I’m already increased to the highest dose of flecainide (150mg twice a day) & I take a beta blocker & Pradaxa. My EP said that “theoretically” I could probably have the Flecainide dose increased to stay in good control if need be. Does anyone have any experience with anyone who’s taking more than 150 mg twice a day of Flecainide?
My paroxysmal AF diagnosis also has a “new” recent SVT diagnosis. Sometimes I have a horrible time trying to sleep because I think I’m feeling ectopics or something that’s going to turn into a run of irregular heartbeats or tachycardia or a fish flopping around in my chest. I’m a mess. I try to meditate and do deep breathing but that really hasn’t helped. Ablation scares the heck out of me because I read the percentages of success and the percentages of people needing a second one or third one or fourth one. Ablation is seldom one & done & it’s invasive & they BURN areas of your heart!
I know I must sound like a big whining boo-hoo baby and yes, that’s where I am right now, in the boo-hoo baby category with a pity party on the side with a big dash of fear thrown in the mix. I need warm fuzzies please and info about that flecainide maximum dose comment by my EP —and what really does work for stress because I haven’t found that yet. Thanks in advance & with much appreciation.
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Doggiemomma
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Sorry that you are feeling this way but not uncommon in the early stages of diagnosis. Yes it does get easier !
Regarding ablation please believe me when I say that I am a devout coward but had three ablations for AF over four or five years and a fourth for another condition and would have another still if needed, (No AF for eleven years by the way.) You seldom find people here saying they regret it mainly because having got rid of AF they never hang around here.
As far as flecianide goes I have always understood that 300mg is the total maximum 24 hour dose permitted so increasing is not something I would countenance. I think you need to define theoretical with your EP before even thinking about that.
The NHS site says "Supraventricular tachycardia (SVT) is a condition where your heart suddenly beats much faster than normal. It's not usually serious, but some people may need treatment." That doesn't sound too bad, does it?
I think you are wrong about ablation. I had mine three months ago and I haven't had an episode of AFib since. Burns your heart, well it's only in little tiny bits to stop the extra signals in their tracks. And I think the body has always been used to dealing with burns. Certainly for far longer than dealing with drugs!
Ablation is successful in 70% of cases, sometimes people need more to catch more of the signals. It's improving all the time. When it started it could take about ten hours but mine took an hour. I was very grateful to be offered it.
I would much rather have an ablation than have to take drugs like bisoprolol and Flecanide for the rest of my life. You are wrong when you say ablation is rarely one and done. Would they be increasing their capacity to do it if it had a low success rate?
"I know I must sound like a big whining boo-hoo baby and yes, that’s where I am right now"
Heheh - I'm with you and understand how you feel. Look - I'll make you a promise. The whole afib thing is not as bad as you think it will be. At the start of the journey of course you panic - a few years down the line you realise it's not as bad as you thought it would be.
BobD wrote
"As far as flecianide goes I have always understood that 300mg is the total maximum 24 hour dose permitted so increasing is not something I would countenance. I think you need to define theoretical with your EP before even thinking about that"
Yep - I'll second that. Please make sure you check with your EP before taking more than 300mg a day. I haven't heard of anyone taking more than that dose before - however your EP will be best to offer advice but double check.
Now ablation. Technic's are improving all the time - at some point I'll have to have one. Boy will I panic when I do - however the fear will be worse than the procedure. None of this will be half as bad as you think.
When ablation was first mentioned, I thought that I wouldn't exactly panic but I was slightly worried that I would feel it hanging over me for months. Then the lockdown happened and I forgot about it. In June, out of the blue, I got a phone call from the EP and a few days later I got a letter saying they would be doing it in four days. On the day I wasn't worried and for me at least it was a piece of cake. Others may not have found it quite so easy but it is over very fast and you can usually go home the same day.
It is successful in about 70% of cases and you can worry about the afterwards afterwards.
If you've got the chance I think you should take it.
Thank you all for your kind replies. I know I'll continue to worry for a while, and wonder if this day, the medicine will continue to work or if I'll go into another issue with rate or rhythm... and it just feels like a sword over my head, about to descend, not only about praying the meds work at this dosage, but also when I read about ablations, new circuits being formed that lead to another ablation, runs of different AF types of heart beats or rhythms, and it's darned scary. Living with a clueless idiot who adds other stresses to my life doesn't help either.
I had two ablations in a month, one PVI CRYO ablation planned for A fib (left atria) which was succesful Jan 29th 2018 no afib since, unfortunately developed reentrant A flutter in right atria 9 days after, quite possibly promoted by the flecainide I was still taking for the A fib. I had the second unplanned ablation 26th February 2018. Again successful the flutter stopped there. I came off all drugs May 15th 2018. Not taken anything since.
Neither ablation a problem.
Now I have no drug side effects, i have no drug supply issues, I go anywhere I want (pre covid) without having to worry about what happens if i go into afib, or if the hospital nearest where i go on holiday will be able to treat me, or have I enough tablets, or remembering to take the dammed things, or putting up with the side effects, or worrying that every missed beat is the start of an episode. Or that going into afib is damaging my heart (Afib begets Afib) .
IMO there is less worry and stress with the ablation than with the drugs and their regime! And again IMO, worry is bad for your heart .
70% is a very good success rate. I also suspect this is the standard / average of all A fib ablations, including people who have other issues with their heart or health. I don't know if you have any other co morbitities, but if you don't then I suspect your chances are better than this 70% average. Furthermore if an EP suggests /agrees to do an ablation he /she will have also considered what your peronal chances are and would advise you if he thought there were other issues.
If afib returned tommorrow morning I would happily have another ablation tomorrow afternoon to try to stop it and to keep off the drugs.
I am not medically trained, this is just my view based on my 5 years experience since developing AFIB.
FYI I was 57.5 years old when I had my ablation and had no co morbitities.
I can’t offer advice because i am a newbie but can totally empathise with the terror of feeling your heart beating out of control and wondering where it may lead and what I should do about it ( Beam me up Scotty to a CCU would be my first choice ). So sending big virtual hugs . I listen to podcasts at night ( politics or gardening ) and try to do something to busy myself if up . How do people deal with them if they are out and about for example driving through the Mersey tunnel where no stopping allowed or on a plane ????
Awwww, thanks for the big virtual hugs, Peony! Back at you! Yes indeed, Beam me up Scotty!!
It worries me too about things like driving and having to plan where the hospitals are along the route that offer emergency care in case I need it!
Even if my heart starts tripping out while at home, my worry ratchets upwards and I wonder if I will go back into NSR on my own, how long do I wait to see if I go back into NSR, should I go to the Emergency Room, am I having AF or SVTs and how will they be addressed in the Emergency Room (apparently different medication treatments for different types of heart rhythm or rate disorders, and if those don't work, go straight to electrocardioconversion), or should I wait until my next dose of meds (yeah, 12 hours apart), is waiting doing any damage, etc etc.
Yes that is exactly how I think . And with most things is good contingency planning . With something uncontrollable and the circumstances unpredictable it’s not calming it’s anxiety making . Particularly if like me you are a control freak and normally prepare, plan execute . Arrhythmia puts two fingers up to all of that and goes its own way.
I have a dog daughter a beautiful golden retriever
My consultant said that I could have another 100mg for a maximum of 6 consecutive days. I never needed to take the extra 100 for more than 3 days, and only on 2 occasions in 10 years. At the time I weighed over 19 stones, (266lbs), and was, (and still am), 6'7" tall.
At some stage between annual visits to the consultant I went from infrequent paroxysmal AF to asymptomatic persistent AF.
Dr. Pierre Jais, my EP said that 300 mg. was the limit per day.
Now let me address the number of ablations which is one of your fears. If you are paroxysmal, especially with few episodes, then it can be in the "one & done" category.
Now AF begets AF; the longer you are in AF, the more AF you will get. The trick is not to get to the persistent stage , especially months of persistent, or it is almost guaranteed you will need more than one ablation. Because you are paroxysmal, your mind need not spin that you will have that many ablations.
Let me address invasive. You are not being cut open. There -will be no sign that you've even had a procedure.
Let me address burn. There is some literature about stiffness of the heart after ablation, but there is literature also about stiffness of the heart and AF. I am not up-to-date. Let me say, that I have had three ablations, and 15 months in sinus after the third, I feel absolutely great in sinus rhythm.
Let me address fear. When I first got AF, and given the beta blocker metoprolol that made my condition worse, I was strung out. And, yes, I experienced fear because I panicked about what was happening. Knowledge is power. Through knowledge I controlled my fear.
There are two routes I may suggest: first read up on AF on this blog; second use Dr. Google, although some would say not to. The trick with Dr. Google is to know how to be selective. For a neophyte researcher I would suggest the latest literature which will help if you type 2020 with the topic you are researching. So, rather than panicking and getting stressed out about what physically is happening to you, start reading about AF to calm yourself down. That's how I approached my anxiety. By finding out what was happening and what I could do, my anxiety dissipated.
I also read this blog which has stories of people's journey:
In this day and age, we are so fortunate to have knowledge at our fingertips in our home via the internet. In the old days, we had to go to the library which was very tedious and the information limited in comparison. I am more than amazed that so many patients do not take advantage of this great opportunity.
I challenged my GP regarding the meds he was going to prescribe for me for blood pressure after he first prescribed for AF metropolol which made my condition worse, then doubled my amlodipine 5mg. which triggered a six day arrhythmia among other things. So, I researched and came up with the meds for blood pressure he should prescribe which he agreed. I found that even he was not keeping up with the literature, at least for AF. When he retired last year after 40 years of practice, he said that doctors needed people like me to keep then on their toes, plus in all his year of practise, I was the one that researched the most. I took the statement as a tragedy, not a compliment.
We help ourselves and our doctors when we research our condition. So pleased to hear Cookie24 that you took that route.
Yes, EP initially prescribed flecainide and I think it may me feel unwell. After research and reading this forum, I asked for Propafenone. EP said, well, they are in the same class but he prescribed propafenone and it worked for me. He knows I am well read on this condition as I took articles from various medical journals with me to the appointments.
I have concluded from my experience that, whether it be GPs, cardiologists, or EPs, they have certain drugs that they favor (probably the ones that they've researched the most), and those are the ones they mainly prescribe. Even a friend pharmacist made a similar statement without my making it first.
So their prescriptions are curtailed to them and not personalized to the patient. Case in point, when my EP gave me a choice of either Verapamil or Diltiazem, I said I had taken Verapamil, so I guess I chose the wrong one for him. He then said, I will prescribe Diltiazem because that's the one I always prescribe.
For my blood pressure which had skyrocketed after my third ablation, again, neither the EP nor the GP were personalizing the blood pressure medication. The EP , who really didn't want to deal with blood pressure, merely asked which medications I had taken before that I tolerated best, and that's the one he prescribed. The GP did the usual, double the EP dose, try to add a diuretic (which he had stopped immediately upon my being diagnosed with AF), chose instead an ACE inhibitor which had not worked before, etc. The story goes on.
Frustrated, I decided to do my own research for blood pressure meds. But, unlike you I did not take printed articles to my GP appointment; I had them in my head which I rattled off. I did have some printed in case he questioned me. My focus was to find blood pressure medication compatible for an AF patient taking a rhythm drug, like you Propafenone. I was terrified of going back into AF via blood pressure medication which happened when my GP doubled Amlodipine 5mg to 10 mg that immediately sent me into arrhythmia for 6 days right after my second ablation. Clearly, the GP used the same old method , increase and double his favoured drug , and not consider all classes, without looking at the patient ( in my case, I also had AF). It was a blood pressure route isolated from AF.
I chose a combo therapy with drugs best compatible for AF backed by drug trial conclusions. My GP complied and even said that physicians need people like me to keep them on their toes.
In fairness to physicians, they cannot be expected to do copious research for each patient. It is also up to the patient, as you did, to do also some research to contribute to the treatment. Just sitting back, and in some cases like some of my friends, not even know the AF name of the meds taken, is an injustice to the times in which we live.
I am not trying to compliment myself, although I am complimenting you. I am stating it would be helpful to assist physicians but not necessarily to the degree I went. One should be involved in one's own treatment. These are my views only. In no way am I trying to impose them on the members of this blog. Most importantly, I am not an MD.
Just to say I had my one and only ablation in 2013 and still free of af and no meds except anticoagulants. I overcame my fear of ablation by deciding to go ahead with the proviso that I could change my mind at any time. I even contemplated doing a runner from the hospital on the morning in question🥵. Am I glad I went ahead.
I had an catheter ablation in July. Prior I was going into afib many times a day. The procedure was painless. The recovery was easy and I haven’t had an afib episode since. I still take flecainide 50 mg and metoprolol two times a day. I feel back to normal again. I’m so grateful to the procedure. I think fingers crossed I’m in the 70%.
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