Return to AFIB after 4 years

[bigking]

Had 2 cardioversions and 2 ablations four years ago. The second ablation had everything working great for the last four years. Have to take a lot of HBP medication, but all was manageable until about a month ago when AFIB reared its ugly head again. Got scheduled for and had another cardioversion. They tried twice and was unsuccessful both times. Present EP is reluctant to try a third ablation. Life is miserable right now...tired all the time with little or no energy. Not sure what next step is.

[Kaz747]

Sorry to hear this. It's difficult at times getting on with life with the shadow hanging over us that our hearts may once again develop a mind of their own and start throwing unwanted parties in our chest.

Take care and keep smiling (as best you can).

[Cookie24 in reply to Kaz747]

That's a light view - start throwing parties

[Kaz747 in reply to Cookie24]

I’ve been to hell and back with my heart over the last few years but I always try to look on the bright side and keep smiling 😉

[Morzine in reply to Kaz747]

Hi kaz yes you have been to hell and back, but alway were chirpy. Dudu ever get to Greece?

Are you doing well now? None of us like to tempt fate by saying it’s goung we’ll do we… I’m in Spain in holiday, where it all started five years ago….

Sue

[Kaz747 in reply to Morzine]

We didn’t get the Greece in 2020. Our country’s border was closed was almost 2 years. We had been previously in 1990 and 2010.

Next year I have a big O birthday so we’re hoping to go to Europe then.

Enjoy Spain!

[macymoo007]

I’m so sorry things are like this for you. Do you have a ‘reason’ for afib or just one of the really unlucky ones?

[bigking in reply to macymoo007]

High Blood Pressure they believe, but is pretty well under control with Metoprolol, Amlodopine, and Lisinopril now, so who knows what precipitated this bout.

[Cabinessence in reply to bigking]

Sorry to hear that. I just got a date for my first ablation yesterday which will be 14th July. Always been a bit puzzled that people get described as having high blood pressure, when if its controlled by meds and is back down where it should be medically, surely you haven't got high blood pressure? So that can't be the cause. Or is that too simplified? Mine is triggered by alcohol. Just a couple of lowish proof beers sends me into an attack, so if my ablation works, I'll be petrified of having a pint for fear it sets the kangaroo in my chest off thumping again.

[fibnum in reply to bigking]

I would try to reduce the HBP meds. Lose weight if needed, and exercise. I was on the same meds when my Afib began. I found out I have celiac disease, and I avoid gluten, gas-producing veggies and alcohol. I lost 35 pounds from eating less. I walk an hour most nights and do light weights.

I was on 100 mg metoprolol, 30 mg Lisinopril and 5 mg Amlodipine. Now I take only 25 mg of metoprolol, nothing else. My BP is fine.

I was experiencing PAF every two weeks on the 3 meds. I have had no Afib for 6 months since getting off of them.

This may not relate to your situation at all, but I wanted to share.

I hope you find some help!

[CDreamer]

Also sorry to hear this but know that you still have options. If cardioversion didn’t work then I can see why your EP said another ablation is unlikely to help. Did they suggest anything else for next steps?

5 years ago I was in a similar situation with AF on top of a muscular neurological condition of which fatigue is a symptom so I was beginning to despair. Because of the other condition I could never take any rate control or anti-arrythmias. My EP suggested Pace and Ablate - last treatment option. I was reluctant but desperate enough to say yes. I found after the pacemaker insertion I returned to NSR so the ablation of the AV node was cancelled. I think I was lucky but the important thing is that from the moment the pacemaker started working I felt better. I still have very occasional AF - at my last pacemaker review I had burden of 4% but that was when I had serious infections - since they cleared a few months ago - nothing. Because my pulse is steady, despite occasional AF from which I recover much more quickly, I have more energy and can do more.

Other options to look at is hybrid mini-maze - there have been a few posts about it recently but the member to ask is MummyLuv who has a support FB page and has been through the procedure so knows the ins and outs.

Hope that helps.

[MummyLuv in reply to CDreamer]

happy to help, have a read of my posts. I had a mini maze. PM me if you’d like more info.

[CDreamer in reply to MummyLuv]

The info was for bigking.

[MummyLuv in reply to CDreamer]

sorry I realised that perhaps should have responded on his post. Lol.

[bigking in reply to CDreamer]

Thank you. I am certainly open to all options.

[CDreamer]

PS - I notice that you posted some time ago about CIPRO - a few AFers here who suffered the long term complications after taking - did you go ahead and take it?

[Gumbie_Cat]

So sorry to hear that you are in that position after having previously had successful ablations. I got similar news from my EP a couple of months ago. My first ablation only lasted two days, and the extent of fibrosis in my left atrium means that further ablations or cardioversions are not advised. He felt that I would need to be on Amiodarone for years after a cardioversion, and didn’t advise that either.

I was very low about this - lacking in energy, and not keen on being ‘rate control only’. If this doesn’t work, then there is a possibility of ‘pace and ablate’. Many people pursue the idea of a mini-maze at this stage too, so that’s definitely worth looking into.

However, my Holter monitor showed reasonable rates over 24 hours. I’ve been really trying to feel less anxious and getting on with it. My legs do feel tired halfway up stairs, but I’m pausing then pushing on. So far have managed a castle tower, and getting to Aira Force waterfalls in the Lake District. Somehow it’s as though my heart is settling into its rather odd rhythm. It’s not ideal, but somehow you do start making the best of it.

Of course the rate needs to be controlled to prevent damage to the heart. The EP does tend to have a good idea of what will work for us, and will be careful not to do procedures if the risk outweighs the benefit. If they suggest that pace &ablate is needed, then I will go for it.

Really just to say, don’t give up hope - there will be ways to improve QOL without another AF ablation.

[bigking in reply to Gumbie_Cat]

Thank you for your reply. Sounds like we are in the same boat in a lot of ways. My regular cardiologist seems to think I should just learn to live with this. EP seems more interested in trying some different ideas, but not a 3rd ablation. I too try and walk about 4 miles per day and also get very worn out in the legs when going uphill. I will keep pushing. Can't see what harm it is going to do at this point. EP appt next Weds, so hopefully he imparts some great new ideas.

[Gumbie_Cat in reply to bigking]

Best of luck!

[Simbadog6261]

I was the same, my heart ead also going into bouts of bradycardia. Had a pacemaker fitted, what a difference it has made to my life.

[Threecats]

I am sorry to hear how things are for you now, Bigking and can imagine your disappointment and concern. I would just like to second Gumbie cat’s post though. I’ve been in persistent AF for a few months now and have recently noticed that my body is beginning to adjust to my heart’s funny rhythm, in that I am able to do more without getting so tired. I only take Bisoprolol for rate control at the moment.

I appreciate you’re looking into all your options and will decide the best way forward for you but just wanted say that you may find things get a bit easier in time.

All the best to you, TC

[mwcf]

Sorry to hear. Some good advice above from CDreamer, Gumbiecat and simbadog.

[secondtry]

Have you maxed out on lifestyle changes, AF trigger identification & 'natural' ways to stop it - all widely discussed here? These measures may not be 100% successful but likely to reduce the burden.

[Leggylady]

So sorry to hear this. Hope the advice offered here gives you hope and some confidence for the future.

[Fullofheart]

I'm sorry to hear this also.I've been in persistent AF for around 10 years now, in paroxysmal for 8 years prior. I totally get the concerns and frustrations.

I can testify that life does go on though. I still work full time etc.

I had 3 failed ablations last year. Rhythm control meds didn't control rhythm and rate control drugs are limited for me (allergies etc). So they haven't found a way, yet, to either get my heart into NSR or to bring the rate down to a nice rate. But it has found its own rhythm, for now, and it mostly stays below 115. Which is better than it has been in the past. Currently I'm not on anything but that's short term. Gonna try heart failure meds next and might also go back on rate control to try to lower the rate, if poss.

Talking pace and ablate with cardiologist but they won't do it yet as I'm too young (47). However that will remain on the rable and, I imagine, would change if symptoms meant I had no QOL or health dictates.

The point is, there are options. And I would recommend talking these through with someone- Cardiologist, GP or BHF. Wishing you well.

[Cookie24 in reply to Fullofheart]

What is the age when pacemaker is considered?

[Fullofheart in reply to Cookie24]

As I understand it, age is just one factor but its because the younger you are the more risk is associated with pacemakers and AF (not so much tor other conditions I think). Because the pacemaker is working permanently, the batteries need changing every 7 or so years....so you have more procedures over a lifetime if you are younger. And of course its not reversible with the pace and ablate so, at a younger age, you rake out the av node/ the hearts own rhythm control. It's not as straightforward, as I understand it, to there being a clear age cutoff.

[CDreamer in reply to Fullofheart]

Battery life of PM seems much longer than quoted on most sources - I was told mine would be 10-12 years - implanted 2018 and app shows average remaining life =6 years. My husband was told 7 years - we are into year 10 now. The modern pacemakers I think are even better. There has also been a breakthrough in self charging batteries so the whole unit may not require to be removed in future.

There is no age limit - I think I was 66 when mine was implanted and the oldest person I know to receive one was 100.

[Fullofheart in reply to CDreamer]

Is your pacemaker for AF?

[CDreamer in reply to Fullofheart]

Yes - only option for me as can’t take any of the drugs.

[Fullofheart in reply to CDreamer]

Same here...well a lot have been ruled out but I was ok on digoxin and looks like I'll go back on that alongside the heart failure meds.Consultant was pretty clear I was heading towards pace and ablate but trying to hold off a few years as described previously. I'm also hoping that a few years might enable some advances too as well as there being one less battery change.

That's the plan anyway...for now.

Hope you are doing well with your pacemaker. I'm interested to know how that works for those with AF.

Thanks for answering!

[CDreamer in reply to Fullofheart]

There is an algorithm which can be set to control AF. medtronic.com/us-en/healthc...

I have an earlier version 3 lead Medtronic RST PM.

I had to have a PM revision - soon as it was removed I was straight back into AF. Modern pacemakers are mini computers.

[MaryCa]

Get a second opinion

[jerseygirl49]

so sorry to read your post. This forum is brilliant and so supportive for folks like yourself so heed their advice whilst realising and accepting they are not qualified professionals. Good luck BigKing - hope you get sorted out soon.

[Chico1954]

Ask your consultant about going for a PFA - Fara Pulse Ablation - best wishes going forward.

[Modog]

all medications have side effects, some subtle, and some not so subtle. The fewer you have to take the better. I would do some research and find another cardiophysiologist and get another ablation. Remember, some practitioners are better than others!

[JJHRT]

if the ablation lasted 4 years that’s not bad. No reason not to try another one. Maybe a hybrid ablation this time? Maybe ask to try Tikosyn in the meantime. Maybe try another EP whose willing to try again.

[CDreamer in reply to JJHRT]

Not sure Tikosyn is available in UK? If cardioversion didn’t convert someone back to NSR there is almost no chance ablation would but hybrid would be a possibility.

[Morzine]

oh dear it’s what we all dread….cdreamer has sent you a wise message with more options , don’t give up, I do feel for you

Sue