Recent diagnosis of Paroxysmal AF and underlining Lown-Ganong-Levine (LGL) syndrome

[ladybird16]

Hello all,

I haven't written on here before but thought I would see if anyone knows some further information then what I could find on Google... ( which has not been helpful)

At the end of January this year I ended up in hospital with AF. My resting heart rate was around 160 bpm and irregular, normally it stays within the 60bpm..... I was given intravenous Verapamil which took me under 100 bpm and enough to get me home (beta blockers don't agree with me) 5 days later my heart went back into normal sinus rhythm.

I had an over the phone consultation with NHS Cardiologist and he prescribed me Verapamil 120mg slow release and Flecainide 100mg x 2 daily, due to my on going symptoms. I'm still having symptoms of atrial fluttering and light-headedness.

This whole situation has caused me alot of stress and I felt I needed further answers, so I managed to go private and get further testing done. I have now been diagnosed with Lown-Ganong-Levine syndrome (LGL), I have very short PR waves but regular heart rate at this time. Cardiologist also said I can take a further 100mg of Flecainide if symptoms still persist.

So from my understanding, it looks like LGL syndrome caused my AF.

I'm now waiting to speak to the NHS cardiologist about the recent diagnosis of LGL. The private Cardiologist stated I will need a electrophysiological (EP) study to be done next. So hopefully the NHS cardiologist will put me through for this.

Firstly.... has anyone on here been diagnosed with LGL syndrome and how has it affected your life?

Cardiologist had previously mentioned an ablation but that was for the AF diagnosis, so unsure whether this would work for my condition now, anyone know?

Also, just to mention I had a catheter ablation in 2013 due to having regular long intervals of palpitations and ectopic beats but I haven't had any further issues over the years until now, but this is a completely different diagnosis.

If anyone can shed any light on LGL syndrome and AF, it would be much appreciated.

Thank you all

[rosyG]

Hi,Sorry to hear you have this problem- I think you may have to wait for the EP study results as there can be a few causes of LGL and I think the study may show where the increased activity is originating from - and hopefully- what can be done about it.

[ladybird16 in reply to rosyG]

Thanks for the response.Yep....I'm just being impatient... lol.....

It's just thrown me out of sync and I'm concerned there is going to be a long wait to get further answers, but I have to learn these things are out of my control unfortunately.

[Hidden]

Did the cardiologist suggest a reason this hadn’t been picked up before? The very short PR interval [not waves] appears to be pretty obvious. But then again, I had never heard of this before today. It will be interesting to see if your NHS cardio agrees with the private one

[ladybird16 in reply to Hidden]

Sorry, yes intervals ..... this is still all new to me. I don't know why it wasn't picked up earlier either but I did ask could this have been possibly the problem before and he said if it was there, then it would have been picked up. I previously dealt with Professor Schilling at London Barts, who is very good at all this. So I'm assuming my heart has changed during the last 7 years after I had my previous ablation.

It's certainly going to be an interesting ride of emotions to find out what is going to happen next

[Dichdigger]

I have what I believe is lone paroxysmal AF. Beta blockers do not agree with me either. The Atenolol I was on seemed to bring my low heart rate even lower to the point of bradycardia. Flecainide seems to work the best for me for my AF. I was prescribed 100mg 2x daily. I take 50mg 2x daily. I tried Propafenone, but it didn’t seem to work for me. Although I believe my AF is mostly due to irritation of my vagus nerve, I prefer to stay on the Flecainide until I have researched the causes and/or triggers for my type of lone paroxysmal AF. I wish you the best in your search.

[ladybird16 in reply to Dichdigger]

Thank you Dichdigger.It's certainly trial and error when it comes to medications. Beta blockers don't agree with me at all and tend to bring on my asthma.

Good luck on your journey 👍