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Atrial Fibrillation Support

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Bhoyo profile image
14 Replies

First diagnosed approx 8 years ago. Didn’t have a clue what was doing on, happened whilst running in Fun Run. Was relatively fit and had trained for run.

Advised of all triggers and over years has become more frequent.

Still currently on PIP but I have been advised I am heading for daily medication.

Was on daily aspirin for years but advised to cease 6 months ago.

Beta blockers don’t agree with me.

Last episode 2 day ago.

Anyways take care everyone in respect of recent times and interested to read others experiences.

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Bhoyo
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14 Replies
jeanjeannie50 profile image
jeanjeannie50

Welcome to the forum Bhoyo. You'll find we're a friendly bunch on here.

It would help us if you let us know your age and what medication you're taking at the moment.

Do your AF attacks leave you exhausted, or make you feel ill, and how long do they last?

Jean

Bhoyo profile image
Bhoyo in reply tojeanjeannie50

Good morning(in Oz) Jeanjeannie,

I am 56 and my current PIP includes Flecainide andMetropolol.

My AF normally lasts around 24 hours but even with the medication it is taking longer to revert.

I can function but have a general unwell feeling that I push through whereas previously I would have attended A&E. I do get scolded by my family but I am not blasé at all re AF.

The beta blocker drops my blood pressure and heart rate very low, I know that is it job but it rolls me.

My GP has discussed alternates and I believe in near future I will look at alternate drug/dosage.

I have had the paddles ( cardioversion) in the past and I have spoken to the specialist re Ablation.

I am endeavouring to have as little medication as possible but if AF becomes even more frequent might not hav e a choice.

My biggest fear is when I am in AF and not being on a thinner is of clotting.

jeanjeannie50 profile image
jeanjeannie50 in reply toBhoyo

What dosage of each do you take?

I'm on 2 x 50mg Flecainide and 2 x 12.5 of Metoprolol daily. Metoprolol has a very strong effect on my BP and honestly they almost killed me once in hospital when they gave me one dose of 2 x 50mg. Why don't you try taking the pills daily, we all usually end up doing that anyway. I know you don't want to take pills, none of us do, but it could make you feel better.

Bhoyo profile image
Bhoyo in reply tojeanjeannie50

My dosage for PIP is currently 1 x 100 mg Flec and 1/2 x 50 of Met.

GP has advised Met dosage would be reduced for daily dosage.

Had similar experience re Met, which causes my reluctance.

Thank you for sharing your info and gives me more confidence re daily medication.

jeanjeannie50 profile image
jeanjeannie50 in reply toBhoyo

I used to take both meds as PIP, but then needed to take them every day. I was on 2 x 100mg Flec daily with the Metoprolol, but that dose of Flec gave me the most awful nightmare hallucinations.

We all tend to stop going to A&E as we get used to having AF attacks. I don't think I'd ever let one go on for too long if it made me feel dizzy, sick, faint or I experienced pain. If the heart is beating super fast and you continue to feel as I've described you have no choice really but to get checked out. It's strange, but sometimes when we get to hospital the rate reverts to normal quite soon and I believe this is because we feel safe there i.e. our anxiety reduces and we know from experience that it's anxiety that often keeps the AF going.

So if we can do our best to relax at home, that will often cure an attack. Some people meditate or practice slow deep breathing, or anything to distract yourself from what your heart is doing.

I've had AF for 15 years.

in reply toBhoyo

The risk is the same if you are in AF or in sinus I'm afraid

Bhoyo profile image
Bhoyo in reply to

Thanks for reply Mikee69

in reply toBhoyo

If your episodes last as long as 12 hours you really should be on an anticoagulant- I take edoxaban which doesn't seem to be too bad- my AF episodes usually last 2 hours or so with flecainide as PIP and bisoprolol added when heart rate over 140 but we are all different snd have to find what works for us as individuals- good luck finding what works for you!

Hello Bhoyo, although new to the forum, having had AF for some years, you clearly have some useful knowledge about the condition. I think it might help you if you take a look at the 1st pinned post to the right of the page headed, useful links for Newbies and Oldies. It will help you to navigate through some helpful information predominantly produced by the AF Association. From what you have said, it sounds as though you think that your current medication is becoming less effective and maybe now is the time for you to consider other treatments such as an ablation. That’s not an easy decision for some to make but it is rare that we hear from forum members regretting that they have chosen that route. Forums can often provide a platform for folk who have experienced problems so when you consider how many thousands of ablations are performed each year, it is helpful to know that regrets are few, if any.

You mention anticoagulation and this is covered comprehensively in the “pinned post” and you are probably aware of the CHADsVASc score system. At your age, your score maybe 0, but if it’s more than 1 then you should discuss it with your doctor. As has been said, once you have been diagnosed with AF, the risk of stroke is higher whether or not you are in AF so you need to be sure what your score is. No disrespect to any GP, but the only way to establish an effective treatment plan specifically for your condition is to see an Electrophysiologist (a cardiologist who specialises in arrhythmias). This might be difficult at the moment, so if it’s possible, consider an initial private appointment which should cost under £300 but be cautious about the cost of tests such as an echocardiogram as these can be expensive. If appropriate, you also need to make it clear that you want any ongoing treatment carried out by the NHS. However, do not think this will reduce waiting times for procedures because it won’t! Hope this helps, good luck......

Bhoyo profile image
Bhoyo in reply to

Cheers FlapJack, thanks for your post in all respects.

Pinned posts, ablation and thinners, info much appreciated.

Ianc2 profile image
Ianc2 in reply toBhoyo

My local hospital now has two entrances for A&E , (one exclusively for corona virus) and are complaining that the number of people turning up for treatment has dropped dramatically. They don't believe that heart attacks have dropped by a third and are worried that people are putting their health at risk.

If you have an ongoing event you may find that a visit to A&E will get you looked at in detail (ECG. etc) and an appointment arranged for an assessment by a cardiologist, who should be able Identify and agree a treatment plan for you.

As Flapjack said earlier, consider going for a private consultation to get some certainty about what is going on. After all you can't take it with you.

secondtry profile image
secondtry

My thoughts on reading your post: Have a private cardiologist consultation asap and discuss a daily dose of Flecainide to stop future episodes, as the more you have the more you will get.

6 years ago I was offered an ablation but for various reasons chose to postpone that and take 200mgs Flecainide per day instead. I don't take anything else as my pulse & BP were already low. Flecainide is a powerful drug but comparatively old, tried and tested, more of a problem with complications if you are post 75 with other heart conditions I belief. I am assuming you are younger and have Lone PAF. Good luck.

john-boy-92 profile image
john-boy-92

Welcome. I was a runner for many years, and in the early days my heart rate when running and in Spin classes would be in the high 190s; clinicians put it down to my fitness. I was told that I didn't need an anticoagulant, and I ended up with a stroke. Learn from my experience. My knees aren't up to running these days but the rowing machine is great. My heart rate still needs to be watched as afib can drive it above 180 during a rowing session.

Bhoyo profile image
Bhoyo in reply tojohn-boy-92

Thanks for reply John Boy.

Must be contagious😉as my knees do not let me run anymore either.

I do still partake in long walks but the craving to run is still there.

The advice and experiences shared by all persons on this site has been invaluable. It has answered several of my questions/ fears but definitely broadened my knowledge.

Not sure if the rowing machine is for me as along with my dodgy knees, spondylethisis curtails my exercise regime.

Trained for and played sport for near on 40 years and body is now paying me back.

Not looking for sympathy(my wife says otherwise) just stating facts.

I still get my fair share of exercise, elliptical machine goes well but heart rate doesn't get too high( my doing).

I will be visiting my GP(Covid allowing)in near future and will more than likely be placed on daily medication which will more than likely include a thinner.

Re a previous post in regards to cardioversion. I have had this procedure once and was relatively seamless, even though I was informed a student would perform procedure. To be honest I was s@@ bricks but went under general and woke up in recovery, not too worse for wear and back in rhythm. I did have my wife drive me home and glad she did as I did feel a wee bit faint on drive home. Apart from my chest feeling like I had been kicked by horse/cow all good.

I have found on my several ( more frequent) visits to A&E that different doctors( whomever is on shift at time) have differing views on time spent in A&E and treatment for AF.

Sorry to hijack your post John Boy but thanks again for reply.

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