Long QT syndrome

[Bedlington14]

Hello all. Over the past few months I’ve felt on the brink of passing out many times. I have a history of ectopic beats and ventricular tachycardia. I take daily Verapamil and Flecainide for this. This afternoon I had a 7 day ECG fitted. The routine ECG carried out beforehand showed a pause between heart beats. I have this a lot but just thought it was my ectopic beats, but now I’m worried I may have Long QT Syndrome. Does anyone here have this? Can you give me any reassurance? Thanks in advance.

[Lintilla]

Hi Bedlington - I have LQT, and if you search the forum, you'll find several others.

I'm 56, and I was diagnosed last year after first an an aunt, then my Dad were diagnosed. Once Dad's diagnosis was confirmed, I had genetic testing and was found positive for the KCNQ1 mutation.

I had reported palpitations to my GP twice when I was younger - in my mid-30s and again in my early 50s when they became much worse. Had ECGs which were apparently normal. I'd also had a couple of fainting episodes, but no-one asked about those, so the significance was lost.

I'm now under the care of an electrophysiologist at Bart's. I had various types of ECG there, and initially they were normal (big sigh of relief). My consultant said that the effects of LQT can vary widely between people, even with the same mutation in the same family, and left it to me to decide whether I wanted beta-blockers or not. Following a holter monitor test early this year, they did pick up a long average QT, so I've started taking Bisoprolol. I've noticed a big decrease in ectopics, but otherwise nothing to mention (I guess they'll re-ECG me in June when I return to Barts).

You can probably tell that I'm at the early stages of learning about how to live with this, so I have only simple knowledge to mention if you do turn out to have LQT:

- Remember that there are several types, and within those types each individual will respond differently.

- As my consultant pointed out, my Dad was diagnosed aged 82 - so he's only been treated since then. He still does exceptionally well for his age. You can still have a good quality of life.

- Make sure you have a list of drugs that can induce LQT. Several websites will oblige, for example: crediblemeds.org/. Check any OTC medicines/prescriptions yourself. I've asked my normal pharmacy to put a note on their records that I have LQT.

- Make sure all health professionals you see are aware of your LQT diagnosis/meds. I have several other chronic diseases, so I go to other hospitals. I take them copies of any significant Bart's correspondence.

- Make sure you're referred to a specialist cardio electrophysiologist - this is not something for a generalist. I was referred to Bart's via my genetic counsellor.

- Check what exercise you should do with your cardiologist.

In summary, aside from this, I don't make any concessions to LQT. I'm not even aware of it most of the time. In that, I know I'm lucky so far, but it shows it can be OK. I hope you find this somewhat reassuring.

With best wishes, and here's hoping you're not affected.

[Bedlington14 in reply to Lintilla]

Hi Lintilla, thank you so much for this, it’s so reassuring to know it’s possible to live a normal life with LQT. I’ve had a lot of ECGs and they pick up lots of ectopics which, with my history, my Cardiologist is not alarmed about, but they haven’t picked up anything else and I haven’t been tested specifically for LQT. I’ve asked to be referred to an electrophysiologist who I saw and trust before I moved to a new area so hopefully something will come of that.