Life after Flecainide

[Koladog]

I have had to stop Flecainide after many years because it started giving me other arrhythmias & am now on Digoxin Bisoprolol Apixiban & Simvastatin so far since starting Digoxin I have had AF most nights sometimes all night & sometimes n separate episodes. AFsometimes continues on into the day I self revert into sinus at some time It starts quite strongly but settles into a gentle experience

I see the cardio next week & referrral to an EP for posssible Pace & Ablate has been suggested

Even though I feel ok when in sinus rhythm I am finding AF every night wearing Is there anyone who has experienced anything like this I am an almost 80 year old female who on Flecainide was fairly fit walking 4 miles a day regularly flying to USA to visit daughter- making the most of everyday

Thank you for reading my ramble

[CDreamer]

Hi - sorry you have had this experience but yes, I have had many nights in Af, last night was one such recently after many years having thought I resolved the nocturnal AF.

Pacemaker implant in preparation for Pace & Ablate helped me enormously and gave me almost 5 years free of AF. I stopped Flecainide in 2014, it had stopped working for me years before that but I was taking after ablation to give me the best chance of sustaining NSR. It is a drug well known to cause other arrythmias and in my case that happened pretty quickly so not my favourite drug!

If the nocturnal AF bothers you that much and is affecting your quality of life then I would think about pacemaker/AV node ablation but do be aware that although it will help your symptoms such as breathlessness and fatigue you will still feel the palpitations. I have to say the thing that worked best overall for me was distraction so I listened to Audiobooks, the most boring book possible always puts me to sleep - no thriller though! If you are distracted you won’t feel the palpitations.

Hope that helps.

[Koladog in reply to CDreamer]

Thank you for your helpful reply. I was a nurse for all my working life & am a firm believer that distraction is one of the best pain meds so it should work for AF too especially in the day

[mjames1]

Is there any reason why you can't have an afib ablation rather than Pace and Ablate? Pace and ablate will not get rid of your afib, it will just regulate your heart rate. It is usually reserved when other interventions such as ablation either don't work or are contraindicated.

Jim

[Hylda2]

You could be writing my story. The nights I sat up in the lounge. The Flecainide stopped working and nothing else came close, so decided on pace and Ablate for my 79th birthday present.

Life is now good

[Koladog in reply to Hylda2]

That is so reassuring as I do feel apprehensive about my av node being ablated but AF is there sometimes twice a day & you are expecting it all the time - no quality of life.

[Hylda2 in reply to Koladog]

I agree. I can now plan ahead knowing that I’ll be fine

[Roscamicu]

I have almost daily episodes despite all the medicines. I thought of other triggers I may have taken or done and tried to avoid yet I have episodes and had syncopes. For days while waiting for my GP appointment I went off all meds except the anticoagulant. My episodes then lessened and milder. I am confused about medicines,.maybe a pacemaker is the right move.

[Koladog]

obviously I am still on meds Bisoprolol & Digoxin - after stable years with Flecainide am finding daily AF hard. However most of AF comes at night - if it continues into day & I haven’t reverted to sinus rhythm I go for a brisk walk & wow I revert. However I feel exhausted & demotivated. Have cardio appointment this week to see how I’ve coped without Flecainide so hope a new regime will be sorted.

[Vonnegut]

Gosh, I’m a 79 year old female too and must tell you that on the rare occasions I wake with an AF episode, I take a flecainide pill and the episode never lasts longer than a couple of hours. Of course, we are all different but as we are both female and 79 it might be interesting and helpful to compare experiences.

[Vonnegut]

Good luck finding something that really works for you!

[Koladog]

my AF life while taking Flecainide was so stable &’it was easy to live a full active life with maybe an AF episode once a year. Now I am having episodes daily - quite a shock

[downtherabbithole in reply to Koladog]

I am sorry for your troubles, while things were going so well for a long period of time.

I took Flecainide for a long period of time with only paroxysmal AF. Still, in time I got more AF episodes. I read up about the down sides of Flecainide on healthline and decided to quit Flecainide. To be on the safe side I combined this with an even healthier life style, diet as well as physical activity and a smart watch to record AF episodes and blood pressure.Everyone is different and I hesitate to advise anyone really. There are concerns with Flecainide, but it can reduce AF as well as in fact increase AF episodes! Very confusing.

What I am sure of is that a Mediterranean diet, lots of fibre, only using polyunsaturated fat, vegetables fruits, nuts, fatty fish, green tea, blue berries and few meat and dairy products ( I use diluted almond milk for calcium) and very little to none of salt and added sugar made me lose weight without being on a diet and is perhaps the very best preventive measure. Reducing stress in your life and never overdoing things is also very good..

After this period, I had the best ECG I'd ever had the cardiologist remarked.

I hope things get better for you.

Down the rabbithole

[downtherabbithole in reply to Koladog]

I forgot to mention that taking a NOAC (apixaban is excellent) is important in preventing strokes that may arise from AF episodes, but you probably know this. I hated taking bisoprolol. Slows you down quite a bit. I quit after a few months. But it depends and you have to weigh these considerations in your own situation carefully.

[Koladog]

I don’t have a problem with Bisoprolol & I am on 10mg daily now plus digoxin 0.250

[ColbyLH]

when you all say you were on flecainide for years before having a problem, I wonder how many years? I have been on 50mg x2 for about 8 years and so far no afib…Did you try increasing the dose or increasing the dose and adding one of thr other drugs.? Frankly, because of occasional tingling in hands, dizziness/light-headed-ness, I have thought about titrations my dose down to see if I could get off of it! My original issue was 24-25 thousand PVCs per day…On low dose flecainide it went to less than 50 PVCs per day…I wonder whether this drug leads to AF or it it just postpones the inevitable?? My EC says to just stop it but I am afraid to do either! Thoughts??

[Koladog in reply to ColbyLH]

I was on Flecainide 100mg bd for at least 10 years & it kept my AF very stable. Flecainide is only prescribed for people with no underlying heart problems ith AF but it is known to cause other arrhythmias & this is what has happened to me

[meshellesue]

Hello - I'm sorry to hear about your experience. How long were you on flecainide? What dose? How often? I also have night time AFIB, on occasion. I will let me heart covert on its own during the night. Most of the time it works. Sometimes it does not convert and then the next night I take Flecainide. I am taking Flecainide about once per week. I also feel tired at times and feel like my heart is beating me up inside. I really appreciate reading about everyone's experiences because I can really relate and know I'm not alone in this. So, I do the pill-in-the-pocket with Flecainide and diazepam. Only take when necessary. I just rest and try to take it easy on the days when I have AFIB over 24 hours. I can keep my heart rhythm under 100 that way.