Silly question: I am trying to... - Atrial Fibrillati...

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Silly question

JMannion profile image
25 Replies

I am trying to understand af and when my father was diagnosed recently with af his doctor told him that af could be controlled with medication.  I thought the doctor meant that the symptoms could be controlled.  Am I wrong in thinking that as af progresses it cannot be controlled with medication?  My father has permanent af.  We had an appointment with a cardiologist today and my father explained that he has pulpaitations most nights when goes to bed and we were giving no real answers but deal with it .  He has been told that Albation probably is not an option and would just have to stay with medication.

This is the only site that I get any comfort from.  Thank you.

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JMannion profile image
JMannion
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BobD profile image
BobDVolunteer

Difficult question that. Yes AF is almost always progressive but by that we mean that paroxysmal usually becomes permanent with time if not controlled. Yes to  a point you are wrong. Since he is permanent there is little point in using an anti arrhythmic drugs with your father so presumably he is on a beta blocker to slow his heart during events and an anticoagulant to help prevent stroke. Both these are standard procedure.

For sure ablation has  less chance of being successful in people with permanent AF than paroxysmal but I wouldn't necessarily rule it out. It depends on just how bad are his symptoms. Many people in permanent AF are blissfully unaware of it until either they have a stroke or it is found during a routine examination.  Ablation does not improve long term outcomes but it can greatly improve quality of life. 

If he has not already been seen by an electrophysiologist who is an electrical specialist cardiologist rather than a mere plumber then it may be worth having an appointment even if you need to go privately to start with. Apart from ablations they do know more about AF than normal cardiologists so may be able to help.

Bob

Jimppy profile image
Jimppy in reply toBobD

"Mere plumber"..... A bit harsh. I have an excellent cardiologist and have never felt the need to consult an EP as I have complete faith in him. If you feel you're not getting the proper treatment or advice then absolutely by all means seek help elsewhere but I'm sure there are dodgy EPs out there too. 

maxred1 profile image
maxred1

Your father seems to be experiencing what I did. I am now a full year permanent. I was told on first diagnosis, we are here to make you feel better. I told the cardio I did not want that. I want to BE BETTER. They told me that they could not achieve that. So, a failed cardioversion, a year of pretty hefty medication, and an appointment next week with the cardio, will see where I am. The EP, who has been excellent, ruled out an ablation, however, if my QOL deteriorated, he would put me on the list. He advised quite pointedly, that if he were me, he would not push for an ablation. What have I done. I have tried to change my lifestyle, my diet, rule out alcohol, and live with the condition. I am pretty symptomatic, but recently, I have been feeling quite well. I investigated the condition thoroughly, have a very supportive GP, and forget that I am like this due to the meds. I also. Are a very determined effort to just get on with it. Right now, seems to be working. Good luck.

Mike11 profile image
Mike11 in reply tomaxred1

Why was he anti-ablation ?   The risks are pretty low nowadays so at worst it makes no difference and at best it cures the condition.  Anywhere in between these two sounds good to me !!!

Buffafly profile image
Buffafly in reply toMike11

I'm not enjoying being a killjoy but at worst it can make your QOL worse. That seems to be extremely rare but it can happen and is not always 'fixable'. I know this can be seen as scaremongering but if an EP says he wouldn't do it I would trust he knows more than I do, in the same way as I trusted my EP when he was very clear that I should have one soon.

Annekw profile image
Annekw in reply toMike11

Ablation is not always the answer!

I also have an excellent Cardiologist and a Medic husband both not keen on Ablation,so I listen to them!

I also have Rheumatoid Disease and take a lot of medication for this,so I'm happy on Apixaban,Digoxin,Bendroflumethiazide and Bisopral!

If you read this site a lot of people have had more than one Ablation,or even more!

cali111 profile image
cali111 in reply tomaxred1

They might make you feel better but you will not be cured as there is no cure when it is permanent.  I am permanent and my EP has said that it is not useful to ablate and more dangerous because of my age.(71)  Mine has now settled down and I take a small amount of beta blocker mainly for my blood pressure and Digoxin for the irregularity and this has been very successful and I rarely feel my heartbeat now.  I do suffer from breathlessness and accept that as par for the course.  I accept that I am ageing on the inside as well as outside so I might just stay as I am I do most of what I attempt except for long walks what more can I ask for?

I had 24/7 AF (I'm not using the word permanent because it has another possible meaning, i.e. untreatable), mine was persistent, i.e. there all day, every day. My AF was then controlled by rhythm control drugs successfully. I had no symptoms, but the drugs eventually had other side-effects, so I had an ablation. My EP said before the ablation that because my AF was there all the time, they would know straight away whether they had got it or not (his words). The ablation worked and I was AF-free (and drug-free except for anticoagulants) for 8+ years. Then some came back and I am now back on drugs again, different ones this time, and again these are working. 

I don't think that I was in (untreated) persistent AF for very long. I'm guessing 3-6 months before being put on the drugs which stopped the symptoms. 

Koll

teach2learn profile image
teach2learn in reply to

I had very similar experience, though my ablation lasted only 18 months. 2nd has been largely successful. So worth it to avoid beta blocker meds whose side effects almost worse than AF!  As I read more and more of others' experiences, it seems clear that there is a distinct difference between the types of AF, whether paroxysmal or persistent, depending on whether it is a rate or a rhythm type. Mine was rhythm, and neither meds nor cardioversion were  helpful. Only the ablation worked, and that spectacularly. When , after the 18 months, it started up in short ectopics and episodes, however, flecainide was controlling. Now after 2nd ablation, still get occasional ectopics and short "trills" with or without flecainide, but hey, I'll take that any day over persistent AF or lifelong beta blockers. 

My brother, who has the rate type of AF, after three ablations, is still on flecainide for control, which works for him.  Clearly, different types of AF require different approaches and have differing treatable outcomes. As Bob has said, the EP knows best.

Spoiler profile image
Spoiler in reply to

I am not sure if permanent afib means unable to cardiovert? By drugs or otherwise?????

Buffafly profile image
Buffafly in reply toSpoiler

A DCCV (electrical) may work for a very short time, hours or days. That is how EPs decide whether it is worthwhile to attempt an ablation. See peterwh's (PeterWh?) posts to get the picture.

JMannion profile image
JMannion

Thank you all very much for your replies.  I am understanding more on this forum than from any doctors we have seen.

Offcut profile image
Offcut

From my experience I was diagnosed in 1992 and have been under control with drugs unfortunately I have lung and other conditions that do not go well with the heart tablets So not the best answer but multi conditions are not helpful

maxred1 profile image
maxred1

The EP, a professor, told me he had stopped doing them. He also told me that if I went ahead and got one in the future, be very careful as to who did it. He was inferring some botch jobs. He gave me a less than 40% chance of success, and I would still be on meds of some kind. I require PVI, and there are some other issues. Remember this condition is very individual specific, and there is NO right answer. Everyone needs to find their own way, hence finding out as much as you can about your condition, and your own body. I would not rely on Doctors in this scenario...

Buffafly profile image
Buffafly in reply tomaxred1

I think you have made some very good points. Many things have to be taken into consideration and the more 'comorbidities' you have the less likely you are to 'take up your bed and walk' soon after the ablation. I seem to have had a very successful ablation but it has been hard going for a few months. 

Lizty profile image
Lizty in reply tomaxred1

This does seem unusual as the number of ablations appears to be growing.... and I believe it is mainline treatment now.  I was due for an ablation with an EP Professor last month.... but it was cancelled at the last minute because my INR had shot up..... rescheduling now...

I have to believe that something can be sorted via ablation, as my life has now almost stopped altogether as the symptoms have got so bad......

Yes... if you have few symptoms, just get on with it. But I actually have no choice left....

JMannion profile image
JMannion in reply toLizty

Hi Lizty

Can I ask are you in permanent Af?  And if so medication is not working for you?

Lizty profile image
Lizty in reply toJMannion

Hi JM.... No, not permanent, but paroxysmal symptoms... daily... so it is a real bind.  I have no other heart condition except a tendency to low blood pressure.... can be 100 over 60... so beta blockers are a complete no no. EP says other medication would interfere with  any exercise so they are problematic too.  I am a 66 year old previously very fit and active lady who now cannot hold a lively conversation without getting breathless. For me it is ablation or a high cliff jump... !  On the other hand, I have several family members who have/had persistent AF and they still have great longevity...and cozy armchairs..... Will be running in for my ablation next month....

JMannion profile image
JMannion in reply toLizty

Wishing you all the best of luck.  

maxred1 profile image
maxred1

Lizty, my perception, and please it is a perception, is that the vast majority of ablation procedures would appear to fail, if you are permanent. Yes, you may get some years, but if you carefully read this forum, a lot of re runs are required, also, my take is that few after ablation can come totally off meds. My understanding is that the current NHS protocol is rate control, with medication. Therefore, and it is the current advice I have been given, life change protocol, medication, and monitor. I am not saying I like it, but that is what I have. By the way, my medications is 300mg a day Dibigatran, 320 mg Digoxin, and 12.5 Bisoprolol per day. Not exactly a small dose, and yes, this really bothers me, but what alternative?? I read on here people moaning about 2.5 Bisoprolol per day, and how it makes them feel. Try 12.5, and until very recently, it was 17.5...........If I could ablate tomorrow with guaranteed success, trust me, I would be in line right now.

Lizty profile image
Lizty in reply tomaxred1

it is two thirds success rate first time, and even without full success most people get some relief.  A second ablation increases the success rate and can also improve matters..... I no longer care about guarantees...just some improvement!  With my first ablation next month

 at St Thomas' Hospital London, I doubt if I could be in a better place...

maxred1 profile image
maxred1

And I wish you the very best of luck, and success with your procedure. I am sure it will be fine for you.

DavDug profile image
DavDug

I have not forgotten what it was like to have AF. It trailed on for 7 years with permanence for a year. A time of trying all sorts of drugs and tests and getting nowhere fast and certainly wasting time and lost earnings. It took the help of the AF Association to get me into the hands of an EP with the second ablation proving positive and a feeling of day from night. My cardiologist was not keen. The success rate was 70 to 80% first time. That was good enough for me. With both high frequency and cryoblation proving positive and with techniques improving I think the odds are in favour of turning the process round. Why not start with ablation and leave all those dangerous drugs until last. Yes, everyone is different but if you go to Norway ablation is standard treatment for AF.  Other thoughts on this would be appreciated?

JMannion profile image
JMannion in reply toDavDug

hi, DavDug, can I ask when you had AF permanently did you have symptoms?

maxred1 profile image
maxred1

So, met with the cardio this morning, all appears well. Blood Pressure perfect, HR perfect, they did a resting ECG also. Now officially diagnosed as permanent AF. They want me to come off Pradaxa, as my score is zero. Stay on medication, the Digoxin, and the Bisoprolol. at the same level, high, and now monitor through my GP. Anyone any thoughts??

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