A-fib: Have had 3 ablations to no avail... - Atrial Fibrillati...

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A-fib

Jeff8288 profile image
18 Replies

Have had 3 ablations to no avail. Am now on 100 mg flecainide twice daily. Dr. has had me stop the flecainide twice and the a-fib starts after one week. I don't want to stay on meds, but I cannot live my life going through the awful episodes.!

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Jeff8288 profile image
Jeff8288
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18 Replies
Musetta profile image
Musetta

Hi Jeff,

I sympathise with you but keep your chin up - perhaps it's better to be on life long meds if it prevents your awful AFib episodes or at least diminish their severity , this can only be a good thing. All the best to you from down under.

Cheers,

Musetta

Jeff8288 profile image
Jeff8288 in reply toMusetta

Thanks for your concern.-----

Jeff - did you have ablations or cardio-versions? 3 without success is bad luck !! Did they make any difference at all?

I'm on drugs for life, 3 years so far, Disopyramide in my case. Sandra or someone was on here was on it for 12 years I think, so fingers crossed!

Koll

Jeff8288 profile image
Jeff8288 in reply to

Thanks Koll,

It was three ablations that I had. No success with any of them. two with one Dr., and after second without success he told me to go to Mayo clinic for the third and last. Couldn't get there so I went to Northwestern and that one did not work either. I suppose I will be on Flecainide for life! I was on amiodarone but Dr. said that damages the lungs. Can't find out if flecainide does damage with long term use.

Hi Jeff, can only suggest you max out on lifestyle changes and supplements (as detailed on this Forum) with advice from Alternative Practitioners.

I have been on the same dose of Flecainide + lifestyle/supplements for 21 months now and no AF; previously I had 9 episodes of varying lengths in a month.

Good Luck!

Jeff8288 profile image
Jeff8288 in reply to

Sounds like me. Had 3 episodes a week when not on flecainide. So happy that something works to keep the episodes away.

Franny50 profile image
Franny50 in reply to

There is a tremendous amount of recent research about the ameliorative effects of exercise and weight loss on AF. It may all be tied in with the rapidly growing problems of metabolic syndrome and the resulting diabetes, HBP, etc.

Of course thin folks have AF also, as well as regular exercisers, but I am taking all the research seriously, as I am overweight, and am on a low glycemic/low carb diet, and taking many supplements, including magnesium, hawthorn, resveratrol, quercetin, ribose, etc.

So far, so good after 3 months. But AF is the devil that can confound your life and your best efforts to keep it at bay.

I would be very interested to know what supplements you and other folks take.

in reply toFranny50

I take an Mg compound (Nutri Ultra Muscleze) and Krill oil. Previously CoQ10 until I tested mid-range & therefore OK.

Re diet I have followed westonaprice.org recommendations for 6+ years - its surprising but with high quality organic food and lots of walking it works. I don't need my scales anymore.

Franny50 profile image
Franny50 in reply to

Thanks very much for your reply.

I am constantly mining the web to see what's out there and what works re: afib.

I have a small farm in the SE U.S. and grow many of my own fruits & veggies w/o industrial pesticides. The farm work, sunlight & fresh air are fabulous.

Weston Price was a genius, and I will definitely look at the website. Thanks again!

in reply toFranny50

Farm sounds great, very envious. Another idea, not directly on topic, have you considered care farming as a farm diversification flatheadcarefarming.wordpre...

Jeff8288 profile image
Jeff8288 in reply toFranny50

I dont take any supplements, just vitamin d. I am not overweight and try to eat properly.

dmac4646 profile image
dmac4646

why did he stop the Flec - was it a bad reaction ?

Jeff8288 profile image
Jeff8288 in reply todmac4646

No reaction to the flecainide. I was on it for a year and Dr. wanted to see if by some chance the ablation worked so I could get off the flec.

dmac4646 profile image
dmac4646 in reply toJeff8288

Can see why he did that , but speaking personally would rather use the Flec particulary at those doses to keep af at bay. I havnt had an abalation my EP says stick on Flec ( which works at 150mg a day) and see if other solutions appear - so use Flec as a holding drug for now.

BobD profile image
BobDVolunteer

I'm not really sure what you are asking here Jeff. The choices are obvious and limited if your EP feels that further intervention is unlikely to help. AF is seldom life threatening merely life changing and the first step is to accept that AF is in your life but not allow it to be all of your life. Changes to diet. adding supplements and avoiding triggers can all help quality of life but only you can do that. The long stop may be an AV Node ablation and pacemaker although that will not stop the AF. but merely give you a steady ventricular rate.

Speak to your EP about the future before you get too down hearted.

Pbow profile image
Pbow

Don't dispair, it took four ablations to control my AF, but I have now been in sinus rhythm for a year.

Misseyj55 profile image
Misseyj55

Hi Jeff8288

I too sympathise with you...I've only had 1 ablation and due to complications the EP doesn't want to attempt another...I didn't have true success with it and felt miserable for a long time...and amongst other problems ended up on Mirtazapine for anxiety as well...the long and the short of it is that by taking Flecanide you are not having AF episodes and can enjoy your life better....don't let it consume you if you and make the best of what you have....medication can be life changing for the good and many people on here are on Flecanide and it helps ..... I have asked about this medication too.....one person said its like magic for the heart and I agree with her wholeheartedly...seeing your EP has suggested something better may come along and being prescribed Flecanide suggests you have a strong heart too ...one of my specialists told me that so I hang on to that thought...keep us posted and try let yourself relax a bit ......It does feel better ...just saying ..all the best...

AnneTS profile image
AnneTS

Hi Jeff. You have my total sympathy. You and I appear to be in the same boat. I developed serious heart block when I went back on my old dosage of Flecainide and so I can only take 50 mg twice a day backed up with 400 mg daily of slow release Diltiazem and still my heart thinks it is ok to go into paf! I have had a 7-day Holter test and see my EP on 20th January. The decision then will be whether to have a 4th Ablation or to have the pacemaker and the inevitable ablation a short time later. The latter is, of course, the step of no return and as I have a perfectly healthy heart my EP is not keen on doing this if at all possible. There comes a time, however, when the heart will not play ball with ablations or changes to medication and there is little more that can be done at the moment except that final step. Like me you might wonder whether it is best to go for the 4th ablation and hang in there until a solution is found for our problem but it is so tiring and emotionally draining to constantly have your heart being contrary. Apparently there is about 10% of the population who have our difficulty. However it is really great that 90% of afibbers can be helped to live a normal life one way or another. Hang in there! Anne

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