Aggressive Afib

[BeeBee79]

Does anybody on here have experience or encouraging stories about Atrial Fibrillation especially the aggressive kind.

I'm 43 and diagnosed with AF in March '21. I've had a cardioversion, 2 ablations in the upper chamber and 1 ablation in a lower chamber. The last ablation was in June then in July, I had a cardiac arrest in Crete (apparently unrelated to AF). I now have an ICD fitted but AF is debilitating me. About 6 weeks ago, I was put on a medicine called Quinidine which worked amazingly well but upon closer monitoring, the hospital realised the medicine was increasing my Long QT interval which puts at risk of another cardiac arrest episode. They halved my dosage 2 weeks ago but slowly and surely, the AF is back with a vengeance.

I used to be really active, a runner with a busy family and social life but now I can't plan for anything or even exercise like I used to. I'm hoping to hear a positive story to give me some hope!

Thanks

[scentedgardener]

I'm sorry to hear you have had such an ordeal. What do you mean by aggressive AF? Are you permanent, persistent or paroysmal? From your post it seems like yoy're having a lot of symptoms, what does your cardiologist say?Sorry, it's a lot of questions but it sounds like you need to speak to a health professional. Perhaps the BHF cardiac nurses could give you a better idea.

[BeeBee79 in reply to scentedgardener]

The cardiologist refers to it as aggressive. It was permanent before the ablations but now it’s paroxysmal and this week, pretty much all day.

I’ve let my cardiologist’s secretary know and I know if I call the arrhythmia nurses that they will just say I need to speak with my cardiologist. I was hoping for some positive stories where somebody had AF and something magically fixed it. My quality of life has gone rapidly downhill since diagnosis and I’d love to get back to normality 🥹

[wilsond in reply to BeeBee79]

If you head over to Arrythmia Association forum on Health Unlocked you will find great support.I notice you see a Cardiologist. The best people are Electrophysiologists Cardiologists who specialise in the electrics of the heart. You have the right to referral.

There is also a new proceedure performed on the nhs for difficult af cases ,mini maze. Several members have had it done very sucessfully .

Best wishes

[FindingCaradoc]

Check out the AF Association group on Health Unlocked-lots of very knowledgeable folks on that. I have a foot in both camps having had an NSTEMI in April and with a history of AF which became persistent (presently in sinus rhythm after an ablation) - your situation sounds much more complicated than mine so beyond my knowledge but I do hope you get the right help, starting with a good Electrophysiologist.

[BeeBee79]

Thank you - much appreciated

[1290Duke]

As others have said, it's the af association board you need, link below. If my memory serves me well the member who has experience of the mini maze and how successful it is, is called mummyluv.

healthunlocked.com/afassoci...

[BeeBee79 in reply to 1290Duke]

Thank you - looking now for some advice

[Curryandchips]

I have AF. I had 9 Cardioversions, ICD and tried most drugs. In the end they gave me a CRT pacemaker and severed the link between the top and bottom of the heart. The result is a near normal life. I still have issues but not the horrible AF symptoms that used to debilitate me.

[BeeBee79 in reply to Curryandchips]

My ICD is meant to pace too but doesn’t stop the arrhythmia. Glad to hear you’re doing so well 😄

[Hylda2]

I too have just had pace and Ablate and hopefully AF is firmly in the past

[BeeBee79 in reply to Hylda2]

fingers crossed!!! 🤞🤞