Greetings from an AF sufferer. - British Heart Fou...

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Greetings from an AF sufferer.

__Ollie__ profile image
13 Replies

Hello all,

Firstly I just wanted to introduce myself as this is the first time that I have been on the site, secondly I wanted to share my experiences of AF with you all and see if anyone has had similar issues.

Many years ago when I was 18 (Now 39) I suffered my first bout of what I now know to be AF. I went to the GP and this was put down to drinking too much vodka / redbull on a night out. Roll on many years of numerous undiagnosed instances of AF I finally got the diagnosis from a consultant in 2022, this led to me having a catheter ablation procedure in March this year and be placed onto anticoagulants (Edoxaban). Everything seemed fine post procedure and eventually I came off the tablets. This led onto late November where I picked up this xmas cough/cold/chest infection, ever since this I have started to suffer with continuous flutters and general arrhythmia. I am now awaiting a trip back to the GP to start the process all over again which is a bit disheartening (Excuse the pun) Apparently I'm a bit of an anomaly having suffered with AF since a reasonably early age, i'm just wondering if anyone else has experience of a similar situation.... and if so where did they go next as I feel a little lost with it all now.

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13 Replies
MummaSoap profile image
MummaSoap

Hi __Ollie__

I don’t have any advice or relevant experience that I can share but I wanted to welcome you to the forum and I hope you get some answers 🤞🏼

Best wishes

Soap 🧼

__Ollie__ profile image
__Ollie__ in reply toMummaSoap

Hiya Soap, thanks for the welcome 🤗

Valentina98 profile image
Valentina98

Hi Ollie

I can't offer any real advice but I as a fellow young person (I'm 25) there are a few young people on here and definitely with AF a believe there is a separate forum for AF that might be more helpful although we'd all help if we can

V x

__Ollie__ profile image
__Ollie__ in reply toValentina98

Cheers, it's great to hear from others in similar situations on here. I'll have a look for the AF forum 😃

Czech_Mate profile image
Czech_Mate

Hi OllieWelcome. AF didn't hit me until I was 66. I think with me it's at least partly hereditary. As Valentina said, there is another forum solely for Afib. There is some useful stuff and helpful folk over there too.

Forum members are not medically trained, but have various experiences on their various journeys. I've found it very supportive when things get tough psychologically.

Good luck on your journey. CM

Noodlesalad profile image
Noodlesalad

Hi sorry haven't had your experience but everyone I've interacted with on here is super helpful and friendly.Hope you get some help.

Happy New Year.

Gumbie_Cat profile image
Gumbie_Cat

Sorry to hear about the returning arrhythmias - sadly not uncommon. You are young to have this though, and I can imagine you will want to be really pro-active in getting this sorted as well as possible.

I have AFib, and reckon I had it a few years before I got the diagnosis at 67.

You will find the AF Association forum really useful healthunlocked.com/afassoci...

Also their web pages - heartrhythmalliance.org/afa...

There are many factors in treatment, starting with lifestyle, then medications and catheter ablation, or pacemakers for some. A newer thing, just starting to be available in the UK, is a hybrid or mini-maze.

I have ended up with permanent AF and rate control, but at just 39 you will want to really seek out that elusive sinus rhythm.

in reply toGumbie_Cat

The minimaze procedure sounds absolutely fantastic

Gumbie_Cat profile image
Gumbie_Cat in reply to

It does - though not offered where I live. Although I’m doing ok with just rate control for now.

meadfoot profile image
meadfoot

Try the atrial fibrillation healthunlocked forum. Tons of people with the same condition and its a very active and friendly forum. Welcome to the club none of us ever wanted to join but you will be in safe supportive hands and get lots support. Best wishes.

__Ollie__ profile image
__Ollie__

Thanks to everyone who has reply (too many to individually mention) your help and support is amazing!

Fullofheart profile image
Fullofheart

I was 29 when I first experienced AF. Didn't have any medical interventions (apart from a short spell on meds when first diagnosed) until a couple of years ago. Since then I have had 3 ablations, and third time lucky I am now in normal rhythm for the first time in 20 years. I was very lucky that they would try I think after nearly 20 years of uncontrolled AF. I know it won't last forever but I'm very much enjoying the respite! 😊For you, its likely that there are quite a few treatments routes possible.

A top up (RF) ablation could be a viable option or rhythm control meds. I would ask to speak to your cardiologist and EP to discuss next steps. Best of luck to you. Let us know how you get on. 😊

Carlamca profile image
Carlamca

Hi Ollie, our situations seem a little similar. I'm 42 years old and received a diagnosis of Proximal AF in 2017 after years of not knowing what it was/putting it down to too much caffeine or anxiety. They think i had SVT which deteriorated as i got older. I had an ablation in November 2023 and in January 2024 I had a virus which led to me getting pericarditis. I developed arrhythmia from this but it felt different to my AF as my AF wasnt persistent like this and didn'tseem to respond to medication like my AF did. I've just had results from my 48 hour heart tape and the cardiologist believes the virus/pericarditis may have impacted the electrics in my heart which were healing and led to me having a significant burden of etopic beats, day and night in the upper ventricles of my heart. Upshot is I need another ablation and have been put on Bisoprolol 2.5mg 2x a day and 50mg flecainide at 8pm every night to help me sleep.

What I will say is the etopic beats are really horrible to have and make me worry as they feel strong but are harmless and can happen. They are also increased by my anxiety. Deep breathing in through the nose, hold for 4 then out does help. The cardiologist hopes to resolve them with another ablation.

I really hope you've had the answers you were looking for and have been able to speak to your cardiologist about your arrhythmia.

Take care

Carla

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