Beast is Back: Three weeks after my... - Atrial Fibrillati...

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Beast is Back

DKBX profile image
DKBX
18 Replies

Three weeks after my fourth ablation, and advised to drop flecainide, the beast returned. (Kept on metoprolol & Xarelto). Started after an afternoon nap for no reason at all. Confirmed by nurse with ecg yesterday and put back on flecainide until appointment on Monday with ep and another ecg. I’m hoping for a cardioversion to return to nsr or an auto convert.

The strange thing is that I’m now in acceptance mode rather than resistance. I keep thinking, “I’ve been slowed down but I’m still alive. I’ve lost my vim&vigor but not my determination to just keep plodding along.” After 10 years of battling with the beast, using every drug and procedure in the arsenal several times, following the lifestyle recommendations, etc etc … it’s still there but so am I.

I’ve given in but not given up. Good luck out there. Hope you who are still resisting have better results.

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DKBX profile image
DKBX
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18 Replies
etheral profile image
etheral

Ask about Tikosyn (dofetilide), has worked for afib for 4 years for me and kept me out of heart failure and other complications.

Far far to early to give in. It takes at least 3 to 6 months for the scar tissue to heal

Have you seen this factsheet?

heartrhythmalliance.org/res...

Jalia profile image
Jalia

Interesting to read of your experience as someone who is 8+ months post 4th ablation. I also am of the mindset of acceptance rather than resistance should AF return. I've had about 29 years of it and have had so many months now AF free that I can't imagine it returning ( says she.. ) My EP has kept me on my anti arrhythmia drug Disopyramide " for the time being". I have no problem with this.

Wishing you well

Paulbounce profile image
Paulbounce

I'm sorry to hear this DK.

"I’ve given in but not given up"

It's still early days yet. Don't give in. It's to early yet to know if it will work for you. I wish you the best of luck - hold fire for a little longer before you can say for sure it hasn't worked.

All best,

Paul

saulger profile image
saulger

DKBX, you are right. AFib is no reason to give up on life and enjoyment.In addition to catheter ablations, a more successful outcome is achieved by thoracic minimally invasive surgery, from small incisions on the side of the chest.

I joined a Facebook Group called "Wolf Mini Maze" and have been following first-hand testimonials of past patients. I am not insured for it and the cost is high (for most of us) at around $150,000 in Houston, Texas.

facebook.com/groups/4129396... (free to join)

Singwell profile image
Singwell

Acceptance- it's a weird process! Not giving up, or giving in but being able to say 'I'm here, and I know you'. You can still live your life. May all be well.

CDreamer profile image
CDreamer

Sensible attitude. It is a lottery and whether or not it returns it’s acceptance that’s important so you can get on with living your best life with what you have. It’s not a fight or a war so there’s no ‘giving up’ or ‘giving in’.

You have to deal with what you have in the best way you can - period. It’s not been unknown that when acceptance happens, lots of unexpected good things also come along.

belindalore profile image
belindalore

Maybe the metoprolol is causing you problems? For me it made my symptoms much worse. Drs don't seem to know all the side effects of these meds. Sometimes we have to do our own research.Hoping you feel better soon.

Nugger profile image
Nugger

Have you never cardioverted, using flecanide & beta blocker ? This is what my cardiologist advised me to do & it’s worked, the last two times, before that I waited 5 months, which was hell!

DKBX profile image
DKBX in reply to Nugger

Drug conversion has never worked for me. Always needed the extra cv.

Snowgirl65 profile image
Snowgirl65

I realize how disappointing it is. Your attitude on the setback would surely help since resignation is certainly better than anxiety. But don't lose hope; you're in the early stages of the blanking period. Coming off Flecainide so soon might have triggered the episode, as I think coming off Dofetilide, I suspect, had triggered mine at the time. I hope you can be cardioverted soon as that jolted me back into NSR after complications from my first ablation. Wishing you luck -- and NSR soon.

Spoiler profile image
Spoiler

I completely understand….. I call mine the devil himself, as it can come from nowhere at a vicious rate. Last night mine fired up at a rate of 175 as I was getting ready for bed, I took cardizem to slow it down, but still stuck in it? Rate now 115-120. I also take metoprolol which never touches the rate control for me. I am strongly considering a second ablation….I have anxiety about it because I had complications and ended up in ICU

DKBX profile image
DKBX in reply to Spoiler

I asked my ep beforehand, “if I were your father, what would you advise.” He responded , “do the ablation, dad,” I’m still trying to decide if it was worth it.

Spoiler profile image
Spoiler

Well they did say they found a lot of scarring which was not expected. I went to the Cleveland Clinic, #1 for heart in the US. They wanted to do a second one 6 months after the first, I chickened out, but now thinking maybe I should have. I just do not know, but it impacts my life dramatically. Tough choices

lockerbie profile image
lockerbie

Had to reply. Don’t give up . After my fourth ablation I was still getting A Flutter for a whole year. Not all the time. Rate about 120, lasted about a week , went away and came back. Finally after a year it stopped!

Reared up again a month ago had a CV , back in NSR. Who knows for how long !

Trying to figure out my next plan.

So, it can take that long to stop.

All the best!

MissTia123 profile image
MissTia123

I have to take Flecanaide regularly now or it returns. Metoprolol is awful and slows me down and I work on getting things steady then slowly reduce the dose. You cannot stop any of these drugs suddenly! My Covid booster set the AF off again on a wild ride for three months then finally got in to see my EP and he doubled my medications dose for a month and now its settled I am slowly reducing again. A pill cutter is your friend here!

listerines profile image
listerines

Agree with many others that it is still early days yet and you could certainly find more heart stability in the coming months once the scarring fully forms after your most recent ablation - give it another month or two before figuring out next steps. Postive though that you are coming to terms with your health situation and doing what you can to move forward (am sorry you are going through this right now though).

Not sure if this helps or hinders but my good friend's brother has struggled with high rate afib for 10+ years and has had lots of treatment/ med setbacks in the past until about 3 years ago when he had his 8th (yes eighth) abalation and has been afib free since then. Keep safe

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