Hi all, I am new to this group and looking for any support to help me understand what to expect while weaning off of flecainide. I have been reading some of the posts, and I wonder why my EP ever put me on flec to start with. Anyway, I have been taking 50mg flecainide 2x a day along with 2.5mg Bystolic 1x a day for almost 8 years. While it has helped my PVCs some, I believe it is making me feel horrible in many other ways. I was seeing an EP, but he only wants to up my dosage, so I have switched to another cardio recommended by several people I know. He was immediately more helpful and showed concern about my being on flecainide. In the next two weeks he is going to do a nuclear stress test, echo and holter. If he is satisfied with all the results he is going to slowly wean me off the flecainide. Should I expect he will do this over weeks or months? I am excited and nervous. Excited because I think the flecainide is messing with my head and it will be nice to have it out of my system, and nervous because I am afraid my PVCs will get worse and I won't feel any better. I just have no idea what to expect and I am so sorry I waited this long to find someone to wean me off.
Weaning off Flecainide: Hi all, I am... - Atrial Fibrillati...
Weaning off Flecainide
Last year I decided I'd wean myself off of 2 x 100mg Flecainide daily. I'd had no AF for 5 months and felt really well. I thought I'd do it very slowly, reducing the dose week by week. Guess what, a month later when on a very reduced dose of Flec the AF came back. That was last October and I've been in constant AF ever since. I had never been in constant AF before then. I bitterly regret what I did and I'm back on the 2 x 100 Flec, but although it helps it hasn't stopped the AF.
Jean
I was thinking of doing the same with the Flecanide because of side effects. So thanks for posting this 
Hi, I started 2x 50mg approx 6 months ago. I have started to feel that there is little benefit as in March alone I was in Af on at least 14 different days. I don’t have an EP appointment until October so decided to stop the flecainide myself. I stopped approximately 2 weeks ago and have seen no difference in the Af (which was paroxysmal anyway) and experienced no withdrawals or side effects coming off it. I hope your experience will be the same.
TerriMo, I just want to wish you a smooth walk through the weaning off Flecainide. It sounds as though you're in good hands and the process will be closely monitored. Please let us know how it goes for you! Having just read of Jean's experience I realize that I was probably foolhardly to get off Flecainide without supervision, though when I initially cut the 100 mg x 2 per day down to 50md X2 per day it was with the cardiologist's approval and with no warning of the dangers of doing it suddenly. So when I later decided on my own to drop it altogether and take the PIP approach, I was obviously taking a risk (but fortunately with no bad effects so far). This is another example of how different each case is and how important it is to have a cardiologist we can trust to give us advice and guidance. My cardio tends to give neither.
I'm very interested in your feeling that Flecainide is messing with your head. "Messing with my head" is the main reason I wanted to stop taking it on a regular basis and switch to PIP only. If you feel like giving some details I'd be most grateful to compare notes . . . but if you'd rather not go into all that, it's OK. I understand.
All the best to you, TerroMo.
I don't mind at all, but it's not easy to explain. I have a weird feeling in my head all the time. Worse at night. I have tinnitus, visual disturbances, headaches, a lot of dizziness or sense of being off balance. A vibrating feeling in my head, like I can't shut down. I wake up through the night with this and it gets better after I'm up for a bit. Sometimes the buzzing/ringing in my head is so loud. The fatigue is overwhelming most times.
Hello! just want to ask if during your Flecainide days, did you ever had short episodes or PVCs. I'm on it now for a month and I want to wean it off. I only had 1-2 attacks each years and now I felt that my heart have more irregular beats. I am just anxious to take it off that my heart will get worst.
Hi! I know some people have great luck with flecainide, my uncle for instance has been taking it for afib, and does great. But for me, if I had known, I would have never started it. I had more pvc's and more episodes of my heart racing and so many other symptoms that were from the flecainide. In the end I started feeling like my heart would pause, and that was so scary. That is why I finally changed drs and weaned off. I had been on it for 8 years though, so I had some tests run to be sure my heart was structurally sound and strong. It took me a few months to feel better. After I was off flecainide for a year I weaned off of the bystolic. I have been over a year medication free, but I still have a lot of pvc's. I see an EP now and he is talking about implanting a loop monitor in my chest to capture more info and go from there. I'm also almost to menopause, so those hormone fluctuations don't help.
I was on flecainide 2 × 50mg since July 2017 and came off it 3 weeks ago. Just stopped. I had an ablation at he end January so it was not required. have had no side effects . However I do not feel dramically better either so I am pretty sure that the flecainide was not causing me any problems, and that it is the diltiazem that I take as rate control which is giving me the tiredness and brain fog
Regards
Terrimo,
I was on Flecanaide (2 x 100mg) from the age of 46 to 57 due to paroxysmal AF. It then stopped working and I had an ablation. I had some very unpleasant affter effects after the ablation but I have now been AF free for 18 months. I carry flecanaide as pill in the pocket but I have never had cause to use it since.
Best wishes.
I have just had my dose of flecanaide reduced from 200 mg a day to 100 mg a day on the advice of my EP,who had not prescribed such a high dose himself
..NO I'll effects,only good ones.I haven't had flutter or AFib for over a week,and flecanaide had put me into flutter to begin with!
Seriously thinking about asking EP if I can come off daily dose and use as Pill in Pocket approach.We are all different of course,but I hope you fi n d benefit from a change in regime.
have been on Flec for 9 years with no problems at 2X50mg and have no intention of decreasing - has no effect - walk 10 miles a day and work 5 days a week - I am 67.- guess I am lucky,
I was taking 50 mg Flec twice a day and was off balance and lightheaded. Was on the flec four months. The EP let me just stop cold turkey last October and I started feeling better the next day with no affect on the afib. I also take diltiazem and xarelto and have a pacemaker.
I was just weaned from Flecainide as well. I had a cryoablation on 11/21/17. After the procedure I was on Flecainide 100 x 2, Metoprolol 50 x 2 In December my dose of Flecainide was decreased from 100 x 2 to 50 x 2 because I was having a sharp pain in my head (not a headache) with numbness ion my face. When the dose was reduced this stopped. At my 3 month follow up in February, we stopped the Metoprolol. I did notice an increase in both my bp and heart rate when the Metoprolol was stopped. At my 5 month follow up on 04/27, my EP decided to wean me from the Flecainide slowly over 10 days. I had no side effects and do not feel any differently. He also put me back on the Metoprolol at 25 x 2 which has brought my bp and heart rate back down. I will always be on Eliquis since I had a Stroke in December of 2016. The good news is that I have had no Afib since 11/21/17. Keeping my fingers crossed that being off the Flecainide does not cause me to go back into Afib. This is my 2nd day off the Flecainide.
I've been taking Flec for about 1 year, just 50mg twice a day, and PIP when needed. As I don't like being on medication, I decided to wean myself off. Have been cutting bits off my tablets for a month, now down to half a tablet twice a day. No more AF than usual, apart from an episode which was triggered by taking a medication for cystitis. So far, so good - good luck with yours :o)
Let me know how you get on please Wendy.
Jean
I will, and I really hope you feel better soon.
Thank you all for your input. It’s appreciated. When I wean off flecainide I hope my symptoms will be minimal. If not, my Dr wants to try something different. I expect to start weaning off around the 25th. I have a nuclear stress test in a couple days. Pretty nervous about that since they are going to inject me with something rather than have me walk on the treadmill.
Hi TerriMo! Don’t be nervous about the nuclear stress test. I just had it done two weeks ago. The drug they inject made me have slight discomfort in my abdomen and chest. Also a mild headache. As soon as they were done they gave me reverse drug that took all the unpleasant feelings away. And the discomfort only lasts few minutes. I was worried about it also, but found it not so bad. Good luck!
Hi Terrimo - I had that nuclear stress test. It was scary for me too. But don't worry - so they IV you the fluid that gets your heart rate up. And I have afib so was worried about my heart rate. But its just like you're really jacked up on caffeine for about five minutes. And then they give you caffeine which somehow reduces your heart rate immediately after. And it works. Definitely counter intuitive. But not to worry. It comes on strong. But just breathe through it. And it's done in like fifteen MInutes.
Thanks for posting TerrimMo. I also think Flecainide could mess with head, difficult to put my finger on it and be certain but it is unbalancing things a bit and preventing relaxing properly. I may be wrong but I think I read somewhere the same drug can be used for Schizophrenia.
The good news is that I have taken 200mgs/day for 4 years for Lone PAF and QOL is so good I have decided to postpone weaning off for another 6 months. If I do start weaning off (my cardio understands but prefers me to stay on I suspect for his 'quiet life' ) I will be doing it very slowly over a long period - say 25mgs every 3 months or even less when going from 200 down to 100mgs, as I understand this has much more impact on the body than the last 100mgs, if you follow me. Hope all goes well for you and please keep us in the loop.
I have been successfully weaning off the Flecainide. First thing I noticed is my head felt better. I could think better, I don’t have the vibrations at night anymore. My headaches are better so far. I can really feel my heart beating though. It’s just like I can feel it even though it’s not racing or skipping. Maybe that will go away in time. My heart rate fluctuated the first week, but now it’s pretty settled. I do feel pretty tired. Just today I got my test results. Dr. says my heart is strong. I am having PVCS that probably won’t go completely away. I have mitral valve prolapse - mild, which I did not know. I had some vascular testing on my legs and Dr. says I have a blood flow issue. I am to wear compression socks until my next appointment. Then we'll talk about whether I need a procedure. Next visit I’ll get a monitor to wear for a week to see how I’m doing off the Flecainide. Oh and I have had no dizziness since I’ve gone down to 25mg 2 x a day. And none of the feeling like I am moving when I am not. I am still taking the Bystolic. Hopefully the fatigue will get better. The Dr. said I can consider stopping the Flecainide completely now, but I am not sure I want to do that. I think I may cut the 25mg in half in a couple days for about a week.
Regarding my afib - I've had it since January and I believe it started after I had covid before covid was even known about. But heart rate issues have gone up greatly in association to covid. So I'm certain this was the initiator of my afib. I was put on 100 mg twice a day but I immediately weaned back to half that amount. And my afib has been so on and off since then. I've had a month straight with no afib. And I've had periods where I have an afib attack once every two days that last about 2-4 hours each. I was about to get ablation but thought I'd give a healthy diet - the afib diet - a good chance first before they fuck with my heart via surgery. Since I made that decision just over two weeks ago I haven't had afib once. 17 days now. But still taking the fleccc. Appreciate this forum. Really helps to see other people's issues and empathy. Thank you all.
Have only just started Flecainide on the advice of cardiologist and EP and no untoward side effects at the moment, but already my GP is talking about Dronedarone
Di
Any updates Terri? I'm hoping to wean off soon too and very apprehensive about it. Thanks.
Hi Norbu, I never saw your post here! I just responded to someone else above. Here's my response in case you can't find it.
Hi! I know some people have great luck with flecainide, my uncle for instance has been taking it for afib, and does great. But for me, if I had known, I would have never started it. I had more pvc's and more episodes of my heart racing and so many other symptoms that were from the flecainide. In the end I started feeling like my heart would pause, and that was so scary. That is why I finally changed drs and weaned off. I had been on it for 8 years though, so I had some tests run to be sure my heart was structurally sound and strong. It took me a few months to feel better. After I was off flecainide for a year I weaned off of the bystolic. I have been over a year medication free, but I still have a lot of pvc's. I see an EP now and he is talking about implanting a loop monitor in my chest to capture more info and go from there. I'm also almost to menopause, so those hormone fluctuations don't help.
I have been flecainide free for over a year now and bystolic free for about 3 months. I still have struggles, but overall I feel better. I can tolerate my pvc's and I know to stay away from triggers. The first several months were a challenge when weaning off the flecainide. There were many days I wanted to take it again, but I am glad I didn't. I would say it took me a good 8 months to feel like I never wanted to take it again. My heart ryhthm would go crazy those first months. But nothing dangerous. We are all different, so always keep that in mind! I am glad to be medication free for the first time in 14 years. But being meds free also means I need to be more mindful of my limitations. I can say my mind is more clear and though I tire easily I am able to do more than I did before. For myself, I think the side effects were more challenging than the issue itself. I made sure to have my anxiety in check before weaning off. Pep talks to yourself, breathing techniques, those are important. I've been so busy too! I just became a grandmother for the first time, so I am happy for the clear head and a little more energy!!
TerriMo,
How are you doing? I’m also considering coming off flecainide. I had an ablation a year a ago and then started taking flecainide afterwards because I went back into bigeminy.
I hate PVC’s. They terrify me, but so does this medication.
Thanks.
Hi! I am over two years flecainide free and 1 year bystolic free. I am taking no meds at this time. I still have a lot of pvcs and I hate them. My triggers are mostly eating, getting too hot, hormones, and stress. But, I am so glad to be off the flecainide. I still had pvcs the entire 8 years that I took it on top of all the side effects I felt from the flecainide. I am glad to not have all those side effects anymore. I'm envious of those that take it and get relief with no side effects. My uncle has been taking it for afib a few years and has no issues.
I was recently started on Flecainide. i was on it for 3 weeks when i had a fainting episode.. The doc put me on a heart monitor and I had a second fainting episode within 1 week. When they looked at the monitor read out... it was found that i had "flatlined"for 9 seconds. They are preparing to put a permanent pacer in me. No more flecainide for me
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