Can anyone help me?

[WhitehartJude]

I got a diagnosis of paroxysmal atrial fibrillation on 14/8/22 and was put on Bisoprolol 2.5 mg and Apixabin. I’ve been back and forth to A&E and had my Bisoprolol increased to 5mg twice a day. Recently had my echo and cardiology appt and been put on 50mg flecainide twice a day with a further 50mg as a pill in the pocket. This was 11 days ago and I’ve already had 3 episodes of AF. The PIP has reduced the episodes to about 3 hours but I’m just so confused. My cardiologist said that flecainide was a brilliant drug which should stop the episodes? I’ve come away for the weekend and ended up confined to my hotel room with another attack! Can anyone please tell me things will get better as I’m beginning to think my old life has gone!

[CDreamer]

Hi - AF is a pesky condition but a very common one and treatments tend not to be that affective for everyone. There are 3 classifications of AF - Paroxysmal- comes and goes, Persistent - lasts for more than 7 days and Permanent - when you and your doctors decide to no longer treat. Interestingly, most people in permanent AF say it is not nearly as troublesome as when it comes and goes and many people live good lives in permanent AF and many, many people do not even know they are in AF - which is not a good thing as the first line treatment is always stroke risk assessment. I hope you have been assessed - are you taking anticoagulants?

If you are having AF breakthrough episodes then Flec’s not working for you. Could be you need a higher dose or another approach. Are you taking on an empty stomach - as it needs to be taken?

There are normally a battery of underlying causes such as Thyroid dysfunction which can be tested for by your GP. Often when underlying conditions are well controlled then AF ceases.

If you are taking 50mg x2 daily then ask your doctor could you take 100mg extra dose when you get a breakthrough episode - just be aware that 300mg is the maximum you can take in 24hour period. As it is a very toxic drug and needs to be taken exactly as prescribed, Are you having regular blood checks?

If Flecainide doesn’t stop your episodes then there is little room to manoeuvre medication wise. Have you ever been offered a Cardioversion to see if you would be a candidate for ablation? Not everyone responds to medication so has ablation been talked about?

How symptomatic are you? Is your heart rate controlled?

If you have Lone AF then you may find the forum dedicated to AF more responsive.

Lots of info on the AFA website and they are running a virtual online Patient Day

heartrhythmalliance.org/afa...

Info sheets: heartrhythmalliance.org/afa...

There is a lot you can do to mediate AF with Lifestyle changes and please don’t stop enjoying your life, AF should not confine you to your room unless you are very symptomatic, in which case you need a more effective treatment.

Having been through the gamut of treatments, 17 years after diagnosis I now live virtually AF free, only getting episodes when I suffer virus or infections.

Most people don’t go to A&E with AF as it’s estimated that something like over 1 million people in the UK suffer AF so unless you feel very ill with it, have pain or uncontrolled heart rate it is not considered life threatening - can feel like it sometimes though.

Best wishes

[WhitehartJude in reply to CDreamer]

Hi, thank you for taking the time to reply. Yes, I’ve been given Apixaban blood thinners when I was put on Bisoprolol. I will contact my GP re the flecainide dose. The cardiologist referred me for ablation but there is a 12-18 month waiting list here. I’ve found that during an episode I can keep it quite low if I rest, if I’m active I go into fast AF which my cardiologist says I should go to A&E with? This weekend I was in London to attend a football match and went into AF 3 hours before kickoff so agreed to stay back at the hotel.

[CDreamer in reply to WhitehartJude]

What a shame you missed the match. If your heart rate goes above 120 the usual advice is to go to A&E but my experience was so bad in various A&E I ended up feeling much safer at home but I was able to send ECG traces directly to my EP, check my BP & O2 Sats. You know your own body best so do what feels ‘em right for you.

Is your cardiologist an electrical specialist.

[WhitehartJude in reply to CDreamer]

I have no idea! I literally saw him for 10 minutes. I happened to be in hospital with fast AF on the day of my cardiology appointment (phone appt). An echo was arranged before I saw him and he just told me he was introducing flecainide. I have no further appointments to come with cardiology and assume I’ll need to see my GP.

[devonian186 in reply to WhitehartJude]

Has anything changed in your life over the last year, more stress, new job, more exposure to traffic particulates, more or less exercise and in particular diet? Our body is highly responsive to external factors as well as changes inside the body.

Increasingly diet MAY appear to play a role. Are you getting a good range of nutrients and vitamins from a well balanced diet?

[BeeBee79]

I was put on Flecanide twice and both times. It made my AF a million times worse. Speak to your doctor as it just may not agree with you. Similarly, I know others on it who have no problem and it does what it’s supposed to

[beechesblue]

I suffered with Atrial Flutter which was treated by ablation however shortly after started to experience similar problems which was confirmed as AF, consultant did say that this was usual. After a bad weekend was put on a similar medication to yourself however they did drop Bisoprolol to alternative days which did help for some reason.

Then had ablation for PVI and that has resolved, hope you can be treated soon

[shanfar2021]

ALLAHbless you health Ameen

[RG72]

You have been given some great advice here, so I just want to answer one of your chief concerns. Yes - it does get better, but it takes time and some effort/persistence. You might need to shift around medicine and change doses etc. You should also revolutionize your diet (if you haven’t already) to heart healthy options. Working on reducing stress and increasing sleep will help out. Taking time to identify your own individual triggers and trying to address them. Even with all of these, it will still take time and you may have setbacks, but over time you can recover quality of life again.