Running out of med and other intervention options?

[BasG]

Long history of being in AF for 12 hrs +.

Several ablations including PVI .4/5.CardioVersions.

Warfarins initially,current on Edoxaban and changing to Epixaban.

Switched from Digoxin to Amioderone several weeks before CV last week as Cardiology advised by Eleccardiophysiology.,

Reduced Bisoprolol.

Amioderone was preferred drug but have suffered with extreme night terrors to such a degree that wife now has to sleep in different room as I fight and thrash around usually ending upon the floor or even across the room. Nearly badly cut myself of broken glass i knocked and broke on floor. Bed surrounded by pillows.

I am now back in AF with raised heart rate and feeling rubbish,

I came across a procedure called a convergence. Does anyone have experience of this and did it work?

Waiting to back from Cardiologist but think there is little point in more ablations.I’m thinking I would have better quality of life just taking anticoagulants and not bothering with the rest of the poisons.

72 years of age and previously extremely fit and active now falling asleep, tired and lacking energy.

Any advice welcomed

BasG

[BobD Volunteer]

Pace and ablate may give you a better QOL (Quality of life)

[BasG in reply to BobD]

Thanks - QOL is the most important factor in all of this and I sometimes think this becomes lost when trying all available treatment options.

[Buffafly]

I think you are talking about a convergent procedure which one of our members had (hope I’m right MummyLuv ).

[CDreamer]

I also ran out of options, severe affects of the drugs meant that they are all now contraindicated. The option I was left with - Amiodarone - not advised or Pace and Ablate which I went for.

My EP fought for me to have a Re-synchronisation Pacemaker which was implanted in 2018. From day 1 it helped immensely and although the Pacemaker was not without it’s problems initially, once sorted, I had no AF. From going from very symptomatic AF for 12-72 hours 3-4 times a week, my quality of life was very low, to no AF - miraculous. The PM had to be revised and as soon as it was disconnected - straight back into AF.

It worked so well that I cancelled the AV node ablation. Since then I can count on one hand the AF episodes which have been much less symptomatic and only when I have an infection. For me it has been the magic bullet, others have seen little difference but my EP told me that it has been effective for some of their patients so worth discussing?

I think you have few treatment options. If you are not in persistent AF then I doubt you would be eligible for the mini-maze convergent procedure, which only very few surgeons offer and difficult to get on the NHS, most seem to have gone privately. See Hybrid Ablation on the list

heartrhythmalliance.org/aa/...

The last option is to take no treatment, other than anticoagulant and accept that persistent AF may be preferable to as many people report being in persistent AF is a lot less troublesome than paroxysmal AF symptoms. It may not give you back your fitness levels but you may find that everyday life is much more manageable - I was never sure if symptoms arose from AF or the dreaded drugs. It took many months but once I was clear of the drugs I felt much better. I now take only anticoagulants.

Difficult choices and hope some of above helps in the decision making.

[BasG in reply to CDreamer]

CDreamer thank you. Your experiences and the options considered have enabled me to narrow down the conversation when I next see the Cardiologist. The EP and he are considering the next steps but I’m not that confident the EP will want to do further ablations as I have so much scarring.

At least if they can make a plan and take some decisions, keeping me involved and informed, I can decide what I want to do and take some control over my future quality of life.

Thanks again for taking the trouble to respond.

BasG

[dmack4646 in reply to CDreamer]

How interesting CD whats the difference between the pacemaker you have than the normal ones ?

[ETFCfan]

Hello, I tried all the options Cardioversions, abdlations, the dreaded Amiodarone, you bought back awful memories of night terrors. Then I had Pace and Ablate, I didn’t feel good before my AV node ablation which was about six months instead of six weeks after. Once recovered from the AV node ablation I haven’t regretted it for one minute. I haven’t regained my pre AF foitness but then I’m 7 years older but fit enough to run up stairs and not be breathless and no bad days due to AF! Wishing you well whatever you decide to do.

[Afibflipper]

I have had 2 previous ablations and 2 cardioversions.

Amiodarone side effects with me were off the scale and was changed to Flecainide.

In drug change I now Atrial Flutter rather than fibrillation - my EP says he’s more confident at getting rid of this flutter through ablation so due in a few weeks.

They also said as last resort for me it would be pacemaker and ablate out hearts own junction box pacemaker which would then stop the arrhythmia but be dependant then on pacemaker for life

Hope things get better for you soon

[BasG in reply to Afibflipper]

Thanks - all the different experiences seem to be leading towards ablations again.

Waiting lists are very long so will have grin and bear it whilst I wait .

Good luck with ablation and hope for a good outcome.

[Buffafly in reply to BasG]

Pace and ablate is not an ablation in the usual sense. A pacemaker is inserted and a few weeks later when all is running smoothly the AV node is ablated (destroyed) so your atria can do their thing and your ventricles beat steadily.

Highly recommended by those who have had it ❤️‍🩹

[BasG in reply to Buffafly]

Think this will be the way forward and will raise it with Cardiologist and Electrocardiologist.

Waiting times will be long I’m sure so if they agree I will have some coping strategies in place.

Thanks

BasG

[CDreamer in reply to BasG]

I had about a 6 week wait for my PM implant back in 2018 whereas the PV ablation list was 2years+. Much simpler procedures and done under local anaesthetic & IV paracetamol with light sedation if you need it.

[Afibflipper in reply to BasG]

Thank you 😊. Good luck in finding something that works & soon.

[PParrish]

I'm in US and had persistent AFib. 2 ablations with no relief. They prescribed Dofetilide and I have been on it 5 years. It works! And I have no side effects. I rarely see anyone mention this medication on this site. Is this not something they prescribe in UK?

[CDreamer in reply to PParrish]

Only available in US.

[4chickens]

Hi, night terrors sound awful. I’m on the waiting list for a convergent minimally invasive mini maze procedure, which is being performed on the nhs. It’s been a challenge to get this far and without the support of group members here especially Mummyluv’s I’d say it would of been near impossible. I’ve had to go out of county to get the procedure as my own pct don’t offer it, and wanted to perform a 5th ablation or pace and ablate. I did initially have to have a private consultation with the surgeon but this was because my own EP and GP wouldn’t refer me to him. I’m having the procedure in one hit apparently so cardiothoracic surgeon doing outside of the heart including left appendage through small cuts in my side. Straight afterwards the EP will go in through the groin and ablate the difficult to reach inside bits. If I can be any help please don’t hesitate to ask.

[BasG in reply to 4chickens]

4chickens thanks for your update and information. I will add the mini maze to my questions when I next see the cardiologist.

I think my options are down to possibly 3 now. I have seen a pct privately in the early years and felt I had the opportunity to have a less pressurised discussion and explanation of my options.

I will make some enquiries with LHB (Local Health Board -Wales) to see if they undertake this procedure.

I hope it works out for you and that it all goes well.

Thanks BasG