Brief history, I had two ablations in 2019, the second one being in Sept. I'm currently 56 and like exercise. Since 2019 I stopped competing and training for triathlon and knocked everything back loads.
Around Oct 21 I noticed arrhythmias, looking back on my notes it mostly seemed to start with atrial tachycardia that led into atrial fibrillation.
Since then I've been on 50mg Flecainide twice daily and 1.25mg Bisoprolol since.
Since May this year I started feeling more & more dizzy, out of breath and with lots of ectopics/PVCs/PACS/SVTs etc. I even got dizzy bending down to put on shoes/tie shoe laces.
My resting HR had increased considerably, was 51 bpm on a 21-week avg, and went up to 64 avg during May and June a 25% increase
My walking heart rate avg increased from 82bpm 18 week average to 103 8 week average - a26% increase
Respiratory rate increased from 11.1 breaths/min to 14.1
My heart goes to say 120/130 when running/cycling even jogging super slowly to the end of the road and just stayed there, it didn't go up when out of breath or down when coasting down hill or stopping etc
I was getting more and more regular arrhythmias 24x7 - A combination of a Wellue ECG with it's AI analysis showed me having sinus with supra ventricular ectopy; atrial bigeminy, Atrial fibrillation, atrial tachycardia, sinus with single pacs
I stopped the Flecainide on the 4th July completely and I am now back to feeling normal, no more ectopics, no more out of breath, no more dizzy spells, no atrial tachy when doing easy exercise!
My stats have dropped back to where I'd expect. I've just come off a telephone review with my cardiologist who agreed I made the right decision and wants to follow up in 6-8 weeks to keep an eye on things.
He's suggested staying on the Bisoprolol and using 100mg Flecainide as a PIP if I go into AFib and it doesn't stop quickly.
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kitenski
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Thanks for letting us know. Flecainide can be a very effective drug, but requires resting and/or excersise ekg monitoring both before starting, after any dose increase, or whenever you may not feel well. With you -- your doctor switching from daily to PIP Flecainide seems like the right decision.
Sadly as far as I know not many (any?) UK NHS hospitals/consultants or Drs perform regular ECGs or testing when prescribing or changing flecainide dosing.
I'ts normal protocol in the US. If not where you live, then I would speak up and ask. Or minimally, get yourself a home ekg recorder like the Kardia 6L and send in the ekg's periodically to your doctors for review.
Do you have the Wellue 24 hour ekg with chest patch? I'm considering getting one. If so, do you use it with the patch or chest strap? Does it give real time alarms, or just play back analysis?
Only hesitancy is that it may give TOO MUCH information. LOL.
identical in function, is rechargeable and for me the main problem was Kardia kept classifying my readings as unclassified, even when I paid the extra to Kardia Care. The AI analysis has been spot on so far for the Wellue. Their website says they will start charging for it soon....
I have replied but must have missed something and not up to doing it again- sorry - I have dreadful fatigue now which the flecainide adds to but it mostly keeps my heart in order!!
for me yes I wanted to know what the heck was going on with my heart! Unclassified wasn't helpful! It's very similar size to the Kardias and currently £54
Interesting Nugger. I'm on 2x50mg flec, 1.25mg bisop and 2x5mg apix/elaquis for last 3.5 years. 2 cardioversions during first 4 months of af diag (Nov 2019.) All good since until 3 weeks ago when afib returned. Await cardioversion (mid September) Have be told by cardiologist to stop bisoprolol until further notice. Afib continues. Main symptom other than palpitations is exhaustion even after relatively moderate exertion.
Refused statins which were prescribed 18 months ago for cohlesterol 6.5
Just wondering how you progressed after ditching your meds?
Cardioverted 2018 (third since 2015) no meds at all,then july 2021 whent into afib,cv myself using max flec & bisop, 2 week later,afib again, cv myself again. No problems since.Cycle 60 miles a week,100 press ups a day ect ect doing 👍
NO,if i sat on the couch & had afib all the time then yes i would,as we get older the risk of brain bleeds,start to outweigh the risk of strokes due to clots, i do fast every week for 40hrs & keep active,watch my weight & eat mostly healthy 👍
can you wear the wellue while exercising and sleeping? I have a frontier X which I pretty much wear all the time atm as things a bit unstable, but it classifies all non-sinus rhythm and low overnight HR as ‘other’ which can be a pain for a long trace.
it's a bit up in the air as to buying the AI package....currently it works without additional payments despite the website saying its free until 31st July!
Well - a salutary tale. Thank you for posting. Anti-arrhythmic drugs like flecainide and sotalol tend to attract positive comments, so your post is interesting and fits with what my consultant discussed with me. I was told that I couldn't take either as they tend to lengthen the QT interval, and I already have a wide QRS thanks to LBBB. Amiodarone was to be the next if my ablation for atrial flutter in 2019 had not come along and that, proven safe in low doses, receives some very negative comments on forums.
Now I get daily ectopic beats and occasional AF, controlled so far with bisoprolol (1.25mg daily). I don't know what will happen should that become more frequent.
We have a young relative, a keen cycler who pushes herself far too hard, I suspect, and who is having some symptoms similar to those you describe but less frequently. I lent her my Wellue but she hasn't been able to catch any symptoms, so her GP is arranging for more tests.
How are you finding the Wellue? I rate it very highly. I've bought the touch screen version, too, but the AI on that is more limited, even though still excellent.
Prolonged exercise is a known factor for arrythmias later. I used to do Triathlons in the 80s and 2000s - but stopped all exercise (except swimming) after having too many palpitations when cycling. I take flecainide (slow release) for the heart rate but there are supply problems at the moment in France where I live - So my dose has dropped a bit - without any noticeable reduction in effectiveness. I might just leave it on that level.
That's interesting. Our friend's daughter, in her early 30s, is a very keen racing cyclist and pushes herself too far according to her parents. She's now awaiting checks for spells of fast heart rate, palpitations and dizzy spells.
Ppiman the haywire heart book explains the link between endurance exercise and arrythmias....It's seen a lot in triathletes, endurance runners/cyclists and XC skiers! There is at least one professional triathlete I know of currently competing after an ablation for AFib.
Ppiman Wellue seems to working very well (touch wood). My trigger to do something years ago was when I getting a HR over 205bpm when pushing myself on the bike. a 3 day holter picked up A Fib. Hopefully your young relative is ok!
This is a timely post for me. I was diagnosed with paroxysmal atrial fibrillation last year and have been taking sotalol. I have recently changed to flecainide and digoxin On Monday I had AFib for 11 hours with heart rate over 120 for most of this time . Today I’ve had the same and felt light headed for a while this morning. I don’t know if it’s due to the AFib or tablets but I haven’t had episodes as long on sotalol. I’ll need to discuss with my specialist.
Thanks Steve. I got a short notice appointment with my cardiologist and he agreed with you that it was due to AF. He changed me over from digoxin to verapamil and increased my fecainide dose. He’s written out a plan of how to adjust dosage with changing blood pressure and heart rate.
Sounds like you were right to be proactive and have been given good advice.
In your case exercise may be a key issue, I would suggest reducing to a low level and building very slowly to a moderate level.
Also, keep a diary on medications taken, exercise, other possible triggers and episodes incl their length to provide your cardiologist with extra info. So many ways of addressing AF eg my Naturopath prescribed, when I consulted him some year back, just a magnesium compound and CoQ10 for his AF patients.
You need to have a blood test of your Red Cell Magnesium level and CoQ10. The Naturopath said both should be in the upper quartile minimum. So the level of dose will depend on your individual level. For some unknown reason I could never lift my Magnesium level (possibly my high dairy/calcium diet was blocking it) but got my CoQ10 at the right level and settled dosage at 200mgs weekdays and 100mgs weekend.
I did not know that the level of Q 10 can be checked from the blood. Are these special blood tests? Should I just tell my doctor that I want magnesium and Q 10 tests?
Nothing special, in the UK my local surgery took the blood and I then posted it to a private London lab to do the tests. Booking & test results had to be through my Naturopath.
I'm from Croatia. I don't know if it's done in our country. I'll ask my doctor. I know that magnesium is done and they did it to me several times and my magnesium was within normal limits, but Q 10 was never done and I don't know if it can be controlled from the blood in our country.
Ok, Thank you very much for the details. I did a standard test. I will try to come up with such a test somehow, maybe private laboratories have them. I buy that Magnesium taurate 350 mg in capsules and drink it occasionally and sometimes Q 10 of 30 mg... but that's everything is short and I don't see any difference. Obviously you need to know and dose correctly.
I’ve been on Flecanide since 2015 , 200 mg a day. Recently in hospital with a stomach unrelated issue when it was discovered that the flecanide was now causing more harm than good. So under the supervision of the hospital cardiologist unit my flecanide was stopped and my Bisoprolol upped which meant three extra night’s in hospital. Needless to say I was very worried about coming off flecanide as my previous cardiologist had told me that’s all was keeping my AF under control. Three weeks on and I am delighted to say no problems without the flecanide so far .
Hey, what dose did they increase your Bisoprolol to? I used Flekarid 50 mg x 2 and Bisoprolol 2.5 and nothing helped me with SVES and VES heart skips. They took me off Flekarid and told me to increase Bisoprolol to 5 mg. I haven't increased the dose yet and I'm still struggling with arrhythmia. I will still have to try 5 mg of Bisoprolol, and I'm afraid that won't help either. I'm afraid of disappointment.
Great, I hope you're still doing well. I will also try increasing the dose of Bisoprolol to 3.75. After how many days can I feel the effect of the increased dose of 3.75? I once increased it for only two days and I didn't feel anything working, so I don't know how long it takes the medicine to work from the increased dose? Sorry if I'm boring.
I've been on Flex twice over the past 30 yrs. First time was following my first ablation (2009 @34yo). I was on it that time for probably 6mos. I was also on Metoprolol @ the time. Besides not being able to get my heart rate to beyond the 140's. I also had terrible nightmares.
The second time was in 2018 following my second ablation. At about the 3mo mark I started having runs of affib. Was cardioverted a couple times but could not maintain NSR.
I was then put in to Tykosin. And that would not keep me in rhythm either. However, the longer I was on it the better it worked.
Now what was odd about that is during my 3 days in the hospital as they were adjusting the dosage I started getting terrible back pain. 1 month in I couldn't walk from one end of my house to the other without stopping to take a brake. By early July I was eating Oxy like candy just to get by.
I was scheduled for ablation #3 mid July and stopped the Tykosin and a few days later the back pain went away.
Following the ablation they had me go back on the Tykosin and a few days later the back pain returned with a vengeance.
Come to find out I had a bulged and herniated disc. That I obviously had for some time but it appeared that the Tikosyn was turning the pains switch on and off. I spoke to several doctors about this anomaly and none had a sound reason for what was going on. But none of them were willing to count out the Tikosyn.
It may just be that your heart calmed or desensitised somewhat... maybe the exercise had been over your tipping point?
I certainly know what so many do - that exercise is a massive help (a must do, for me!) but, go beyond a certain point and - oh, oh! Diminishing returns and rapidly.
How Flecainide fits in to the picture is, for me, directly related to my other behaviours. I find it's a really effective buffer and will give me months in a row of zero Afib.
However if my life gets extra stressful, or I drink alcohol, or eat badly, or get a virus, etc., it'll be overwhelmed - although increasing the dose is effective as protection (along with a quick bit of self care!).
My maintenance is the same as yours was, 75-100mg + Bisoprolol 1.25 and that's generally very effective if I time doses carefully for evening /night protection.
I guess my point is that the dose you were on may not have been much use or even counterproductive depending on the state of your heart after your lifestyle changes.
Ive been on Flec since April, 100mg twice daily as the AF was becoming daily. I had an ablation early May and still on the same dose. Previously on 100mg PIP
I felt dreadful when I started it and still feel poorly now.
Bisoprolol would not control the rate while in AF although only went to 5mg, still going at 160BPM even with this and when in NSR down to 51 BPM resting
ian16527 Wow, your heart is 160bpm 3 months post ablation? I'd try and discuss with your consultant why you are still on Flec & Biso after an ablation?
They tried upping the Biso to slow it down without any effect when in AF, only it slows it down when not in AF to around 50 BPM sometimes down to 47 BPM
Post ablation it has gone up by about 10 BPM to 58-60 but the Biso has also been lowered to 2.5mg
I was supposed to have a follow up in 3 months but now its in October
Your decision makes sense. Our relationship to our meds often changes over time. I found I was able to reduce my use of a beta blocker by 50% after over a decade of use. Increased dizziness was the clue. I asked my cardiologist if the reduced dosage was clinically efficacious since it was below accepted levels. His reply was, "it appears to be the right dosage for YOU." And yes, it does work at this dose for control rate. For me.TY for your story.
Flecanide toxicity are both non-cardiac and cardiac. Non-cardiac symptoms include nausea , vomiting and seizures. Cardiac symptoms relate to both brady- and tachyarrhythmias, including palpitations, syncope, and cardiac arrest.
It is known for inducing what is called a Brugada phenomenon which can be associated with dangerously fast erratic heart beat which can sometimes be life threatening. In my experience, after 7 years of Flecanide, out of the blue I started to have erratic ectopic beats especially with walking or exercising and was found to have a very abnormal EKG showing this Brugada pattern. I was immediately taken off the med. That was 3 yrs ago . I remained on just a beta blocker 50 mg in morning and 25 at night. So far so good with only one breakthrough episode 6 months ago (HR170 but was in sinus rhythm ) which was after becoming dehydrated after a long flight and change in climate. Many docs here in US avoid Flecanide but sadly none of the alternatives aren't much safer.
Hope you things settle down for you and you are able to find a regimen that works with minimal untoward effects
I was put on Flecainide 50 mg twice a day and from the first time I took it, it caused other arrhythmias. I had to go off it. My EP said to take it as a PIP and it worked famously for that every time. AFib gone in two hours time after taking it. I used it for two years that way. I had a MiniMaze last year and no AFib since so I don’t need it any longer. I still keep it with me though until my fear goes completely away. I am not sure how long it would have worked for me that way but glad I don’t have to find out. That was my fear that Flec wouldn’t work this time.
Well Kitenski you got a lot of response already from many people, but i felt something similar with your post to my own experience, so I'll share it for your reference. Firstly though every person is different and heart arrythmia is complicated with so many variations of defects to control and manage.
I am a fit person involved in sports activity from very young age, I was burdened with a Tachycadia and irregular heart beat from 17 years of age, it did not appear frequently , couple times a year mostly during exercise (football/soccer at semi pro level) and didn't really impact my life too much. Then at 43 years of age in 2005, having had considerable stress within my job, the arrythmias started very frequently (180-220bpm), i was still competing in 11 a side football, but had to stop. 2 years later I had a double ablation that solved the tachycardia but not the AF. However the AF laid pretty much dormant and I didn't appear, I was not on any medication and could fully continue high load exercise. 2 years ago age 59 the AF came on very frequently and after further tests have been on 100mg flecainide and 2.5mg of bisoprorol each day. I have resumed high level of exercise and only occasionally have some AF spells, which last for a couple days. My av BPM is around 44. I haven't really had too much side affect apart from some tiredness in the early stages of the medication and am quite happy i can continue pretty normal life, fingers crossed.
I just wanted to share my experience with you, as i said we are all different , have somewhat differing causes with differing results.
Oh my goodness yes, I have my own very long terrible story with this drug. Like you I stopped it and wow what a change!! Thank you for sharing. Blessings...
Quick update, I'm still off the flecainide since July and just taking 1.25mg bisoprolol daily. I had a small episode of Afib early Nov, I took a 2nd 1.25mg biso and it was back in sinus 20 mins later.
My only major issue now is really feeling the cold in my feet and toes which is a known side affect of bisoprolol! I am going to look into taking carvidolol again (tried once before with flec) but it wasnt as effective. However looking back that could well have been due to the flecainide actually being pro arrythmitic for me.
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