help pls i am miserable 😭

[Hgggg]

I am writing in regards to my mom who is turning 56 in March. Her journey with afib started in 2019 when she had sleep apnea and woke up with it (after that she did a sleep study & got the cpap). Since then she dealt with paroxysmal afib, she would have an episode after high stress or when she had a cold,flu, etc. Averaging 1 every couple months.

In May '24 she travelled to Algeria. Long flight, slept poorly before, during & after & also got either covid or a cold. She got back into afib; noticed this due to her fast/irregular heart rate plus she felt tired doing things she normally felt fine doing. She didn't go to the dr's due to discomfort with their lower-end health system & since she felt fine when she didn't do anything strenuous she thought it wasn’t a dangerous situation. Eventually, about a month in, she does go due to her persistent high heart rate and she is given digoxin. She takes it and does follow up visits about every 2wks, dr still found her in afib during the last visit but told her to just keep on the meds and continue treatment in the usa. She said she felt better when she took it, took the last pill when she got here. She got back end of September & since she’s been asymptomatic her and I both thought she was ( atleast mostly) out of afib. We thought the treatment prescribed in Algeria did its magic and she was stable.

She had her routine cardio appt about a month after her arrival, first week of Nov, to which the dr found her in afib when she normally isn’t during office visits. She was also in afib during her women’s health appt. We were surprised as overall she felt fine. The cardiologist said she would come up with a plan, that it was ok to wait around until then as she was stable. Eventually she advised she start flecainide & then cardiovert if it doesn't work. I was uncomfortable upon reading about the potential side effects of the medicine, “prolonged qt” & I expressed this to the cardiologist, she said it is advised per guidelines but if i want a referral to electrophysiology we can do that. Ofcourse we were interested in a "specialist". This was 2 months ago. The electro dr today said it was a bad idea to stay idle w/o treatment. This is where I want to pull my hair out and jump off a bridge as I feel intense regret & responsibility since I was against the medication that may have put her in a worse condition. This feeling is eating me alive and I don’t know if I should blame myself or her cardiologist for not taking the situation more seriously; had she greatly emphasized the importance of taking it we would have.

Basically now she is in constant afib (she was also in persistent afib during her vacation & after arrival). During her visit today the dr said she likely needed 3 things: medication ( amiodarone), get cardioverted to "reset" and then an ablation. Me and mom sat at a loss for words as we didn’t expect all of that and thought/hoped medicine could get her back to normal sinus. We left his office anxious & depressed. I felt terrible for having intervened about my concerns for the new medicine & like I am slowly killing her. It keeps me up at night.

Had she been on flecainide 2 months ago maybe she wouldn't need anything else at this point? Why didn't the cardiologist make it clear that mom should be on flecanide while waiting for her appt?? ='( Is it true that the longer someone is in afib the harder it is to get out? Is it true that these 2 months that she hasn't been on rhythm control is gonna make it less efficient when she is?

Help please.. I’m here to answer any q’s

[BobD Volunteer]

Firstly stop beating yourself up. There is no "best" treatment for AF and all treatment is mainly for quality of life (QOL) as cure is a highly elusive thing where AF is concerned. Provided that heart rate is controlled and preferably under 100 bpm and the patient anticoagulated where appropriate there is little risk of lomg term problems. You do not mention anticoagaulants so wonder if your mother has been assessed using eh CHADS2VASC system. You can google this yourself and check or just speak to your consultant.

That said I avoid reading Dr Google regarding medical matters as I think it damages mental health and never read about side effects either and as a consequence have never had any!

[Hgggg in reply to BobD]

she was on asprin due to her age she felt better not being on anticoag, but lately when she realized it's persistent she's on eliquis..

Is it true that the longer someone is in afib the harder it is to get out? Is it true that these 2 months that she hasn't been on rhythm control, when she could or should have been, is gonna make it less efficient when she is?

ty in advance

[LordGabriel in reply to Hgggg]

When I was first diagnosed I was in constant AF for 5 months before my first cardioversion. It worked and I stayed in rhythm for a year. I had another one and then 6 months later an ablation whilst still in rhythm.

[Hgggg in reply to LordGabriel]

were you on holter to confirm the persistent 5 months? did you take any medication or just straight to cardioversion? and when you said still in rhythm are you saying from the time of the cardioversion until the ablation you remained afib free?

ty in advance

[BobD Volunteer in reply to Hgggg]

No, so long as she was rate controlled it should make no difference. Maybe after a year or so but a couple of months is nothing in the grand scheme of things.

[Hgggg in reply to BobD]

all i keep thinking of is if i hadn't intervened to tell the cardiologist that flecainide scared me then she would've been in normal rhythm by now and i wouldn't have delayed the journey/process. their plan 2 months ago was that she take it for a week, they do an ekg to check if it converted her and if it didn't she do a cardioversion. it's not impossible she would've been in normal rhythm now if i had shut my mouth.. i want to cry. i deeply worry these 2 month of her constant afib, when she could've been out of it , will negatively impact treatment/her getting out of it now. you know the saying afib begets afib?... & just in general i read the longer one is in it the harder it is out and the less effective treatment.. and to think, although she was "stable", it's still my fault she was in it bcz i went against the cardio's plan & preferred to wait for her electrophysiologist referral appt.. but her cardiologist never stressed the importance that she take it while waiting.. even though the specialist said we shouldn't have just remained likeso.

& then there's the worry of heart failure. on her last xray there was some heart enlargement which made me feel sick to my stomach. if she remains in persistent afib i feel like she's bound to get hf.

oh God my head.

[FancyPants54 in reply to Hgggg]

The biggest problem your mum currently has is you. Panicking like this is helping no one. My dad went into permanent Afib in his 40's, never did anything other than take a blood thinner, and died in his late 80's. He wasn't particularly healthy with it in his 80's, mostly because he never did what he was told to do in the way of gentle exercise. But still, he had a long life in permanent Afib. I have inherited it from him (also in my 40's although I had episodes in my 30's too). I take anticoagulant and beta blockers to slow my heart rate. It doesn't stop me living my life. I rarely think about it, although I do have an appointment with cardiology in April to check a few things out as I've had a couple of other issues not related and it affected things for a bit.

Stop panicking. Stop blaming yourself. You have done nothing wrong and nothing to make things worse. You must be stressing the hell out of your mum behaving like this though.

I was never offered an ablation, or flecinade as I manage well without. But I would not take Amiodarone because I am hypothyroid and it is contraindicated for thyroid issues. It can really mess up the medication for thyroid.

Cardiologists are plumbers and electrophysiologists are doctors for the electrical conductivity of the heart. Very different specialisms and will have different approaches. I've never seen an EP. I would quite like to at some point.

Your mum needs to learn what wears her out and reduce that activity whilst building it back up slowly. We need to be our own advocates as far as possible. Good sleep habits, avoid saunas and hot places, if a food affects it, avoid it. Some people can't take alcohol, but those of us in permanent Afib tend not to have such issues.

Calm down. That's the very best advice anyone here can give you. And stop stressing your mum. Avoid Google. Know that millions of us live full and active lives with this. Many of us never know we have it unless it's picked up in a routine test for something else.

[LordGabriel]

I take Apixaban and Bisoprolol. Right from the start.

1st cardioversion lasted 12 months. I went out of rhythm running for a bus. I was given Flec as a pill in the pocket so I took it. I stayed in rhythm. 6 months later I had an ablation whilst still in rhythm.

That was in 2020- I’ve had the odd attack since and I take a dose of flec.

Possibly I’ll have another ablation but my point was I lived 5 months out of rhythm, going to work etc and then my first cardioversion sorted it. No one told me it wouldn’t work or be hard.

[Hgggg in reply to LordGabriel]

so despite the 2 meds you took you were out of rhythm before the cardioversion?

[LordGabriel]

Yes, they weren’t for getting into rhythm?

Apixaban is for the blood thinning

Bisoprolol for the blood pressure and I think to slow your heart down a bit. I only take 1.25.

[Hgggg in reply to LordGabriel]

oh.. pardon my head is confused & overwhelmed.

so what brought you to get the cardioversion.. how did you know you were in afib for 5 months? what were your symptoms..

[LordGabriel]

I knew my heart was beating wrong, I could feel it so I went to my doctors. I was diagnosed immediately but had to wait for a hospital appointment and then a cardioversion. It was just a queue … a list.

[Hgggg in reply to LordGabriel]

so upon your dr's appt they found you in afib and left you with no rhythm control meds & then decided to go straight to cardioversion?

[LordGabriel in reply to Hgggg]

Yes! That’s exactly it

[Hgggg in reply to LordGabriel]

How come they didn't want you on rhythm medication?

[LordGabriel in reply to Hgggg]

I’ve always presumed they wanted to try a cardioversion first.

I knew nothing about AF back then!

[Hgggg in reply to LordGabriel]

& you haven't been in afib since the ablation? do you have a monitor to check?

ty in advance..

[LordGabriel in reply to Hgggg]

Yes I have - 4 times and each time Flecainade gets me back in rhythm. I’m on the list for another ablation.

[Rainfern]

Hi and welcome to the forum. It’s good to hear your mum has been offered cardioversion and ablation. I followed a similar path of treatment and am now AF free. I had to wait a long time for the ablation as waiting lists were long after the pandemic. I was worried that being in persistent AF for a year would greatly lower my chances of success, but my EP was reassuring and this forum was a godsend. Don’t beat yourself up. My own GP would have just put me on meds and left it at that - this was the norm until not long ago, I sought out a private consultation with an EP to get better clarification to my questions. Some people are less symptomatic than I was and opt not to have any interventions apart from an anticoagulant. Good luck to your mum from me!

[Hgggg in reply to Rainfern]

I'm glad you are now afib free.When you said you were in persistent afib for a year, was it poorly controlled with medication? Was it everyday? Did you notice it? When did you do it? What about cardioversion?

Ty in advance..

[Rainfern in reply to Hgggg]

Hi Hgg, it was persistent- that is how it was diagnosed and how it showed up every time on the blood pressure monitor I bought that also picks up AF (Microlife) and on my iPhone. Some of the time I didn’t notice, once or twice I had the ambulance out when my heart rate shot up but quickly settled with a beta blocker (propranolol) and I didn’t need hospital. Most of the time it was just there. I was relieved my heart was in good shape but I hated being out of rhythm and getting breathless on the stairs or out walking.

I was diagnosed autumn 2022, had the ablation Oct 2023 and had a couple of cardioversions in between. Neither of those kept me in rhythm longer than a week, but that small window is what gave my EP confidence that an ablation would be successful. I went to one of his public talks on the latest treatments and did lots of research, joined this forum, practiced meditation and worked on overcoming my fear. Medications included amiodorone which did nothing for me and digoxin which relieved symptoms of breathlessness because it gives you a stronger heartbeat. It doesn’t make the af go away. I’m off all meds now apart from anticoagulants.

My sister has af, barely notices it and doesn’t want cardioversions or ablation. That’s her choice. But if she spent half hour with an EP she’d learn that it’s generally the recommended route these days. EPs have had more and more practice with state of the art equipment and are so skilled. Your mum has nothing to be afraid of. If my AF returns I shall be back for a “touch up” ablation without any doubt.

[Hgggg in reply to Rainfern]

so between the wait for the ablation you remained in persistent afib? for how long? were you on any meds? is your sister taking anything?

thank u in advance.. i truly feel unwell.

[Rainfern in reply to Hgggg]

Hi Hgg, you say you truly feel unwell - I’m a little confused as your post was regarding your mother? Hi to your mum if you’re on the forum together!

I don’t know what meds my sister is on. We tend to talk about nature, politics, books, art, family! My point is that some people are asymptomatic. My understanding is that people who experience unpleasant symptoms are more likely to be offered interventions so that is the only advantage to feeling horrid symptoms. My AF was probably no better or worse than that of my sister.

The only time I was not in persistent AF was in the few days following cardioversion. For the second cardioversion I was put on amiodorone for 2 or 3 months beforehand as this can sometimes keep the heart in NSR for longer following cardioversion. It didn’t work for me and I was only in blissful NSR for a few days. I was taken off amiodorone but as it’s such a toxic medication and stays in the system so long I still have regular tests for potential thyroid damage - touch wood all’s well.

Following the second cardioversion I booked a second private appointment with my EP to discuss further treatment. I could not take bisoprolol as my blood pressure already tends towards low. So he prescribed digoxin which really helped with the breathlessness. I was taken off this the day after my ablation and have only been on anticoagulant since then.

In the run-up to my ablation, I sent in regular ECGs to my EP, taken from my iWatch. These, along with the blood pressure record I kept, were considered very useful by my GP and the cardio team.

Everyone on this forum has a different approach to their AF and its treatment. Different GPs, EPs and cardiologists have different approaches too! That’s why it can be so helpful to get second opinions and to book time with the real specialists, the EPs who work their socks off in both private and NHS situations. Meanwhile remember both the AF association and British Heart foundation have helplines - I found both very helpful. Good luck!

[Mugsy15]

There really is no reason to be so anxious. You seem to think that AF is a death sentence - it's not! What is the worst case scenario? I'd say it would be your mom agreeing with a Cardiologist, after all attempts at restoring sinus rhythm have failed, to stay in permanent AF.

That's a way down the line yet, but even if it does come to that, it's fine! She is in a better position than millions of people worldwide who are walking around oblivious to their AF and are therefore untreated. Hers will be controlled; there are many different medications and procedures available to do that and her life expectancy will not be affected!

None of this is your fault, or anyone else's for that matter and it's not the doom-laden, dire situation you seem to think. Neither Cardioversion or ablation are anything to worry about; I've had both and would rather have either than a big filling at the dentist.

Relax!!!

[Hgggg in reply to Mugsy15]

firstly thank you for your encouragement it made me feel less soul-sick and loosened some knots in my stomach x(

all i keep thinking of is if i hadn't intervened to tell the cardiologist that flecainide scared me then she would've been in normal rhythm by now and i wouldn't have delayed the journey/process. their plan 2 months ago was that she take it for a week, they do an ekg to check if it converted her and if it didn't she do a cardioversion. it's not impossible she would've been in normal rhythm now if i had shut my mouth.. i want to cry. i deeply worry these 2 month of her constant afib, when she could've been out of it , will negatively impact treatment/her getting out of it now. you know the saying afib begets afib?... & just in general i read the longer one is in it the harder it is out and the less effective treatment.. and to think, although she was "stable", it's still my fault she was in it bcz i went against the cardio's plan & preferred to wait for her electrophysiologist referral appt.. but her cardiologist never stressed the importance that she take it while waiting.. even though the specialist said we shouldn't have just remained likeso.

& then there's the worry of heart failure. on her last xray there was some heart enlargement which made me feel sick to my stomach. if she remains in persistent afib i feel like she's bound to get hf.

oh God my head.

[Rainfern in reply to Hgggg]

Hggg …. I was terrified that every day of persistent AF was taking me nearer the edge of no return! But really a few months makes no difference. My EP explained this when I went to him and said I was willing to get equity release and pay privately (20 grand odd!) rather than live with AF the rest of my life. He said the extra 6 months waiting on the NHS waiting list would make no difference- the Afib begets Afib mantra refers to much longer periods of time.

Please bear in mind that every single day thousands of ablations are carried out across the country. This forum only represents a small fraction of that number. Persistent AF is treatable and every year results improve. Your intervention has done absolutely nothing to change the outcome of your mother’s AF journey. Medication is always a juggling act.

[Hgggg in reply to Rainfern]

her cardiologist yesterday wants her to start multaq and then a cardioversion weeks down the line..

all that's going through my head is i made that cardioversion less effective since she's doing it after being in afib for 2-3 months.. perhaps having took the flec 2 months ago she wouldn't even need the cardioversion now (which is real scary for her) cause it would've converted.. 😔

also i am so confused regarding the multaq bcz google reads: it's for 1.those that already in nsr, 2. to reduce hospitalization from afib . didn't read about it possibly converting.

[FancyPants54 in reply to Hgggg]

You really aren't listening are you? You keep repeating the same things. Still blaming yourself despite multiple people here telling you that you made no damn difference at all. A few months is nothing. Most people try a few medications before they find one they like, for whatever condition, so that doesn't matter either.

She is not in a bad place! Listen to the people here and stop Googling. You are going to give yourself a breakdown! It's ridiculous. No one can say if Flecinade would have converted her. It might have done, or it might not. It might have converted her for a week and then back into Afib. No one knows. A cardioversion is nothing to worry about. Painless and quick and she will be sedated so she won't know anything anyway. After my one cardioversion I went to the supermarket to get food for dinner.

You are being your own worst enemy here. Please stop it.

[Mugsy15]

It's not your fault. There is no guarantee the Flec would've made things better anyway; there are plenty of people on this forum for whom it has made things worse, not better. Others say the opposite of course. Dilatation of the atria is normal as we age, as is the horribly-named 'heart failure'.

The bigger picture is, I don't think your mum's AF journey has been impacted much by whether she did or did not take Flec over the last couple of months. And I'll say this again: if she stays in AF for the rest of her life, that's ok! I have several friends who are in permanent AF and get on with their lives quite happily.

Your anxiety over something that's been and gone and doesn't matter much anyway does nothing to help your mum and is likely to impact your own health. You acted out of care and compassion, not with malice and if anything it shows how deeply you care about her. My advice is to stop beating yourself up unnecessarily and instead focus on being the good, supportive daughter you undoubtedly are.

[Hgggg in reply to Mugsy15]

her cardiologist yesterday wants her to start multaq and then a cardioversion weeks down the line..

all that's going through my head is i made that cardioversion less effective since she's doing it after being in afib for 2-3 months..

also i am so confused regarding the multaq bcz google reads: it's for 1.those that already in nsr, 2. to reduce hospitalization from afib . didn't read about it possibly converting.

[Mugsy15]

Judging by what you said in your original post, she has had AF since at least 2014 and probably a while before that - over a decade anyway. A couple of months of persistent AF isn't going to make much difference to her chances of a successful CV and ablation in my humble opinion.

Mine was persistent for best part of a year before my procedures, and I was never prescribed Flecainide or any other drug during that time. I've been AF-free for three years.

[Hgggg in reply to Mugsy15]

she's had it since 2019. in the past it was one a year, then every 6 ish months, then since she travelled long distance, north africa, with lack of sleep factor and supposedly got some viral infection or even covid it's been persistent. they gave her a the lowest dose of amiodorane there but it didn't seem to convert her. i assume doc was worried abt side effects.

I hope you continue to remain afib free, 3 years is a blessing.. when you say persistent do you mean you had it daily? and why didn't they prescribe anything?

what is going through my mind now is perhaps having took the flec 2 months ago she wouldn't even need the cardioversion now (which is real scary for her) cause it would've converted.. 😔

[Mugsy15]

Persistent means constant, 24/7.

Sorry, you did say 2019.

Cardioversion is nothing to fret about, she'll leave the hospital wondering why she was worried. A quick, simple procedure in which you go to sleep briefly then wake up for a cuppa and biscuit.

I don't remember why I wasn't medicated during my persistent spell, but I hate taking drugs so I'm happy not to have done.

[Hgggg in reply to Mugsy15]

i'm assuming you were asymptomatic during the spell? & if so what did you use to confirm that persistency

[Mugsy15 in reply to Hgggg]

No, I was very symptomatic. The analogy I've used here many times is that it was like my chest was a tumble dryer and someone had thrown a pair of trainers in and set it away permanently.

[Hgggg in reply to Mugsy15]

wow and you preferred that sensation in comparison to taking something that could've made it go away? I get it you were still able to go about your daily life?

thank you in advance

[FancyPants54 in reply to Mugsy15]

I did better than you. I got a cup of tea, a sandwich and a banana!

[Mugsy15]

No, I would've taken Flec if I'd been offered it but getting finally diagnosed and a Cardioversion scheduled took up most of the time in persistent AF and I never was. Then between the CV and the ablation I was given Flec and Bisop as PIP just in case, but remained in perfect sinus rhythm throughout.