Issue when reverting back to NSR

[Garaidh]

Hello everyone

I had tachycardia / SVT from teenage years. Earliest episodes awful as little info available (groups like this were unimaginable then!). Over the years I had an on / off battle with "an irregular heartbeat" and I think most drugs were tried. But it seemed to become less of a problem as I learned how to avoid it.

Fast forward to now, I'm a relatively fit 63 y/o and had AF formally diagnosed about 12 years ago. Online research enabled me to avoid triggers, take the natural supplements, and cope pretty well. I was on propranolol and a tranquiliser. My heart has physically always been sound. My BP is fine, 118/80 last week at annual checkup.

The AF started to get worse, episodes more frequent, about two years ago - following a really nasty virus which seemed like early form, pre-vaccination Covid. Episodes started to last for days. Very much rhythm led and not tachycardia. I could actually still be pretty active during an episode but clearly things were progressing.

In Oct 2021 I saw an EP at Western General in Edinburgh and he was great. I was well aware of Flecainide and pretty stressed about taking it, but I did. Took a while to get the dosing right but it was a HUGE success for me. I was astonished!

I did get Covid a year ago, and that led to breakthroughs but I was on too low a dose at the time. Upping it resolved the issue. I'm back down to 150/day. Plus 1.25 Bisoprolol. No Eliquis as I'm 0 on the CHADS score.

I try hard to do well on the lowest dose possible and still take supplements and watch triggers carefully.

My Afib burden is 95% lower.

But, occasionally, I'll get a breakthrough. Maybe once a month or less. Always when a few triggers align... too little sleep, too much exercise, dieting (huge background trigger!), have a bug, alcohol etc.

Apologies for the long scene setting to my question!

If I get a breakthrough episode now, it's shorter - but it's different. It's more tachy Afib - faster, I think probably Afib going into flutter (faster, more regular). Anyway, I do self convert OK, and previously I'd just kind of drift back into NSR. I was *always* aware of going into Afib - it would wake me instantly - but more slowly aware of going back into NSR - just feeling much better all of a sudden.

Several times now I've converted back to NSR from this higher rate Afib / flutter, my heart making a big sudden change in rate - maybe from 120 - 60. And I've felt it! Hard to describe but, last time it made me dizzy enough to gasp.

I wonder if this is because Flecainide controls it so well only bad episodes break through... or am I on too little Bisoprolol for rate (my normal rate is fairly low and BBs can give me bradycardia).

I feel really uneasy about this NSR converting thing. It feels unpleasant. The breakthroughs have been a bit rougher. I'm taking a few more steps to avoid 'trigger combos' but am now very curious about how the heart can change speed so fast, is that a new risk? Do I just need more Flecainide or is it a side effect of it?

After all these years dealing with heart rhythm issues - still learning, still puzzled by it all!

Thanks, Gary

[Buffafly]

Hi, this is fairly common but should be reported because it can be the result of a pause between AF and NSR. You should have a monitor long enough to catch one of those dizzy moments. I was able to catch one on my own device and it was taken very seriously by my cardiologist resulting in being given the option of an ablation for the AF + Flutter or a pacemaker. I had the ablation and though I still have AF I don’t have the ‘shock and awe’ reversion anymore. I don’t take Flecainide or similar either. Don’t worry but don’t put up with it either ❤️‍🩹

[Garaidh in reply to Buffafly]

Thank you Buffafly, really appreciate hearing your experience. Shock and awe a good description! Glad to hear you no longer have that particular thrill! I'm just trying to get my head around perhaps needing a different med on the rarer (thanks to Flecainide) occasion I get Afib, and am in an episode, which meds to take then - or avoid! More Bisoprolol or none? I just had my annual scheduled checkup and missed opportunity to ask about this... typical! 😊

[mjames1]

Afib and aflutter convert more gradually, but SVT can snap back from over 150 to normal within one beat, however, I never felt the dizziness you describe. Probably nothing, but I would let your doctor know.

Jim

[Gumbie_Cat]

I had this happen a couple of times last year, in those heady days where I went a month in sinus rhythm before A Fib would hit. Though it was already becoming persistent as it went on for several days.

I had Covid in October, wasn’t that poorly and my heart behaved - at the time. Yet at day 18 I went into A Fib and the Flecainide didn’t work, it just persisted. Had an ablation (also Edinburgh, they are good here) - but was in rhythm for less than two days. So, for me it’s just rate control now. Taking a while to come to terms with, but I’m getting there. I guess those dizzy dips have gone too though!

[Garaidh in reply to Gumbie_Cat]

Hi Gumbie CatThanks for the reply. It's a bit of a battle but, it's such a help to have this kind of place to swap experience!

Good to hear you being positive about the situation now. I often hear it takes more than one ablation. That's been raised with me (Dr Lang & co at WGH) but not as something needed yet.

My dad had AF and lived to mid 80s and if did not kill him so, there's that!

Dr Lang thought my heart might not be the shape at highest risk for clots - a genetic win, after the loss of getting Afib!

I also was fine thru the worst part of Covid and it was a fortnight later the Afib broke through. I was only taking 100mg Flecainide & 1.25 Bisoprolol so now realise that wasn't enough (17st guy).

I just wonder if Flecainide, while great at keeping AF at bay, does lead to breakthroughs being more flutter like / severe... and what do I do if I get that kind of episode? More Flecainide or less?

I'll need to make another appt and go see them. (Despite all current NHS bashing I've had no problem seeing doc or EP!)

Cheers

Gary

[Gumbie_Cat in reply to Garaidh]

Best of luck with it all. Runs in my family too, and I’m relieved that it’s just the electrics that are haywire and not my heart structure. Crossing fingers with this persistent A Fib.

Main problem for me is that my legs don’t like stairs and hills, don’t get particularly out of breath, just the legs. Not great in Edinburgh 😂

[Garaidh in reply to Gumbie_Cat]

Haha, you're not wrong about Edinburgh! I credit that with helping keep me heart fitter, but sorry you've legs issues! I've often been grateful in that way about my heart, that it's the wiring and not the plumbing. When I had long spells of rumbling Afib, up to a week, I was basically OK just a bit 'low watt', Flecainide has sorted that but I'd prefer if it didn't also kill me! Haha. So I hope the persistent with the right meds settles with you and you get on fine. Best of wishes. If you need a chat with a local just holler! 😊

[Gumbie_Cat in reply to Garaidh]

Low watt! That explains the feeling dim - I usually reckon it’s new spark plugs that I need.

[Buffafly in reply to Garaidh]

Flecainide can cause flutter so unless you have been told to take extra at the start of an episode (known as PIP - pill in pocket) you should not take more. Bisoprolol reduces heart rate which could be a problem when you revert so same. Never be tempted to mess about with your dosage without consultation. I hope you get an appointment soon.

[Garaidh in reply to Buffafly]

Thanks BuffaflyI rang the EP office today and I 've got a phone appointment this week. I didn't know that about Flecainide, it's been great. Thanks for the advice, I'll see what he says! 😊

[President2012]

I was taken off Flec as it was causing pauses on conversion to NSR. I blacked out a couple of times. Please have it investigated.

[Garaidh in reply to President2012]

Thanks for the reply and best of luck!

[JudiHalf]

I don’t take any meds for AF apart from anti coag and this happens to me every time I revert back to nsr, so quite a few times, it is a horrible feeling but I am just relieved the afib is over!

I am waiting for a pacemaker because of bradycardia so hopefully will solve the reversion pause as well, although with doctors and nurses on strike who knows when that will happen.

[Garaidh]

Thanks for the reply Judi. I think it might well be related to having a naturally slow heartbeat so the jump is bigger!It's great to read such positive things about pacemakers. I heard that direct from someone two weeks ago when in cardio for annual checkup.

I'm just gong to try harder with avoiding triggers and use minimum poss meds and e what happens. It's journey I guess! Best of luck to you 😊

[JudiHalf in reply to Garaidh]

Thanks, I too try and avoid triggers, we are all very different with our AF burdens.