Recently diagnosed Long QT Syndrome - I am terrified.

[Rebel1961]

I have recently been diagnosed with Long QT Syndrome (February) and was told to wean myself off Citalopram, which I have been taking since 2003. The withdrawal symptoms have hit me like a wrecking ball. I am now 9 weeks clear of Citalopram and today had another ECG. I expected to be told the Long QT had disappeared, but I still have it. I’m now on an urgent waiting list for an echocardiogram and a24 hour heart monitor. I am terrified. My heart jumps around a lot, and my hand and feet are icy cold and painful a lot of the time. I feel like I just don’t know if I will wake up every morning.

[Kristin1812 Heart Star]

That sounds really worryIng. But once they have done these diagnostic tests, I hope you will be able to have an informed conversation with your Cardio, and get some guidance on what they can do to help, be good to hear their ideas on how you can manage it.Let us know how you get on.

[Rebel1961 in reply to Kristin1812]

Thank you Kristin1812. I just need answers, it’s fear of the unknown and also withdrawal. 🙂

[Kristin1812 Heart Star in reply to Rebel1961]

Yes. I can well understand that. And you are dealing with both. A double whammy. You’ll get through it.

[Rebel1961 in reply to Kristin1812]

💖 Thank you.

[Mentdent]

My dive buddy recently found that she has long QT. Now her family have been tested and her sisters have it too. They’re all over 60 years and have come to no harm. It was only picked up on a routine dive medical. She’s been diving for over 40 years and it’s supposed to be a real risk for divers. It makes me wonder if it’s more common than people think and modern technology is now spotting it more easily.

Anyway we’re both booked to go diving in Antarctica in February Covid permitting and me passing a medical because I has an NSTEMI and stent in March.

Life needs to be lived.

[Rebel1961 in reply to Mentdent]

Thank you Mentdent. I guess it’s still very early days for me and I need the shock to wear off. Enjoy your diving holiday. 🙂

[Mentdent in reply to Rebel1961]

I do think medics don’t really understand how much they put the frighteners on us. From what little I know long QT is something you’re born with so if it hasn’t caused you any problems before why should it now. It doesn’t get worse and it doesn’t get better.

[Rebel1961 in reply to Mentdent]

It’s never showed up in my ECG’s before. Apparently it can also be ‘acquired’. The Citalopram was thought to be the culprit, but now that is out of my system, the Long QT is still there. Maybe it just didn’t show up on the ECG’s before. I feel better about it today. Yesterday was not a good day! 🙂

[Retirement65]

Many years ago I remember reading on my notes about long QT and something called Wolfe Parkinson syndrome it was never ever mentioned to me but there again it’s about 40 years ago clinicians didn’t discuss the ins and outs back then I think one of our friends on here that is going diving has probably hit the nail on the head unless it’s life threatening don’t worry the problem is I think we all worry so much I’ve said on here before about health anxiety it’s makes everything so hard I feel better than I did 2 months ago but know I’m not out of the woods yet still get twinges that I would rather not have but having had tests and told your fine I have to say to myself get on with it I would be interested if anybody else feels like this or is just me worrying needlessly 😤 x