in my heart and was never told about it.

When in my mid twenties I had a serious car accident and pushed my sturnum into my heart. When they Xrayed they found the hole in my heart and they asked me if it had been from birth or had it just happened, eventually I found about the tests and the hole that was in my heart, my parents had known about it and had decided not to tell me.

I have lived with this now for sixty six years and the murmer has disapeared. My early life was full of activity and I used to climb Scottish mountains in my early twenties in Torridon. I also used to dance ballroom and we had to be very fit because of this. 

All I can say is we live our lives to the best we can and we need to take risks, it is no good been wrapped in cotton wool. Life is for living. We could try and anticipate health problems, although we need to understand my life could end tomorrow, i personally have no way to know when my time will come so I live my time and try and life it well without worry.

Live your life well and enjoy your time on this world, we would not live well if we would hide ourselves away for the next sixty years or longer.

Please stop worrying

BOB

Hey Cristina, I know this is late finding your feed but I'd like to have my input. 

To to start with, I am exactly the same as you and your fear of QT Syndrome relates perfectly to mine. I have been a sufferer of Health Anxiety for a long time and my two most prominent fears have been blood clots (one and a half years) and now Long QT Syndrome. Being a Bioscience student at university, (I am 20 years old), I already have a keen interest in health and a strong understanding of the human body. But for this reason, I tend to look into scenarios deeply. I believe that having the ability to look at all aspects of a situation shows intelligence and isn't necessarily a bad thing. However when it starts to provoke serious anxiety (I currently cannot sleep, eat or function properly), it is no longer helpful.

my family history at current is an older father who had heart surgery last February for aortic valve replacement and a triple bypass, a half-brother with a history of endocarditis, occasional hyperventilation with exercise and an unexplained seizure, an aunt who was diagnosed with "epilepsy" and her daughter who died young from complications relating to her "epilepsy". After extensive research, it really concerns me that Long QT Syndrome can be misdiagnosed as epilepsy. Considering that my half-brothers seizure had epilepsy ruled out, I believe that the other two relatives did not have epilepsy and they instead had Long QT Syndrome. I believe that the cousin also died of Sudden Cardiac Death because of Long QT Syndrome. My dad also developed Heart Block and Atrial Fibrillation after heart surgery and has fainted several times. His dad died of a heart attack at 66 and his mum lived until she was 99 with few health problems. My worries are ruining my life and I am going to get private testing and genetic screening done. I myself have exercise intolerance and palpitations. I have had 15 + ECG's over the past few years and an echocardiogram. My relatives have also had many ECG's and tests (half-brother and dad). However, just as you stated Cristina, Long QT Syndrome is easily missed on a resting ECG. This statement has nothing to do with Health Anxiety, it is the medically proven truth and it's not rare for this to happen. Long QT Syndrome may only show on a longer ECG (holter), stress ECG or even not on these two. Some people are carriers or Loong QT Syndrome but only have a few "episodes" throughout their life such as a faint or seizure. If that person is not hooked up to an ECG at that time, Long QT Syndrome may not show up. In extreme cases, Long QT Syndrome may not show up on tests, may not cause any symptoms and the first "symptom" may be Sudden Cardiac Death. These tend to be the stories you hear in the news. However, with genetic testing, they would have likely shown up positive for a mutation. This is known as silent Long QT Syndrome. What I'm trying to say Cristina is that it is understandable to be worried about something like that, especially if you have any strange family history. It is better to be safe than sorry and sometimes, a resting ECG is not good enough. 

Directly to Tess now, it is completely unreasonable the way that you are talking about Cristina and her mental health condition. Saying that people with Health Anxiety are "self-absorbed" is quite literally ridiculous and you obviously do not quite understand the seriousness of the disorder and the extend that it can ruin your life. You speak about it so naively, at least on this feed. Yes, Cristina believed/believes that she has this condition and reassurance will not help her unless the accuracy of the test is closer to 100%. But she is looking for support, not backstabbing people who can't handle repetitive statements from a mentally ill patient. Cristina has had several ECG's yes, but this does not rule out Long QT Syndrome, it is understandable for her to worry still. Cut her some slack, or at least you should have a year ago.

I hope you're feeling better Cristina.

I have LQTS. It showed up right away on an EKG. I've had many EKG's in my life and this is the first time it showed up. I had two really good heart palpitations while I was in a spin class which prompted me to go in. They are pretty sure it is because of a diuretic I was on that caused my potassium to drop too low. Now I supplement and have to wear a heart monitor for 2 weeks and cannot exercise at all. The EKG didn't lie. I'm sure you are fine if your EKG says you are fine.

my wifes entire family and both of my children have long qt. even those who have life events are extremely rare, most are have no idea they have it. 9 times out of 10 symptoms of the condition are only brought on by bad life choices. qt interval is pretty well regulated with beta blockers.