First, a quick update. I had some tests done and my cardio ordered a 30 day event monitor which showed I had two events of Afib that lasted less that ten seconds each.
I was first put on Propafenone, but after three days had to come off of it because of bad side effects. I was then placed on flecainide, and given the lowest dose but after one week the side effects were coming on. I called my EP and he said could I try for another week. I took it for another two weeks and had to jump off it. It has been four days now off of the flecainide and starting to feel much better. Vision and breathing much better. I have been reading all the posts for this drug and it appears that for a lot of folks it works very well. Question, given the long half life will I be free of all the effects in 4 or 5 days or is it the type that side effects can linger for a while? The next step is for me to wear a halter monitor for two days and EP said we would go from there.
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The half life of flecainide is 12 to 20 hours so I'd think a couple of days would see it completely out of your system. What a shame that it doesn't suit you but your EP will sort it out hopefully. Take care
I don't understand why you're on flecainide or any other antiarrhythmic at all. Less than 20 seconds' worth of fibrillation in a month hardly seems worth treating. Is your doc pill-happy, like mine? My advice, for what it's worth, is to drop the drugs entirely and learn everything you can about AF and the drugs that are used to treat it. Flecainide, especially, is a "dirty" drug. It also suppresses the brain's immune system - something doctors generally don't know - and that may be part of the reason you had those side effects. They came on hard - dizziness (more like moving unstably in a fog), fatigue, paresthesia, shortness of breath, and bleary eyes - as soon as I started on flec after my ablation last May. I quit taking it after a month and I still have them, and I will for the rest of my life.
I don't want to scare you but I feel it's important to approach this stuff with as much knowledge as possible and a common-sense attitude. My view is that people should use doctors as advisors and consultants and make all their own medical decisions.
My GP said he wouldn't give flecanide to a dog (unfortunate phrasing as I like animals) but I was fine on it when I took it - interested to know more about this drug though.
Flecanide was bad news. Every evening I had a gurgling feeling in my chest and felt lousy. In some respects the side effects were worse than the PAF at the time. 'Pill in Pocket' maybe but on a daily basis, not so good.
Thanks Kodaska, for the reply. I agree with you that Flecainide is a dirty drug from what I have read. I forgot to mention that I had the dizzy head and walked around in a fog. Also I'm with you and think I would like a wait and see if the Afib gets any worst before starting more pills or a procedure. Again thanks.
I'd like to correct myself. Whether flecainide has had a role in my symptoms is anyone's guess. What I do know is that I have chronic Lyme disease. I was infected in 2006 and it lay dormant until my ablation in May 2015. Something in that procedure woke up the bacteria and they've been active ever since.
Hi there - I saw this post and wanted to ask about your symptoms for Lyme disease. I'm also taking Flecainide but was bitten by a tick a year ago and I'm struggling with recognising whether the pills are not agreeing with me or I may have Lyme. Any help appreciated
The first question is, how big was the tick? If it was a regular dog tick, you don't have Lyme disease from it. Only black-legged (deer) ticks transmit it (in the US - there are other vectors in Europe). If the tick was the size of a poppy seed or pinhead, you could be at risk. Have you been tested? Not that it means much, since the tests are less than 50% accurate, but it's a place to start.
I suggest you do a search on Lyme symptoms and then compare them with your experience. Symptoms are highly variable. Mine include dizziness, fatigue, bleary eyes, shortness of breath, and numbness/tingling in the extremities. And they arise in the morning and settle down some time later in the day. That is not the typical Lyme disease profile.
So check against a symptom chart. If you think you have Lyme, I suggest three things:
- Contact ILADS to see if there's a Lyme-literate doctor (LLMD) in your area (I don't know where you're located but ILADS mght be active in the UK).
- Get Stephen Buhner's book "Healing Lyme." He's an herbalist who's been treating Lyme for 35 years. I'm on his protocol and have seem some improvement. He also describes the infection in great detail - much more info than anyone else I've read.
- Prepare to be your own doctor. The standard of awareness about Lyme is denial and disbelief and you face an uphill battle toward relief.
You might also want to read Pamela Weintraub's book "Cure Unknown." She's a science journalist who describes the history of the Lyme Wars. It's a gripping - and true - tale of intrigue and personal drama.
That drug didn't work for me and the side effects were a zombie like feeling. I hated it and had to get off. Fortunately, my ablation so far has been successful, so I don't need it. It was awful for me.
Question to ask yourself - are you better with Flecainide - i.e.:- does it stop frequent, symptomatic, fast AF? OR would you be better without it? i.e.:- you have infrequent, non-symptomatic or not very frequent episodes which you can live with?
If you are in persistent AF or have frequent episodes which last hours or days, the AF will make you feel like that anyway.
Flecainide worked for me and I didn't have the side effects described so the episodes were worse for me, unfortunately as Kodaska says, as with any drug, there can be longer term side effects. I had 2-3 episodes a week, without Flecainide they would last 24hrs or so, Flecainide helped me to function until I had an ablation.
We are all different and we all react very differently to drugs so no-one can tell you what is best for you, you have to educate yourself and then, with your doctor, make an informed decision as to what treatment to pursue.
Where are you going with your flecainide Vicki? Is it a long term treatment? I also took 150mgs x 2 of flecainide for a while, and I now regret doing so. I got on fine with it and it did wonders for my AF, but it did things to my feet and may have fiddled with my sense of taste. With hindsight I think I would have done better to use it as a pill in the pocket rather than to be on a high dose all the time. I regret letting so much time pass before being referred to my EP.
I also have been on high dose of Flecanaide. I'm interested in knowing what the symptoms were that you felt in your feet. I have pins and needles and have considered it's a side effect of the drug. I've decided to try as pill in pocket until my ablation because this drug all though it works scares me. Gracey
My feet just feel numb - a bit as if I have elasticated socks on that are a size too small. The toes went first, when I'd been taking 100mgs of flecainide twice a day, and when the dose was increased to 150mgs the numbness swiftly spread to the heels and ankles. It's well over 18 months since I stopped taking flecainide but they are no better.
Flecainide worked well for me - and I still take it if I really need to - but I think the less of it you take, the better.
This is very helpful, thank you. Obviously , Flecanaide has something to do with our issues. I will post to the forum when I'm off the drug and let you know if side effects discontinue, Gracey
Vicki, I am a 75 year old male and up to six months ago was still climbing upon roofs, going under houses to fix plumbing although not as fast as I used to. After I started the Flecainide the bottom fell out, no energy and when I would sweep the floor have to stop and rest between rooms. After stopping the Flec I can now go on my daily walks ((2) about 10 blocks each, without getting tired or breathless when I get back. In my opinion it drains the life out of a person. I know we all are different but for some of us the benefits of this drug does not outweigh the risks.
NOTHING TO DO WITH THE DRUG?!! Double baloney. I'd get to a different doctor ASAP. Even at 50 mg 2xdaily, I'm sleepy and foggy all day, and my EP doctor encouraged second ablation as preferable to staying on flec long-term to suppress AF. I second the opinion the a few seconds of afib a month are not worth the downside of drugs. I lived with those for years before the longer episodes required attention, and even then bypassed the drugs (which weren't working anyway) for the ablation that eliminated the need.
Someone put up a YouTube video recently of Prof Schilling advising at a medical seminar of the treatment protocols for AF - if I remember correctly antiarrythmics were advised if someone was symptomatic to improve QOL - period.
If the only way you know you are in AF is from holter reading, the question I would be asking the EP, if I were you, would be 'what is your reasoning for giving me a toxic compound with serious side effects when I am better without rather than with drugs?'
Then I would seek out another EP.
Completely agree with Kodaska and as we have both suffered some consequences from Flecainide, we know what we are talking about.
Hi CDreamer What's QOL Please? I desperately want to come off Flecanide. I was put on it over 2yrs ago and it has effected my life in a terrible way. Fatigue to the point of depression!!! My EP prescribed it saying it had no side effects!! I was getting A Fib every few weeks at the time. It has stopped the A Fib for sure but my quality of life is not good. Having limited energy and breathlessness also effects my work and relationships. If anyone out there can give me some tips or advice about coming off it please let me know. I'm at the end of my tether. I'm so grateful for the posts on here that have helped me recognise what is happening to me. Also when you come off Flecanide do the side effects clear up?
Many Thanks
Biddy
PS A beautiful Documentary about the heart for all to watch Of Hearts and Minds
I look forward to watching that! i came off flecainide on my own, i reduced every 2 weeks and feel awful for 3 or 4 days after, but so glad to have a reduction of side effects. I had 4 hypnosis sessions and am in a new brilliant mindful, heartful yoga class and do pilates once a week. I attribute my courage to go with what felt the right thing to do to a combination of things including the above. Have reduced bisoprolol in the same way and am down to 1.25mg, the lowest I can go really, and did not have one last night, but a bit wary i must admit! Can't live like that though, was a total mess on the meds, truly horrible. Much as i hate to admit it, i was even suicidal at one point (in hindsight at time of month - total hell each one, hormones def made it all worse). Happy to share more if needed, in a wee bit of a rush just now!
Thank you Stargazer. Yes I'd like to know exactly how you came off the Flecenide. When you say every 2 weeks what do you mean? I'm taking 150mgs a day. I was put on 200mgs 100mgs twice daily but I soon realised that there were side effects and brought the dose down to 150. 50mgs am and 100mgs pm.I've tired to eliminate the morning one but I get so nervous I soon go back on it again. Would it be better to go down to 50mgs at night I wonder? When you say you felt terrible for a few days what do you mean? How long were you on Flecinide?
Hi stargazer, I've been put on a 72 hour monitor and was told not to take my medication at all during the recording. I'm into 48 hours now and feel dead and anxious
How long did you get it take you to get back to normality? Thanks in advance
i wish i could give you a short optimistic answer to that! but i really can't, we are all different and i guess how long it takes to get a drug out of your system will be dependent on lots of factors. i was still on other drugs when i stopped flecainide so didn't feel normal (taking normal to be free of side effects of the medications) until i was off them all. but i didn't feel more anxious etc - and also had only been on flecainide for weeks. well when i say i didn't feel anxious, i mean as a result of coming off flec, i was on full time duty trying not to feel anxious and worry myself to death with every heartbeat. as i've said elsewhere i often played a normal slow heartbeat in the background to ground myself and did everything possible to relax and find a focus other than how dreadful i felt.- that in itself was hard work, but better than going with the fear and hamster-wheel of the mind. wishing you some peace, be gentle with yourself - sorry i couldn't provide you with the answer i'm sure you wanted - which would mean you were almost out of the woods! hang in there, breathe - the breath and heart have to be in tandem, listen to something wonderful,do something you love, read positive stuff, anything that allows your heart and mind calm. wishing you all the best!
My ep took me off this as he said that it wasn't doing a lot for the af but the real problem was tachycardia. I lost weight almost immediately - probably just the change in drugs. I don't really feel better or worse but the digoxin prescribed made me feel terrible so have left that off but am taken increased dilzem dose. Back at the hospital monday to have another monitor fitted but am confident that we will get drugs right - cannot have any more ablations so that's not an option.
Full time job and etc that I love so determined to sort this.
Reduce slowly if you do, i thought it best to keep it even, from 100 x2 to 50 x3 (roughly 8 hrs apart) to 50 x2 etc. I kept thinking if i felt icky i'd just up it again and tried not to worry every minute of the day. You must feel like a total zombie surely?? If you can, check what it is you need. Kodaska said to me 'why do you need a rhythm control if you are also on a rate control and noac', - that is something you need to know - i personally was more worried about rate having tachycardia (svt), which is a regular rhythm. Oh to have someone to ask who knows the right thing for me!! In the absence of such, i felt i had to do it myself as i was in such a mess physically, mentally and emotionally on the meds. Wish you all the best!
I was on 50mg twice a day for about 10 years with no noticeable side effects at the time but I did develop an auto immune disease of the tongue called lichen planus. My tongue and mouth flare up now and again with sore weals along the inside of my mouth and tongue. Put a stop to the lovely spicy food I used to love.
Yes! I had that. Like when you came off a fairground ride - the waltzers if the guy fancied you or one of your mates and would spin you around too much haha!
I take flecanide on a PRN basis generally once a month it eventually works for me & no side affects, however I was once given it IV it worked within 10 minutes, but the next day I was dreadful I had no balance & kept falling over, resolved after 48 hours
Hi, I'm recently on flec, 2 X 30mg daily, plus 1.25 biso daily plus extra biso 'as and when'. When in AF, pulse 125-140, feel very woozy, waves of lightheadedness and tired. These of course could be attributed to the AF, but I also get lesser waves of lightness when in NSR. Also since taking flec. 3 weeks, I have experienced sore gums. Not sure if flec is responsible but I am considering the pill in pocket approach to flec.
I take flecainide twice a day. It has been very effectively in stopping my afib symptoms but, like many others here, flecainide makes me feel absolutely exhausted. I really can't stand feeling thus way. The doctor didn't think the flecainide has anything to do with the way I'm dragging, but it very obviously is the culprit. Has anyone had success with swapping out flecainide for another med??
I had bad stomach pain and nausea with Flecainide 100 X2 per day. It started after 5 - 6 days. Came off it after 14 days and was back to normal within 3 days with twice as much energy. Had a cardioversion a month ago and had only 1 noticeable 4 hour AF session since. (It was permanent before). Waiting for Ablation. Fingers crossed. Definitely Flecainide made me feel OLD!
I don't know if Flecainide could cause it directly but being tired all the time and not moving about as one is use to might be a factor. I feel a lot better off of it and enjoy getting out in the yard and going for walks.
I'm so happy you mentioned about weight gain on Flecanaide. I had my thyroid totally checked out but no abnormalty. It has to be the drug because there is no way I can even lose a lb. Gracey
In 3 months of being on tablets, flec and biso, i put on 5 inches bust and waist and hips.Bloating or weight gain, i don't know, but it hurt my inner organs. Since being off flecainide i can go out walking etc, impossible before, too unbalanced and exhausted, nauseated etc. Did not agree with me. Nobody seemed interested. Flummoxed, too ill to complain, what a mess i was in, feel better now thankfully, now i can see what a dark place i was in, aftercare really needs looked at. Will think about what to do about it when i'm well enough. Thankful for this forum, it really helped.
I'm surprised that Flecainide was the first thing your doctor thought to put you on, especially given the very low occurrence of Afib. I am also surprised that he didn't suggest an anticoagulant, as the major risk associated with Afib is the unexpected formation of blood clots that can lead to stroke. My husband is looking forward to going off of Flecainide in about 10 days. He had a stroke because he didn't know he had Afib and his cardiologist hadn't seen it on EKGs or on two-day holter monitor checks. He will stay on Eliquis (also known as apixaban) to prevent any possibility of stroke in the future, even though he has been through successful cryoablation. Note that Afib does become worse over time.
I was referred to the EP by my cardiologist who had started me on Eliquis. I am hoping that if the Afib does get to the point that it needs to address I will be offered an ablation and can skip the meds. I will have to wait and see when that time comes what options I am offered. Thanks for the reply, I am going to stay on top of this.
Flecainide worked wel for me but I still have events lasting up to 6 hours. It used to last over 12 hours but my cardiologist said take half a 100ng pill and it reduced it down to 6 hrs.
It seemed to me that Nebivolol was the guilty party when I used to get daily events and frequent 2 day stays in hospital the doc said we are over treating you and knocked the Nebivolol down from from 5mg to 1.25 which reduced the events a lot and I felt a lot better but my BP has gone up It does say on the leaflet on Nebivlol that it can cause AF A body cannot win can it?
I have wpw, diagnosed 20+ years ago put on flecanide but took myself off it as had side effects.
Eps in May and have been on 100mg of flecanide.
Previously would have the odd flicker of palpitations couple times a week and in 44 years had 1 big event.
I've been terrible whilst on the drugs. Pounding heart so my whole body is bouncing, anxiety that has controlled my life for last 5 weeks, forgetfulness, headache.
I've been to the clinic today and they've said stop taking them and see if/how bad any issues I have over next 6 weeks.
Hi all, I have SVT and a high heart rate normally. I have learned to live with it and have very few major SVT episodes. Recently I was taken to hospital for an episode (first one in 6yrs) and i was put on Flec which I was too anxious to start because of the negative effects listed. however after a whole night and day of palpitating and fear of another episode I started it.
Now I am feeling absolutely horrible, I am dizzy and shaky, I've lost all appetite, nauseous, still racing heart, anxiety, palpitations, insomnia, short of breath etc, I have three kids so I really can't afford to be feeling like this.
I've started cutting the dose down. I was on 50mg morning and night for a week. So I started shaving little bits off.
My question is mostly out of anxiety- how long should I keep cutting it down or should I just stop since it's only a low dose and I've only been on it for a week. I'm terrified of something bad happening from the drug and absence of the drug. I feel terrible as soon as I take it but I'm scared of side effects coming off it. How long does it take and what should I expect? Please help me. TIA
I just came off Flecainide, which my GP and I used temporarily to help resolve a series of 18 AF episodes in November (I experienced three episodes over the previous 20 months). The AF was brought on by the recovery from several infections and vaccinations.
100 mg twice daily brought the AF under control. I then went (am/pm) to 50/100; 50/50 and 0/50 each for one week.
My EP said to wean off to the lowest amount of Flecainide that would prevent the AF from returning. I hope to stay off it whilst considering an ablation to protect against the risk of future infections.
This was my first experience of Flecainide and it took some time to transition from a ‘Pill in the pocket’ approach to a maintenance dose because of the sudden increase in episodes. Whilst I tolerated it quite well, improvements were noticeable as I weaned off.
First, I need to know if anyone on flecanaide has made you have intense itching? I've been on flecanaide for 5 months and have had horrible itching. Scratching and making a mess of my body. Anyone else? I'm off now, but just 2 days and still itching. Help!!
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