just had PAF proposed as my current condition (awaiting 24 hour monitoring) but I am convinced it is the right diagnosis for the symptoms I get (bouts of breathlessness, fatigue, high BP (120), lasting between 15 and 45 mins, most days). My fitness and energy levels have been in decline for about three months.
I’ve been recommended to take 100g Flecainide when the episodes occur but I am a bit concerned about this: because the episode are almost daily; I’m already on a lot of Flecainide and worry about side effects.
My current meds are Apxiban, Diltizem, Flecainide 200mg (100 twice per day).
So if I take a PIP 100 of Flecainide I’ll be at the max dose.
does anyone on here take that much? What are side effects I should look out for? Should I just sit through the PAF episodes instead I wonder?
thanks for reading.
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LKUK
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When I took flecainide as PIP it was 300mg in one dose as I was never on a maintenance dose. Long long time ago now as I was switched to propafanone by my EP when I first met him.
I was in the same boat. 100mg of flec twice a day - it worked well for me. I did though go into afib when traveling and had little sleep the night before. My cardio said to take one as a PIP if I returned to afib which I did. Within an hour of doing so I was back in normal rhythm although my HR remained higher for a few day's after.
The only thought that occurs to me is you have short bouts of afib every day - 300mg a day is a large dose and you appear to convert on your own. I'm not a medic so I feel you need to talk to your doctor about this one. I would ask two questions.
1 - will this extra dose increase my risk of flutter.
2 - is it worth taking a small dose of a beta blocker (ie Bisoprolol 1.5mg a day) to help reduce this risk.
Sorry no personal experience of 300mgs Flecainide. However, my cardio did forewarned me that level may be required and one or two on this Forum have reached that level. Its just possible it could be worth trying.
If I was you, I would be back to my cardio with an early private appointment and discuss your options: ablation, Flecainide substitute or partner drug, lifestyle changes. I am not a fan of ablation and have never had one but all other things being equal my money is on that route.
thanks. I’ll see what the 24 hour monitor reveals. And for now will largely manage the episodes by sitting down and resting when I can. But will follow up with cardiologist after that.
Welcome to the forum. You might need to edit your original post - did you mean a high HR of 120, rather than BP? If it is your heart rate, it might make you feel a little better, but 120 isn’t actually very high for AF, though I expect it feels like it is, as I know it can be debilitating when in an episode.
Does your heart rate feel irregular? Are you able to capture any episodes on a Smartwatch or anything? A lot of us have these ( like a Fitbit or applewatch) or a Kardia machine which are easy to use and you can also show these to medics so they can see what’s happening ( while you wait fir your monitor).
I agree with Paul above though, although happening every day, your episodes are quite short and they seem to be resolving by themselves, I would be asking those same questions to a dr. As you are already on fleconaide, were you given that recently - or was that for something else unrelated to the Af if they’re looking into if you have that now? It’s normally prescribed after an echocardiogram of the heart and by a cardiologist initially?
hello yes heart rate goes up to 120 but this is when I am merely walking very slowly. Activity that would give me a heart rate of perhaps 80/85 when not in the breathlessness zone. I started on Flec in Nov 21 with a cardio version. I have a smart watch and on the occasions during these episodes when I’ve tried the ecg on there, it doesn’t find AF. So it’s possible it’s not that. But I do feel my heart pounding and sone fluttering.
Ah, I didn’t know you had a history of AF already, which explains the fleconaide. It’s possible that it isn’t AF still then, but can understand completely why you need that 24 hr monitor. I’m not sure if increasing fleconaide alone is the right thing though without them doing additional investigation first into what it is that you have going on, as it’s an anti-arrhythmic medication and it sounds like you need a PiP to help lower your heart rate instead, or both?
Does it ever happen when you’re not walking?
I will be honest and I wouldn’t like to take 300 max every day and like you, I’d be worried about side effects, especially without a beta blocker. I have taken that full amount as a PIP only once and wasn’t keen and that was with a beta blocker, not without. As your episodes are still quite short, I’d probably wait for them to resolve, at least until they did more tests.
Hope you get the monitor soon. If things get worse or the wait is very long ( and you can push to it) you could arrange to see a cardiologist privately. Some of us have to do this, due to the long waits. Costs are approx £200 to start.
thanks there. I’ve got my appointment for the monitor now 5 January! But I’m managing ok now I think without that extra 100 mg of Flec. I am on Diltizem as well: a calcium channel blocker rather than a beta blocker.
I thought it might be a bit of a wait unfortunately. If things get worse, I would try and consider going privately, if I could, as you’d get seen within a week probably. I don’t know if a calcium channel blocker has quite the same effect as a beta blocker when taken with Flecainide, as opposed to something like Bisoprolol for example. Your BP is higher than a ‘normal’ BP, ( I think diltiazem is supposed to reduce BP?) so this may be an option for them to consider. Perhaps try and have a chat with the nurse again if you can? Ask them if increasing the flec is really the correct thing, considering the HR is the problem? - and tell them what your BP currently is too.
thanks good advice. I’ve actually had a good week. Much fewer breathlessness episodes. I feel more relaxed about it having got the advice here. And that seems to be reducing the symptoms. My diet is better too which is also helping I think. So for now I haven’t used the extra Flec at all. I can’t take beta blockers because of asthma.
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