I used to take 100mg Flecainide alongside 12.5mg of Metoprolol twice daily for many years - perhaps as many as 7 - 10 years. Last August my cardiologist looked at my ECG and said you need to stop taking Flecainide as it looks like that could be causing your problems - tiredness and breathless when exerting myself.
Last year was my year from hell as I had one medical problem after another. Had my gallbladder removed, flu, small skin cancers removed, also Covid and Pneumonia together at the end of September for which I was hospitalised. While there my medication, Metoprolol, was stopped and I was placed on 7.5mg of Bisoprolol in an effort to bring down the fast heart rate my illness had caused. Once completely better (took months) I gradually reduced the bisoprolol dose to 1.25mg.
Now over all those years of taking Flecainide it was necessary to mow my back lawn in 4 different stages, resting between each for about 30 minutes. Yesterday, while I'm taking just 1.25mg of Bisoprolol morning and night I cut my lawn in one go. I honestly can't remember the last time I did that, it may be not since my AF struck 18 years ago.
Why am I telling you this? Well, I don't want you to be stuck with the idea that Flecainide is your 'wonder' drug as I thought it was mine. Without it and just taking a low dose of Bisoprolol I have energy again!!!
Jean
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That’s such good news Jean, as I used to read about how you struggled for breath at the end of 2021 when I joined the forum. These heart drugs certainly affect us all in very different ways and some, like Fleconaide are very powerful.
I was good on a low dose of bisoprolol with no side effects, it was when they upped my dose to 10mg when I was in hospital that I thought(literally) that I was dying. im afraid I reduced it myself gradually and was much better. I did tell my cardio team and they weren't bothered.
That is great news. You have truly been through the mill. I have also been lacking in energy, especially in the couple of hours after taking Flecainide, Bisoprolol and blood pressure tablets in the morning. Sometimes my legs feel like lead and I have to really push thtough it, although as the day goes on it improves. I have been blaming the 1.25mg of Bisoprolol and wondering if I am just unfit. Now you have made me think!
Trouble is the last time I started to cut down the Flecainide gradually, the AF started to come back. But that was 5 years ago, so I might try again.
Another thing: only this week my EP surprised me by saying that he's not keen on people taking Flecainide after the age of 75. After that he prefers Sotalol. First time I've heard that! So I've only got just over 3 more years on it. I mentioned the fatigue etc and now I'm he's booked me for another stress echo to test for ischemia, because as we all know, you can't take Flecainide If you have that. So I shall bear in mind what you have experienced and talk to him about coming off Flecainide sooner.
I have to say when I was diagnosed, my Cardio put me on n Biso. and I mentioned one of my sisters was on Flecainide (AF is familial in my case) - he said nothing, but wrinkled his nose as if suddenly encountering a bad smell!!!
How lovely to hear that you have increased energy. I am one month into trying Magnesium &B6 tablets in the hope that they will help me to feel a bit brighter. Take care of yourself & don't overdo things. Best wishes.
Magnesium was suggested for me too as apparently the amount in the daily multivitamin and mineral etc tablets we take is insufficient even with the green veg we have! I have to ask the pharmacist first if it would be ok. And so interesting to find others are having problems with the flecainide too and not just me!
When my ep upped my daily flecainide from 50 to 100mg, 2x/day, I didn't feel well right away. Took an ekg on my treadmill with the Kardia and it said "Wide QRS". Sent it to my ep and he said drop back down to the lower dose.
Hopefully, if my ablation holds, I will be able to get off of it entirely, but right now Flecainide is all that stands between me and constant afib, so I have to put up with the side effects.
Flecainide can be a game changer, but it has to be monitored periodically by ekg. And don't be afraid to suggest a lower dose on a trial basis to your ep. I was down to 25mg, twice a day and it worked well, until it didn't. 50mg seems to be my sweet spot. 100 was way to much for me.
my husband was on 100 mg Flecanide 2x a day. But the afib became persistent after awhile and flecanide did not work anymore. After pulse field ablation in March he stopped flecanide immediately and it’s been great. Good luck for yr ablation
All the while I was on Flecainide I sang it's praises, thought it really helped. Not till you come off these things that you realise they weren't right and how much better you can feel without them.
The Cardiologist I saw was elderly, like a sweet old granddad. I think he must have been called out of retirement to help with the workload. It's him I have to thank and I'm so glad he could see by the ECG that Flecainide was causing my problem.
Jean, You have had a tough time for sure and I'm happy to hear you are feeling better and strong! I had my ablation in April and after my EP said to stop Flecainide, but continue with Elqiuis. However, she sent me home with some Flecainide after I questioned stopping right away when my heart was irritated from the ablation. She said it would be be fine to "take it for 6 weeks or so." The reason I did the ablation was to get off the meds but I feel like I should take it slowly stopping it? First, you've been on it for 4 months, then you have an ablation and stop medication just as the heart is healing. Not sure. I ask her at my first post ablation appointment.
Thank you. After my third ablation in 2016 I was told to stop Flecainide immediately but before I could go home next day my heart took off racing, was back on the Flec right away and been on it ever since. That is until last July/August when I was told to stop right away. After your ablation I'd come off it gradually if I were you.
So heartening to hear Jean after such a dreadful 2023! It must motivate you to try other things that had become hard to do without rest breaks. Changing beta blockers may also have helped. What is your HR on only 1.25 mg? Anyway keep hold of that Dr- he is worth his weight in gold 🙂.I had a superficial carcinoma taken off my face 5 weeks ago but am suffering from " spitting sutures" which is a pain in the butt. My son's wedding is on the 9th of June and I look like I have a festering zit on my smile line. Oh well.
Take care and I am so pleased there is such a positive start to 2023 for you - you deserve a break. But nothing keeps you down does it!?
Your reply made me smile, because I've just had a superficial carcinoma frozen on my neck. It's now scabbed over, but a friend told me it looks like you have a big brown mole on the back of your neck! I'm booked to have another removed off my leg, but that will need a skin graft from my thigh even though it's small. I have to stay in bed for 5 days afterwards. Always some torture looming isn't there.
I hope your spot has healed by the time of your sons wedding, it should have.
I asked the dermatologist to freeze mine off - it was only two tiny red dots and superficial. But in France you are not allowed to remove carcinomas by freezing. Hence this horrible red lump on my face. If anyone reading this has any tips ( surgeon not interested in seeing me) please feel free!Take care Jean x
They'll only freeze them off here if they haven't turned into a lump. The chemo creams make me feel ill. I think I read sometime ago that organic castor oil applied could cure them. I bought some but kept forgetting to use it. Have just go the bottle out now and put some on the back of my hands. It works as a good moisturiser too.
Pure cannabis oil is also said to heal skin cancers - Google it, or probably look on YouTube. I remember years ago seeing someone singing it's praises and making their own and showing you how to do it.
The red lump on my scar is " spitting stitches" i.e. absorbable stitches that didn't absorb and the skin is rejecting them so causing inflammation. Anyway thanks for your thoughtful tips🙂
Thanks for posting this Jean and prompting some informative replies. Hope 2023 continues to be good for you.
Flecainide (like most drugs !) is a bit of a mystery. I would dearly like to reduce it (on 200mgs/day) but feel I may still need it. Frustrating, as just this week I forgot to take my morning 100mgs and there was no repercussions.
In my early days after AF diagnosis my energy levels/exercise capability were definitely low but after taking it now for 10 years and at age 70 my energy levels are pretty good. I play basketball once a week with many much younger and am not appreciably slower.
I do have an annual ECG and show this to the GP and cardiologist and no red flags are raised, so I assume for now my best bet is to stick to the current situation, albeit constantly under review when new helpful reports come in on this forum.
I had reduced my Flecainide to 50mg morning and night a short while before being told to stop and was fine, but you sound as though you're doing well on your dose.
You must be over the moon with all this news. That is so inspiring and makes us look a bit harder at the drugs we take. All drugs have side effects, as you surely know, and must cause reactions, but we have to take them. I really hope you have a better quality of life. That’s what we strive and hope for. I take B vitamins especially vitamin B12. Some drugs interact with B12 l also take vitamin D and magnesium and these vitamins,with good diet, keep me well. Can’t take other vitamins because of Warfarin, but l don’t need too. All the best and here’s to a good summer in your garden. X
I take vitamin B complex alternate days with vitamin B12, vitamin C, D & K, magnesium glycinate and also taurine. I too am on Warfarin and have my own machine to check my INR. I eat healthy meals, but unfortunately can't resist sweet stuff in between.
Naughty, but have to admit l do go off the rails now and again and have a sweet binge, but l do try not to eat sugar, as it makes me tired, as well as put on weight. I wish you well with your ongoing health problems. You certainly have had your share of them this last year, poor ol you. Not very nice when there are continual health problems. 🥰
You're such an inspiration Jeanie! And I'm a hit jealous you got your lawn done yesterday- though we did have a lovely day away with friends and spent most of it outside. Apparently we did 10,000 steps! (Friend has Apple watch.) But I think it's so true about our energy levels- if we're patient and kind to ourselves- they do return. Maybe not as per pre AF or when we were younger (!) But we can still do things and enjoy life.
Am so glad you feel returned to health after that gruelling year.
good for you, great news. My cardiologist stopped my flecainide after 6 months due to flutter it caused. I just keep it as pill in pocket now. Take care 🦊x
absolutely fantastic news Jean - you must be buzzing! It’s so important to share the good news & the hope that comes with time & ever changing life, whilst living with AF. Im sorry it’s been such a traumatic mental & physical year for you but now you have a “win” and a great big grin as you completed your lawn in one go! Enjoy this much deserved change and here’s to more “wins” and bursts of reclaimed energy & life 👏🏻😊 x
I love looking at them newly mowed. Makes it look as though I have control over the garden, takes your eye off all the weeds and dead grape hyacinths that need digging out.
Great that you've got your energy back. Enjoy that mowed lawn! The weather has been so rainy here for a week it has been impossible to mow and the grass is growing like the clappers. I leave my grape hyacinths in but unless I get round to cutting off the seed heads they spread too much. They have naturalised into the lawn ( well grass really as there are too many weeds in it to give it the title of lawn! ) . But it's better than the grass weeds colonising the borders.
Yes, my lawn looks good from a distance but is full of weeds and moss. Every year I've been putting weed and feed on it and that usually causes bare patches where I've put too much. Not going to bother this year and will have a go at digging the weeds out with a trowel at some stage. It will need mowing again in a weeks time! I too have plants that have crept on to the lawn, forget-me-nots, grape hyacinths, primroses and montbretia. Last week I was pulling ivy off my neighbours fence and a huge spider ran out looking very aggressive as though it was saying, "What's going on here". I gave a muffled scream and will not be going anywhere near that area again. I'm afraid the fear of them is inbred in me, my mum hated them.
I don't know why but I have long pieces of grass growing seeds in the borders at the front of the house. Spent yesterday afternoon digging/pulling them out, never used to have them there. My neighbour has them too. My neighbour has wild garlic in her garden. but it doesn't concern her. There's lots of it growing wild everywhere around here and I will have to battle to keep it out of my garden.
Weeds are a losing battle. Our grass has thistles, dandelions , daisies, bugle ,speedwell and all sorts of other stuff . I have naturalised primroses and some have just seeded themselves. I put in some crocus last autumn. I find new weeds appearing in the borders that I have not seen before in the garden . I blame the birds! They certainly spread brambles about. Forget me nots are a menace. They look great in flower but I never pull them out quick enough to stop them reseeding all over the place. I have a poor variety too that has tiny very dull flowers - much harder to see and keep on top of.
Wow Jean - I’m so pleased for you ! You are quite right, we ( and the docs ) can get a bit blasé about our treatment. It must be worth, every so often, to examine our drug regime, in case our heart’s needs have changed. Enjoy your new found energy - summer’s coming !
But I was unable to take 1.25 Bisoprolol daily as it brought my heart rate down dangerously low! After three days the pharmacist and doc told me to stop taking it! We are all different! I had fatigue already and very few very short episodes of AF. We are all different.
Yes, what suits one certainly doesn't always suit another. I guess the heart can beat in so many strange and different rhythms. My last ECG taken a few weeks ago said: Undetermined rhythm. Otherwise normal ECG.
And I might have considered an ablation if I had confidence in the people doing it and if I would only need one and if I were younger!! After all at 79, I have had 75 years of healthy active life and can still get around with the help of my husband!
I can't tell you how wonderful it feels. It just made me wonder if others were in that same position thinking their Flec was helping and that how they felt was as good as it gets.
The Flecainide helped me for a good 7 or 8 years but suddenly everything changed and it made me very poorly. I was told to stop taking it and things did indeed improve again. I’m just on Apixaban and Bisoprolol now. Unfortunately I have to take 5mgs of Bisop twice a day just to keep resting HR between 80 and 90 (I know Bisop is primarily for rhythm but it does decrease my HR about 10 bpm). Unfortunately that dosage does wipe me out so I am still looking into alternatives such as mini maze.
So pleased for you. You have certainly been through the mill. I have just dropped my bisopropol down to 2.5 mg at night from 3.75 in the morning . I was hitting a wall every time I upped the anti and worried what it was doing to my heart. Now I feel great again most of the time and it hasn't made a noticeable difference to my Kardia readings, blood pressure etc. Am seeing the Cardiologist on Tuesday, if they don't cancel the appointment again. I have normally found them supportive of my medication tweaks so we'll see what they say.
I really hope your lower Bisoprolol dose works for you, as it did for me. You know I often wonder if sometimes our hearts can sort themselves out rate wise naturally if we allowed them to, but reducing meds gradually is the way to go. When in hospital they had wanted me on 10mg but I protested and they then agreed 7.5mg I guess it would have been left at that dose forever. I asked my GP if I could reduce that to 5mg and she said yes, then asked if I could reduce to 2.5 and did. Now have reduced to 1.25mg on my own, but that dose is twice daily.
Miracles last for eternity, so let's hope it is one! The last year or so seems to have been a bad one for quite a few people we know, too. What was it about 2022?
Fingers crossed for you. About that grass: if you haven't got one, think about a Bosch Rotak LI cordless mower: amazing things!
Just the thought of mowing the lawn at the moment makes me breathless now I think two or three times whether I need to go upstairs!
Like you I have been taking flecainide for years and this latest flare up snd hospitalisation and it seems I’ve developed flutter as well as fib, but no one has said to stop anything
Flecainide was causing my problem, that's the annoying thing and I hadn't seen any professional heart consultant for 7 years. There was I thinking the way I felt was the best I could be.
What do you take for your heart alongside your Flecainide?
Flecanide made me really unwell. I didn’t take it for long. I was continually tired and shaky and vomited at least once a day. I was told it can take a while to get used to a new drug, there are limits however and after six weeks and a stone lighter I just stopped taking it. Was told off by my cardiologist for refusing treatment but felt a whole heap better. Never regretted stopping it and would never take it again.
That sounds horrible the way you were expected to suffer taking Flec. It never made me feel ill, but I would feel weary after exerting myself. It's a bit early to say, but having mowed the lawn in one go has given me hope that things are getting better.
I would never take Digoxin again it put me in a daze, made me slow thinking and miserable.
Yes that could be me - one day! I used to do cross country running about 20 years ago (Hash House Harrier) we ran through rivers, mud, even an underground water tunnel once for about half a mile. Ah those were the days! I always wondered why I was always last, now I know - my AF! Was last in the cycling group too - this heart condition is so unfair. I sometimes wonder if I've had it all my life.
yeh fleconaide never agreed with me , actually most of the drugs did not agree , some worse than others, fortunately after a successful abalation I only needed 2 Bp;s and apixiban and hoping to reduce one of the Bp's...it just all takes time and only gets clearer looking back . sometimes ..
Hello Jean, I used to have paroxsysmal AF and in September it went to persistent AF. My EP told me that Flecainide wouldn’t be much use anymore so he stopped it. Like you I take 1 x5mg every day - Bisoprolol each morning plus a valsarten for BPand so far I feel great. At the same time time I had a pacemaker but that didn’t change the AF it was to stop my heart rate plunging. I do hope you continue to do well.
I'm full of hope that I do carry on feeling able to do more, but I have been thinking I'm better so many times before now and have been let down. I know I'm still in constant AF.
When I was diagnosed 35 years ago with AV re-entry tachycardia I was put on Flecainide as a first choice to stop the tachycardias. I had to come off it as it caused more arrhythmias than before and gave me tunnel vision which was quite disturbing to say the least!
After trying Amiodorone and Verapamil etc I ended up on an old drug Disopyramide which I take to this day along with everyone's hated beta blocker Bisoprolol now at 7.5mg recently down from 10mg. These last two have also managed touch wood, to keep my AF at bay and certainly my cardio is happy to keep me on these. It's really odd that these drugs affect people in so many different ways so one has to keep experimenting! Hope that you stay good in the future without the Flecainide
That is fantastic news. Long may your new found energy continue.
I have always refused to take flecainide, because it seems that it can cause more problems than it fixes. With my problems tolerating drugs, that wasn’t for me.
Jean, thank you so much for that - your post makes me glad I only use flecainide as a PiP (very effective I must say) but only two or three times a year. Hope this year is much better for you
What great news! Years ago I was put on flecainide but it made my arrhythmia far worse so the cardio took me off it immediately. Nowadays I’m on the dreaded amiodarone and feel really well most of the time. But in my advancing years I think it’s always a problem to know what is age-related and what really needs to be investigated.
Glad to hear you have a “new lease” as it were. I remember me being prescribed Metoprolol at the outset, and feeling exactly as you described. After 3 days I was desperate, living like that was not an option. I went to my GP to see what could be done. He looked at my ER visit notes, and exclaimed “this is not good, they put you on the wrong meds” …he changed it to Diltiazem and the relief was instant and so very welcome.
Always check, always ask, who knows how many just take what we are prescribed on good faith, and suffer for it.
Yes, we really have to be aware of what drugs we're on and their effect on our health. Trouble is as we grow older we don't know what's down to age or our hearts.
How fantastic Jean to have some energy again. Thank you for your postings. I always really appreciate them and learn a lot from them. As a newbie to AF I’m searching for more natural ways to help with episodes. I do take the drugs but my natural inclination is always to try to go down the non-drug route if at all possible.
I am so pleased that this has happened for you as you need a bit of good news after the year that you have just had.
I have been on Flecainide for more Than 30 years as you know and it is so difficult for me to want to change now.
I have now been AF free for over a year I am sure due to the many ablations I have had but it took a very long time.
I have a slow heart rate and now cannot take Bisoprolol so unfortunately I cannot go down that route unless I agree to a pacemaker which still fills me with dread so at the ripe old age of 76 I probably will have to carry on with the same regime unless I accept the pacemaker.
Trouble is that the slow heart rate that I now endure makes me breathless and makes physical exertion very difficult for me.
For the first time in 3 years I am seeing my EP in July I am supposed to have an ECG and Echo before that but am waiting for the appointment hopefully it will be done in time. I hope to have a good discussion with Dr Ullah when I see him.
We are all different but I wish you the very best for a continued new way of life.
I know you say you have been on Flecainide for a long time, but never give up hope of feeling better. It will be interesting to hear what your EP has to say. I hope he's not like mine and only interested in performing ablations. When 3 didn't help me, he said I was one of the people not helped by them and dropped me as a patient.
I've just had an ECG and echo too, echo was fine but have a slightly leaky mitral valve, have had that for ages. My last ECG a few weeks ago said Undetermined rhythm and Otherwise normal ECG. My GP once told me that my AF came from an unusual source. I wish I knew how to read ECG's, may try and teach myself via YouTube one day.
No mine is not one to say no more ablations. He took over when my original EP did give up on me and did say just that and that I should look forward to permanent AF.
My current EP not only gave me 4 more ablations but his work has pretty well made AF a bad dream.
Hi. I’m so glad you got sorted. I was on Flecainide for over 10 years and it was only when I started to question its long term use (and discovered that it can actually cause heart problems) that I asked about being taken off it. Not one health professional along the way had reviewed my medication. Basically, once you’ve been prescribed it, that seems to be it! When I saw the cardiologist he said you can come off it straight away. No question about it. I’m now having an ECG to check all’s ok.
Yes, wish I'd know earlier about the Flec causing problems. Trouble is I was just left to get on with meds for years without anyone checking. Thank goodness that elderly cardiologist knew that Flec was causing more problems than helping.
hi Sue Yes many of us may have experienced similar or opposite reactions by health care professionals. I agree, once you’re prescribed a drug that you can tolerate and that is actually controlling or alleviating your symptoms of say AF or maybe high cholesterol - then they’re reluctant to take you off them completely. Like many of us with PAF experienced over many years we might be prescribed anti arrhythmia medication such as Fecainide either as a PIP or regular daily dosage. But we all have different tolerances so the amount we need to control our PAF will vary. So how can we be sure to know the amount that’s right for our body in order to maximise the benefit of the drug that our body needs whilst also keeping side effects to a minimum ? You were very brave asking to be taken off flecainide completely. And your EP was very understanding to allow you. Did you wean yourself off them after 10 yrs or did you just stop completely ? Personally I would be happy to maybe reduce my dose from 100mg bd to 50 bd and see what happens but I’m guessing that may lead to more frequent or prolonged AF episodes coming back to bite me! So there’s my dilemma - should we really tinker with changing dose with the sole aim of trying to eradicate the negative side effects of these drugs? Harry
Hi Harry. He told me I could stop straight away. I was actually having palpitations on the Flecainide! None since I came off but I know it’s something that won’t go away so I’m just on blood thinners now.
I hope you get the opportunity to ask your heart specialist . You never know. Good luck 🤞
In that case, do you fancy coming round and doing our lawn? 😁.Pleased, after all your trials and tribulations, that something is going in a positive direction.
What a wonderful blessing for you!! 🙌 When I was diagnosed with Afib, they put me on flecainide. Let me tell you it was terrible! The doctor kept dropping the mg, when I told him to take me completely off. I would rather deal with the afib. During this time I read all about flecainide to find out not only of the side effects but that it can even make the condition worse.
Disclaimer: I am not saying that there are not maybe some it has helped.
I read the leaflet that came with Flec and imagined that I had all the symptoms, when I first started it, but they never made me feel dreadful. I used to sing it's praises. Mind you, to be fair, over the last few months I have recently added Taurine, Q10 and vitamin B complex to my many vitamins and mineral supplements.
Thanks for asking, actually late on Wednesday evening it was as if a switch had been flicked and after almost the whole day of feeling very light headed and dizzy it got much worse around 6.00 p.m. and I reclined the sofa right down and just lay there for about 15 minutes (beginning to think this was the end!) and then gradually sat up and after a few minutes I felt absolutely brilliant, I could have redecorated the house from top to bottom I felt that good, my heart was back in NSR and the rate had gone from around the 100 region to 63! Touch wood I'm still OK but I'm not going mad because I know it could just flip back without any warning, but hey, it's wonderful to feel so much better - and you must be feeling the same. Yipeee! I'll still have the AV node ablation as and when it's offered because I know this improvement can't be permanent and of course I'm on a hefty dose of Sotalol but it's given me back so much hope. We ought to go and paint the town red together - but which town!!!! xx
I am so pleased to hear how well you are feeling now. Yes, take it easy and let you heart gain strength beating in it's correct manner. I'm just off to do some weeding in my front garden, think I'd better put some make up on first as I don't want people to think I'm the new scarecrow.
It's always a job to know what to do for the best outcome isn't it. I hope you soon find a solution. A lot of people on this forum appear to be saying that Diltiazem had really helped them.
I usually read all your posts, guess I didn’t realize how bad 2022 was for you., Jean. Wishing you a wonderful 2023 moving forward.
I was and probably will still write a follow up to my pacemaker post. I had pacemaker in on Friday, Dr kept me in hospital to experiment what meds can help me and since I now have a pacemaker they can try to lower my heart rate.
indeed pacemaker not in due high heart rate but rather not drop low with the meds they are trying
I am now back on Flecanide! Along with Bioprolol, new BP med amlodipine and Xarelto. (Apparently the watchman isn’t enough???) I Took Flec from 2015-17 as pill in pocket, then after my after ablations till 2019 when they said it caused the long run on the ekg and I developed a flutter. 2020 was the 4th ablation and no meds and NSR. Till Jan 2023-
I’ve had four months of focal atrial tachycardia- tried Diltiazam and Atenlol. I Tried the sixth ablation and can still be healing so with anticipation (and acceptance that meds and their side effects)are back in my life)…….
I am Trying to move forward to enjoy the summer with my grandkids- I take care of them and drive them to their camps etc
What a wonderful post Jean. From all the responses you have had it’s obviously brought joy and hope to so many people and that in itself is a tonic.
I have been on Flecainide 50mg bd for around 18 years. No beta blocker and no change in dosage. Did try higher 100mg once when I went into Afib and I would have cheerfully died I felt that rough. Have had 2 ablations. Felt great after first one, cryo, but not too good after second one, RF. Both have failed though. According to EP theres nothing else he can do as far as ablations go. I hadn’t thought of Flecainide as being the catalyst for feeling yuk so often. Albeit only the lowest dose, I can’t stop taking it or use as pip as don’t want to risk Afib becoming more frequent. At moment it’s around every 4-5 weeks. I know a lot of people would love to go that long but it can be for 18-25 hours a time and it wipes me out. Last contact with EP was nearly a year ago and don’t have another appointment until next year.
Jean I am so pleased for you and hope it lasts for good. xxx
I take Solgar Megasorb Vitamin B-Complex (makes urine go very dark). Have taken it for just over a month, before that I just took vitamin B12 hoping it would give me more energy - it didn't. Until I've used up all the B12 I take the tablets alternate days.
Years ago when I was taking 2 x 100mg of Flec I asked my AF nurse if I could take more if I had an attack, she laughed and said no it could only be used that way if you didn't take it daily. Yet I've seen people on this forum say they are allowed to do that. There appears to be no hard and fast rule. x
My cardiologist has recently changed me to Dronedarone from 100mgx 2 flecainide and 1.25mg Bisoprolol. AF been kicking off and hadn’t had an episode since Oct 21! Bisoprolol causes me bradycardia 😳
Been on new pills 4 days and AFib kicked off last night😳 Luckily it went early hours which is unusual, but good. I did phone a pharmacist to see if they’d got any advice.
What REALLY hacks me off is, the consultant never gos through the fores and against, how to take it OR what to do if!!
No the pros, cons and general information about the pills we are given are never discussed. Some people I've talked to don't want to know that information and totally trust the doctor's judgement on what pills will help them. That will never be me!
My experiences with medical profession 😱 I will never trust complicity!
I have been diagnosed with Haemochromatosis, Compound version, taken me 2 years and clever actions to get GP to test. Genetic Celtic disease. I’m of Irish stock. People are ill and die but I can’t get treatments I need 😡
That's such good news, so happy for you. My flecainide was put back up 18 months ago to 100mg bd. Saw Cons Jan who said my echo from 15 months before was "more or less normal" and I was discharged. Some days I'm fine, others everything takes longer but think Im ok because in the past bisoprolol even 1.25 has flattened me and dropped my heart rate.Long may your improvement continue.
Sadly, medication is often prescribed but not necessarily tailored or monitored and reviewed, we’re just left on it. I was on bisoprosol for five years, but didn’t need it. These days I think the patient has to push for checking our meds are working properly, and are still appropriate.
Yes, there must be so many ways that our hearts can beat differently to those of others and we need to find out exactly what's best for our abnormal rhythm. I'm glad to hear you are doing so well with your pacemaker.
I’m more stable. Still occasional AF when I have an infection but I recover now really quickly. The older I get the more I want to use as few drugs as are absolutely necessary. X
I tried Flecainide for two weeks to get off sotalol which gave me so many side effect. It made me so weak and dizzy I hardly went out and did not dare to drive. Had to go back to sotalol until I had a successful ablation in 2009.
JRH Oxford. But I had private health insurance from work then so the EP, Dr Timothy Betts, did it himself. Which was reassuring and which I credit with the success.
Interesting discovery - I was on Flecainide for 12 years 2X 50mg with rescue dose of 100mg on an outbreak. Worked well for about 8 years, but, last 4 was in NSR most of the time but at times VERY breathless and tired most of the time in the end it just stopped working and indeed was causing outbreaks to continue. I was also getting real issues on conversion to NSR with long pauses.... it is a VERY powerful drug and indeed the only times that I have ended up in hospital has been caused by too much (for me ) Flecainide - I never took more than 250 mg in 24 hours but ended up last year in ICU with cardiogenic shock caused by Flecainide - like you I am now unsure of how much it helped and how much it added to the problem latterly - I do hope your good run continues.
Yes I am on Dronedarone it keeps me out of AFIB 3 days and then have a 1 day episode bout its far kinder on the heart than Flec - no conversion pauses - I had a cryoablation last week - I was really lucky no issues with wound or any of the other recovery issues so here’s hoping that it works BUT it may be that if it doesn’t I will forget chasing NSR and just try and get a decent heart rate as I sometimes fell better in AF than I do on the drugs event Dronedarone makes me a bit breathless..
My husband first had paroxysmal afib Jan 2021. It was controlled by flecanide 100 mg 2x a day and 2.5 mg concor. By August 2022 began to hv breakthroughs which was managed by taking extra flecanide when necessary . January 2023 it developed into persistent afib and flecanide did not work anymore as now my husband had atrial flutter and afib. After consulting 4 cardiologists we decided on pulse field ablation which was done on 20 Mar 2023. Our cardiologist told us he fixed the atrial flutter first then the afib mapping the areas he ablated. He is confident that the afib will not return but did say that if it occurred within the first 2 months after the ablation it would be necessary to fix it immediately.
It is almost 2 months and all is well. My husband is so relieved he is cured. We are so thankful. He stopped flecanide immediately but continues with 1.25 mg concor and his anticoagulant xarelto which he has to take for a year. Not every surgeon uses PFA as some are used to old technology. But PFA has great advantages over old technology so it should be used wherever possible.
That’s great news! I’ve heard good things about Bisoprolol. And you’re only taking 1.25 mg or 12.5 mg? Didn’t know that it came in that amount.
I’m still waiting to see a cardiologist and then set up my ablation date. I’m assuming that’s what he will do.
I wanted to be put on less Metoprolol Tartrate until then (taking 25 mg in am and 25 in pm with blood thinner).
Unfortunately, my doctor doesn’t want to do that due to high heart rate readings (bp running normal). But would like me to try Metoprolol ER instead once a day. I’ve heard that they’re really 2 different animals and one shouldn’t switch. Wondering what your thoughts would be about this? Have you heard anything to the contrary?
Metoprolol Tartrate always had a strong effect on me. Once, one night when in hospital with my heart racing, I was given 2 x 50mg tablets and next morning I got out of bed and immediately collapsed. Later my Cardiologist hurried to my bed, pushed a long stream of paper in front of me and said, "Look what your heart is doing". Well even if I'd had a chance to look at it I'd have been none the wiser. My AF nurse told me it could have killed me and said to only take 12.5mg and never more than 25mg, which I later did alongside my Flecainide. I've never tried Metoprolol ER.
I think I'm preferring Bisoprolol to Metoprolol too. I once accidentally took an extra 50 mg tablet of Metoprolol along with my usual 12.5 one and my goodness I felt dreadful.
jeanjeannie50 apologies for resurrecting a 2 month old thread, but I wonder if you can recall how long it took for the breathlessness to subside and you to have more energy? I've been struggling with loads of ectopics, PACS, PVCS, bigeminy etc which got worse when I increased the flecanide. My consultant said I could try a PIP approach and stick with bisoprolol. I came off it Wednesday and am feeling better, but still feeling breathless albeit better than last week!
I stopped the Flecainide around last August, but then in late September/October I had covid and pneumonia which laid me low for a few months. Earlier this year I reduced my dose of Bisoprolol and I'd say I've now felt so much better from early May onwards. I've also started taking Taurine 1 x 500mg, Co-enzyme Q10 1x 100mg and 1 x Solgar high potency vitamin B-Complex daily.
My heart went mad when I had covid and pneumonia, that's why I was put on 7.5 mg of Bisoprolol (instead of just taking 12.5mg of Metoprolol). I then reduced the dose to 5mg soon after being discharged from hospital, but just after the start of this year I reduced the dose even more, eventually getting down to just taking 1.5mg now. Yes my heart protested a little, but I stuck at it. Now I wonder whether to stop taking Bisoprolol altogether and just continue with my Warfarin. I feel alive again and was amazed that I could cut the grass this year in one go.
cheers, I am on day 3 of no flec and am feeling loads better but expecting a few bumps before I decide wether to stick with it!! And a consultant call is booked for sometime in the near future (I hope) to review.
Do you recall if your heart protested a little in August before you got Covid but after you stopped the flec?
Yes I think my heart did play up a bit, but nothing dreadful, I certainly felt better for not taking Flec. My cardiologist said it was causing problems and my lack of energy. I didn't realise how much I'd improved until mowing my lawns for the first time this year. As I said it's years since I've been able to do the back one in one go. I've never had ectopic beats.
interesting this, I am now 6 days without flec and feeling loads better. I was out of breath, light headed and dizzy when doing things like putting on shoes!
My resting heart rate has dropped to what I'd expect and I was going into atrial tachycardia even when doing light exercise, that seems to have stopped as well! I had some very short AF episodes last week but nothing since!
Have you not had any AF episodes since you stopped jeanjeannie50
I'm in constant AF now but at a low rate which goes from 60-90bpm, have been that way for almost 4 years. I've also noticed since stopping Flec (was late last year) that recently I've been able to walk fast again. Yippee!To be honest for the last 3 months I've also added Solgar's high potency vitamin B-Complex , Solgar's Taurine x 500mg and Fitness Pharma's Co enzyme Q10 x 100mg to my list of vitamins.
I'm telling myself not to keep taking so many health tablets, but as I'm feeling energised again I'd be afraid to stop any of them now.
So updating here as it may help others that come across this. I'm now 20 days since I stopped flecainide. I'm feeling so much better. The breathlessness, dizzy spells have all gone, as have the PACs/PVCs/Bigeminy and atrial tachycardia as soon as I even did any easy exercise.
My home collected stats all seem back where I'd expect and I'm back to running and cycling without really struggling.
I think it would also be a good idea to put how well you are doing without Flecainide on the forum as a post of your own. Other people on the drug may not realise that their symptoms may be caused by it.
Thanks Jean. I was wondering about trying a different recommended brand from a reputable company.
I have had these before but have to admit I was a bit ad hoc in taking them. They are a good company and price in case you wanted to try them. Very little fillers too.
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The last year or so seems to have been a bad one for quite a few people we know, too. What was it about 2022? 
Switching from 100mg Flecainide twice daily, to Pill in the Pocket. Has anyone done this?
Has anyone had problems with Flecainide not working?
