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AF Association
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Flecainide problem

Hi all. My lone fast PAF has happened approx 14 times over last year, and an episode can last between 3 and 15 hours, always at night lying down. Have been on on 1.25 Bisoporol twice daily. Started Flec 300mg as PIP early Jan after first trying in hospital last Oct. Seemed to be a true wonder drug to me, back in NSR in less than an hour. then 2 weeks later took it again, same great result, but then I went into Fast AF again the next day, then 2 days later, a total of 7 Fast AF episodes almost daily for 9 days, it had never happened this often before, and unwisely I was taking the Flec each time, it worked well, sometimes in 15 mins! but then on the 7th time taking Flec in 9 days things went very badly, while waiting for it to work I started to feel a really heavy crushing feeling all over, became very weak, couldn't stand up, body tingling all over, terrible aches in back of neck, sudden sweating, my vision went completely sparkly (pretty but scary!) my nose and ears went stone cold, no idea what was happening, thought I might be have a stroke or worse... called ambulance, came in 6 mins! (and in Cornwall too!), carried out of the house, blue lighted all the way to hospital, self corrected on arrival... Spent next 3 days in the Cardio ward. I knew it was the Flec, seems I went into some kind of Ventricle Tachycardia or Abberant AF? and that had caused extreme low blood pressure. Cardiologist agreed it was the Flecainide so stopped that, had 2 episodes a day for next 2 days, self correcting each time 3 6 hrs, ..... So now back at home, just on Bisoporol again, upped to 3.75mg daily, AF free now for 3 weeks. So hopefully back to the previous normal. It was obviously a mistake for me to be taking the Flec every day, but as I knew some are on it daily assumed it would be OK. Generally I don't feel like I get much monitoring or support or info from NHS, and am just left to work things out myself. But maybe this is just how it is with AF?

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The very good reason why flecianide is usually accompanied by a beta blocker such as bisoprolol.

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I'm on regular Flecainide, no experience as PIP.

Flecainide has to be started under supervision in hospital because of the unwanted pro-arrhythmic effects, but you don't say how long they tested it for, or at what dose. The half life of Flecainide is up to 70 hours, so the concentration in the blood won't reach a maximum until you've been taking it regularly for 10-12 days. Your experiment at home would have been long enough to approach this, but what about the hospital test?

300mg/day is also the maximum safe dose.

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Hi, At hospital in Oct I just had the 1 dose of 300mg to check I didn't react badly. I guess they only teste 1 dose as it was to be a PIP. My 7 doses in 9 days definitely caused an unwanted pro-arrhythmic effect! It also without doubt increased the frequency of my AF episodes to daily, or to when the dose wore off?... took it again, back in AF 18 hours later... and repeat... now no Flecainide, no AF (for now, I assume it will back but at its previous frequency?) I was on Bisoporal 1.25 daily throughout this period.

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And to change the subject slightly, does anyone understand why I only get AF episodes while lying down, Never standing up, I get some indication it will happen soon, and this can be standing up, but it never comes on standing up, sometimes if it suddenly starts I can stop it by jumping up quickly, but it will start again when I lye down, and then stay for its duration? The cardiologist seemed completely uninterested in all this?

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AF is closely linked to activity of the autonomic nervous system, so episodes of AF are often triggered when there is a big change in activity of the ANS. Such times are when the body adjusts to lying down in preparation for sleep, after a big meal, and during/after exercise.

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OK, thanks, I understand the words but not exactly what they mean :) ... but will do more research, some people describe this as a symptom of vagal AF? Is that what you are describing? Cardiologist I spoke to in hospital wasn't interested.

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Fairly typical I think, cardiologists are plumbers and concentrate on fixing the boiler, not very interested in the general electrical system 😀

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Does this fit for you? Have a look at the comments too.

richardbogle.com/blog/vagal...

Also see Dr Gupta’s video linked in an earlier post today.

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Thanks Oyster, It does fit, esp Dr Gupta's video, it is pretty amazing how exactly he describes my AF and also myself. Apart from the one fact that my AF is always fast and they say Vagal AF is 'usually' not fast. Not sure if this is a deal breaker? I am on beta blockers 3.75 bisop, and they both say Beta blockers are no help with Vagal AF and can possibly make it worse... but perhaps due to my Fast AF this is different for me? There is quite a bit of mystery in this AF business! Ughh.

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Have you chosen your EP? Waiting times for ablation on the NHS can be up to 12 months. It may take 4 months to see the EP. The question of alternative rhythm control medication may come up before then.

A one off private consultation with an EP (around £250) for a treatment plan is an option and usually available within a couple of weeks. Further tests if required can be done on the NHS.

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I think I am currently being referred to Shilling at Barts. But that was decided while in hospital here in Cornwall. During my recent bad reaction to Flecainide PIP and hospital stay, an ablation seemed like a great option. But now as am hopefully back to my previous frequency of fast AF episodes am having second thoughts. No idea what to do really. Worried about the risks and failure rate of ablation. And when I get a decent gap, currently 3 weeks clear, I always secretly hope the AF has gone for good. Biggest gap so far is 3 months. But hopefully having a proper discussion with a good EP will begin to help with all that, as well as making some lifestyle and mental changes. As apart from no caffeine no alcohol I have been carrying on as usual. The ambulance episode was quite shocking and as they say a ‘wake up call’. Thought about seeing Haywood in Plymouth privately?

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Any experienced EP will be familiar with your particular issues. I wonder how many recommendations here are based on “bedside manner” and outcome of the procedure. I suspect only a minority of EPs adopt a holistic approach to AF management.

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Hi Lewis,

I have vagal AF like you and found studies, when I first started AF, which showed AF can worsen with beta blockers. I presented these to the AF re-organisation of pathways for Kent, Surrey and Sussex, clinical group, and they were accepted by the cardiologist leading the work. Richard Bogle, who Oyster referred you to, was the first medical director for the support group I co-founded in Epsom and he is the Education Director at Epsom and St Helier now- and a great cardiologist.=-so do get expert advice about your drugs as there are alternatives to beta blockers. If you have a problem with convincing your doctor - DM me and I'll try and look up the studies- prefer not to put details in public as we mustn't give advice re meds

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I have PAF too (I get it roughly once a month). I am about to be switched from Sotalol to Flecainide and digoxin following ectopics. Like yours, my PAF occurs when seated or lying down-a couple of times when asleep. I usually get something like 120 bpm but it went up to 150 bpm on one occasion. My EP agreed it sounded vagal. Flecainide is supposed to be better for dealing with this sort of PAF, but Inam rather apprehensive about switching in the light of what you have said. I’m not sure what can be done about the vagal problem . Perhaps things to improve the vagal tone (see below), smallish meals etc? I also imagine on occasions that it will go for good or that I control the episodes, but this is probably wishful thinking. The EPs are not interested in the details of the PAF possibly because the treatments are not fine-tuned enough to address different kinds of PAF, and the condition will likely progress. Anyway, you could try these things:

blog.bulletproof.com/vagus-...

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please see my reply above- digoxin is also contraindicated with vagal AF ( as well as beta blockers`so get expert advice

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Thanks for the good link. Re improving vagal tone, my policy is to improve all the common recommendations on lifestyle. I work on this being enough when taken together; my analogy is AF is a glass filling up with all our bad habits, reducing all of them a bit (or one of them a lot like training by extreme athletes) stops it overflowing. I share your concern about Flecainide but the fact is that I have had no side effects for 5 years (and no AF episodes) with no other drugs. If you do decide to go onto it allow a couple of months for the body to get used to it and consider taking MG & CoQ10 with a Naturopath's advise and running it past the medics as well - the latter is a formality as you can expect little comment.

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No AF for 5 years sounds wonderful! I think my experience of Flecainide is unusual and went a bit wrong partially due to lack of knowledge and clinical advice and being left to my own devices. Have now made an private appointment with Dr Haywood in Plymouth who seems to be a highly regarded EP... onwards...

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Good luck persistence pays off.

I am in no position really to comment on EPs apart from my own experience. My cardiologist said it was too early to consult one but I went ahead anyway and he offered me an ablation but the 'I'm overworked' way it was delivered and the 70% success rate (success I believe is only AF free for a year and no guarantee drugs could be stopped) persuaded me not to have one. My cardio's parting shot was 'if you go to a carpet salesman you will buy a carpet' and as the cardio had had AF himself, I took his advice. As I said just my experience and of course a lot of EPs do great stuff, a member of my family and a friend have had totally successful ablations. Food for thought.

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The ANS is the part of the nervous system that controls the autonomous body functions (heart rate, temperature, blood pressure, hormones, bowels etc etc). It's divided into sympathetic & parasympathetic, the former is associated with 'activity', and the latter with inactivity. The vagus is part of the ANS. Most AF originates at the pulmonary veins, which is where the ANS enters the heart.

When you get into bed there is a lot of ANS activity readjusting your blood pressure as your position changes, and generally winding your body down ready for a night's sleep.

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Good info thanks. I usually do an hour of meditation, light exercise and prayer before bed to adjust that ANS activity slowly - seems to work.

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I am similar to yourself. My EP advised me to always take 1.25mg of bisopropol with the 300mg of Flecanide when using as a PIP.

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Wow what a lousy experience with Flecainide. Also sounds like you have vagally mediated AF.

I think the mistake was taking so much Flec as a PIP rollercoaster for the heart. I also much preferred the idea of PIP (lower dose though) rather than taking it daily but my cardiologist said daily is safer and put me on initially 100mgs daily which wasn't enough, I have been stable now for 5 years on 200mgs.

You don't say what your normal pulse and BP is but in my case because it was lowish I was not put on any other drugs as a result and to date that has worked well as QOL very good.

Sorry, I am not sure this story helps you any but maybe somebody else. What will help the Vagus Nerve imo is to work on your lifestyle.

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Hi, my normal pulse rate was 62, been on 2.5mg bisoporol daily since last summer which brought it down to 52, after hospital flecainide episode was put on 5mg daily and it went into 40's. Cardiologist wasn't bothered by that, but I was and I reduced bisop to 3.75mg daily and am now back in the 50's....

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I can't take Flecainide daily, or for that fact most BP pills, because my already low heart rate will drop to 38-40. My cardiologist is very worried about that. On no meds, my rate is about 52 and the doctor is OK with that. He did a treadmill to see how high it will go, and it goes up as expected with exertion and comes down properly. I was originally put on Flecainide during a multi day hospital stay to make sure I did not have a bad reaction. It is my PIP and when AF strikes 200 mg has always converted me within 3 hours. I have instructions to go to the ER if it goes beyond 3 hours. It has worked for me every single time since 2005. I kept a food journal and have identified the foods that will trigger an episode, either because they are too high in carbs or produce so much gas. My wife wants to know when I will grow up and stick to the diet so I don't have to deal with AF at all and can stop carrying around the Flecainide. But, as a stress eater I have difficulty keeping to it.

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and you've not had the problem I had of Flecainide causing more frequent episodes of AF? Perhaps the 300mg PIP was too much for me and a lower dose may have been better? I was very excited about the Flecainide correcting my AF in minutes rather than the hours and hours of waiting, but can't see me ever trying it again. I wonder if anyone else has experienced more episodes due to Flec?

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See my rep!y xx

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Which arrhythmia was it causing exactly?

Flecainide causes atrial flutter, which is slower than AF, so it can pass through the AV node and cause dangerous ventricular tachycardia. (Which is why it has to be used with a rate control drug such as Diltiazem or a betablocker.)

If this is what's happening, one option is to have a flutter ablation, and then go on the Flecainide for the fibrillation. The advantage is two fold, firstly, flutter is more amenable to ablation than drugs whilst fibrillation more amenable to drugs than ablation. Secondly, a flutter ablation takes about 30 mins instead of 4-6 hours, because you don't need to pierce the atrial septum.

Flecainide was causing me atrial flutter at first, but I was able to go back on it without any problem after I had a flutter ablation.

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Great the medics have to understand we are part of the team and they have to work with us and not unilaterally.

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Lewis1234,

Flecainide taken on a daily basis kept my AFib (lone) in control for 10 years but then stopped working and I needed an ablation.

NB A and E are only responsipble for bringing you back into normal ryhthm not for a long term cure.

Your GP should (and if he doesn't, you should insist he does) refer you to a cardiologist. My cardiologist at the very excellent West Suffolk Hospital carried out tests, arranged meetings with a surgeon at Papworth and some 14 months later I was successfully operated on. My symptoms were nowhere near as severe as yours.

So my strong advice to you is to get your GP to refer you to a cardiologist.

A secondary piece of advice would be to have an ECG taken when you are in Afib and present this to your cardiologist on your first meeting. This will help him. You can get an NHS walk in centre or your local practice to do an ECG the next time you go into Afib and ask for a copy.

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This echoes my story almost exactly apart from your Big Event! I was put on 200 mg flecanaide 18 months ago,after being on bisoprolol alone for some time. For reasons in not sure if,they also took me off bisoprolol at the same time,which put me into A flutter as well as PAF!

Long story short...I continued to have low level at most days,settled by flec. Rare flutter events,plus longer AF now and then. One day I forgot my am dose. Didn't realise till 9 pm and had no symptoms. Took evening dose..but did same next day .Eventually ,working with my GP,I have come off Flec except as PIP which I have only used once.

My EP seems to rely on ablation as preferred solution. I did say on one of our rare clinic appointment s that I felt flecanaide was too much for me,and was put straight on list,where I remain at present. However it if goes on like this...good..shall review that option.

I also had to chase up a routine echocardiogram,as I have a bicuspid aortic valve that has 12 month checks. Last time was a locum consultant,who it appears did not do the right paperwork. It was only when I was sorting out my medical folder so we had room in the desk drawer(!) That I realised...

As you say,self monitoring and being very pro active in our own care and decisions seems the way to go. I do worry about those who are less confident or unsure..not that I am super knowledgeable of course.

I am aggressively sorting out lifestyle and nutrition as well.

I hope the new regime suits you better,must have bee pretty terrifying to say the least!

Let us know how you get on!😀

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Hi, please see:

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Hi all, thanks so much for all the info. I hope no-one is put off Flecainide by my experience, as it does seem to be a great help to many people. Especially lower doses taken daily, I should have realised that the new frequent daily episodes was a bad sign and stopped the flecainide earlier. I was just so happy it could correct me in less than an hour. Not sure if this link will work but it shows the ECG print outs taken on my lap after self correcting in the ambulance. The top ECG is after self correcting, the lower ECG is during the episode and is pretty darn bonkers! dropbox.com/s/aropb25fsez5j...

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Do you get any problems when your AF self corrects. I have blacked out a few times and been on the verge a couple of times. Like you support is minimal but I take as I mustn't be deemed to be too poorly

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Do you mean you black-out when it self corrects or during an episode? No I haven't had that. I do feel weaker and slightly light headed while in fast AF, mine can go up to 190bpm, but when it slows a bit I am able to do things, and have been out for walks/shopping etc. I may have to pause for a breather and definitely do go very slowly and don't run up any stairs, gradually after a few hours the rate comes down and eventually I can tell then that I might revert to NSR soon, it also helps if I try and nod off for a bit, I often then wake up in NSR. I am always fine afterwards, and very relieved indeed.

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I occasionally get that strange moment when you back to NSR. Re the above I could no way tolerate Flecanaide at 300mg in one go - my EP recommends a much more gradual approach as it takes 6 hours for Flecanaide to hit max strength in your system ...

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It is the moment it self corrects.I can tell its coming I get a duzzy feeling followed by a rush sensation through the head and down I go. Was wondering if this was normal, and how common it was, or just me. Hospital doctor thinks I should consider giving up driving.

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Wow, that sounds really annoying!! Not heard of that before... Do you get Fast Paroxymal AF? if so how long does an average episode last for?

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Usually fast PAF lasting up to 2 days. Last one was 7 hrs.

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I think sometimes you get a pause or v slow rate when you convert back into SR. May be worth asking to have an ambulatory heart monitor for a week or two so cardiologist can see what's happening. If it doesn't happen when you have the monitor on it can be repeated or you could ask about having an implanted loop recorder. A friend of mine gets it too. Feels as though heart beat pauses. Check the DVLA guidance but generally if you get warning of a blackout they are OK as you would pull over.

Amanda

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Unfortunately there is no warning, it all happens literally in 2 seconds. I think that's why they want me to have it checked with my cardiologist . I would not be able to pull over and it happens whenever I have PAF episode. Thanks .

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Just a short Thank you for your input today.

Regards Norythym

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What did increase my AF episodes was the 20 years spent taking Digoxen and Quinidine daily. Then I went on Verapamil, which was my PIP for a few years, but it was never as effective as Flecainide. My episodes are few and far between now if I stick to the diet. I know why I had my episode the other day - doing taxes and popping candies all day while dealing with the stress. I will go several months without another episode and when it does happen will be able to pinpoint the trigger. All I take is 10mg of Xarelto daily, which will end in June, Mg, fish oil and Occuvite.

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Ive been on Flec 2 years, had some rough side effects but being mostly af free (when it comes just lasts minutes) for me its worth it. There is an alternative Im sure, worth asking. Are you under a consultant if so ring his secretary for some help. Best wishes. Its an up and down journey we're on

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thanks, I don't really have a consultant as such, only ever seen one once privately last year, who prescribed the Flec PIP and who has since retired, otherwise just the ones at A&E, and for a couple minutes only... there is a waiting list for the waiting list down here in Cornwall

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So glad things have settled down for you.

Like you Flec did nt work too well for me.

Now feel totally abandoned by GP and hospital.

Dread each Af attack which comes exactly every 15 days and can last up to 3 days at a time.

Feel very down and no idea where to take my worries to next.

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Sorry you are feeling down, how long have you been getting AF for? were you taking Flec as a PIP? or daily? In what way didn't it work? It seems the only way to get any interest is to see a Cardio or EP privately. My episodes can last between 3 and 15 hours, normally around 6hrs, 3 days must be very disruptive for you. Does it self-correct?

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Thanks for getting back to me.

I took flec as pip - but my GP decided it was doing more harm than good!

Have had Af for 3 years now. And yes when it hangs around for 3 days it absolutely drains me. Not so much the fast rate, but when it is slowing and trying to find normal sinus rhythm. Which for me is about 65 bpm thanks to Bisoprolol.

Thankfully it has always gone back to normal range in its own, but am beginning to dread each new episode!

But hey try and keep positive and smiling, have wonderful support from husband and 3 adult children. 😊

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