Long QT syndrome? Scared :(

Thank you for replying! I really try to. Its just so hard when your mind is constantly telling you otherwise. And everyday its like im afraid ill drop dead any moment. In our school we have defibrillators..( incase you dont know what those are its a machine that is supposed to shock the heart back into sinus rythym when its in v fib ) people who have lqts have ecgs and they come out normal until they have a fainting episode or arrest and later on they find long qt. i know that my heart is structurally normal, but it could even be present in normal and healthy hearts which really aggravates me. But i'll try to forget about this.. Its easier said than done.

Cristina, I want you to know that if any of my posts upset you, I'm sorry.

You're obviously fighting a very difficult problem, darling.

I really hope you get well soon, darling.

Love Tess

What's lqts?

It's like your brain is just so used to thinking the way it does that u can't switch it off, I understand completely. You've prob thought that way all life. It's second nature.

I guess you gotta retrain ur brain. It can be done I'm sure of it just needs hard work and perseverance. I'll let you know when I've found the answer lol.

The heart rhythm is described by medical professionals as a series of movements seen on an ECG, called PQRST. I absolutely cannot remember who decided that, but the letters have been in use for  AGES.

Long QT Syndrome simpky means that there is a longer than usual gap between the Q and the T pattern. It is congenital, and can be diagnosedd by an ECG. Not every heart movement (i.e. pulsatioon) shows a long gap between the Q wave and the T wave, but if someone has it, it will show up at some point on an ECG. My neighbour , who is 20, just found out after a routine ECG that she has it. Now the doctors want to test her whoie family because it is genetic. There is very little useful treatment forr ir, although some doctors embark on heart surgery. The biggest problem is making sure that you don't take certain medications, or they will make it worse. The trouble with LQTS is that it can cause your heart just to stop beating so you go into cardiac arrest. It is impossible to predict when or if this is likely to happen.

Cristina has got it into her head that she has it, despite numerous tests. a lot of doctor appointments, and a visit to a heart specialist. None of them have found LQTS in Cristina. I think it is her severe anxiety which has made her so sure that she has LQTS, even though it has been categorically ruled out by a host of physicians.

I was currently prescribed klonopin which drug class is benzodiazepine... I heard that long qt syndrome can be acquired by taking some anti-depressant medications.. Can klonopin cause a long qt interval?

I do not think so, because it isn't an anti-depressant, it's an anti-anxiety medicine. Also, people are born with LQTS, they don't acquire it, as far as I know, but I'll check and get back to you.

Okay, I have checked, and some people DO acquire it, but not with Klonopin. That was NOT on the list of meds which cause it.

It isn't rare, either. 1 in 2,000 people have it, which makes it a bit rare, but a lot less rare than, for example,Sporadic Fatal Insomnia. There are only ten people in the world with that at any given time. And that is definitely a genetic condition, and it starts to show itself in infancy, and the child deteriorates over time and it is obvious that they have it. But I'm not for a minute suggesting you have SFI. You have NONE of the symptoms. You wouldn't be able to walk by now, for example. I was just comparing the frequency with which various conditions occur in people.

Ok that made me feel better. I never heard about sporadic fatal insomnia.. But i know that according to mayo clinic the genetic condition long qt syndrome is rare.. But since 1 for every 2000 people in the US have it.. This makes me question whether its possible that we could have it. Either my mom or my dad can have the mutation. We never went for genetic testing.. I recently went for a physical and i had to sign a few papers and it asked about long qt syndrome. I asked my dad if we have that and he said he doesnt know what that is but if we did have something like that he wouldve known.. But that doesnt convince me... Which makes me nervous that it could be a possibility.

Ah, I'm beginning to see why you're so worried, Cristina. Your dad and other family members would not know if they had LQTS, because you can only diagnose it with an ECG.

However, you yourself have had a great many tests, and you haven't got it, so it's extremely unlikely to be genetic in your family.

I can see why you got yourself so anxious now.

There would be no point in getting your whole family tested, because you don't have LQTS.  Remember I was telling you about my 20 year old neighbour who was recently diagnosed with LQTS? Her specialist is going through the process of doing ECGs on all her nearest relations, to see if they have it.

Your doctors have not gone down that path, have they?

So maybe, darling, you can try very hard to convince yourself that you haven't got it.

I loved your reply to Lisatia, by the way. Brilliantly done!

 

Thanks for explaining that Tess I had no idea.

Aww thank you! I try my best to help people as much as possible. And no need to apologize! I didnt take it to the heart.. I understand that this whole thing mustve been annoying for you. My parents have to deal with it everyday! but my mom recently had a stress test and an ultrasound on her heart and it came back great! She just has hyperension. Her doctor never mentioned anything about a prolonged qt. so im guessing shes fine. She never had problems with her heart whatsoever.. And never has a problem excersising although she is a bit over weight. No one in my family has had problems with their heart from what i know. Im still scared for her though.. Because she is an a higher risk of having cardiac arrest or a heart attack than me and my dad combined. Im a trained lifegaurd who knows cpr and how to use a defibrillator ( although you dont need to be trained in using an aed ) just incase. It would be very rewarding to save someones life! Even if it was a stranger.

Nosophobia is the irrational fear of having a specific disease.

But it IS inevitable, Cristina. After all, we all have to die some time. And everyone dies because of cardiac death. it's as simple as that. Your heart stops beating, so you die, because there is no oxygen being pumped around your body any more.

Listen. My husband is 60, same age as I am. He has chronic lung disease and his oxygen sats are persistently lower than normal (I bought a pulse/ox) but he's fine. He just can't walk long distances any more. Neither can I. I have terrible pain from osteoarthrtitis although I was recently started on gabapentin which has caused a significant improvement. It has also caused me to become extremely calm, which is wonderful, because I got addicted to benzodiazepines ages ago, and the gabapentin has somehow turned off the switch in my brain which made me crave them. I am absolutely amazed by this! And so glad!

I have been tapering off valium since January aand have got down to a small dose. I don't even want it now. I never thought I'd say that. Three cheers for gabapentin!

My main fear is just dropping dead all of a sudden and never seeing my wonderful parents, my dog, my friends, and the rest of my family again. I know that we will all die eventually. But i just hate it when death could come on so suddenly.. Like you could be having fun and then you just drop dead and then thats it you're gone! my doctors told me to be careful crossing the street because i have more of a chance of dying in a car accident then dying from a SUDDEN cardiac death. I believe that cardiac and SUDDEN cardiac arrest are two different things. Cardiac arrest could come from anything.. Like a heart attack, dying from cancer, or getting hit by a car.. Or getting hit hard enough in the head from a coconut... But sudden cardiac arrest can happen when you're just going about your day and then you just... Die. This is a problem that happens to teens even though its rare. It kills me to see the little youngsters die from such horrible things as well. I guess i have to be thankful for everything that i have in my life.. And everyday that i get to live. But its impossible to think you're going to be ok when you here about these kids dying abruptly like this and you keep thinking that something like this is gonna happen to you. Like... Think about those people out there who actually do have those diseases or genetic mutations and they reassure themselves that "they're going to be ok" and everyone says "you'll be fine" "everything will be ok i promise" but then they die anyway? 😭 This whole thing just makes me want to cry honestly.. Because i cant imagine what it would be like for my parents if they lose me... And my whole family.