AFIB back again: Well, after 20 months... - Atrial Fibrillati...

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AFIB back again

Jhcoop55 profile image
38 Replies

Well, after 20 months of AFIB free living following my second ablation in late 2016, it came back with a vengeance after a short 20 minute exercise on my elliptical. Spent 7 hours in ER as the IV meds didn’t work until they finally cardioverted me which brought me back into normal sinus rhythm. Needless to say, this is totally frustrating/depresssing as I have done everything to lead a clean life- no alcohol or drug, eat well, fit 62 year old, moderate exercise, good BP, zero chadvasc score, no other major medical conditions etc. I’ve still had to deal with uncomfortable PACs/arrhythmias as a result of my ablations over the past two years but figured that this was worth the price of having no AFIB. Now I’m back to square one and back on anti arrhythmia and BP meds to control as my two ablations can now be officially deemed as failures. Smartly, I never went off my Pradaxa and for those of you that have had an ablation that is deemed to be a “clinical success”, think twice about going off your anti arrhythmic drugs especially if you are older

Next step is a follow up visit with my EP early next week to evaluate future options, if any. I’d be hesitant to go through another ablation given the cumulative effect of scar tissue on my heart but I’d be interested in hearing from those that have given this a third shot and rationale. At this point, I’d rather just stay on meds (Flec/metropolol) as they haven’t caused any major side effects in the past but I worry that their effectiveness will decline over time making an ablation less likely or viable in the future should the frequency of AFIB get worse or I go into permanent AF

Thoughts are welcome

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38 Replies
Vandalbragg profile image
Vandalbragg

I think that part of it is understanding that an ablation helps treat Afib, but does not cure it. I’m 32 and I’m taking Flecainide daily, and I’ll keep taking it until it stops working, which may mean 30 years! And in 30 years I’ll still just be your age!

Jhcoop55 profile image
Jhcoop55 in reply to Vandalbragg

Thanks for your reply. Believe me, I’m well aware that the ablation is not a cure. I was merely hoping to get at least 5 years out of it, so I fell short by 3.5 years. My first ablation didn’t last 3 months. I hope Flec works for a long time but the data says otherwise as it’s effectiveness declines over time according to studies. Hopefully your young age will keep you fit and healthy for many years to come!

So sorry to hear of a fib paying you another visit. That has to be hard to deal with. Prayers your EP can give you some hope. 💜

Jhcoop55 profile image
Jhcoop55

Thanks! Much appreciated.

Aprilbday profile image
Aprilbday

Wow!!!

Your posting informed me on quite a few questions I had. I also use an elliptical and notice some kick up afterwards. (Slowly,too!)

I am amazed that you choose to stay on Pradaxa after 20 months!!! How smart you were for that! Very smart because you could have been in very serious trouble or the unthinkable.

This has encouraged me to stop my whining and fears about taking the medication. I think scar tissue is a valid concern. What BP meds are you taking if I may ask? I take Dilacor and Lisinopril. And Pradaxa for thinner.

Jhcoop55 profile image
Jhcoop55 in reply to Aprilbday

I’m now back on a combination of metropolol ((blood pressure Med) and Flecainide (anti arrhythmic) aside from Pradaxa.

I received good advise from this site regarding staying on Pradaxa.

Flaka profile image
Flaka in reply to Jhcoop55

I can’t take Flecanide as side effects are awful so I am simply on a beta blocker Coreg and Pradaxa.

Aprilbday profile image
Aprilbday

Thank God. That could have turned out not so well. Smart.

stevequ profile image
stevequ

Just in case it may help you or a reader... my mother (late 60s) has been on Flecainide and Betablocker for 10 years until they suddenly stopped working. Eventually (are 3 years) we discovered by eventually closer observation and process of elimination that my mother reacted very poorly to Chinese slim tea (to assist with poor bowel function). It was long overlooked and only through a naturopath we found that the toxicity of the herbs in the tea made her body react in ways that helped trigger the AF. We have since stopped the tea and the meds are starting to work again.

secondtry profile image
secondtry in reply to stevequ

Well done, I consider a Naturopath's advice a vital part of 'my team' and he principally advised an Mg compound & CoQ10, which I think have been key not just for AF but improving my health generally.

First question would be how good is your EP ? Second opinion maybe ? Also do you have any sleep issues have you been tested for apnea which is responsible for a number of failures ! Also I would check if you are deficient in any minerals !

All the best

Jhcoop55 profile image
Jhcoop55 in reply to

Andy,

Great point. Yes indeed, I was diagnosed with very mild (almost borderline) sleep apnea (score of 6.5) a few months ago. Tried CPAP, but couldn’t get used to it. I was fitted for a dental devise specifically to open airways and which is considered very effective for mild sleep apnea. It better be effective since it costs $4,000, thankfully covered by insurance. Unfortunately there was a delay in manufacturing the devise and I’m still waiting for it- supposed to be ready next week. Bad timing! Would it have made a difference had I received and started using it a month ago? Probably not, but who knows

in reply to Jhcoop55

Hi very possible sleep issues certainly caused my af ! I have an ablation scheduled for end of May and have insisted on a sleep test which has taken me ages to sort as they refused to take it seriously as I am a normal weight !

Hope you get it sorted !

Andy

Jhcoop55 profile image
Jhcoop55 in reply to

It’s amazing how ignorant some EPS and cardiologist are. It’s a known fact that that a high percentage of AFIB sufferers suffer from AFIB but of course, I wasn’t told this early on and only discovered the relationship much later after viewing this site and doing my own research. I don’t understand wh it is not standard practice for anyone diagnosed with AFIB to do a sleep test. Good that you insist on it. If you do have sleep apnea, by getting on a CPAP or dental devise, it may make your ablation more successful

Good Luck

PS- my EP has transferred hospitals so I will be meeting with a new EP

Bob56 profile image
Bob56

Hi I've only had one ablation which came about because my AF episodes were getting more frequent and my medication, Flecainide and Bisopropol was becoming ineffective. I had actually been on Flecainide for nearly 20 years so can't really complain that it hadn't done its job, but ablation seemed the right next step. I had hoped to be medication free afterwards , but within 12 months, the AF episodes crept back in and I went back on Flecainide and then Bisoprolol. I was disappointed, but have now had 2 more years AF free, and apart from the annoying ectopics, feel pretty well.

My EP likened my ablation to resetting a clock. It has not totally sorted my AF but has taken me back to a time when my medication was effective, and if I get another 20 years out of it then I suspect I will consider my ablation to have been successful. Realistically, I may ultimately have another one, but at the moment it's all about quality of life, and if that's ok, then I will leave things as they are, for now at least. Pre ablation, my cardiologist did suggest I could be medication free if all went well, and it's easy to feel things have failed if you have to keep taking the tablets, but that's not really the point. It's what works for you, and if you can reach a reasonably stable point with medication ( and can manage any side effects) then in my opinion that's not a bad place to be.

Jhcoop55 profile image
Jhcoop55 in reply to Bob56

Thanks Bob56. If I can get 20 more years out of my meds like you which I Tolerate well, I’d be thrilled.

Melleray profile image
Melleray

This condition is such a hard thing to live with isn't it? The fact that you think you have, just maybe, rid yourself of it and life feels good and normal, and then WHAM! back it comes out of the blue. The unpredictability of it all is such a big part of the impact on our lives. I hope it settles down again for you. Last week I spent two hours African drumming with a local group I belong to, in the cold, wind and rain at a Sunday market. Heart was fine! Two days later I was relaxing in my warm caravan by the sea reading a book, when bang, into AF and off to the local hospital.

Rubymurray25 profile image
Rubymurray25 in reply to Melleray

Great read and sums up the condition really; so unpredictable therefore so hard to live with it ! I am joining a Mindfulness class next week to try something different, an area the doctors can't control!!

Melleray profile image
Melleray in reply to Rubymurray25

Good for you !! I'm trying acupuncture too.

secondtry profile image
secondtry in reply to Melleray

Your experience sounds familiar, you are most vulnerable not when the heart is working moderately hard (e.g. in the cold & doing an activity) but when relaxing; your AF is probably vagally mediated. I'm the same, in the early days I couldn't even sit down to relax watching TV in the evenings as I felt it coming on, so had to get up and do some light housework - my wife saw that as one of the more beneficial side effects! Seriously though, this issue builds a level of anxiety (as relaxation is important) so you then have to reduce the anxiety. I work on the basis a lot of different factors 'go into the AF glass' to make it overflow, reduce these all by 10% and you have the desired result and I can now relax as normal in front of the TV! Hope something there helps.

Melleray profile image
Melleray in reply to secondtry

Thank you. What you say is true for me too. I can mow the lawn, go for fairly long walks and not have a problem. I often wake up in the night with AF.

Icenae profile image
Icenae

I had my 3rd ablation 2 years ago. Have a pacemaker (18yrs)

Partial success but I have also started to take magnesium, vit d and other multi vit /minerals.

Seems to work for me. Meds never did anything. Back in bit of parox af after pacemaker check 4 days ago but hope it will resettle.

Horrid condition but just try to work around it. I dont drink much alcohol or eat big meals or over exercise. No real cure so just endure 😕

I Am 66 now. 20 yrs sick sinus/af. My brother had it, now my 31 yr old daughter awaiting ablation.

Btw my bro was a pe teacher /sports addict And I did loads of swimming and sports too

Check out Sandy Guptas (York cardiology)facebook page/you tube

Best of luck

Jhcoop55 profile image
Jhcoop55 in reply to Icenae

Thanks much

Cas33 profile image
Cas33

Well, I’m of similar age to you 60 and female.

I started with this last year early May, having been fairly fit up till then. Was diagnosed with AF and subsequently had 5 Cardioversions for the next 5 months, yes because I never stayed in NSR for longer tha about two weeks.

Then last November I had my 1st Cathetre Ablation, followed by another in January of this year. I now have Flutter and am awaiting a Pacemaker and then after 6 weeks a Vegal Nerve Ablation.

So watch this space.

secondtry profile image
secondtry in reply to Cas33

May I ask why you are having a vagal nerve ablation & what is the goal with having one?

Cas33 profile image
Cas33

The Vagal anerve Ablation is apparently so that the pacemaker can regulate my Heart Rate, should it start to go to fast.

Many other avenues have been explored and failed.

Unfortunately, I’m over weight, have Mental Health Isdues , Diabetes and Sleep Apnea .

So I guess I’m a very difficult case.

secondtry profile image
secondtry in reply to Cas33

Thank you, hope all goes well for you, a lot of perseverance is needed with AF which ever route you choose.

Jhcoop55 profile image
Jhcoop55

Best of luck to you

fairgo45 profile image
fairgo45

Ablation does not work I have had 3 and feel the scaring will only do more damage to my heart and emotionally it is so depressing when it comes back.

Magnesium is my non drug of choice now and it is self limiting it connot hurt you

One day a/f will be curable but not with ablation and not for a very long time there has been nothing New in the 10 years I have had it

in reply to fairgo45

These are my concerns also, I am on the fence post re ablation. My a fib is only a couple times a yr annoyance, if I had an ablation and it got worse, not sure I could deal with that mentally.

Icenae profile image
Icenae in reply to

I would avoid ablation if the af so infrequent. I only had mine when occurring for hours daily.

Just ride it out.

Mine have improved after 3rd ablation after which I had horrible complications. will only have another if daily again.

in reply to Icenae

Good to know, thankyou! That is what my gut tells me too but always good to hear it from someone who has been there.💜

brit1 profile image
brit1 in reply to fairgo45

how much and which kind of mag are you on? I am also taking supplements per Dr Stephen Sinatra's book - CoQ10/Taurine/Mag Taurate/Mag Glycinate/D-Ribose (I don't purchase them online)- at least my heart will be more healthy and protected.

fairgo45 profile image
fairgo45 in reply to brit1

After many years on iherbs magnesium and Taurine I switched to Remag as it does not cause bowel issues I also drink coconut water for the potassium and magnesium it provides so far I see a good improvement

cuore profile image
cuore in reply to fairgo45

I do not know how "new" you were wishing for. But, there have been some innovations in mapping as well as alcohol injection. In terms of mapping, Bordeaux and some places in the States are using the Cardio Insight vest as well as the Rhythmia system. This year at the AF symposium, the iCLAS catheter (Continuous Lesion Ablation System), was presented. This year the RADAR system was also presented. "RADAR stands for Real-Time Electrogram Analysis for Drivers of Atrial Fibrillation. You might want to read the summary at:

a-fib.com/2018-af-symposium...

For perimitral atrial flutter, the Bordeaux group uses ethanol injection in the Vein or Marshall.

I can understand that you are irritated that the AF has come back, but there are some that have had even eight ablations. So, I encourage you to keep your spirits up.

fairgo45 profile image
fairgo45

drjohnm.org/2015/02/a-new-w...

Prash Sanders is a respected EP so this is interesting

Jhcoop55 profile image
Jhcoop55

Interesting stuff

kathie659 profile image
kathie659

My cardiologist insisted I have no need for pradaxa after ablation was successful. Having learned to stand up to doctors, I insisted I still be on it. It has caused no side effects and psychologically it is important to me. I'm on metoprolo (25mg) and pradaxa and plan on continuing these meds as long as possible. If it ain't broke.....

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