Atrial fibrillation support thread

[suzie2023]

My husband has paroxysmal a-fib and is in the middle of another episode now. He is currently relaxing whilst waiting for the flecanide to do its thing. Hoping flecanide works and we don't need an A&E trip. Fortunately, flecanide at home has worked for him on the last two episodes. His last episode was in 2020, so it's been 3 years.

It's bloody terrifying and I always feel sick with worry when it happens. I'm sat here with adrenaline pumping through me. I've subtly packed a small hospital bag just in case we do need to shoot off, whilst not letting on to my husband that I am panicking.

I've ran him a nice bubble bath and he is currently having a soak whilst sipping some water to hydrate. The episode before last, his heart went into rhythm again whilst he relaxed in the bath after taking flecanide - so I'm hoping it works again.

Anyway in my panic and stress, I thought I'd start a support thread (I couldn't find an existing one - apologies if I have missed it) for those with A-fib or with a family member with A-fib.

Just a place to offer support and handhold each other when needed

It's a scary condition for me as a wife so I can't imagine how it must feel for any of you people who actually have A-fib.

I'm really hoping we don't end up in A&E this afternoon.

I have paroxysmal AF. My last really nasty episode was in 2018 where I ended up in resus with SVT alternating with fast AF. After that I was given calcium channel blockers and flecanide as pill in pocket but I've never used it.

All I can say is it probably looks scarier than it is. I don't remember feeling too bad at the time other than the panic all around me. Just the next day exhaustion and a constant need to wee (known side effect of fast AF).

Hi @RedHinge sorry to hear about your scary episode in 2018. This will be his 5th episode in 10 years. It started when he was 28, he is now 38.

Episode 1: we didn't know what was happening so went to A&E and flecanide in an IV fixed it. They hoped it was a one off.

Episode 2: went to A&E. Flecanide in IV didn't work so they did a cardioversion. This time he was also referred to a cardiologist as it obviously was no longer classed as a one off.

Episodes 3 and 4: he is now prescribed a pill in a pocket approach with flecanide and this worked for episodes 3 and 4. The first time I think it resolved in about 6 hours and the second time it took longer. I can't remember exactly but maybe about 24 hours.

So this is episode 5 and hoping the flecanide works.

Has he been told how long to give the flecanide to work? Can he feel it starting to work?
Is it just the rhythm or is it fast as well?
I had various ecgs, 24, 48 hours and a week, then a stress test which triggered SVT, and eventually an electrophysiology study.
I suspect I get short bursts of AF when asleep but cardiologist isn't concerned about them. I am told to go to A&E if very high HR persists after 3 hours.

Another one with Afib here! I'm taking bisoprolol - a beta blocker and it is helping enormously. Took a while to titrate the dose but the current one (3.75mg daily) seems to be working well.

I have persistent AF and suffer occasional bouts of tachycardia. That indeed is very scary, but I normally convert within a few hours and like a pp can wee for the world after an episode! I was abroad recently and had an attack while out walking. The HR went up to 168 and jumped around all over the place (Apple watch told me) but never lower than 120. Anyway I felt absolutely fine, continued walking and talking and even carried a bag of groceries up two flights of stairs during the attack. It did resolve eventually and I swear by the vagal manoevre and deep breathing to help it.

I knew of course that if things didn't resolve within the three hour window that I would need to get myself to the A+E. I don't use PIP as the beta blockers have reduced (overall) my HR to to late 40s except when active, so if I took one I'd probably keel over! They are looking at ablation (don't want it yet) or a pacemaker (not keen) so I battle on. Treatment initially in the hospital was cardioversion which didn't work, then IV flecanaide. It was safe to take under medical supervision, but not advised for me elsewhere.

For those interested, I don't take blood thinners (Eliquis) anymore since I had internal bleeding, and therefore it was dangerous for me to take it. So I was very lucky to be a candidate for the Left Atrial Appendage Occlusion procedure (LAAO). If you are interested look up "Watchman Device". It was a scary time getting it done but thankfully it's working well.

Of course it is a blooming nuisance sometimes and can be quite frightening. But I refuse to let it rule my life. I do all the things I would normally do such as walking, travelling, etc. I have good travel insurance and have no underlying heart disease, just this electrical misfiring. It won't kill me unless I have a major stroke, but the Watchman has reduced the chances of that right down now. Wishing you all the best in the Afib journey.

My DH has permanent AF although not fast now, just irregular. He’s on bisoprolol and apixoban and seems to be quite stable. I’m lucky in that I’m a paramedic so it doesn’t frighten me too much although I do have a habit of surreptitiously feeling his pulse as I’m not sure he’d tell me immediately if he was in fast AF.🙄

I've had a few episodes of AF last year. Also ended up in resus. Completely out the blue. Flecanide had limited effect and I could only tolerate 1.25 of bisoprolol so after continued random attacks of tachycardia which left me unable to work I was referred to a professor in electrophysiology and had an ablation on Saturday.
Feeling a bit like I've been hit by a bus atm, definitely less palpitations but it will take a few weeks to assess the full affect.

@MinxieMax what puts you off abaltion?
They couldn't do it on me but I went through the whole EP process twice and it was quite tolerable.

@RedHinge I'm not long after the Watchman so I'm just giving myself a bit of recovery time before considering ablation. EP consultant is a bit wary because I will have to take blood thinners before and after and given my tendency to bleed they are happy to watch and wait for the moment also.

However, I may go for a pacemaker if the HR consistently goes low. It is up and down right now but I feel absolutely fine, no fatigue or chest pain or anything like that even with a low rate. Six monthly checks at EP/cardiologist, next one is November so we shall see.

Were you unable to get an ablation or a pacemaker? Not sure what you mean by EP process!

@MinxieMax I see, not surprised you want to watch and wait. EP is the electrophysiology study and they do the ablation at the same time.
I don't think I need a pacemaker, my HR is nothing like as low as yours , it averages about 75. Shoots up when I'm ill and randomly during the night but not for long. They won't give me beta blockers as I have asthma although they did give bisoperol in hospital to try and reduce HR which was over 200.
I don't take blood thinners as don't meet the criteria

Morning all,

We are back in sinus rhythm! Touch wood it stays that way.

It started to feel back to normal for him from about lunch time but he said it was still a bit fluttery and his Apple Watch was also saying afib. Then about 4pm he let out a big sneeze and he felt it go back to normal completely!

@MinxieMax we had never heard of the vagal manuever but I am wondering if the sneeze tensed a similar muscle. Do you mind me asking how you do the vagal maneuver?

So interesting seeing everybodies messages. My husband is only on flecanide and not blood thinners as he was told he doesn't need them. However this thread is making me think it would be good to get a second opinion for a different doctor. We are going to book to go back to the doctors to ask.

@Recycledblonde that must be a relief that you're a paramedic so know what to do. I don't have much medical knowledge but for the last two episodes I rang 111 and they were so helpful and gave advice including advice on his medication so we were able to increase it (which was actually what worked the time before last).

DH was diagnosed with this on the operating table for a hernia repair. Took nearly 2 years (thanks to Covid) for him to have a catheter ablation - this has worked, but he's still got a burden of around 5 - 7 %. They're just keeping an eye on this, as he didn't tolerate bisoprolol very well and ended up on Dronedarone which made him feel horrible.

Touch wood he only gets odd episodes - he was sat in the chair last weekend and suddenly his heart rate was 175... but this only lasts around 5 to 10 minutes usually and we've only had to call an ambulance once who were amazing with him. He did have syncopal episodes with it before the ablation, and that was horrendous.

@suzie2023 I have three VMs that I use (often all three - one after the other!)

One is to take a huge breath, hold it for as long as possible and blow it out forcefully. Repeat.

Second is to cough very strongly, make a big effort to cough with force. Repeat. That may indeed be what got your H back to SR by sneezing.

Third is to bear down as if I was (TMI) straining with constipation. That can be the best one for me, as it does stimulate the VN. My face can go red with the effort lol 😂

We use the valsalva manouvre for SVT although not for fast AF, if that doesn't work we try a bumpy drive to hospital which is not difficult with the amount of potholes around.

I find the "bearing down" VM most effective.

Bluebells1970 I was diagnosed with AF in October last year. I had vague feelings of not being quite right but didn’t really know how. Decided not to even try getting appointment with GP so lucky enough to be able to afford a one off private cardiac consultation. (Irony is that I’m a retired nurse now in my 70s and am spending my hard earned pension on private Medicine!) Had a nasty all over body painful rash as allergic reaction to Adizem BP medication so changed and now on Bisoprolol very low dose and an anticoagulant. All going reasonably well I thought until Saturday just gone. I have Fuchs Dystrophy an eye condition which can cause blindness if not treated with a corneal transplant. So there I was lying on the theatre operating table having been attached to the usual monitors when the anaesthetist said he couldn’t go ahead as my heart rate was too fast and so too risky.

i was in shock and bitterly disappointed, I have waited for some time for my eye operations. I have asked the gp to refer me to Bart’s as they have good reputation for heart health. But because I have no idea when that will happen I have booked an appointment with private cardiologist who specialises in AF for next week. Can’t tell you how down I feel.

@Yujismum DH has had 3 further attempts to have his hernia repair and each time the anaesthetist has refused to go ahead with it - it's incredibly frustrating.

He's got another surgery booked for in 2 weeks time - and sees the anaethetist next week but I'm not honestly holding out much hope. We've asked for it to be done under spinal but for some reason they're not happy to do so.

I utterly understand how down you must feel with it. DH's hernia is now past keyhole surgical repair and it's worrying me sick that it could strangulate.

I'm so sorry to hear that @Yujismum
My husband had an equally disappointing experience where he was waiting for a medical procedure which should have been a straight forward 30 minute procedure but the day before it was cancelled last minute due to his heart. We understand safety first but it still feels disappointing doesn't it.

Hopefully the private cardiologist is able to advise a way to get your heart in a place that you can have the sugary for your eyes. Keep us posted.

Thanks @MinxieMax for the tips on the VMs!

Bluebells1970. Just re read your original post and see your DH has had ablation and yet still having enough of a problem for operation not to be done. I’m so sorry I understand what a worry it must be. That makes me more concerned about my situation as well since I was hoping that if I could get the treatment, whatever the consultant suggests, then I can have my eye ops. Have to have two operations in each eye. Eyesight is deteriorating and I’m worried.

suzie2023. Yes it is disappointing. Did your DH manage to have the procedure done or was this very recent? I actually felt a bit sorry for the anaesthetist, I had a few quiet tears and I think he felt badly about it. As you say it has to be safe and the anaesthetist obviously has a duty of care.

cptartapp. Did you have an anaesthetic? I thought ablation was only done under GA but someone on here said about making sure you got a GA. Hope you feel less like being mown down soon!

Yes I had laser ablation. My consultant said he always gives a GA. I know others maybe using a different technique that have just had sedation, not sue I would be keen on that tbh.

cptartapp
Yes I had laser ablation. My consultant said he always gives a GA. I know others maybe using a different technique that have just had sedation, not sue I would be keen on that tbh.

Me neither!

Hello again all Afibbers. Just to mention I had a GA for the Watchman procedure, all went well. I asked the surgeon for sedation only as I had never had a GA before! He said it wasn't possible as I had to have a Trans Eosophageal Echo (TOE - a tube down the throat to the back of the food pipe to see where the device and wires were going to the Atrium). So I placed myself in his hands.

Anyway, after the surgery was done and I had come around, I asked if I'd had any AFib episodes during the procedure. YES was his answer but he said it was controlled by them.

TBH I'm so glad I was knocked out for it all! I know it's not the same as an ablation but they do use wires from the groin up to the heart area. The difference is they are placing a device in the atrium, but an ablation is "burning" off the bits that cause the electrical misfiring. Ablation does not require a T.O.E (trans eosophageal echo).

Also people in general should be reassured that Afib is not heart disease. It is electrical, whereas heart disease is the plumbing. I had a calcium scan and got a ZERO score which is very reassuring. I also had every other cardiac test you could mention, and Afib was the only diagnosis.

For those interested there is a forum on FB (members only) called "Atrial Fibrillation Support Forum". It has mainly US members but many UK and elsewhere. It is a mine of information about patients' experience of ablation/medication/QOL/ lots of stuff. Just thought I'd mention it.

DH had his catheter ablation under sedation. He went to Bristol Heart Institute as our local hospital doesn't offer this, and they were amazing - though he was put on blood thinners as soon as they diagnosed afib, and had a massive bleed in his groin from the vein they used so had to stay in for 2 days... every time they removed the pressure clamp it started bleeding again.