Opinions/advice: I saw the 'big cheese... - Atrial Fibrillati...

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Carol70 profile image
33 Replies

I saw the 'big cheese' on Friday (Professor Mark O'Neill, Consultant Cardiologist/EP). Just a check up. I have brady and tachycardia. I had a pacemaker implanted in August to sort the brady bit and was given Bisoprolol 2.5mg x 1 daily plus Apaxiban 5mg x 2 daily. Had trouble with settings for PM and they have been tweaked a number of times. Between these tweakings, my own GP increased the Bisoprolol to 5mg x 1 daily and as a PIP to take another 5mg if PAF occurred as I had had 3 PAF episodes 3 days in a row lasting 4-6 hours each. Since then I have been feeling much better. No PAF since end October. Now the 'big cheese' on Friday has given me Flecainide 100mg to take as a PIP when PAF happens and to take another 100mg an hour later if not any better. Opinions please on taking Flecainide. I feel a little dubious about it. He also after looking at my notes said catheter ablation is a wonderful cure for AF and suggested I should have it. If I agree, I am to phone his secretary and he will put me on his list. Again, I feel apprehensive about this as I am feeling fine at the moment apart from lots of extra beats but no PAF. I would appreciate opinions on Flecainide and also ablation. I know everyone is different and what is good for one is not necessarily good for another.

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Carol70
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33 Replies
BobD profile image
BobDVolunteer

Mark is a great EP and I respect his advice. Bisoprolol does nothing to stop AF, merely slows it down when it happens so extra PIP for events is not the way I would go. Better to stop the event with a rhythm control drug in my humble opinion. As for ablation I think everybody knows my opinion as it worked for me and enabled me to be drug free (apart from warfarin) these last six + years.

Carol70 profile image
Carol70 in reply to BobD

Thank you Bob for your advice. Much appreciated. I have never seen Prof O'Neill before Friday, only his colleagues on other appointments. I will take on board what you say before making my decision. He said it was up to me and I will think more about it.

jeanjeannie50 profile image
jeanjeannie50

Hi Carol - Flecainide has been my wonder drug and I would recommend taking it 100%. It cures my AF tachycardia in a couple of hours and in my ten years of having this condition nothing else has worked so well. I now take 50mg twice a day and extra if I have any breakthroughs. I can honestly say that since starting this drug regularly I have never felt so well. I went to my local hospital and saw my consultants Registrar on Friday and he assured me that it has no nasty side effects.

I have had two unsuccessful ablations.

Jean

SRMGrandma profile image
SRMGrandmaVolunteer in reply to jeanjeannie50

I'm glad you are doing so well on the Flecanide, and feeling so well, Jean!

Carol70 profile image
Carol70 in reply to SRMGrandma

Thanks Jean - I am not taking flecainide yet as it was only prescribed on Friday as a PIP. I will know if it works for me when I next get a PAF episode.

Best wishes

Carol

Carol70 profile image
Carol70 in reply to jeanjeannie50

Thank you Jean - I will be thinking long and hard about ablation before making up my mind. I have not yet had to take flecainide as it was only prescribed on Friday as a PIP. I just take bisoprolol in the mornings. The thought of further surgery is daunting. Bob whose advice is always great says it was great for him. For you, it was unsuccessful. I value your opinion.

With best wishes

Carol

CDreamer profile image
CDreamer in reply to Carol70

Hi Carol - it is hard to make up your mind you are comparing apples and oranges -

1 Ablation is not sugery - it is a procedure performed in a cath-lab not a sugerical theatre so there is much less risk and recovery time.

2 Flec worked for me very well as a PIP but AF is progressive and eventually I took the maximum dose daily and still had 2-3 episodes a week.

3 - there are long term side effects from taking Flec which is a incredibly toxic drug - so take with care and have regular blood tests - if you take it occasionally and it works for you then fine.

I was advised I had to take my first dose whilst under medical supervision. I took it in front of my GP who put me in a room in the surgery with my husband instructed to go get someone if I became sick or HR increased - it was already at 180. As it happened I was absolutely fine and it worked for me. I was told not to take if I had eaten or within 1 hour of eating. I once did and boy did I regret it - felt dreadful but nothing dire happened.

I took Flec for about 7 years all told, 5 vey occasionally as a PIP and 2 maximum daily dose. My only regret is that I didn't push much harder for an ablation, much sooner, the first didn't work but the second did and I have been AF free since and no AF drugs. After the ablation I developed an autoimmune disease which I found out recently, could have been triggered by Flecenainide. If my AF came back then I would be unable to take any anti-arrythmic nor any beta-blocker,

I think it really is pick your poison wisely - because every drug and intervention you take will have a risk/benefit ratio for you - there are no certainties

SRMGrandma profile image
SRMGrandmaVolunteer

Not everyone with AF is a candidate for ablation. But once you become a candidate for ablation, then my advice is to go for it sooner than later. It can be, and often is life changing. Meanwhile, do everything you can to be as healthy as you can in every other area!

Flecainide gave me mild palpitations and my EP told me to stop taking it immediately. I don't think this happens very often as it is such a common drug for AF'ers. I was changed over to Propafenone and later another rhythm control drug. Same with Propafenone, it works for me but can actually create problems for others, says so on the leaflet. We're all different. So best to be aware that's all.

My ablation worked 100% and straight away. No more drugs or AF for 8 years (except anti-coagulants) :-) , it was great. So I'm an ablation fan, as is my EP I'd say. Got a problem back now so on drugs again which are working well at the moment.

Koll

Carol70 profile image
Carol70 in reply to

Thanks Koll. I appreciate your advice. I know I have to make the decision myself. Some of our great forum folk say go for it and for others it has not worked. I know everyone is different, but it is still hard for me to say yes or no to the ablation. I hope your drugs continue to keep you well.

Best wishes

Carol

rosyG profile image
rosyG in reply to Carol70

The speakers who have talked to our support group have all said the choice re ablation should depend on the severity of one's symptoms= I know at least one person on this forum felt it became obvious when this was the only way forward- others have found changes in lifestyle and diet have reduced episodes considerably so ablation has not been needed- hope you find the right way forward!

Carol70 profile image
Carol70 in reply to rosyG

Thank you RosyG for your advice. My diet is fruit, veg, little red meat, chicken, fish. in fact I lost nearly 4 stone with slimming world 5 years ago and have kept it off since. My PAF rears its head every few months which is why I am considering carefully what is best for me. Do I need an ablation is what is going through my mind as I get episodes much less than others. I do appreciate your advice.

With best wishes

Carol

meadfoot profile image
meadfoot

Hi Carol70, he is my ep too I trust him completely. If he says something I am sure you can rely on it. I was fine on fkecainide which I take as pip. Suspect I will be put back on it regularly when I see him in January.

Good luck with your decision it's hard I know.

Carol70 profile image
Carol70 in reply to meadfoot

Thank you Meadfoot for your advice. I have never seen Prof O'Neill before. Usually at appointments I see one of his colleagues. Some of the group on the forum say best thing they have had done - but for others it has been unsuccessful. It is a hard decision for me but one I must make for myself. I just wanted some opinions before going ahead. I have not yet had to take flecainide as PIP as it was only prescribed on Friday.

With best wishes

Carol

Rellim296 profile image
Rellim296

Flecainide can work really well but I do feel the less I take of it the better.

I was on a high dose for several months but developed numb toes before that and subsequently my feet felt as if wrapped in cling film. I haven't taken flecainide on a daily basis for over a year but the feet are still much the same.

Carol70 profile image
Carol70

Thank you Rellim296 for your advice. Much appreciated. I have not yet had to take flecainide as it was only prescribed on Friday as PIP. When it is needed, I hope I don't get numb toes or legs.

With best wishes

Carol

Rellim296 profile image
Rellim296 in reply to Carol70

Glad you saw that as I decided I had wittered on too much and pruned it!

jennydog profile image
jennydog

100 flecainide works very well for me as a pip. I never go anywhere without some tablets which give me the confidence to cope with AF.

Carol70 profile image
Carol70 in reply to jennydog

Thanks Jennydog - that makes me feel a little easier. Have not had to take any yet as they were only prescribed on Friday and I am ok at the moment - no PAF

Best wishes

Carol

Dodie117 profile image
Dodie117

Mark O'Neill is my EP too. He gave me choice meds or ablation and I opted for ablation. I hated the idea of meds forever and all reading suggested that if opting for ablation the sooner the better. He did the ablation in Nov 2013 and except for a lot of arrhythmias in the first months post ablation, I have been AF free since.

I would do it again if it comes back. It is scary to consider ablation but the actual procedure was easy and had no other problems post ablation.

Good luck with the decision making 🍀

Carol70 profile image
Carol70 in reply to Dodie117

Thank you lallym for your advice. Mark did not give me the choice of meds or ablation but said ablation was the cure for AF and if I chose to have it done he would put me on his list. I am now just weighing up the pros and cons for me before opting for ablation.

With best wishes

Carol

PS I see you live near me. I am near the Oval

Rellim296 profile image
Rellim296 in reply to Carol70

I feel that if an EP thinks an ablation would help and it is offered, it may be wise to say yes. The time to decide about whether it is right for you as things stand is when you are offered a date. I went on my EPs list just over a year before my recent ablation. Although I had been very pleased with the way things were all through the summer, by November I was getting frequent bouts of AF and had no doubt about going ahead.

Carol70 profile image
Carol70 in reply to Rellim296

Thanks Rellim296 - I am going along the lines of having it done, but won't contact them till after Christmas.

Carol

Rellim296 profile image
Rellim296 in reply to Carol70

Your EP may not have a long waiting list. I waited eight months for my second ablation - which enabled me to give up taking flecainide on a daily basis - and I now wish I had been referred much sooner.

Dodie117 profile image
Dodie117 in reply to Carol70

Also, just to say ablation not really a cure but another method of treating AF. It can and often does come back even if it takes years. But then one normally can repeat the procedure

Carol70 profile image
Carol70 in reply to Dodie117

Thanks lallym - I am thinking now of going for it but will wait till after Christmas before contacting the Prof's Secretary.

Carol

PeterWh profile image
PeterWh in reply to Carol70

Phone first and then follow up in writing.

10gingercats profile image
10gingercats

Hello Carol70. This is completely frivolous but I read your e mail,still bleary eyed, as 'brandy and tachycardia'!When I read it again the same thing happened. It must be the time of year.....and I do not drink!

Carol70 profile image
Carol70 in reply to 10gingercats

Thanks 10gingercats - that made me smile. I double checked the spelling and can only suggest a visit to Specsavers! I don't drink either... Merry Christmas

Carol

Buffafly profile image
Buffafly

Last word - I was like you, without many noticeable episodes of PAF. But I was taking meds every day. When offered an ablation I was not at all keen but I decided to go on the list and make the decision later. By the time I was offered a cancellation slot 2 months early I had become very excited by the idea of coming off drugs and grabbed the chance!

I do not know how old you are but I can understand if you want to see how the PIP plan works before deciding. Good luck whatever you choose!

Carol70 profile image
Carol70 in reply to Buffafly

Thanks Buffafly for your response. I am nearly 70. I am coming round to the idea of an ablation but you hit the nail on the head! I do want to see how the PIP plan works before a final decision.

With best wishes

Carol

PeterWh profile image
PeterWh

Carol. As you rightly say it is your decision and it is a difficult one because ther is no crystal ball or absolute certainties if you do not or if you do go ahead.

Look at the responses I have given on a couple of other posts in the last hour because they are very relevant.

FYI my EP said to go away and think about having an ablation and talk with others for a week before giving him a decision. He knew that I had done quite a lot of research.

Carol70 profile image
Carol70 in reply to PeterWh

Thank you PeterWh - I am talking to others about the procedure and that is why I posted on the forum asking others what their opinion was. I have had some good advice and will take it all on board before making up my mind.

With best wishes

Carol

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