I've been a member for a while, but have never posted before. I am a 62-year-old male with what had been long-standing but well-controlled atrial fibrillation/flutter (Flecainide 200mg and Metoprolol 50mg).
Quite suddenly these drugs stopped working and I am now in constant Atrial Flutter. I am on a course of 3 weeks of an anticoagulant awaiting a electro-cardioversion.
My main concern is whether the cardioversion will be successful and if it is, then what the next steps may be to maintain sinus rhythm. I don't tolerate exercise very well now that I am in constant atrial flutter and I would like to return to the various sports I play (ice hockey, cycling, golf, paddling) I am afraid that none of that will be possible for me in the future.
Does anyone have similar experience? My cardiologist has up to now advised against an ablation given my circumstances, but I am wondering if that may be my only option if drugs no longer work.
Thanks
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Quinney
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You don't say why you were advised against ablation. It is normally offered if the drugs don't work or are not tolerated well.
It may well be a case of wait and see after your cardioversion and you could be put on a different drug regime for support in the weeks following . Bear in mind of course that cardioversion may not work for long. I've had a considerable number which have lasted often for 12 months , occasionally for 6 months and 3/4 years before I reverting back to Afib. ( I'm not typical I should add ....)
Thanks for the reply Jalia. My cardiologist said if the drugs work then let’s stick with them. Now that it appears they may not I suppose I can pursue a discussion on ablation with him further. That said, he told me ablations are not without risk, may not work and aren’t a “cure”.
Your last sentence is of course so true ! However alot depends on the expertise of the operator as well as the patient . I think they are the nearest you will get to a cure nevertheless.
In recent years we have been advised to concentrate on lifestyle changes if applicable. Really the sort of things which would apply to living a healthy life anyhow viz achieving a normal bmi , trying to eat a more plant based diet and regular but not excessive exercise. I wish this sort of advice was available when I was first diagnosed nearly 30 years ago !
I’m in flutter almost always and according to a holter monitor report my average heart rate was 87 with a maximum of 110 and lowest at 48. That was a 48 hour monitoring period that indicated flutter 100% of the time.
I think it is importamt to understand that drugs like flecainide do not just stop working. There are no receptors as with an opiates for example. What happens is that the AF or flutter changes and gets worse as the hearat "re-models". You will know I expect the phrase AF begets AF. The more you have the more you will get.
It sounds to me as though you are under an old style cardiologist ( a plumber) rather than an EP , electrophysiologist (an electrician) and traditionally they can be quite anti ablation .
At your age and if you have no physiological reasons why ablation is unsuitable I would in your circumstances ask to be refered to an EP if only to get a second opinion.
Thanks for the reply BobD. I’m not a cardiologist of course but was intrigued by your comment about how Flec works. (Not receptor based) Could you expand a bit please. Is the problem then one of dosage?
To be fair to my cardiologist he told me that I needed to fail a rate control and a rhythm control drug before he could refer me for an ablation. I’m a Canadian by the way. I believe our system is quite similar to the UK’s NHS.
Again, thanks for taking the time to respond to me.
From one Canadian to another ---Grr to your cardiologist. You sound as if you live in the west coast with its backward mentality regarding AF. I have been there, done that. Get to see a reputable electrophysiologists -- there are some out here. Also, your cardiologist is not up -to -date on the latest literature regarding drugs and AF.
Hi, I have af & svt which used to be reasonably controlled with metoprolol and pill in pocket flecanaide. Then the last visit to hospital which was one of a few in a v short period of time for af (I think, due to hormones & recent pregnancy changing things) they decided upon bisoprolol and Flecanaide daily . In combination I’ve found these both seem to suit me much better. Please don’t feel you’ll never get back to what you enjoy. There is always something new to try / advice to take / new people to talk to for second opinions. From what I’ve read quite often, for no apparent reason, things can change again for the better, as quick as they changed before for the worse.. Keep your chin up and all the best for feeling much better soon
This was the same with me, over a period of years I was put on most of the drug options and each lasted around a year before the condition overcame the drug, I had pills in the pocket, increased/decreased dosage but apart from Disopyramide nothing really gave me much relief. After trying more or less all the cardio could offer I had an ablation, I had been recommended this several times over the years and used to ask 'would you advise your mother to have this' and whilst the answer from the cardio remained no I resisted, finally about 4 years ago now I had it done, it was unsuccessful and made me regret the decision, those for whom it works are the lucky ones but, generally speaking, you can often need more than one, it also made my heart rate dip on occasions and became dangerous so I had a pace maker fitted and before the lockdown I resumed with my exercise of swimming/table tennis/keep fit I also lost 5 stone in weight, changing my eating habits by joining Slimming World, both hubby and I, which helped. As someone else mentioned, a change in lifestyle can help, look at what you are doing/eating/drinking etc., and try and live fairly stress free, difficult at the moment I know. A/F caused me to have a stroke and I was advised to retire from my stressful job 20 years ago at 56, which I did and it did help however the condition persisted and with age got worse.
As for exercise, it should always be taken in moderation especially as we get older and listen to our bodies.......an ex leisure centre manager recommends this..........me! Good luck x
I’m now in persistent Flutter having gone several years without an episode. I used to get episodes 4 or 5 times a month with rate varying between 40 and 130
Since having my pacemaker fitted and the pacing rate sorted out I have experienced no further episodes of A/F in the last 4 years albeit I still take drugs, however since the weight loss have cut them down by half, I now take 2.5 mg Bisoporal daily, in the morning and 250 mg of Disopyramide at night together with a blood thinner. I am almost 77years old and suffered with this condition since my early 50's and as I got older the occurrence increased, became more persistent, put me in hospital a few times and also gave me a stroke, from which I fully recovered after spending two weeks in hospital, I doubted that I would ever be free of it but thankfully life is good again.
I was active at age 55 (12 years ago), like you when AFIB hit. It progressively got worse. Had nearly 12 cardioversions. At first they gave me a couple months normalcy, then AFIB returned sooner ... until it hit 2 or 3 times a week.
I consulted with an EP. She said I had Atrial Flutter (not AFIB, which I later developed, too). That's easier to repair than AFIB. You might need a simple ablation and be cured.
In the USA I have premium insurance, so after meeting with my Cardiologist (who was quite skeptical and negative, like yours), I went directly to EP for ablation for Atrial Flutter (which was a success). My right Atrium where flutter ablation was performed is still quiet to present day.
My younger brother came down with AFIB a couple years after me. He had group health insurance, which is not as good as mine ... where his GP served as a 'gatekeeper' who needed to approve further treatment.
They kept stalling and stalling him ... while I was telling him he needed an ablation. As his condition worsened ... his gatekeeper finally relented and he got the successful ablation he needed, although a year or more after he should have received it.
You will need the Cardiologist to prescribe echocardiogram and possibly a cardiac CT with contrast as pre-ablation tests. Also, he can tell you about meds and structure of your heart. They don't know that much about Electrophysiology. You need a world-class EP.
A world-class EP will give you the highest chance of success, whether an ablation is for flutter or AFIB. I had 4 ablations total: one flutter; 3 AFIB.
When my AFIB came back .... I didn't even contact regular Cardiologist .... bypassed him. I called a superstar EP in Los Angeles.
After the 3rd ablation, I had 10 years of normalcy. AFIB returned in AUG 2020, so I contacted one of the world's best EP's and had ablation on OCT 23. The latest one was the best ..... quick recovery .... no side effects ..... improved technology and procedures.
If you have 'Flutter', then it's an easy decision: ablation! If it's AFIB, then it's still easy for me: ablation. I don't want to be on meds. I want to stay active. IMO .... a world-class ablation is no worse than going to the Dentist. One day and night out of your life for possible years of normalcy or cure.
Although ...... most EP's know that (for AFIB) it often takes 2 procedures to get high success rate. My 1st AFIB ablation failed at 8 months. But, my 2nd AFIB ablation gave me 10 years.
Finally, I live a clean lifestyle ... organic foods ... no junk ... no alcohol .... no smoking .... exercise ... take supplements, etc. It still couldn't stave off AFIB. However, I still recommend maintaining optimal health.
Good Luck! with your treatment . . . Decision time is here or coming, just like with every other AFIB patient.
Flecainide can promote other arrhythmias including flutter.
I had a succesful PVI Cryo ablation for AFIB, and continued to take my 50mg flecainide x 2 plus 200mg mod release diltiazem rate control and 9 days after I developed re entrant atrial flutter rate controlled @140 bpm by the diltiazem. I had a second (simpler) RF ablation 3 weeks later to stop the flutter. The EP advised the flutter was likely promoted by the flecainide as there was no trace of flutter on any of my previous ECGs. I was asymtomatic except high HR In AFIB but extremely breathless in flutter, so I KNOW I never had flutter previously.
I stopped all drugs 3 months after the ablation and am still off them 3 years after ablation. I wish I had known to have had an ablation as soon as I had diagnosed afib as it would have prevented a poor period in my life caused mainly by the drugs and side effects.
If my afib returns I will have another ablation ASAP to get rid of it.
There is a great Facebook page called Cardiac athletes, which might cheer you up regarding getting back to an active lifestyle.
I don't tolerate any of the drugs well (except flecainide which is isnt helping) and amiadarone (gulp!!) and have just found out that my ablation has not worked. Like you, I'm feeling pretty despairing at the moment as I have been told it might not be worth doing a second one....
Definitely asked to be referred to an electrocardiologist though and get their opinion. Good luck and chin up (I'm trying to follow my own advice...)
I do not know if this is your one and only ablation, and what sort of mapping and catheters were used. But, to be told , "might not be worth doing a second one," would bring a call to action if it were me. You might want to find out what parts were ablated if you don't already know as well as what sort of mapping and catheters were used. I am assuming there is still a lot of room for play. So armed with your information, try to see an electrophysiologist who is at the top of his/her game (and maybe privately if you can afford it) before you accept your despair. In my case, I was given a 60% chance of success for my third ablation by my local electrophysiologist and an 85% by my international one. Obviously, I chose the international one (granted I paid for it myself), and I am now 1 3/4 years in sinus.
Thank you for this reply. By chance, i just got off the phone from my appointment with Electrocardiologist at Royal Papworth Hospital and he totally said it's worth doing again with the mapping technique this time. So relieved. Had visions of a lifetime of beta blocked zombie!!!
I was on flecainide for 3-1/2 years following an ablation for afib in 2017. I began to have episodes of flutter which would either resolve by themselves after a few days or require a cardioversion. When my last cardioversion in October, 2020, was unsuccessful, my EP suggested that I discontinue flecainide. The flutter episode stopped the next day. I do occasionally experience a bout of flutter or afib now and then probably caused by stress and/or dietary issues but it's not as persistent. So far, I've been able to revert to NSR with 1 or 2 doses of flecainide used as a PIP. So, to sum things up, it could be that flecainide is causing your flutter problem. Good luck to you.
Like others I reacted badly to flecainide. I had never had it before but the first dose caused atrial flutter with 2:1 block.
It’s common for a rate control drug like a beta blocker, verapamil or digoxin to be given alongside flec to protect against the pro- arrhythmic effects.
Thanks for your reply. No, I am still on Flec. I've been on it for a few years along with Metoprolol. I was taking 200mg Flec and 50mg Metoprolol.
When I went into persistent Flutter last month (I hadn't have an episode prior to that for 14 months and prior to that episodes were infrequent and reverted back on their own). Flec and Metoprolol worked very well.
My cardiologist increased my Flec dose last month to 300mg on learning I was in persistent Flutter. However it did not stop the Flutter. I'm still in it awaiting a cardioversion (need to be on 3 weeks of anticoagulant)
I'm not sure what drugs remain. I am aware of amiodarone but the side effects sound as bad as the disease.
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