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flecainide

Suesouth profile image
36 Replies

hi all, spent 9.50 hours in A&E last night as flecainide didn’t work as a PIP, had to have a drip and a Bisoprolol that I normally have at bedtime! Has this happened to any one else! Feel absolutely shattered now?

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Suesouth profile image
Suesouth
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36 Replies
jeanjeannie50 profile image
jeanjeannie50

I'm sad to say that a lot of members on this forum have experienced exactly what you have Sue, some are also admitted to a hospital ward, me included. Attacks of AF can leave you drained for days.

Jean

Suesouth profile image
Suesouth in reply tojeanjeannie50

Yes, that’s how I feel now, can’t do much everything is an effort, as well as flecainide not working it was the worst episode I’ve had, thought all my tabs were controlling it, but you never know!!

jeanjeannie50 profile image
jeanjeannie50 in reply toSuesouth

No, just when you think you're ok, up AF pops to spoil everything. It's a hateful condition and the only thing that helps me is to think there are a lot more worse things we could have had.

Suesouth profile image
Suesouth in reply tojeanjeannie50

To top it all two weeks ago had my annual checks and was told I was high risk for heart attack, so that was also on my mind! Can’t win with this! Oh well plod on!

jeanjeannie50 profile image
jeanjeannie50 in reply toSuesouth

Why on earth did they say that about a heart attack? Are you taking anticoagulants?

Suesouth profile image
Suesouth in reply tojeanjeannie50

Yes, taking rivaroxoban,Bisoprolol, blood pressure tabs, water tabs, they take in different factors, especially hereditary ones, and I have those on both sides unfortunately!

Auriculaire profile image
Auriculaire in reply toSuesouth

That is probably the new Qrisk evaluation which is telling more people they are at high risk than the old one did. Well studies of the old one in the real world showed that it consistently overestimated risk of cardiovascular events so I expect the new one to overestimate even more. If I were you I'd stop worrying about it. My father dropped dead of a heart attack when he was 40. But his mother lived to be a month short of 98 despite being a " creaking gate " for 40+ years! I have now outlived my father by 30 years despite his early death counting in my "risk".

Suesouth profile image
Suesouth in reply toAuriculaire

Possibly, only told this about three weeks ago!

pd63 profile image
pd63 in reply toSuesouth

GP told me ten years ago that I had a 1 in 10 chance of a heart attack, I replied that I'm one of the other nine, he wasn't impressed

secondtry profile image
secondtry

'...was told I was high risk for heart attack, so that was also on my mind!'

The analogy I like to use, which I believe is applicable to most of us Affibbers, is AF starts when the glass overflows. Many things including hereditary, stress and poor lifestyle choices go into the glass and so any one thing can cause an overflow if you are near the top; hence maybe that 'high risk of heart attack' comment did it.

If I was you I would glean all the information you can on those checks incl. a comparison to your last ones done and take what action you can eg maybe a second opinion; after that try and forget the worry as you have done your best.

Suesouth profile image
Suesouth in reply tosecondtry

Thanks secondtry, I have already made some changes, but still cannot find a trigger, just know that I didn’t feel right during the day, nothing specific, but a generally off day, then it started!

Auriculaire profile image
Auriculaire in reply toSuesouth

I get that sometimes with afib episodes to the extent that now if I have such a day I start expecting the afib to kick in!

Singwell profile image
Singwell in reply tosecondtry

That's a very wise observation! I usually look back when mine kicks off and see that there's been an aggregate of factors - working that little bit too hard for a few days and feeling 'driven', ate later than normal, didn't take my afternoon rest, poor sleep etc, missed my walk 2 days in a row...Add them up and AF will appear 'randomly'.

PrivateRyan profile image
PrivateRyan

I'm beginning to hate this condition. I had my worst bout of AF to date on Monday night, lasting around 13 hours. I couldn't go to work Tuesday, so another days pay lost, and I'm off to York for a couple of days today still feeling drained. I'm on the waiting list for an ablation and hope I'm one of the lucky ones who have a good outcome. The random nature is the most annoying thing but on the flip side, I know there are far worse ailments around.

Suesouth profile image
Suesouth in reply toPrivateRyan

Yes I can relate to that, it is horrible at the time and for a few days after, but there are people worse off !

Singwell profile image
Singwell

Sue I'm always drained after a long episode. Especially if I end up in A and E - not the most relaxing place is it? Even for shorter episodes that I can stop with extra PiP it takes 24 hours for me to feel energy return. Longer bouts, it's 3 days. Do you think the worrying made it worse this time? Nothing like anxiety to set mine off!

Suesouth profile image
Suesouth in reply toSingwell

Possibly, also I’m wondering if the heat is a factor, I was just surprised the flecainide didn’t work!

Singwell profile image
Singwell in reply toSuesouth

It's been so airless hasn't it? Even here in Wales temperatures only dropped to 18 degrees at night. Keep hydrated and I'd recommend the organic coconut water too.Are you on regular dose of Flecainide or is it Bisoprolol with Flecainide as PiP? Might be you need advice on adjusting your PiP strategy. Can you talk to your EP or cardiologist? You don't want a repeat performance if possible!

Suesouth profile image
Suesouth in reply toSingwell

Bisoprolol, rivaroxoban,candesartan and flecainide asPIP. I’m in Devon and it’s not cooling down at night, which is draining in itself, perhaps that was the trigger🤷‍♀️

Singwell profile image
Singwell in reply toSuesouth

I think you might be right re heat. It's not as intense as the heatwave was so maybe more insidious. Try having a lukewarm shower before bed and maybe during the day if you can. Being too warm messes with our BP doesn't it, so that might be a contribution too.

Suesouth profile image
Suesouth in reply toSingwell

Yes it definately does, it’s a bit cooler today, with some drizzle, so I’ll enjoy that for a while!

pusillanimous profile image
pusillanimous in reply toSingwell

I had to smile at your comment (forgive me) about the temperature, I live in South Africa, my computer tells me it is 21C and cloudy, I'm wearing a thick jumper and Jacket to keep warm !!!!!

Suesouth profile image
Suesouth in reply topusillanimous

😂😂 my daughter does that, she is in Australia!!

Braygirl profile image
Braygirl

Hi Sue,That happened to me the other way round! I spent 14 hours in A&E with fast Afib in April. I had a Metoprolol drip, Bisoprol drip, and an IV injection of another beta blocker I cant remember!

None of these worked, and I was headed for cardioversion...then the Consultant said he would try Flecanaid.. had one tablet and went back to NSR within 40 minutes.

He then prescribed it as a PIP, and it has been successful (touch wood) with episodes at home.

It has given me some peace of mind, as episodes are more frequent.

It is exhausting, and the awful anxiety knocks you out! I just crawled into bed when I got home and slept for hours. Takes a good while to fully recover .... and then deal with the anxiety after the episode!

Just rest and sleep, keep warm, and relax for a few days. Hope you feel better soon. X

Suesouth profile image
Suesouth in reply toBraygirl

Thank you. I though5 I’d be ok with flecainide as a PIP, but just didn’t work for me!

Ducky2003 profile image
Ducky2003

In the first 6 months of the AF ride I ended up in A&E about 20 times for 12 to 24 hours. Always left me like a zombie (well, more zombiesque than usual).

I used the analogy that I felt like I'd run a marathon without having actually moved.

Never used anything as a pip though, as 3 days of Flecanide did not agree with me at all.😊.

Suesouth profile image
Suesouth in reply toDucky2003

That’s exactly how I feel at moment! Flecainide doesn’t seem to affect me, just doesn’t work!

Ducky2003 profile image
Ducky2003 in reply toSuesouth

Taking the Flecanide for 3 days left me begging for the AF.

Suesouth profile image
Suesouth in reply toDucky2003

Oh dear, only got it as PIP

Rossdkemp profile image
Rossdkemp

Sorry to hear this. Interested to know what people have been told re PIP. Is it always the same dose? I’m not on flecanide following 2 ablations but 150mg is what I’ve been told.

Suesouth profile image
Suesouth in reply toRossdkemp

100mg initially then another 100 mg 20 minutes later if first doesn’t work, that’s it then ! Maximum dose per 24 hours!

Teresa156 profile image
Teresa156 in reply toRossdkemp

My PIP of fleconaide, prescribed for me by a cardiologist is 300mg, taken in two seperate doses of 150 mg , with a beta blocker, half an hour apart….I’ve only taken it once last year, when I had my last episode, but it made me feel a bit spaced out, but I went back to NSR within 2 hours. I think it’s also based on your weight, but I still think it’s quite a high dose for me, in one go. I have queried it with the cardiologist again as I’m a couple of pounds under 11 st, which I read was the minimum weight for that dose, but he disregarded it and said it was fine. I’m still debating that next time I’ll risk taking 250mg though, but he said it might not work as well for me. It shows we are all different though and I think they must tailor it to each individual case.

Suesouth profile image
Suesouth

My cardiologist has 200mg max

Teresa156 profile image
Teresa156 in reply toSuesouth

Yes, I’ve heard many differing amounts for a PIP. I don’t think I’ll take that amount again as I did feel odd after but it was the first time I’d taken it. I’m intending to take 150 and then 100 next time if I need to. When I told him this, He said I could try , but if it didn’t work, taking another 50 after that might still not work and I’d have to go to A&E so he said it was up to me, but as 300 seemed to do it, I should take it. I’ve seen other posts in the past with varying levels so they do all seem to differ.

Rossdkemp profile image
Rossdkemp

Interesting. Thanks all. I’ve taken my Pip once since my last ablation (April 2021). 150mg and took about 2 hours to work. By which point I was in A&E waiting.

Gumbie_Cat profile image
Gumbie_Cat

I’m just waiting to be prescribed Flecainide with Bisoprolol as a PIP. Don’t know the dosage yet. The cardiologist recommended it a month ago, said to come off dronedarone but I needed an echo. Had that last week and was willing myself to get the PIP before it kicked off again.Was told that in the meantime I should go to A&E and get a cardioversion. So I went in one evening at end of July, and was given a magnesium drip and Bisoprolol - told to take that daily. It did bring me back to rhythm with quite a jolt the next morning.

One week later and back in AF, but haven’t gone in as the rate is lower due to the Bisoprolol - I reckoned this is the stage they sent me home at last week, so they’re not going to do anything else.

Must admit that I’m feeling a bit down, as I don’t know when I will hear about echocardiogram results, and if I’m able to move to a PIP, or whether I can stop the daily Bisoprolol. My heart rate goes so low when I’m not in AF, and the drug seems to lower my mood. It’s as though the heart rate creeps back to mid 40s then suddenly bounces free!

I think it’s the randomness that gets to me. I know I’m not the worst off, and it hasn’t hit till my late sixties, Possibly seeing one of my big sisters really not well over the last few years, and realising it was probably poorly controlled AF. Then the stress leading up to her dying from a massive stroke last year, and the death earlier this year of my other older sister from a brain tumour.

I should look at my brother - doing fine in his 80s - then try to keep calmer about the whole thing, Easier said than done.

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