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Seems to have progressed...

joebob profile image
15 Replies

My AFib seems to have progressed somewhat of late. I woke up in AF Friday morning but after 100mg of flecainide I was back in NSR after an hour. I had another episode on Saturday night which lasted until Sunday afternoon even after taking extra Flec! I went to see my GP yesterday but he doesn't want to mess with my dosage so sent a request to my cardiologist for an urgent appointment. Then I woke up in AF again today so took 100mg of flec and then I'm back in NSR after an hour but the medication is making me feel aweful. I feel sick and have a stinking headache!!!

Anyway, I called my cardiologist and told him the above and he is now referring me to an EP as he thinks the next step is an ablation... I'm slightly concerned about this as the last cardiologist I saw said there's too much risk with ablation!!!

Feeling stressed now as well as crap from the meds :(

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15 Replies
Finvola profile image
Finvola

Sorry you feel so rotten joebob - and stress is the last thing you need. A good, long discussion with an EP should give you some answers to the best way forward and a more stable therapy.

I've talked to 3 cardiologists and 2 EP's and have been given 4 different opinions about drugs versus ablation but the most consistent advice has come from the 2 EP's. I suspect general cardiologists have their own 'mindset' regarding ablation whereas the EP's have the actual physical experiences.

PeterWh profile image
PeterWh in reply to Finvola

Also ablations did not exist when the vast majority of the cardiologists did their training. Many will embrace change, new specialisms (such as EPs) and development but many will not - especially some who will not recommend it because they don't fully understand and don't want it backfiring on them if things go wrong!!!

BobD profile image
BobDVolunteer

Generally speaking cardiologists don't like ablation since they don't fully understand it. EPs do and are in favour. What is important to understand as I frequently point out is that any risk is very small and you are only told about it so that your relatives can't sue the doctor or hospital if heaven forbid anything did go wrong. There are risks in everything, even doing nothing so trust me when I say that as a devout coward I would not have had three ablations if I thought there was any major risk.

AF almost always progresses so best not to leave things until it is permanent and untreatable.

joebob profile image
joebob

Thanks for the replies, it's great to have the support from people who understand.

I need to know more about ablation so expect another post shortly.

davythom profile image
davythom

How do we know it will always progresses Or how long it will take to progress it is so different for everyone. I have looked and looked for research and always come up with the same answer not enough is know about AF

Finvola profile image
Finvola in reply to davythom

Agreed davythom - my EP said progression of AF when controlled by drugs is 'poorly understood' and has many different factors influencing a person's experiences of the disease. He thought it is likely to progress but such progression is linked to an individual's risk factors, causes of arrhythmias and general health.

AlanAF profile image
AlanAF in reply to Finvola

As someone new to AF, how effectively drugs control the progress of AF is something I am interested in. The latest issue of AF Association Today has an Ask the Expert question on this. In his answer, Dr Gupta from Liverpool seems to be saying that progression is dependent on addressing the underlying risk factors, such as (in my case) high blood pressure.

Link: atrialfibrillation.org.uk/f...

I would feel much happier about going on drugs if I felt the AF would not progress as I have made many changes to diet, exercise, weight, etc to try and get the basics right.

dedeottie profile image
dedeottie in reply to AlanAF

I was told by my E.P. that all the time flecanide was keeping my heart in rhythm the A.F. wouldn't progress and I could see the logic in this. Other experienced A.F.ers on here said that flecanide only stopped working because the A.F. had quietly got worse during the period of being medicated with flecanide. Well which one? I wanted to believe the first but the second turned out to be true as now the flecanide has stopped working my A.F. is there for most of the time whereas before, I had 7 days on 3 days off. Of course this might not be the same for everyone. X

Finvola profile image
Finvola in reply to AlanAF

Hello Alan

I'm the one who put that question to the AFA for consideration by their Ask the Expert. I couldn't understand how AF managed to progress if there are no episodes, so that answer plus the same response from my quite young EP seems to nail it.

i want the same as you - take the drugs and be free of the blasted thing, but I don't think it's going to be that easy. One thing seems to be certain, however, if AF is left alone to do its work in restructuring and reprogramming the heart's electrical system, progression is much more likely than if drugs or ablation can slow it down.

My way of coping is to reduce the risk factors over which I have control and hope.

AlanAF profile image
AlanAF in reply to Finvola

Thanks Finvola. Me too in terms of what I want and trying to sort the background health factors to give myself the best chance. If the drugs don't control the progression, then it might be better to go for an ablation asap. What do you think?

Finvola profile image
Finvola in reply to AlanAF

I wish I knew what to think, Alan. It has to be such a personal decision, based on medical advice as well as a host of other factors.

I have decided to take drugs for as long as my quality of life is good and there are no obvious side effects. Many posters have had wonderful results from ablation but at the moment it is not for me. If I were younger and lived near one of the centres of excellence, then I would probably go for it, were it to be offered.

My EP talked about a study - probably very long term - to measure progression rates in randomised patients taking drugs versus those who have had ablation. Such data would be very useful!

You are so right to do your research and find the solution that best suits your life.

AlanAF profile image
AlanAF in reply to Finvola

Thanks. My first impression was to go for an ablation, as I am relatively young and with no complicating factors, but I am tending towards the drugs - especially if they stop the progression. Ablation techniques have improved a lot in recent years, so - by delaying that option for later - hopefully they will have improved further. I am struggling to get good medical advice at the moment.

DavDug profile image
DavDug

Anybody any idea how old the craft of EP is?

Dave.

davythom profile image
davythom

My EP said the same thing. he also said new research is badly needed to find out how AF is so different for each person it effects.

Beta44 profile image
Beta44

Outcomes are much better if you have an ablation before you progress to persistent AF. Also quicker, simpler with fewer risks. I am very pleased that I had mine 5 months ago and have been in sinus rhythm ever since.

Peter

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