LBBB and flecainide

[Ppiman]

I wonder if anyone here with LBBB (along with AF / flutter or atrial ectopic beats) is also taking flecainide?

I’ve been assured it’s safe but Dr Google has given me misgivings and my GP isn’t a fan, either.

Steve

[Ennasti]

As you know, we share similar symptoms, including the LBBB, and I’ve often wondered if you have the same or similar condition but it hasn’t been identified for you.

My EP has ruled out anti arrhythmia meds like flecainide for me as they work by blocking the sodium channels of the heart. The sodium channels are the main electrical conduction hub of the heart. It can cause dangerous arrhythmias in people with a sodium channelopathy like myself.

[Ppiman in reply to Ennasti]

Thanks. That’s what I have read, but its use with LBBB (rather than RBBB) seems safe when I look online - but not clearly enough for me to feel confident, especially with my GP seeming unsure. It’s been prescribed for me by my cardiologist/ EP who assured me following my cardiac MRI, that it would be safe. I even reminded him of my wide QRS from the LBBB but he insisted it was okay.

On a related matter, my LBBB seems more symptomatic these days. I often run the Apple ECG when I feel weaker and with slight light-headedness and all it shows is NSR but with wide peaks. How do you find it?

Steve

[Turquoise19 in reply to Ppiman]

I took it for a few months before my 2nd ablation and a few months after. Maybe about a year in total. Put me back into NSR before the ablation. I thought the min thing was you can't take it if you have heart failure.

[Turquoise19 in reply to Turquoise19]

Just looked up LBBB, not somthing I had ...

[Ppiman in reply to Turquoise19]

Thanks. I took it once and, yes, it gave me a few days clear of AF or ectopics, but som stance pounding heartbeats. I haven't tried it again.

Steve

[Ennasti in reply to Ppiman]

My LBBB has become predictably unpredictable. I now often feel it as a tightness in my chest. A couple of weeks ago it was coming and going throughout the day - this lasted for around a week. I’m not sure why. Every ECG would have normal beats, then wide QRS, then normal beats.

I know if I have any respiratory issue - a light cough from a cold etc, it’s there permanently and when I exert myself it clicks in. Earlier this year I got into the routine of walking for an hour about 3 times a week. The LBBB kicked in and out every day, even when I wasn’t walking. It was like it was shocked by the walking and became super sensitive.

I have good days and not so good days and I’m never really sure why. At the moment it’s my ectopics carrying on. I’ve given up worrying - it’s like dealing with a very unreasonable 3 year old toddler!

[Ppiman in reply to Ennasti]

You have entirely described the way it works with me. My doctor says that all my issues come from the atrial ectopic beats (inc AF), not the LBBB, though. How weird. He suggested once that instead of ablation, I could have pace and ablate, but when I asked of that was a re-synchronisation PM he said I didn;t need that at all. It sometimes certainly feels that I do!

It's comforting to read your experiences but we could both do without it! I don't think there's any treatment for the symptoms.

Steve

[Blearyeyed]

I think I'd be asking for a second opinion on this.I'm not in this situation but I've read that doctors need to be more careful about considering the use of flecainide in patients with LBBB.

I remember reading a case report of a patient having LBB issues whom took Flecainide and guidance was to suspend use of Flec in someone with LBB block. or LBB with long QRS, stopping it caused the eventual reversal of the LBB problem.

I know someone with LBBB but they aren't on this forum , I'll ask them if they take Flecainide or if they've been told they can take it in the future.

I don't know if you are on the BHF forum on HU as well as this one but it might be worth joining and asking this question in a post over there because there are a lot more people with LBBB in that group whom could answer the question for speedily for you.

Sorry you're going through it ATM, take care , Bee

[Ppiman in reply to Blearyeyed]

Thanks, Bee. I am on the forum but seem not to get notifications often. Reading about LBBB there is a less comforting experience as most seem to have HF there. Asking for a second opinion is hard since the cardio/EP I have is extraordinarily well respected and is part of a small team. I think I shall email his secretary and ask for reassurance.

Thanks again. It's a comfort to read replies from you!

Steve

[Hammerboy]

An interesting question which I may have to consider in the coming weeks . My latest ECG shows a wide QRS which I’ve been told by the Arrhythmia team could be due to LBBB developing and as I’m due for an aortic valve replacement in 2 weeks time I’m also told that my AF will quite probably worsen post surgery . The initial response will be medication and quite possibly Flecanide so I do feel it’s worth a conversation with my surgeon before they go ahead

[Ppiman in reply to Hammerboy]

Oh well - join our very small club, then! You'll be welcome. From reading around this, having a replacement valve often brings on LBBB and, odd you should mention it, but a friend in the same position you are in used my ECG and, guess what: wide QRS. My brother-in-law has one but his ECG is perfect in that respect.

Looking online, I think LBBB is safer to treat than RBBB, even though in other ways it is the worse of the two, and seems okay with flecainide (all else being equal and the LBBB exists with no structural issues or ischaemia).

Steve

[Hammerboy in reply to Ppiman]

That’s life I guess , I’ll take one day at a time 👍

[Ppiman in reply to Hammerboy]

But don't forget Christmas is around the corner!

Steve

[Hammerboy in reply to Ppiman]

Don’t spoil it lol

[Beta44]

I have a wide QRS with LBBB which comes and goes and was told by my EP and a cardiologist not to mention my GP that I must never take Flecainide again. I only suggested it as a very occasional pill in pocket and was vey soundly put down.

Peter

[Ppiman in reply to Beta44]

Well, Peter, that's interesting. Thank you for letting me know. Mine told me that the cardiac MRI showed him it would be safe as there were no other issues with my heart. He's a very experienced cardio/EP, too. My GP was wary, however. I have decided to leave it until I next get the chance to talk to the specialist. I am lucky that, even though I do get symptoms with the ectopics/AF and the LBBB, they are not so bad these days (with my AF the rate has dropped from 150+ to around 85-130bpm).

Are you aware of your LBBB? Most people seem to have no symptoms looking online, but mine is pronounced, even if none too bad.

Steve

[Buffafly in reply to Ppiman]

What are your symptoms? My LBBB has narrowed from a mountain with a twin peak or plateau at the top to a mountain with a wide base and Kardia always rates my tracings as ‘Unclassified’.

[Buffafly in reply to Buffafly]

Now read your description below, thanks.

[Ppiman in reply to Buffafly]

Mine changed a while back to cause weird looking and feeling “missed beats” along with the wide peaks. My specialist says it’s all atrial but it feels a mixture to me.

Steve

[Beta44 in reply to Ppiman]

Hi Steve,

I’m completely unaware of LBBB. It shows sometimes on my Kardia and was picked up years ago when I had AF episodes regularly. I only get very occasional episodes these days since ablation so I was only asking about Flecainide in case I needed to stop one at any time. As I have only had two short episodes in the last nine years it hasn’t made any difference. I was however, on Flecainide for 20 years prior to ablation and still have nerve damage so I am glad not to take it.

Peter

[Ppiman in reply to Beta44]

That's interesting, Peter - thanks. Your ablation has been a wonderful success, thank goodness. What was the "nerve damage" can I ask?

Steve

[Beta44 in reply to Ppiman]

Numb feet and Reynaud’s disease to a finger.

[Ppiman in reply to Beta44]

That’s interesting. I get that a little and my GP calls it mild peripheral neuropathy (but this began years before my heart issues).

Steve

[AFCyclist]

I was diagnosed with LBBB about 10 years ago and was told by my EP that I could not take Flecainide.

[Ppiman in reply to AFCyclist]

Thanks. It is worrying for me. I shall email my doctor to ask for reassurance. Do you get symptoms from yours?

Steve

[paulalex1313]

I have been taking Flecainide since 1993, when my first very unpleasant symptoms of AF appeared. Subsequently I have had three ablation procedures and since 2015 have been symptom free. When I was discharged in 2016 I was advised to continue taking Flecainide Acetate twice a day and continue to do so for the rest of my life. So far, I have been pretty well symptom free, which is wonderful, as my AF episodes were throughly unpleasant. I also carry a 100mg Flacainide Acetate tablet in my pocket, to take just in case of an attack.

[Ppiman in reply to paulalex1313]

That's interesting and thanks so much for relating your experience. I am on a waiting list for a second ablation (my first was in 2019 for atrial flutter, not the current AF/ectopics). The specialist has said that a third might be needed to stop all misconduction. In view of others' comments, I am going to email him for guidance.

I hope life is treating you well as I see in your notes that you look after your wife. A friend has Parkinson's and he lives close so I have seen his progress over many years now. He copes well enough, but it's clearly a tough to deal with condition. I send you warm thoughts.

Steve

[Alemo27 in reply to paulalex1313]

having Afib for many years and taking beta blocker with Flecainide as PRN was helping so far . No ablation

But increased onset of Afib is bothering and cardiologist insist on taking flec. 2x50 mg a day

I feel after exhausted and fatigued .Also swollen legs . I blame age- I am over 84 , and reading a lot about flec. precaution decided to take at least 50mg/day .So much contradiction .One cardiologist gave Sotalol and no beta-blocker

that is the same IC group of med .as flec.

[Ppiman in reply to Alemo27]

I guess it’s a balance. Life is a bit of a rollercoaster at times!

Steve

[30912]

Interesting. I have PAF and LBBB which was diagnosed decades ago and the last anti-arrythmic I was prescribed was Flecainide which I took daily for a couple of years. Although, as far as I knew, taking it had no discernable effects on me and my PAF still eventually broke through. At that stage my cardiologist told me to stop taking it. I was surprised to recently find on my medical records that I am allergic to Flecainide. Why? I didn't know they put that on there. So reading your post makes me wonder if I shouldn't have been taking it in the first place. I've just had a full blood test done and thankfully everything is within normal ranges apparently.

[Ppiman in reply to 30912]

Thanks for replying, and how interesting? It will be worth asking but I think there are no long term effects from it. I know on my notes it says I had Lyme disease many years ago, when the test I had for it were negative. I have never queried that but it's interesting as it seems it can cause both atrial flutter and LBBB!

Steve

[Alemo27 in reply to 30912]

As I wrote above I kept flecaidine as PRN,for many years,though it has been recommended for every day.The reason-fatigue. Still hesitate to take everyday !!

Perhaps, I am allergic to it. How do your dr.figured out ?!?! my blood test isn’t bad

Interesting

[30912 in reply to Alemo27]

I have no idea who or how the allergic flag was set on my health records but it's there nonetheless. I had no apparent reaction to Flecainide that I was aware off and no abnormalities in very recent blood tests. Perhaps someone didn't want to tell me something when I was taken off it six years ago. Even so, I'm so far down the line with AF that I no longer believe (nor do I particularly want) an anti-arrythmic drug that can keep the lid on it.

[Ppiman in reply to 30912]

I think you have weighed up well what likely happened. My elderly friend, Philip, is 90 and his AF has been permanent for years now. He takes only warfarin daily and is well enough. I took him to hospital today as he's hurt his hip badly and was in great pain. He feared it was his prostate cancer spreading. It was hard work for me pushing him and whatever, so, no surprise, my AF started, but he was fine! (I coped and was pleased to find that it was "only" arthritis!).

Steve

[KenRC]

excuse my ignorance- what is LBBB🤔?

[Ppiman in reply to KenRC]

Hi Ken!

There are so many of these abbreviations. Sorry! I used it as I thought it would flag up the post to those who have the condition and others can ignore it.

LBBB and RBBB are two more of the many "conduction problems" that can beset the heart and which cause us our problems with AF and other palpitations. These problems are generally "upstairs" in the heart's atrium but LBBB occurs between the two lower chambers, feeding the ventricles.

The "wiring" of the heart starts in the top right of the chamber called the atrium in a bundle of cells called the SA (i.e. sino-atrial) node, which is the heart's first natural pacemaker at the top right of the heart. The wiring spreads through the atrium and then goes into the downstairs chamber, the ventricles, but first is funnelled through a second natural pacemaker, a bundle of cells called the AV (i.e. atrioventricular) node. From there, it splits into two "bundle branches", left and right, to energise the right and left ventricles. As happens with AF and the like, the conduction in these can go awry and get slowed or stopped. This is known as a type of "heart block", with mine being "left bundle branch block" or LBBB. This is increasingly common over sixty years of age, I gather, but much less common than RBBB.

Reading online, these kinds of heart block don't often cause people symptoms and often turn up only on an ECG and, even then, I gather doctors usually ignore them as being of no likely consequence. In my case, it comes and goes and shows as a wide peak on the ECG (see below from Apple Watch). This is called the "QRS" peak as it covers three points on an ECG (i.e. we all have PQRS & T peaks on our ECGs, with all but the high R peak, when the ventricle contracts and sends out a big signal, being small bumps).

Wide peak on mine is actually because there are two peaks almost together with the first being the right ventricle contracting, then the second being the left ventricle contracting. They ought to be simultaneous, but I my case, aren't.

When my LBBB starts, I feel fatigue, a need to breathe more deeply, mild chest pain and pressure and slightly light headed - thoroughly washed out, in fact. Sometimes I also have a mild pressure headache and even a kind of "distancing" feeling from the world and sounds in it, most odd and disconcerting.

This all happens with a normal rhythm (NSR) happening, too, so the Apple Watch ignores it and calls it normal ("NSR" - normal sinus rhythm). In fact, the feeling it causes me is much like my AF, perhaps even worse, but without the racing pulse. It's very draining and hard to fight against.

Steve

ECG from Apple Watch showing "wide QRS" from LBBB.

[Buffafly in reply to Ppiman]

This is LBBB

You can see the twin peaks

[Ppiman in reply to Buffafly]

Yes indeed. Mine is sometimes like that but on and off. I get lots of ectopic beats, too and AF maybe once a week.

Steve

[Ennasti in reply to Buffafly]

Yes, that’s how mine look. On a 6 lead it shows lead II as negative as well.

[Ennasti in reply to Buffafly]

I couldn’t upload the image on my last response so trying again. This reading shows where the LBBB comes in and the QRS in lead II changes to negative, and changes occur in the other leads.

Lbbb on an ecg

[Ppiman in reply to Ennasti]

Those negative dips on Lead II are what show on mine on Lead 1, or at least on my Apple ECG. On my six lead Contec, they stay positive on I and II.

In the evenings, especially, I get lots of those. The Contec ECG labels them as "missed beats" and that is what they feel like. Last night was really hard going and felt so much worse than the previous night's 6-hour AF session. Those here who don't get ectopics like this are lucky and the idea that they are "harmless" whilst true enough, doesn't make them feel easier to cope with.

I think LBBB isn't well explained online and this thread has helped me a great deal. It's clear that not many get it symptomatically, but some here do.

Steve

[KenRC in reply to Ppiman]

Thanks for replying, well explained. There is so much to learn about all these conditions. Hope you get sorted!

[Ppiman in reply to KenRC]

Thank you, Ken. We all feel like we’re swimming against the current at times.

Steve

[KenRC in reply to Ppiman]

Just read your previous reply re Lyme disease - same with me! Tests came back negative but I ended up with a facial palsy which couldn’t be linked to anything else despite countless MRI’s & X-rays. Then developed afib …..

[Ppiman in reply to KenRC]

Now there’s a thing. I’ve never tested positive but have read that it’s not easy to test for. I also developed peripheral neuropathy, another classic connection. That said, I have had ectopic beats and PN for years now.

Steve

[Alemo27 in reply to Ppiman]

Since you’re well informed about Afib I wander what do you think about Flecainide taking every day vs. PRN. Taking beta blocker seems don’t always stop afib and prn of flec is helping

While everyday produce big fatigue and potentially I think reduce the effect plus side effect on kidneys. Etc

Thank you

[Ppiman in reply to Alemo27]

I was given flecainide as the LBBB slows my heart and going up to 2.5mg made me feel a bit symptomatic (light head, spacey and a bit breathless). I asked about taking it "as needed" but both my specialist and GP said they felt daily was best, without explaining why. I think it depends on how often the AF occurs and how symptomatic it is. Mine now comes with a slightly lower heart rate and I can cope well enough with it, so I feel PRN would be better than risking daily - but doctors have other views.

Steve

[Cookie24]

I read through the comments. Does anyone know if this applies to Propafenone?

[Ppiman in reply to Cookie24]

I don't think so. I think flecainide is the riskiest of the drugs along with one other called dofetilide. I have direct experience, though so hopefully others will say.

Steve