What next, if anything?

[Nanopiano]

Have enjoyed reading everyone's experiences with Afib/flutter. Does anyone have any recommendations as what might be the next course of action after 6 cardioversions, an ablation, flecainide, tikosyn...and nothing works. I'm in afib all the time and just getting darn tired, literally and figuratively. I've tried taurine (which actually helped for awhile!), magnesium, potassium, CoQ10 and hawthorn berry. I've ordered D-Ribose, but haven't tried it yet. If this is just something that I have to live with, so be it, but I'm not one to admit defeat. Thanks!

[RiderontheStorm]

Sorry you have been having such a problem with your AF but what does your Dr. say about all this? You have run thru all the things normally recommended.

[Nanopiano in reply to RiderontheStorm]

I have a follow up appt in August. My guess is another ablation will be recommended.

[RiderontheStorm in reply to Nanopiano]

That is what I would guess since it is Hit and Miss for many as it is as much art as science.. Best wishes with it. I had mine done early before too much damage had occurred hoping that made a difference for me in the long run

[EngMac in reply to RiderontheStorm]

Hardly anyone thinks chiropractic can help but I have learned that it can make a difference. Look at some of my posts over the last year and you may decide to give this a try since drugs and surgery have not worked so far.

[JaneFinn in reply to EngMac]

I’d second that, nanopiano. My cranial osteopath can do stuff that absolutely transforms both migraines and arrhythmia. The vagal nerve is a key player in both. Worth reading Engmac’s posts - and considering it as another line of attack alongside everything else X

[Nanopiano in reply to JaneFinn]

Thanks, Engmac and

JaneFinn. My niece is a chiropractor. I’ll get her advice. My dad was an MD and was a skeptic, but my mind is open to anything at this point. I appreciate everyone’s input! 🖖

[JaneFinn in reply to Nanopiano]

Yes! Mine isn’t the ‘bone cruncher’ type you hear about - he does tiny adjustments to the neck area - and the results are amazing. He can explain everything in physiological terms. But there’s definitely a lot of scepticism in the mainstream medical profession! As you say, though, it’s worth exploring anything that might help X

[dragonflyjan]

Hi I was in a similar situation, pace and ablate has really helped me. Good luck.

[CDreamer in reply to dragonflyjan]

Can I ask - did you have a bi-ventricular pacemaker?

[dragonflyjan in reply to CDreamer]

I don’t mind ask anything however I’m not sure. I know it has 2 leads to my heart and is a CRT-D so has the defibrillator. Does that answer your question? I will google bi ventricular now.

[CDreamer in reply to dragonflyjan]

Yes, thanks.

[CDreamer]

I’m in a similar position in that after 2 ablations I still have AF but paroxysmal not persistent. Pace and Ablate is my next step which is to improve symptoms - it won’t stop the AF.

[Hidden]

Can I please ask.... What is pace and ablate?? Thank you 🤔

[CDreamer in reply to Hidden]

It’s really a last resort treatment. I have done the lifestyle , the detox and the exercise, meditation and mindfulness (I taught it!) and sleep, the chiro, the acupuncture etc etc - you name I’ve done it. Yes it helps - sometimes, yes I feel much better for doing it overall - no it didn’t change my arrythmias. I did the meds, I’ve had 2 ablations and still get episodes when I am very symptomatic which triggers other conditions so my EP has been suggesting this for some time, I’ve been reluctant but if you read my post of a day or so ago - enough is enough!

A bi-ventricular pacemaker is to be inserted and once operational and scar healed, then a catheter ablation of the AV node is done - this is the heart’s natural pacemaker so once done it means you are totally pacemaker dependant. This won’t stop the AF but it will mean that my ventricular heart rate will be maintained and therefor I should have a big reduction in symptoms.

Quite a lot of people who have posted on here have confirmed it has improved thei QOL substantially.

If you are in permenant AF then the chances of ever going into NSR is, as I understand it, pretty much zero so therefor it is about reducing symptoms so you can exercise, not get breathless etc etc. Once you can do that then your general health will also benefit.

Believe me I am all for lifestyle changes first but as we get older our bodies just are not able to heal as they used to and I want to make the most of the life I have left.

[dragonflyjan in reply to CDreamer]

Yes that sounds like me too.QOL much improved.

[CDreamer in reply to Hidden]

heartrhythmalliance.org/res...

What it doesn’t say is that the 3 lead pacemaker is the gold standard if you rely on pacemaker 100% of the time.

[Ianc2]

Hi Nanopiano

Have a look at some careuny 's posts, he is a very strong advocate of lifestyle procedures that help minimise effects and is a firm believer in diet changes.

I am a of the opinion that you need to get your weight down to about the mid point of your BMI and take regular gentle daily exercise to improve your muscular tone. Some people say get a fitbit or similar. Others say get a dog. Quite a few follow the GOYA philosophy. Some advocate YOGA, others weight bearing exercise and TAI CHI has a significant following to help improve balance and flexibility. Then of course there are the addicts who drag themselves off ballroom dancing

If you have a dig around on this site you will find a fair number of reports regarding recent research showing the benefits of getting yourself 'right' before embarking on medical adventures which may or not work.

[Jamila123]

Hi

aFib is awful I have PAF and have been doing my own research since diagnosed 3 years ago

Firt of all do u have any heart disease ?

if not then I will continue

I can only tell u what I have done the rest is up to you

When I was diagnosed I started in a extremely health food plan not diet

I did a health journey for 2 years to monitor my body

I refused to take any medication since I needed to know what what’s happening to my body

And believe that cause more damage then heal

As we are all different and Afib effects us all in different ways

I completely stopped all caffeine instead I looked at alternatives to coffee and tea that were healthy I,e, red bush tea

Did not have decaf as they use chemicals

I went ocd on no sugar processed so fruit was okay all organic only

I stopped all dairy and then realsided that I actually had gut bloating issues which corresponds to my afib episodes

I had put in weight 85 kg due to stress

I am now 62 kg

I changed my job less stress

I completely detoxed

Still I was getting afib every 4 weeks lasting for 8 hours still no medication

this now was 1 year not feeling extremely healthy

I started taking hawthorn in dried herbs as tincture have alcohol in it and alcohol is very toxic to cells

I had Melissa for stress and chamomile

I felt better

I did yoga daily and mindfulness

So basically my body was toxic and due to so much stress over the years I had extreme inflammation in my body and probably my heart

So my main aim

Reduce inflammation

My episodes of afib became less in hours now down to 4 hours once a month

I believe that any thing can be cured if we put into our body exactly what it needs

The body on a cellular levels needs to be healed

So I decided to put back now after reading a lot vitamins and minerals magnesium taurate

Vit C , l-cartinine , Cq10 , Vit D

Pre and pro biiotics and daily viniguer for gut

After taking these for 6 months without fail

I noticed a huge difference my afib now was every 6 months and then only lasted for 20. minutes

I also refused to do any form of excerise during the first years because I did not want to cause any inflammation in my body

Now my body seems to be healing I am starting weight training mild to tone

I am still on a journey but remember damaging our body over years it takes time and patience to heal

Wish u well 🌸

[Ianc2 in reply to Jamila123]

Well done ! Sounds like a determined and effective effort, Out of curiousity, do you still eat bread?

[Jamila123 in reply to Ianc2]

Mmmm yes at times because I love bread 🤭

But I stopped the white bread and aim for sourdough that’s okay ish

Still better I make my own

June 🌸

[CDreamer]

The recommendation for me was CRT as I was having AV node ablation. I was starting to have Brady/tachy syndrome - before AF episodes - which indicates possible sick sinus.

This is not the case for pacemakers just to control SSS which kick in only when required, but if you are relying on pacemaker 100% of the time, then it is recommended.

I found various studies confirming this view but it isn’t NICE guidelines which advises CRT for people in heart failure. This has caused me some problems as my health insurers refused the CRT insertion procedure, saying ‘not proven’ but my EP is quite clear that for me, it’s the best option.

My EF is currently 70%+ and results from echcocardiogram good - but my EP wants to keep it that way and not wait until I have heart failure before fitting bi-ventricular pacemaker.

I think you are correct as regards price.