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Atrial Fibrillation Support

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Rich3 profile image
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Hi I was diagnosed with AF in Jan and referred to Dr Modi at Chester, have been having attacks since 2010 which I have always "sat out" as they go naturally after 12 hrs or so, but a bad reaction to Flecainide put me in hospital last November, now waiting for results of CT scan done at Liverpool.

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Rich3
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wendicarro profile image
wendicarro

Hello! welcome to a great site, you'll find loads of support on here and you should check out the AF website for loads of helpful info.

Welcome to the mad world of AF!!

Wendi

mincde profile image
mincde

What was your reaction to flecainide?

Hawkie147 profile image
Hawkie147 in reply tomincde

Hi Mincd

I took flecainide for 12 years for my paroxysmal AF. It did keep my AF in check, getting episodes sometimes daily, weekly and sometimes only every few months but I always reverted to Sinus rhythm naturally.

Last July unfortunately my PAF became persistent so my consultant took me off flecainide to be replaced by bisoprolol.

Altho' the persistent AF and I suspect the bisoprolol makes me feel very tired I can't believe how much better I feel without the flecainide.

I hadn't realised how for all those years the flecainide had made me feel generally unwell.

If I had realised all those years ago that it was the flecainide making me feel so 'lousy' all the time I would never have taken it.

My advice to anyone avoid it if you can

Jean

Gracey23 profile image
Gracey23 in reply toHawkie147

Jean, I have been on Flecanaide for years and recently my EP increased dosage to 150 twice daily. I've been feeling awful, so tired, weak, pins and needles in feet and breathlessness. I'm about to start Pradaxa so that I can take Flecanaide as PIP until ablation scheduled for September. Could you please tell me your symptoms when on Flecanaide ? Gracey 

mincde profile image
mincde in reply toHawkie147

Jean, thanks for your comments about flecainide.  I have occasional AF usually preceded by lots of Pacs and 2 docs think it could help.  It seems some people swear by it while others swear at it.  Perhaps a low dose is the answer.

Rich3 profile image
Rich3 in reply tomincde

Was prescribed as "pill in pocket" so I got an attack and took it, nothing happened so took another one still nothing, then in the evening my heart rate shot up to 230 (normally hovers around an irregular 100 during an attack) so I dialed 999 and got ambulance to Chester where they gave me more Flecainide (intravenously) which again did nothing so they did a cardioversion which worked, stayed in hospital overnight and my blood pressure dropped dangerously low but I was on a drip so it corrected quickly, was frightening more than anything as I didn't understand what was happening.

If I'd done nothing, taken nothing it may well have self corrected as usual, but I would not have been seen or referred to Dr Modi so every cloud.

I'm told this can happen with Fecainide and it was probably a reaction as it came on so suddenly and was so different in character to the normal attacks.

Lorna058 profile image
Lorna058

I am under Dr Causer at Chester, the team there have been fantastic, you can trust them to do their best for you. Good luck.

Rich3 profile image
Rich3 in reply toLorna058

Nice to know, thanks for that!

jennydog profile image
jennydog

Are you being seen by an Electrophysiologist at LHCH, Broadgreen, Liverpool? If not, why not?

I consider myself very lucky to have a Cardiologist who admitted that he knew little about the heart's electricts and referred me quickly to an EP. I guess it helped that I was in full-blown AF when he first saw me.

I have a friend who has just been diagnosed with AF by her doctor. Her 2 siblings have it too. She has been messed around for over 12 months. It took them 9 months to start warfarin and she still hasn't seen a specialist yet her AF symptoms are far worse than mine ever were.

Hawkie147 profile image
Hawkie147

Hi Gracey,

I took flecainide for twelve years up to last September when my PAF became persistent. The first thing my cardiologist did was take me off flecainide, 

After a week or so after being off flecainide I realised that I was feeling more like my 'old self'. 

During the 12 years on flecainide I used to have dizzy spells, my eyes always seemed as if they had trouble focusing. I used to feel unsafe going out alone in case I had a 'funny turn'. I used to walk near a wall or fence incase I felt faint which happened often.

I used to blame it on all the medication I was on, one of which was Flecainide. It's only since stopping the flecainide that I realise the real culprit was that.

I must admit tho' that it has kept me alive for the las 12 years' but if I could go back I would have asked the doctor for something else.

The dosage I was on was 100mg twice a day.

No ablation on the.cards for me, I am probably too old at 77.

Good health

jean

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