Hi Folks, I need your advise again. I had my second ablation in March this year my Issue then was, my fear of having sedation rather than G.A. Based on your experiences which seemed to be positive on the whole, I went with sedation and it the whole process was much easier and quicker to recover from. Thanks.
This time a have a medication query. Unfortunately this week AF has returned big time . I have raised heart rate of around 133 most of the time. I also feel dizzy and tired 24 7. My Kardia machine mainly diagnoses Tachycardia or says unclassified. Since May I have only taken Aipixaban and Sotolol as ap.i.p. The Sotolol is not making any difference this time. I am fortunate that my electrophysiologist is Professor Schilling at Barts Hospital so I know am in good hands. He seems not to keen an Sotolol and prefers Fleciainide.I do have a prescription for that but I feel anxious about taking this as I know that some contributors have found the side affect quite extreme. I don’t want to end up in A&E as happened at the start having AF before I knew what it was.
I know some people feel uncomfortable around actually recommending any medication but I would me very grateful if you could share with me your experiences of this drug. I am having check up at Barts in three weeks time but I can’t manage until then feeling like this. When this has happened before it has i only lasted a couple of hours and I was back in sinus rhythm. I am looking at the pill now and would really like to take it. I remember reading that some of you swear by them and they get you back normal beat in a couple of hours. Right, now - here a my final two question to disrupt you relaxing Sunday afternoon! 1.Does any one know why Sotolol, which was prescribed for me by the cardiologist I first saw in hospital 2116 when (all this started) is no longer recommended for AF? 2. As I have had two ablation with the wonderful NHS will I be allowed a third if the professor thinks it is necessary?
Thanks once again for your help.
Warm regards, Ruth.
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Hi Ruth. I haven’t had any ablation so can’t give you any advise on that. However I had been prescribed Flecinade after my second episode of AF but unfortunately it was not suitable for me. I had frequent atrial flutters and second degree AV Block and was changed to Sotalol which I believe is a stronger anti arrhythmic drug than Flec. Sotalol keeps my AF under control although it does not eliminate the AF episodes altogether. So far I have not had any adverse side effects from Sotalol. Although I know one of the main concerns is that Sotalol can cause prolonged QT and in some cases could lead to TdP (Torsades de Pointes). I suggest you ask your EP at Barts (Prof Schiling) on his reservation on Sotalol for you. Would like to hear his views too. Personally, I think thus far Sotalol seems to be working for me but in the long run I would like to be off it and am considering ablation. Hope this helps.
Hello Ruth - I am not medically trained but I read that if Sotalol is to have an influence on AF, it is needed in doses which are thought to be unwise.
I’ve not had an ablation, trusting my 2 x 100mg Flecainide to keep AF under control - which it has done for over 5 years. I have minimal side effects - short runs of AFlutter very occasionally which my EP says are caused by Flecainide but do not worry him. I take a beta blocker to keep the heart rate down, making AFlutter safer. From day one on Flecainide, I have felt well - no nausea or other unpleasantness - and the AF is muzzled for the moment!
Regarding further ablations, there are several members who have had more than 2 - hopefully someone will be along to give you their experiences. All I can say is that Flecainide has been my friend since 2014.
I had been taking Flecainide for 17 years but due to increased PAF over the last few years my dose was doubled to 100mg twice daily last year. Apart from feeling lethargic all was well until a few months ago. I experienced an SVT rhythm which rewarded me with a stay in hospital followed by lots of tests. While in hospital I was given Sotolol but my EP preferred Bisoprolol. Although I was on Flecainide for a long time, there is no going back to it now due to the SVT rhythm that it may of caused.
You are in very good hands with your EP and no doubt he will answer your questions.
Hi. I have good things to say about both medications. I had quite a few years on flecanide and it kept my AF under control until a nasty virus triggered it off again. Flecanide still made AF much more bearable until a stress test showed it was becomming pro arrhythmic for me. I was sent for a scan of my arteries and heart but no blockages or abnormalities were found so it was just flecanide doing what it is known to sometimes do.
I was then put on sotalol at a sufficiently high dose to more or less stop my AF for now at least. After an initial month of brain fog and lethagy , I now have no side effects and ecgs show that for me with a first degree heart block, the sotalol is actually better than flecanide as it is not increasing the block, which the flecanide did. I guess all this shows how individual , medication can be. I am sure you will be fine on flecanide although you mayhave some side effects to start with.I understand your worries as I am always really wary when I start new medication too. Good luck. X
I was first prescribed Sotolol nearly 30 years ago but this was switched to Flecainide about 2 years later. I have been taking 200mg Flecainide daily ever since.
Regarding the number of ablations on the NHS, I have had 7 ablations on the NHS. I think any such decision does potentially differ regionally.
I can however tell you that my current EP used to be a colleague of Dr Schilling.
Since my last ablation 2 ½ years ago my heart has been much more stable with only a very few short episodes of AF each terminated by PIP Flecainide.
I have had no identifiable side effects I can attribute to Flecainide
Wow it is amazing how different each individuals experience is with Flecainide.
I had my diagnostic EP study done early August this year which discovered 4 sites causing my Ventrical ectopics and VT, but because I have no other structural problems with my heart my doctor put me on Flecainide to control my arrhythmia. The side effects from the Flec were so severe, it was actually worse than the symptoms of the arrhythmia. I lasted all of 7 weeks before my doctor took me off Flec and I ended up in hospital with the withdrawals from it..... hoping for success with first ablation later this month
Good luck Ruth, I hope that Flecainide is well suited for you.
Hi Ruth, As someone has already mentioned about us all being different, but I think it is important to share when I can. I was on Sotalol 80mg x 2 for three years and had Flecainide as my PIP; my Cardiologist in East Sussex suggested an extra Sotalol as PIP but whilst taken to A&E whilst in holiday in Devon the Cardiologist there gave me Flecainide as a new PIP and I used it a few times to great affect ( 100mg 30 mins after the onset of an AF episode and a further 100mg an hour later if required ). I had a ablation in May this year and was taken off Sotalol and put on Flecainide 100mg x 2 a day for 3 months then cold turkey and so far all good. I have to say the first week on Flecainide made me a little + breathless but then fine and I never had side affects from Sotalol. Good luck going forward. Max
I am sorry to say that I couldn’t tolerate any of the many and varied drugs they put put me on to try and control my Afib. For me, Flecainide was the worst and I stopped it after a few days.
I had one ablation for SVT. And two for left sided Afib, the last being two and a half years ago. Not a single episode since thank goodness.
But, as I have discovered over the years, my body goes into overtime to produce scar tissue when it is damaged and in this case that has been a great help since it is the scar tissue in the heart caused by the ablations that apparently block the rogue electrical impulses that lead to .Afib
So for me my predisposition for producing excessive scar tissue has actually, for once, been helpful.
Don’t be scared, easy enough to say, but hard to practice!
All surgery carries risks and these should be explained to you in detail. However, since I couldn’t tolerate the medication, there really wasn’t an alternative for me. In fact, I couldn’t wait to have my surgeries and regain my life.
Might I suggest you ask for the warm air blanket if you undergo surgery. It made a big difference to my recovery. Those catheter labs are really cold. Also, discuss any concerns with your anaesthetist.
I was initially prescribed flecainide, 100mg daily, but on discussing this with my GP I decided to use only as a PIP (to take as and when I have an episode, not every day). My reason for doing this was not because of side effects but because I wanted to reduce the number of drugs I was taking. As my AF episodes are one, every 2 - 3 months, my GP was totally in agreement. So to answer your question, I have never had any side effects from flecainide, and when I do have an episode, it works very quickly to bring me back into NSR. If you have been prescribed it and are feeling rotten, I would go for it. Best wishes.
I personally found flecainide marvellous and it kept me on the straight and narrow all the time I was on it which was for about 15 months so much so that although I was booked to have an ablation in March 2017 I kept asking if it was necessary and why couldn’t I stay as I was as I felt so well. The ablation went ahead and I didn’t feel any different other than that my heart rate went down considerably to between 39-44. It is now roughly 45 which makes me feel sluggish.
However, back to flecainide. The EP kept me on flecainide for about 3 months after the ablation, but for some reason he was anxious to get me off of it. I saw his registrar and she stopped me immediately the next time I saw her and for a few months I felt awful, uneven heart beat, just not well. I have improved despite the slow heart rate, but I have since found out that if one has atrial fibrillation flecainide could cause atrial flutter and vice versa. I have heard that if you are taking flecainide then a low dose bisoprolol is usually prescribed with it, but I think that is only if it is taken on a regular basis.
Personally I found it a marvellous pill and had no side effects at all, although I have read on this forum that people did not get on with it. Could you telephone your EP’s secretary before your 3 week appointment and ask her/him the EP’s opinion? Of course if it was the EP who gave you the prescription, and we all know how long it takes to get an answer from hospital, I would take it to make you feel better. Again just my opinion, not medical advice.
I haven't read the other replies so i apologise if I repeat anything said already.
I have been on and off flecainide a few times (had an ablation, stayed in NSR, went off meds, flipped back into afib) and find that my experience of flecainide now is very different, and much worse, than previous times i have been on it.
What does work for me is Coenzyme Q10 and magnesium. supplements. I recommend taking the maximum recommended doses of these for a few days and see how it goes. If it works then experiment dialling down the doses.
I haven’t had an ablation and my consultant has suggested moving from Atenolol to Sotalol so that is yet to be experienced. I only managed a week and a half on Flecinade, it gave me extreme dizziness.
I’ve just started taking Flecainide a week ago, 150mg. per day. While I notice some slight shortness of breath, no big side effects. I’m fairly active and healthy overall, still max out HR when exercising, etc. Has not eliminated my Afib completely either though, but has made episodes shorter. May need to increase my dose? I’m also scheduled for ablation in December, need to decide on whether to to stick with Flec, or go through with ablation. My EP didn’t seem to strongly recommend one route over the other.
Like you I suffered with sickness & loss of appetite for 1st 2 weeks after ablation & felt really rough. Now on 50mg x 2 a day & sickness has gone
I have had AF since the mid 1980's and spent years on Digoxin and Quinidine and then Verapamil. I was put on Flecainide during a hospital stay about 15 years ago. After trying their usual drugs with no success, my cardiologist came in with 200 mg of Flecainide and within 2 hours I converted. They monitored me for another 24 hours before sending me home with a prescription for 100mg daily of Flecainide. After 2 days it was obvious that it would not work. My heart rate dipped into the high 30's and I was disoriented, dizzy and unable to work. Back to the cardiologist and it was decided that Flecainide would be my pill in a pocket. I started out at 100 mg with each episode and for several years, that was sufficient. Then, when I did not convert within the 3 hours set by the doctor I called him and he told me to to take another 100 mg then, and to up the dosage to 200 mg with each episode. That has worked well for me for the past 10 years or so.
However, as I have said on here, ad nauseum, once I changed my diet and cut out carbs I have now gone nearly a year without having any episodes. But, if I did, I would take 200 mgs. The only issue is that I pee every 30 minutes after taking the medicine, and can count on converting after 4-5 visits to the bathroom. I have new instructions that if I don't convert in 24 hours (instead of 3) I can take another dose of Flecainide instead of heading to the hospital, but that has never been necessary.
I have been taking Flecainide 100mg twice a day for many many years. I have no ill effects overall.
However, my bpm when resting is quite low, at 44 - 46 and recently I have been quite tachycardic during the day especially when exercising. My condition is PAT (Paroxyssmal Atrial Tachycardia) but don't let that put you off!
I understand that Flecainide is a drug of long-standing and generally well tolerated by the majority.
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