That will teach me to be so smug...

[Slim2018]

So no AF since September 2019. Now only taking Flecainide once a day at 9pm designed to cover the at risk period from midnight. Did a cracking 4.5 mile row on my Waterrower in 30 minutes yesterday morning and then a 3 mile cross country hike with my Labrador in the afternoon. Home made pizza but all I did differently was have two large glasses of red with dinner as opposed to one. Sitting watching the TV about 11 pm and just “felt” something wasn’t right. Pulse all over the place, I just knew. Texted my consultant who said take a second Flecainide and if no joy by 4.00 am take a third. I was in a right state, angry, frustrated and fearful. Woke up two or three times and still in AF. However had a dream my consultant was doing a cardioversion via my iPad. Woke up and just approaching 4.00 am and back in SR. Was it the medication or was it the dream 😂

AF really is the “gift” that just keeps on giving, one can never relax and think its gone away. My younger daughter, the doctor, continues to reassure me that issues only really arise when you choose to ignore the symptoms or don’t do what you are supposed to.

[Hilly22]

Love it! Which came first you wonder, the dream or the NSR? My guess is the NSR. I’d like to think it was the dream though.

Isn’t it a lovely feeling to be back to normal? I’ve never had to use a kardia-type machine, I just know 😊

Long may you remain out of AF 🤞

[TamlaMotown]

Oh ‘this old heart of mine’ 🤦‍♀️

[Slim2018 in reply to TamlaMotown]

Tell me it’s just a rumour! Actually I was due to see the Isley Brothers in June 2020 but its got knocked back to June of this year so fingers crossed...anyway lots of people have far worse things to worry about Dr. Nicholls keeps telling me. Bet she doesn’t tell her patients in Papworth to “put their big boy pants on and get on with it” 😂

[TamlaMotown in reply to Slim2018]

Oh wow I’m very envious. If only it had been just a rumour though but no such luck this time Slim.Maybe you should ask Dr Nicholls to ‘put yourself in my place’ 🤷‍♀️

[Slim2018 in reply to TamlaMotown]

Bournemouth in June, and the day before or after George Benson at the same venue so fingers crossed this year they will go ahead...

[Finvola]

Sorry to read this Slim but glad you have NSR again.

I misread the part where you said 'AF is a gift . . .'

I read it as 'AF is a git . . .'

😂

[Slim2018 in reply to Finvola]

But interestingly just reading about a paper suggesting a link between AF and Hiatal Hernia....mmmmm makes a lot of sense to me. AF is a Git and something else which rhymes with Git!

[Alessa69 in reply to Slim2018]

Yes, certainly for me , I realise that there’s a definite link AF & Hiatial Hernia& Vagal nerve . It was through the lovely people here that I got all

the helpful info , some from Dr Sanjay Gupta , after I was diagnosed in 2018. .

I was lucky, had a successful ablation last August , it took a lot more recovery than I’d expected , but Ive only had one blip , about 2 months after , when heart still healing...... I had made the mistake of overdoing stuff in general , & more than one glass of a nice wine when cooking beloved a special dinner, eating later tha

n usual . I’m being ultra cautious now , but thankfully am able to do 45 mins exercise at a stable heart rate , for which I’m very grateful .

[Bazman29]

Hi can I kindly check, are you only taking Flecainide in the evening and without any beta blocker. I am starting to think my Flecainide and Bisoprolol is keeping my HR too low and I’m aching all over.

[Slim2018 in reply to Bazman29]

I was taking only Flecainide 100 mg morning and night, nothing else. But as the three episodes I had all occurred when I was asleep my consultant decided to try one 100 mg every evening at 9.00 pm so that the effect after 3 to 4 hours would defeat the break through. Worked for 15 months but then last night happened about 11.00 pm. He hasn’t suggested today going back to am and pm dosages.

[Hidden in reply to Bazman29]

I have had four episodes since Boxing Day. First since 6/3/2020. My hr keeps dropping to 40s so my arrhythmia nurse has said stop 1.25 of Nebivolol I was on and see how it goes. Stopped it Thursday, 2 episodes since then.

[Singwell in reply to Hidden]

You are heroic. Just saying 🤗

[Buffafly]

What I want to know is who is this consultant you can text at 11pm?! I’m assuming a private one?

[Slim2018 in reply to Buffafly]

Yes but a friend as well which is a massive help

[Physalis]

The rules say "Gyms closed and outdoor sports restricted. Exercise limited to with one other person or your household or support bubble, once a day. Childrens playgrounds remain open"

I know it sounds silly but you could be fined.

[Slim2018 in reply to Physalis]

Ah but I am rowing in my study where I have my Waterrower. Bought it six years ago and the best bit of exercise kit I have owned

[Physalis in reply to Slim2018]

Oh, that's alright then. But did you really need to go on a three mile hike as well? It's not surprising you had an attack of AFib.

It's interesting that you are still taking Flecanide when you haven't had an attack of AFib for a year and a half. Do you think that, if you stopped taking it, you would have more attacks? Personally, I would have stopped taking it to see what happened.

And this attack only lasted five hours. Mine lasted about 20 hours two or three times a week. Apart from the panic, what were your symptoms like?

I often wonder this, people don't elaborate.

[Slim2018 in reply to Physalis]

Douglas the Labrador can’t row so he has to go for a walk on the heath. My consultant is of the view that keeping it damped down with daily Flecainide is the answer.

[Physalis in reply to Slim2018]

Douglas is lucky to have you! You are lucky to have the heath to walk in. It looks very nice.

But when you have an AFib attack, what does it feel like?

I thought that Flecainide was used as a 'pill in the pocket'. A lot of people on this forum take it. It was never offered to me which is just as well.

[Singwell in reply to Physalis]

I always know right away too. I start to feel 'odd' sometimes can feel palpitations, occasionally can hear my heart banging in my chest, mostly it's a sense of something fluttering inside and feeling disturbed. I'll take my pulse and get a crazy rhythm then check with my Kardiamobile. For me it's unmistakable. One moment it's normal, the next it's not. BTW I take Flecainide twice a day (lowest dose) as do others on this forum. I also take as pill in the pocket if my AF kicks off.

[Coeurdelion in reply to Singwell]

Sounds like me. That not easy to explain "thing" in the chest as a precursor.I have not been prescribed a PIP. I just sit it out or more accurately lie it out as it usually comes whilst sleeping. Do PIP's really work?

[Buffafly in reply to Physalis]

It seems that many people think their symptoms are typical so don’t give details. Some people panic just because they know their heart is beating irregularly even without much in the way of symptoms, whereas others manage with quite extreme symptoms such as breathlessness, nausea, faintness, headache, diarrhoea even. One member used to regularly have cardio versions even though his HR was below 150 while some just feel a bit off with a HR of 180. It is quite interesting as long as it isn’t happening to you 🙄

[Singwell in reply to Physalis]

I've responded to this lower down too Physalis. I think symptoms vary enormously - some people will get pain and tingling, (I don't get pain until afterwards when my vagus sometimes plays up), some feel light headed, some find their breathing pattern changes, you can feel nauseous, dizzy, etc etc. I've described lower down how it feels for me. Why don't you start a thread on this? It'd be great to read others' experiences and get advice.

[Karendeena in reply to Physalis]

Hiya, my episodes give me awful symptoms, I get anxious, grumpy and uncomfortable often lightheaded. My heart goes very fast and jumps all over the place! Like you, my episodes last almost (if not more) that 24 hours so when it starts I know I can't get out of it for a while and that makes me feel worse. Swapped from flecainide when I went to see a top EP in November. Now on sotalol twice per day plus apixzban as blood thinner. Was working well until this weekend, then sure enough off I went again, went back into NSR early hours of this morning. Getting paranoid and waiting for it to happen again. Finding it difficult to cope with.

[secondtry]

I would say it was the dream (as the same happened to me actually in hospital when the doctor said 'we will have to shock you' without even getting the crash cart). I would reduce your exercise & alcohol though, when I first read your post I thought this guy must be joking!

[Slim2018 in reply to secondtry]

Interesting suggestion of reducing alcohol and exercise. I think there are subjective triggers to AF. I drink about one or two small beers a week and perhaps the same number of small glasses of wine. Indeed my consultant is actually of the view that good quality red wine, an occasional glass, preferably organic, is good for you. Exercise seems good too, albeit not ultra marathons and stuff like that, if you read The Haywire Heart which my consultant recommended. Dr. Gupta talked about a study from one of the Nordic countries a couple of years ago that actually showed that HiT training reduced the incidence of AF. Caffeine doesn’t seem to bother me one jot. But a chocolate will send my system into what feels pre-AF in a moment so who knows.

[secondtry in reply to Slim2018]

What I have found is that it is the contrast of exercise/stress to relaxation; may explain why you get AF in the night at your most relaxed. The way I dealt with it is to stop strenuous exercise and just do x2 every day brisk walks with Nordic poles for 1 mile each. I also take a very belt & braces approach on all fronts (even though a glass of red wine or coffee early in the day can be good), primarily because I believe with Lone PAF the issues arises from a cocktail of contributory issues rarely just one, which culminates in reaching the AF threshold.

[Ianc2]

I try to be good because I know that I should...for me a tiny glass of red wine , with a meal, I can get away with. A nice, lovely, large glug of 14% merlot I can't get away with and it takes about a fortnight to get back to normal if I try it.

About 20 years ago I used to go camping in the woods near Royan on the Atlantic coast. A white wine was about 8% and a red about 11%.

On balance I would rather have the exercise and feel the wind in my face.

[Auriculaire in reply to Ianc2]

Maybe the hotter summers here are somehow making wine stronger. Certainly most reds seem to be over 12% these days.

[Slim2018 in reply to Ianc2]

Royan, is that near where the amazing Lighthouse of the Pharaohs is?

[Ianc2 in reply to Slim2018]

On the Cote Sauvage near Bordeaux?

[tunybgur]

Hi Slim,

Great to see you're getting lots of exercise, I used to run a lot but arthritis in my hip put paid to that, so I also crack on with the rowing machine and bike rides when the weather permits. Unfortunately I also found out that vigorous exercise is an AF trigger for me, so sadly I have to moderate it and keep my heart rate down.

The half life of Flecainide is 12-27 hrs, that's why we normally have to take it twice a day to keep the levels in the therapeutic range, I tried once a day but was soon having frequent bouts of AF. The sad truth is as we get older we become more prone to arrhythmias so I am resigned to having to increase my Flec in the years ahead, at least until some cure is available, but I'm just thankful that Flec is around as it gave me my life back!

I started on 2x50 four years ago and I am now on 1x100 and 1x50 which is working ok.

Good luck

[Cortis]

Hi, That's an interesting story, I imagine one glass of wine will become part of a future plan! Could I ask if Flecanide is the only tablet you take.I take 2x50mg of the same, but by cardiologist said it must only be taken with an additional beta blocker. With thanks.

[Slim2018 in reply to Cortis]

No beta blocker just Flecainide. Initially it was PIP for nearly a year then I got three episodes in three weeks hence initially twice a day 100 mg and since last October once a day about an hour before bed time. Still then have it as PIP too as per Saturday night. No other medication at all. No beta blockers since the cardioversion in October 2018. May be because apart from the electrical problem my plumbing is fine, and I had a full stress test echocardiogram in October 2019 which showed my plumbing gave me less than 1% of a heart attack in the following two years!

[Cortis in reply to Slim2018]

Thank you for replying so quickly. Your circumstances seem similar to mine. I had a year using Flecanide as a PIP then 3 AF episodes of irregular AF that insists that you lie down! After which the Cardiologist told me to take 2x 50 mg daily with the addition of 1.25 of Nebivolol. along with appixaban. I experiment with all but the anticoagulant to find the least amount that I need to take. Thank you!

[Karendeena]

I feel for you! I haven't been diagnosed long but know the feeling already. My heart takes of at z stupid rate of over 160bpm and as you describe 'all over the place'. It was so bad I gave up the wine in the hope that this would resolve it! I took flecainide for 2 months and was hopeful, then it kicked off again. Meds changed to sotalol and I thought I had cracked it again and then the 'curve ball' was thrown and off I went again. My problem is that the symptoms are awful and made me feel really grumpy, anxious and uncomfortable. Had an episode that started on Saturday night about 7.00pm, no idea why as I wasn't doing anything out of the ordinary and it stayed with me until the early hours of Monday morning, when miraculously I returned to NSR. My EP says 'It's like a jack in the box the more it comes out the more it will want to! I am going for the ablation as he has quoted me an 80% success rate first time as I am still paroxysmal, otherwise I look forward to this getting worse. I hope yours is just a one off but as you say, the condition is so unpredictable