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Avatar universal

long term permanent atrial fibrillation

I am 36 years old male; I have been in permanent atrial fibrillation now for about 3 years. I have had all the tests multiple times and there is no cause. I was finally able to se a good Cardiologist, He tells me that he will try to return my heart back to normal rhythm But he has told me that it is probably to late and that this should of been done a couple of years ago. He is going to try a drug effective in maintaining sinus rhythm, Electrical cardioversion and consider Ablation procedure but he has already told me that these procedures may not work because I have been in permanent atrial fibrillation to long.
I am currently on Diltiazem 360mg , Warfarin 5mg, and Clonazepam 1mg (when necessary). If nothing else works what’s next? I am at the Maximum dosage on my medications, and if  Ablation is not an option, Is a pace maker my next option?
Thank You Very Much
11 Responses
177337 tn?1310063499
My mom (71) has been in permanent A-fib for 2 years.  The doctors don't even try to get it back into normal rhythm.  She takes her blood thinner, tenormin (to keep the rate slow) and some type of dieuretic.    Does it bother you?  I know it would me.  My mom just goes on with her life and doesn't even let it phase her.  Again, her doctors do not seem concerned and have no interest it converting her.  She has seen two cardiologists.  I don't think a pacemaker can help with that rhythm.  I think that is for hearts that slow down too much.  It is set to now let the heart rate drop below a certain number.  My step dad has a pacemaker and every once in a while he goes into a-fib.  (they know this when they check the pacemaker).  The pacemaker itself doesn't keep him out of the a-fib.  
Take care
Avatar universal
Hi, At times I don’t notice it as much, but the day after anything stressful I have bad chest pains and an increased sense of my irregular heart beat, I’m light headed and some days in a complete daze. It’s been over 3 years and it is getting consistently worse every couple of months, I expect it to continue to get worse. I am told that they can not keep increasing my medication and that we are already at the Maximum dosage. At my last visit to see my Cardiologist my resting heart rate was 130bpm and I find that to be normal. I just want to know what come next if it continues to get worse.
Avatar universal
If your cardiologist is not an electrophysiologist (EP) run, do not walk, to the nearest EP.
Avatar universal
As far as I know my cardiologist is an electrophysiologist but I will ask when I see him on the 28 of Dec.
Once I convinced my family DR. to refer me to another cardiologist it took over six months to even get an appointment. Now I have seen him three times in the last month, and he does seem like he is going to do whatever it takes.
Even if I do get to go for an Ablation procedure, the waiting list here is over a year long.
Where are you? I got two ablations in 3 months here is Sarasota with no waiting time.
66068 tn?1365196781
Sorry to read about your problem.

Worse case scenario if symptoms become unbearable and all else fails is an AV ablation (to isolate the fibrillating atria from the ventricles) and the impanting of a pacemaker (to keep the ventricles beating at normal rates). Hopefully, it won't come to that.

As your cardiologist suggests you really should try: (near-term) meds and a cardioversion; and (long-term) an ablation. You're young enough that you have to deal with this to your satisfaction and so you should push for an ablation or mini-maze procedure even if thre odds of success are not optimal.

I'm also in permanent afib.  In my case it's by choice. I have few symptoms and my heart is well rate controlled. About 6 years ago, I was in afib for about a year.  My cardiologist was able to cardiovert me in the hospital and keep me in normal sinus rhythm with the med rythmol for over 5 years. During the last year, I kept lapsing back into afib and so after visiting an EP and talking it over, it was decided that I was a good candidate for "rate control". I'm a lot older than you and so it's not a bad option for me -- I'm relatively asymptomatic and able to lead a normal life in afib. I'm also a poor candidate for an ablation because I have an enlarged atria (5.4 cm)... but it is still an option if I wish to take the risk according to my cardiologist and EP.

Why does your EP thinks you're a poor ablation candidate? I suspect he's generalizing based on the fact that afib begets afib and after being in permanant afib for more than a year the heart remodels making it all the more difficult to return to normal sinus rythmn. But I just visited my cardiologist today and asked him if I continued on rate control if I was forever forfeiting the possibility getting an ablation/mini-maze in the future.  He says no.  He even indicated that if I wanted I could try another med and cardioversion and see how that worked out.

So I would encourage you to try one of the anti-arrhythmic meds (either rythmol, flecainide, tykosen, amiodarone, sotolol, etc.) and a cardioversion and see what happens. If that doesn't hold, you should insist on better rate control. A heart rate if 130 is too high and is leading to your symptoms (dizzyness, weakness, palps). My resting heart rate varies between 55 - 80 in afib and I feel normal. Of course, everyone is different.

I would really encourage you to get on the waiting list for an ablation.  You can always change your mind after trying other options in the meantime.  It would certainly be worth taking the chance at your age.

Best wishes

Avatar universal
Thank You Very Much for the information, That's exactly what I was looking for. I do have an excellent cardiologist but he does not like answering questions about the long term, at least not yet.
I will insist on being added to the waiting list for an ablation but I'm sure even that will take some time to accomplish.
Thanks again for all the information.
Avatar universal
Hi Darcyb.

I know it is two years since you posted your last comment.  I am 48 years old and seems to be in a very similar condition to what you were then.  I got AF about 6 weeks ago and had a electric cardioversion last week which only lasted 3 days before the AF came back.  I am concerned what in next for me and was wondering how you are progressing.

Avatar universal
Hi MickMc,
I still have atrial fibrillation occasionally, (1 or 2 times a month).  My Cardiologist prescribed a couple different drugs for maintaining sinus rhythm,  The one that worked for me is Flecainide, I take 150mg twice a day and I also take Diltiazem 180mg once a day. The Flecainide keeps my heart in rhythm, and the Diltiazem keeps it from beating too fast. When I do go back into atrial fibrillation I take and extra 100mg of Flecainide, and an extra 180mg of Diltiazem it then returns to normal rhythm with in 2 hours. I have had many cardioversions but for me they never worked for more than 24 hrs.
I am considering the Ablation procedure, but now that my atrial fibrillation is controlled I am going to wait to make a decision.
Let me know if you have any questions, I would be happy to help.
1730308 tn?1310066242
I am in permanent A/fib after a failed Maze treatment while having a Aorta Valve replaced (Mechanical) 6 years ago , prior to that I was an extremely fit person all my life but for about 10 years I was getting bouts of A/fib which just about drove me crazy.
I need a Aorta valve replacement as it was genetic and not caused by Ruematic fever or anything like that , I decided that I would opt for the Maze while they had me open, the surgeon said he had a 85% success rate so I felt confident ?
Well it is now 6 years since that was done and it has changed my life completely, I have lost my self confidence , I am 66 and I have retired and sold our business's . I am afraid of myself , I am afraid to get involved with organisations like I have been in the past ie., Rotary , Volunteer Fire service etc. I am on Betaloc / Warfain , Lipitor , and over the years they have tried me with a whole cocktail of drugs that dont do anything but poison you . I am suffering from depression and feeling really down .
Has anybody been in the same situation ?
Avatar universal
Happy Holidays- 37YOM in good health (despite hypertension) and  was recently found to be in A-Fib during a routine check-up (about 6wks ago)--completely asymptomatic.   I am going in for my second cardioverison next week.  Currently taking Diltiazem, Flecainide and Pardaxa twice a day; maintaining rate control in the low 80’s.  

At this point, I am looking for any info that someone is willing to share.  

Avatar universal

I am in basically the same boat as you. Just was diagnosed and have absolutely no symptoms. My at rest heart rate is still less than 70 without medication (it was 55-60 for most of my life prior to this diagnosis).

Based on what I was told by my Cardiologist, I'm surprised to hear that you are on medications and have attempted cardioversion twice. I'm merely on aspirin and there's no discussion of anything else to do. In fact, my Cardiologist said "see ya next year" after he determined it is lone A-Fib.

Was your heart rate high when you were diagnosed? That could be the reason for your path versus mine. Of course, I'm still trying to figure all of this out. Prior to 5 weeks ago, I had never even heard of this condition.
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