Sick of af: That's 3 months since my... - Atrial Fibrillati...

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Sick of af

Kaiser78 profile image
17 Replies

That's 3 months since my ablation and I'm still getting af every day for 10-30min, the eptopic beats have stopped though! I was 6years nsr after my first ablation, but this 2nd ablation has made me worse I swear, I only got af once a fortnight before it. My doctor is taking me off flecainde and gonna try dronedone, I'm worried I'm gonna end up with heart failure, I'm otherwise healthy just paf, they still say there baffled I've got af?????

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Kaiser78 profile image
Kaiser78
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17 Replies
Rellim296 profile image
Rellim296

So sorry Kaiser to hear of this unhappy situation. I take it your doctor is your GP. Have you been in contact with your EP? I had an ablation mid March and my follow-up appointment is next week, which is almost four months on. I have been better since the ablation, though not perfect.

Is a third ablation a possibility for you or are you now wary?

I am sure you have looked at things like are there any triggers. Do you take flecainide routinely and if so, how much?

I feel it's likely you can find a good way forward, so don't be despondent.

Kaiser78 profile image
Kaiser78

I did the usual no coffee, booze, chocolate, but still got bouts of af, I take 150mg at 10am and again at 10pm, but it seems to happen when I'm relaxing or sleeping, so I'm knackered due to lack of sleep. My ep said I only need one vein zapped in my 2nd ablation, after my 1st ablation I was playing football a week later, this

Kaiser78 profile image
Kaiser78

This time I'm struggling 12 weeks down the line, there saying I might need another, but I've to try dronedone first. I've read some people took as much as 9 mths? I wish I could go a day without af it's really depressing and being off work doesn't help

Rellim296 profile image
Rellim296 in reply to Kaiser78

Yes, I found it nearly always occurred in the middle of the night, or just after I had woken. I wondered how much I needed the daytime flecainide. I was on 150mgs x2 and sometimes took less in the morning. I currently take it between 6 and 6.30 but take only 50mgs x2 now. Occasionally later in the morning if I am not awake. I haven't tried 10 and 10. When I tried 11am and 11pm I found it was socially not as easy and one needed an early breakfast.

I believe there are slow release capsules but I've never had them.

I think someone said flec can affect sleep so a change might be a help to you. I'm certainly sleeping better recently. Do hope you can turn a corner and get a break from the tedium of daily AF. It's so unsettling. At least it doesn't go on for hours. I do think there must be an answer to it.

I have no experience of dronedone, but someone else will have. Do keep us up to date.

davegm profile image
davegm

Kaiser

your situation is the one i fear most - the ablation appearing to make things worse rather than better.

I had a pvi ablation three weeks ago and have since had two quite long bouts of af with nothing in between except very intermittant skipped beat.

However the post ablation af lasts longer and is more intense than i was experiencing in the previous 18 months although less frequent.

Ep says its very early days for me but i am a worrier by nature.

I hope youu improve and its just a matter of time.

I am sure a further ablation is possible if necessary.

I'm not medical, but with chocolate, booze and coffee, I think it's actually sugar, alcohol and caffeine that are the problem. i.e. anything that stimulates the heart. And with me that could be just eating a good meal, so I graze and never have big meals. Are you getting these stimulants from any other source? Like fizzy drinks, cakes, biscuits, whatever. With me waking up in the night with symptoms often meant it was something I ate or drank.

Just a thought! Hope you get it sorted.

Koll

Kaiser78 profile image
Kaiser78

I don't drink fizzy drinks, I drink lots of water eat my 5 a day, love porridge being Scottish, I'm only 36 had this paf for 12yrs, first ablation was a god sent, I played footie had a beer or two with the lads and no probs for 6years, gave up all the "bad things" and so called triggers, yet I still go into af watching corrie relaxing!!

I really miss the footie!

Kaiser78 profile image
Kaiser78

I think one of my "ex's" has voodoo doll on me!!!! Lol

Loo53 profile image
Loo53

Agree with you there Koll definitely late night scoffing. Alcohol raises the heart rate (because its a poison duhhh). I gave that up 17 years ago but often wonder now if my days of being a female version of Oliver Reed has caused this who knows! Lol ! As for vodoo dolls I should be dead by now....oh wait ! I'm still here!!

CDreamer profile image
CDreamer

So very sorry that you have this to cope with, at your age you want to be active and having fun.

I had ablation last Nov which made things much worse so my EP wanted to so a second ASAP ie; within 12weeks. In the end it happened in Mar and am happy to say that this one appear ears to have works very well.

The accuracy that is needed for a successful outcome is very, very fine and EP's success rate does seem to vary considerably, I have heard anything from 75% right up to 98%. Was this the same EP who did your first? Do you know his personal success rate?

My understanding is that ablation is a treatment and not a cure so there are some who have posted here who have had multiple ablations, I believe 8 was the highest I heard of.

I can so relate to your despondency, hardly surprising, hope things improve for you soon and you find something that works for you. Rant away here anytime you like if that helps, best wishes.

Kaiser78 profile image
Kaiser78 in reply to CDreamer

Cdreamer, I didn't get to pick who does the ablation, and no sure how you find out there success rate???? I know it's still early, but I'm getting af every day, I really don't feel it's worked this time, looks more likely I'm going in for a third!

kakapo profile image
kakapo

I'm feeling guilty. Seven weeks since my ablation and I have had no AF. I have had two chocolate binges in the last fortnight with no consequences. To be honest I never found a trigger and my AF would just happen at any time of the day or night, both at rest or hard out exercise. I did find magnesium supplements helpful. Good luck

Kaiser , I do sympathise with you. I have to say with reluctance that after 3 ablations I am worse than i was at the beginning. BUT, I may have got to this stage or worse without the ablations, who knows ? At the moment I am back on a drug I first took 16 years ago, Disopyramide. I have taken Dronedarone at one stage , anything is worth trying & I have had everything! A 3rd ablation might just do it for you, don't rule it out. And yes, I have had heart failure as well -- thankfully a one - off bout following 3 weeks in persistent fast AF . Hospital had stopped my diuretic because of potassium levels & I accumulated fluid in lungs, a frightening period.

Hope you get sorted soon & get your life back. You're too young for all this!

Sandra

Kaiser78 profile image
Kaiser78 in reply to

Sorry to hear about the heart failure, that's my worse nightmare, my paf is no longer than a hour, but didn't get af for 6yrs after my first ablation, they keep telling me my hearts otherwise really healthy?? But af for 10min- hr every day can't be good. My cardiologist says my heart rate hasn't been above 140 whilst in af, so I'm guessing that's no too bad??

36 but feel 86 just now! Lol

Jason1971 profile image
Jason1971

I feel for you Kaiser. That niggling risk of making things slightly worse is always at the back of my mind and that's why I'm sticking with Flec for the foreseeable future. I'm not much older than you and like you were after your first ablation I'm lucky in that I get away with most things. I know it will get worse and then I have to sit down and think about my options. I just feel for you pal being so young. I've read that having an ablation whilst younger has a better chance of success, but it does tend to come with an expiration date. I hope things get better for you pal.

Kaiser78 profile image
Kaiser78 in reply to Jason1971

Cheers Jason, I'm in better health than others to be fair, so that i can be fortunate about. It's just a pain in the ass af, I've trained all my days and looked after myself, it's just the cards we're giving I guess!

Rellim296 profile image
Rellim296 in reply to Kaiser78

How lucky are we to have this awkward problem right now when amazing things can be done in the cath lab and our hearts can be imaged and mapped and treated. Who knows what prospects lie ahead for you younger ones?

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