Flecainide: Hi. I've been told by my... - British Heart Fou...

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Flecainide

Blackwolf_7619 profile image
10 Replies

Hi. I've been told by my cardiologist I have yo take Flecainide. Please can I ask if anyone else has had experience with this? I'm quite afraid to take it, especially given its bad press. I'm so afraid thst it won't ease or cease my ventricular bigeminy.

Thanks.

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Blackwolf_7619
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Crystal614 profile image
Crystal614

Hi, I have been taking Flecainide for nearly 2 years it was prescribed after an unsuccessful attempt at ablation for SVT. The only problem I had when I first started taking it was was with my kidney function but after a few months it sorted itself out, I have CKD anyway. Other than that I have had no other problems or side effects. I have a pacemaker so the dose is capped at 200mg and the medication is controlling the SVT well.

BeeBee79 profile image
BeeBee79

I had a bad experience on Flecanide which I won’t go into detail on as I don’t want to scare you more and it’s never been 100% proven but my cardiologist suspects the same.

But I do know for MANY people including my own family members, they swear by it with no side effects and gives them a much better symptom control.

BShep1 profile image
BShep1

I've been on Flecanaide for a while now for heart flutter without any issues. My cardiologist told me there were no long term side effects. In fact recently I had an episide of heart flutter and was admitted to A&E and by increasing my dosage my heart went back to a normal beat. Previous to this I've had to be put under general anaesthetic and underwent cardioversion.

Sniggetts profile image
Sniggetts

I had long many episodes of significantly rapid AF and had several trips to A&E and ended up in coronary care. Cardiologist started me on flecanide in January this year after a few tests to check my coronary arteries were ok. It’s brilliant, best drug ever for me in combination with diltiazem, not looked back ever since.

I too was absolutely terrified due to the bad press, however it has turned my life around and been AF free . I take it exactly 12 hours apart… it’s great.

All the very best 😊

C2sam profile image
C2sam

Hi! I have ventricular bigeminy as well and was given flecainide as a back up to use on bad days. I've literally just taken 50mg right and so far it's regulating it more though I find it's not 100% effective. However no other side effects. So maybe trick is to start with small dosage? I also tried bisoprolol and verapmil and side effects were wild (heart rate dropped like crazy, almost passed out multiple times), so I feel like flecainide was safer for me than those 🤷‍♀️

Blackwolf_7619 profile image
Blackwolf_7619 in reply to C2sam

Does your VT come in episodes? I have it constantly for weeks at a time. My last one lasted for 8 weeks. I'm nervous because the next episode is due! I literally have it constantly none stop for all these weeks. The one before that lasted 10 weeks and I had a 3 month break before the last one. I feel like topping myself because to have this terrible feeling for weeks and weeks leaves zero quality of life.

I know people who have VT, bit they say they don't have it constantly for weeks but on and off. I literally have no off until it stops. Each episode I worry and feel like it will never end. Maybe one time it will just keep going...

C2sam profile image
C2sam in reply to Blackwolf_7619

Oh man I'm sorry to hear that - does it last all day? It's a miserable time for sure. I've so far had it non stop since about July this year when it all started spiralling - most weeks I only get short episodes a few times a day (each episode maybe lasts 30 mins, and almost always from 5pm onwards), some weeks I get it bad lasting all day and night (which is when I resort to the flecainide). I was told to try and avoid using flecainide too much hence its just a pill in the pocket solution for now.

Heading in to see an electrophyiologist next week though. Have you seen one yet?

Blackwolf_7619 profile image
Blackwolf_7619 in reply to C2sam

Yes I have it all day every day for weeks at a time. I wish i only had it for 30 mins. I could just about live with that! Every single time my ventricle contracts its an ectopic during these episodes. It started last October out of the blue, although a year or so before that I did have the same ectopics lasting a couple of hours.

I only found out what it was during my last episode because no one believed me. So, I bought a kardia machine and caught everything with that.

I haven't seen an electrophysiological because my cardiologist said I'm fine and just take flecainide.

I had an echo in july and this was in the middle of my episodes and I kid you not, not one ectopic happened in that examination! It started again when I was waiting for the train home. I wasn't able to catch it on ecg at the hospital either. My heart is a troll! 😒

C2sam profile image
C2sam in reply to Blackwolf_7619

Urghh yes I know what you mean the heart always magically behaves as soon as they hook you up to anything!

Let me know if the flecainide works for you if you try it. The first time I took it I felt it work within an hour, but it didn't last all that long for me..

AFGran profile image
AFGran

Haven’t has any problems with Flecanide. It has reduced episodes of A Fib

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