How is Flecainide when taken in the long term

I have been a lone paroxysmal AF patient for around 40 years , starting very young around 21 years old, they were very few and far between until the last 10 years, then I was put on Sotolol for around 8 years being taken off because of very slow heart rate. I was then put on Flecainide and are finding the side effects very trying, such as tiredness and dizzy spells . I was wondering if anyone else has had the same problem and carried on taking them.

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24 replies

    migmog
    migmog

    Hello Linbobs, interesting to read reading your concern. Following an ablation 3years ago the cardiologist decided to put me on flecanide. Wrong thing to do, with no time at all I began to feel as thought life was draining out of me altogether. Whilst trying to get myself together following the ablation I decide to make a stroll around the block. Possibly 100 yds within halfway round I just felt as thought I was going to collapse had to literally had to drag myself home. What an experience! Cardiologist was brilliant, he phoned me at home, saw me following after all his consultations and decided to put me on Amiodarone - made such a difference. We still discus that time even now! But then drugs have such a different reaction with everyone. Hope all goes well, let me know.
    Mags

    linbobs
    linbobs

    Hi migmog, thank you so much for your reply, that is exactly what I'm talking about, taking the dog for a walk, on way back i was getting worried, just felt like my heart wasn't keeping up with me. Just had Eco and 24 hr ECG not long ago and everything normal, my cardiologist said if everything ok he would refer me to a Electophysiologist about an abalation, but I've heard that many stories, it's made me very wary of having it done.
    Linbobs

    morrisdancer
    morrisdancer

    Hi, I was prescribed Flecainide 100mg last December and had no side effects at all, and it didn't stop my daily sessions of AF. So in February the dose was increased to 200mg per day and it stopped the AF completely. I feel great and have no side effects. Regarding warfarin, I have a CHAD score of 1 and the specialist was going to put me on it but then was told that I ride my horse regularly so decided the risk of falling off and possibly suffering a severe bleed would outway the risk of having a stroke. He said he would put me on warfarin when I have a more sedentary life style and in the mean time gave me Aspirin 75mg.

    linbobs
    linbobs

    Thanks for the info morrisdancer, I'm wandering if my dose may be too strong, my average episodes over a twelve month period is only around 2/3 times when I was on a beta blocker for 8years, and I was taken off that because of a slow heart beat, around 48 beats per min.
    Linbobs

    Bagrat
    Bagrat

    I have been on Flecainide 100mg twice a day for over two years. I had only ever had two episodes of AF before starting Flec( within a month of each other) prior to this; one at diagnosis and one while on bisoprolol which slowed my pulse so much they couldn't increase the dose. Since the flecainide I have had odd episodes of "weirdy" chest pains in different places and occasionally suddenly feel the need to lie down . I've always put this down to anxiety. have only had one episode of AF following a nasty viral infection in the New Year. All in all in spite of my GP saying "Well it is a dirty drug, but if it suits you fine" I'm very happy with it. have just started on warfarin too as I'm female and over 65 which gives me chads2 vasc score of two.
    W

    linbobs
    linbobs

    Hi Bagrat,
    Thanks for your comment, as to your question , I was on warfarin for 8 years with no problems, I was taken off prior to having a gall bladder operation and put on Asprin . After the operation my doctor decided to keep me on Asprin due to my chads score , being under 65 and normal bp. Hope he was right to do that, I had an episode 3 days ago and it still worries me whether he made the right decision . Didn't worry half as much when I was on warfarin.
    Sure you'll find being on Warfain fine, as long as you keep up with your INR checks.
    Linbobs

    chrisharmer
    chrisharmer Volunteer

    Hello Linbobs,
    Like you I was initially on Sotalol and had the slow heart beat problem. But Sotalol was not effective either. I was put on Flec initially as pill-in-the-pocket for when I got AF, and then on 100 mg daily which was resonbaly effective but I still had breakthrough AF, once causing me to pass out. I had an ablation that was largely succesful, and since then I have been on 50mg of Flec daily to reduce ectopics and prevent tachycardia - I've been on Flec for probably 5 years now, have no AF, and no side effects at all. I go to the gym regularly, and can do a 20 mile country walk. Sometimes I increase the dose if I get excessive ectopics because of someting I've eaten, and at over 100mg I get slight nausea from the Flec.
    But long term of Flec, absolutely no problems. But we're all different!

    Take care, Chris H

    TheStand
    TheStand Volunteer

    Hi Linbobs,
    I was put on Flecainide a few years ago and had the same results.After about 2 weeks I decided that this was not the drug for me. EP switched me to Propafenone and I took it for almost 2 years. It did somewhat tire me out for the first 2 weeks but nothing like the Flecainide. After that first two weeks I was pretty much back to normal. I also took only beta blockers for the first 9 years of AF and my attacks started with 1 or 2 per year and ended up with 1 or 2 per week over a 10 year period. The propafenone really helped to slow them back down to 1 or 2 a year until November of last year. My EP said that I would need to switch drugs again or have an ablation.

    I chose the ablation which was done in Feb of this year. It is the best choice I have made. I was so afraid of having it done and now I can't figure out why. I just went to sleep and when I woke up (about 6 or 7 hours later) it was all over. I had 2 or 3 attacks in the first few weeks (which the EP said would happen) but they were so mild that I could hardly tell they were happening. My normal attack was about 6 to 10 hours long, heart rate of 175 to 185 BPM and my blood pressure would crash and bottom out. I felt like I had been hit by a truck for about 2 days after the attack. After the ablation the few attacks I had lasted about 45 mins to 1 hour, my heart rate never got above about 115 and my blood pressure stayed steady and when it stopped I had no after effects.

    The procedure was so easy and I had almost no pain at all (except for being sore from laying down for a day). I was pretty tired afterwards and gained my energy back over a period of about 4 or 5 weeks.

    I ran out of my propafenone about 3 or 4 weeks ago and did not renew it. I have been off my med for about 4 weeks and have not had an attack in almost 6 weeks and I now feel great.

    I'm not sure what stories you have heard about the ablation. When my EP suggested it I hit the AF forums and started asking questions about it. I got so many answers from others who had it done and they were mostly positive. The only negatives were from a few who said it didn't work. I watched many videos on youtube of the procedure being done and I decided to do it.

    For me the only negative is that I may have to have it done again (a touch up) in 5 to 10 years but after going through it, I would do it again in a "fast irregular" heartbeat. There are many here on this board who have recently had it done so ask questions....

    I agree with you about the warfarin. I would really regret not taking it and having a stroke after an attack. I have read and heard so many stories from those who had TIA's and strokes after a Dr said "I don't think you need an anticoagulant".

    Welcome to the forum and keep us updated on how it is going. Ask all you want and comment when you can....

    Tim

    linbobs
    linbobs

    Hi Tim
    Thanks for your comments, I will certainly give the ablation more thought.

    David21
    David21

    Warfarin I am told has to be regulated constantly and alcohol intake has to be pretty constant. I was put on Apixaban 4 months ago and so far all fine. David

    caromia
    caromia

    Hi,I was diagnosed with Paroxysmal AF almost 12months to the dayThe cardiologist prescribed Asprin,Flecainide and Bisoprol.The first episode of AF was terrifying and I thought I was about to die but since on the medication the heart has calmed.
    However,like yourself I find this debilitating tiredness very hard to cope with together with other symptoms I have developed ie Ringing in the ears which is very detrimental to my hearing and now have to wear aids,palpating feeling across the skull,heart beats even in my finger tips and other areas throughout my person.
    Like yourself I feel utterly wacked and as a result of this I am finding I don't wont to be in company as my mind is not focused and all I can think of is getting to bed.
    This give the impression to other people that I am confused as no one understands the feeling that is associated with the medication/AF
    Yes,I have noticed a difference in the quality of my hair and my overall physically appearance including muscle tone also in eye problems flashing lights in front of eyes.I try not to burden friends and acquaintances with my health problems however it reflects on my self confidence like yourself and how others perceive me.Vague and disinterested I should think.Is the tiredness due to the medication or the AF or both I don't know my GP tells me the medication is doing its job by keeping the heart beat stable.
    My personal belief is if the heart is not functioning and pumping adequately then there are going to be consequences ie atrophy of the artoria,lungs and kidneys..
    I know I cant turn back the clock and no one lives for ever but having said that there is not much quality of life feeling so physically depleted...
    Your hair looks lovely in the picture so try not to worry to much, I know its easier said then done.
    Take Care,C

    Terjo
    Terjo

    Hi carom,
    Sounds very familiar, one thing that gave me some respite was coming off bisoperol which was doing far more than slowing my heartbeat. I'd been really swollen internally for years and this stopped after coming off the beta blocker and I felt great for a few months but now I'm back to feeling exhausted again. The noise in my ears is very intrusive . Like you I feel I would like to turn back the clock .
    Hope you feel better soon please let us know about your progress. Teresa

    Wiccan
    Wiccan

    Hi, I was on Flecanide a few years ago, before my second, successful catheter ablation. It had no effect on my PAF and so the doctors increased the dose and two weeks later, while on remembrance day parade, I collapsed in the street. The outcome was that I had had an episone of Ventricualar Fibrillation caused by the Flecanide. I was put on Amioderone after that until the ablation.

    Samantha

    linbobs
    linbobs

    Hi Samantha,
    Yes I believe this is the danger of Flecainide with some people, it's a very potent drug.

    albyone
    albyone

    I was on flecinide for 15 years and I never had any problems with it. I was taken off of it recently and am taking tikosyn now.
    Edward

    Bunny92
    Bunny92

    Hi, I was prescribed Flecainide when I was diagnosed with AF, but after a week I had to come off it, I was feeling very sick all the time, and my energy levels were on the floor. Then we tried beta blockers but they caused migrains, so eventually I was given a Calcium Channel Blocker called Slosem and so far so good.

    Haystacks37
    Haystacks37

    Hi linbobs
    I was diagnosed with paroxysmal AF about 15 years ago and placed on flecainide within 12 months. Side effects were ok to start with and the bouts of AF reduced dramatically. However after about 8 or 9 years things went down hill dramatically, with the frequency increasing to 1 every 7 to 10 days. It was then decided that an ablation would be good, but things got worse so I had another ablation and still no improvement. Further tests revealed that I had now developed a long QT syndrome caused by the flecainide. This was then stopped and I was prescribed Amiodarone and was told that this would have to stop within 6 months as the drug was so toxic. This did control the rhythm but I then had another ablation and 3 months later all drugs were stopped. At this stage I thought all was cured but here we are nearly 12 months later waiting for a trip to the Cardiologist as we are now have 2 to 3 bouts a week. but to look on the bright side I must have had at least six months without drugs and I can say it was bliss, and it does mean another day out in London it cant be all bad can it. Good Luck

    Senyadt
    Senyadt

    I was prescribed flecanide before cardioversion it put me in sinus rythmn but gave me atrial flutter for which I then needed an ablation now after 4 cardio versions I am still no further. I have follow up appointment on Saturday for the last procedure( which lasted 48 hrs).I wonder what they are going to offer this time?. I say, Beware of Flecanide!!

    chuckle
    chuckle

    HI, I have been taking Flecainide for about 12 months, 50mg twice per day. The Flecainide replaced Amiodarone. I am also on Diltiazem (90mg twice a day) and Metoprolol (50mg twice per day). This combination is very effective at controlling AF and I have not had a bout since being on Flecainide. I do not suffer any side effects except chronic tiredness. I can function normally in terms of going to work, working in an office all day etc but any physical exercise is a no-no. I tried doing some digging in the garden last weekend. I lasted about 10 minutes and needed to sit down for two hours after to recover. I believe Flecainide is the cause but I guess it might be one of the other drugs. I had an ablation three months ago but suffered a bout about four days later. The doctor told me to stop taking all of the drugs immediately after the ablation. Not a good idea in hindsight. I have been told this week to stop taking Flecainide and if there is no recurrence then to stop the other two as well.I have decided to cut down the doses slowly instead i.e. 25mg twice/day instead, so we'll see how it goes. Fingers crossed.

    linbobs
    linbobs

    Hi, Chuckle,
    It sounds to me like the Flecainide , only because its the effect it has on me.
    Couldn't comment on the other drugs as I haven't taken them.
    I tried like you to cut down to 25mg twice a day, I no longer had any dizzy spells, but I kept feeling a little panicky so I went back then to the original dose. Decided to wait until I saw my doctor to see what he had to say.

    lepaul
    lepaul

    Hi Linbobs i had atrial flutter for years was put on a drug of which i dont remember the name of which did not work so was put on flecainide this was very effective for a while but then attacks increased so had an ablation which cured the flutter but while doing this they discovered the af the attacks of this became very regular and debillitating and was dragging me down , i was offered an ablation of this which i decided to have ,it was a success for 4 weeks then symptoms returned regularly , my bisoprosol was increased to 3.75 mg ands my flecainide to 300mg a day , the symptoms are still occuring on a regular basis and make me feel so unwell , my cosultant has said another ablation is needed which i have agreed to as cannot put up with the severe symptoms of af , anyway its only since reading the answers to your question on here that its probably the flecainide and bisoprosol that are to blame for some of them ,side affects that is , one thing for sure mind the af symptoms are awfull and scary at times so think about the having the ablation then touch wood no more flecainide , thats what i hope for after this one , regards

    linbobs
    linbobs

    Hi lepaul, thanks for your reply , I will certainly consider the ablation, especially after the latest episode last Monday , like tou say very scary.
    Hope everything goes well for you after your next ablation , take care
    Lynn

    Thomas45
    Thomas45

    Hi linbobs.
    I've been on Flecainde for about 6 years, withthe dose increasing from 50mgs twice a day to 150mgs twice a day which I've been on for over 4 years. i have no side effects at all. I'm almost AF free. I've had 2 forty-minute episodes in the last 15 months, bioth just before I was going to bed in the evening.
    I was on Amiodorone for 11 months but it didn't reduce episodes and I had chest and arm pains and feelings of panic when on it.
    I've been on Warfarin for the last 2 months (previously 300mg aspirin). .

    Offcut
    Offcut

    I have been on and off flecanide since 1992 I had a bad INR 5.6 which was put down to the flecanide. I am asthmatic and with Lung Fibrosis and Pleurisy so am very limited to what they can give me. I am on sotalol twice a day was three but my fingers went blue and Digoxin once a day. I have been on bisoprosol / Amiodarone.

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