Struggling

[Hannas]

Hi all, I’m 28 and got diagnosed with AF just before my 26th birthday. I’m on bisoprolol 5mg and flecainide daily and I’ve had many ECG’s and an ablation. I am a fit and healthy (was) girl who used to be able to keep busy all day without having to take a rest other than to eat.

The AF is really taking its toll on me- daily activities and by that I mean chores, I take breathless for no reason, my heart goes 10 to the dozen for absolutely no reason (anyone would think I’ve run a marathon) and I am tired all the time with sudden bursts of energy.

Please can you advise me on how you all cope?

Very much appreciated 😃

[3killeens]

Have you thought about having an ablation I have never looked back since I had mine ,good luck

[Bagrat in reply to 3killeens]

OP says she's had an ablation I think

[Liverpool10]

Hi Hannas sorry about your condition! The only thing to comfort you is that many many of us are suffering daily so your not on your own!

Do not let your doctors fob you off ! Have a plan to tackle the AF! If you drink alcohol and other substances then come off them. Go easy on the caffeine! Take up yoga and stay calm when it all happens to you! Now see the doctor and tell him what is wrong to detail and what you want to happen or they will ignore you! Steve

[icklebud99]

Morning Hanna, I am sorry to hear you have this disease, however, it is all about finding the correct path now for a better quality of life. You need to go back to your specialist EP or Cardiologist and have the Bisoprolol changed to another beta blocker as it causes all the side effects you describe and can be totally dabilitating to some people (me included). I was on Atenolol and Flecainide before my ablation, now only on Atenolol and my QOL has changed so much. Don't despair, even call the Cardio nurse if you cannot get an appointment soon and your request will be relayed to the Cardiologist or EP to decide whats best for you. Keep your chin up and hopefully you will feel better soon.

[Bagrat]

Hi Hanna, I too think it would be worth reporting back to your EP or cardio. Don't know how long since you had your ablation as things can take time to settle but I had similar symptoms when on a higher dose of flecainide with no beta blocker. ( but I am much older than you)

Good luck and have a read on main website, lots of info.

[Hidden]

A different beta blocker and a change in the dose of your Flecainide may help. You may need a second ablation, perhaps for atrial flutter induced by the first.

Talk to your arrhythmia nurse. You are far too young to be thinking in terms of “coping”.

[Mike11]

I think this needs to be added to the AF website banner -

"IF YOU ARE ON BISOPROLOL AND SUFFER BREATHLESSNESS, YOU ARE PROBABLY AN UNDIAGNOSED MILD ASTHMATIC SO SEE GP IMMEDIATELY TO CHANGE TO NEBIVOLOL".

Would cut down the number of posts significantly

[Thomas45]

I have no medical qualifications but I found that Flecainide worked for me once I was put on the the right dose. Just Flecainide and an anticoagulant. When I was found to be in asymptomatic persistent AF, about 20 odd years after my first AF symptoms, I was taken off Flecainide. When I was in hospital having my appendix out a well-meaning hospital doctor put me on Bisoprolol. For seven weeks my heart rate was lower than it had been. On Christmas eve the Bisoprolol caused the first side effect of urticaria, painful intermittent but at least daily rashes on my body, arms and legs. I was taken off Bisoprolol under medical supervision. I also had a second side effect of exacerbation of asthma.

Prescribed drugs affect people in different ways so first contact your medics.

You didn't tell us how long it is since your ablation, and maybe you're still recovering from that.

Go back to your GP, and specialists and they should be able to improve your quality of life.

I haven't given up a weekly glass of wine and have never practised yoga. I am sure that in my case both coffee and soya triggered some AF episodes so I gave them up 8 years ago.

[Treffynnon]

Hi Hannas

As most of us sufferers have discovered there is no "one size fits all" solution to AF. In my view it's essential to take charge of your relationship with your EP/cardiologist/GP and experiment with different combinations of drugs to find a mix that works for you. Like you, I was fit and healthy, although much older, and I found most beta blockers to be unbearable, causing fatigue, breathlessness and nightmares. The best of the bunch for me was Nebivolol which I took for a few months after my last cardio version, 7 years ago, combined with flecainide and for for the last 6+ years I have just taken flecainide. Almost 7 years ago, as an experiment, I stopped alcohol for a month as it was pretty clear red wine was a trigger, and I never started again. Coffee doesn't seem to affect me but I limit myself to two or three cups a day max.

There seems to be a general presumption out there that if you have AF you have to take beta blockers; you don't. The trick is to experiment to find what treatment gives you the best quality of life. This is all about symptom management not cure and you are the only one who can judge what works best. If you don't get the help you want from your EP/cardiologist/GP then move! Best of luck.

Steve

[KMRobbo]

Hi ,

When did you have your ablation? Did it improve your symptoms at the time? Have they got worse since?

I ask as I am surprised you have a very fast hr with 5mg bisoprolol. So that suggests you are still in AF despite your ablation, or you are in A flutter as has also been suggested I am not not medically trained but I have had both a fib and A flutter . I was not breathless in afib but was in A flutter ( there are people on this forum who are the opposite way around so I don't think there is a set pattern ). When did you last have an ECG and were you breathless with a fast hr at the time?

Regards

[Jamila123]

Hi

Just a word do you have any congenital heart problem or have you been over exercising

Because it is unusual to get afib u less above

Normally you would get SVT at your age

However I would not worry u have age on your side

First before u set off and have anything done

U need to find why you are getting this if u can

For me it was extreme and I mean extreMe overwork and stress which produces oxidative stress in the body

Like what happens to athletics when they over excerise

I found out it was this and completely changed my lifestyle

Now I don’t get it

Since I did that over 1 half ago

I am not on medication and have not done any ablation

I believe u need to look at your self and find your triggers

Afib can go away if u don’t have heart desease

Research think out of the box

And you will be fine and lead a healthy life

🌸

[Hannas]

Hiya, thanks for your replies!

I have Afib and aflut and had many other answers since getting the results of my MRI. For instance I’ve had a mitrail prolapse too!

I also only have 1 cup of tea a day, alcohol is a treat (once in a blue moon) and I don’t over exercise.

My life style at the moment seems to be pretty basic:- sleep, sofa, food, chill again and bed!

On a really good day I can get myself to work but as soon as I’m home that’s me done for the day!

I have had all the tests going from ECG to a week long ECG, MRI, ablation, scans. You name it I think I’ve had it done.

I don’t take any other meds on a regular basis.

A girl is confused here 🤨

[AIW58]

Hannas it really would be worth pushing your cardiologist for some answers and as had been suggested a plan for managing this. Is there an arrhythmia nurse involved in your care? I've found mind to be helpful. Definitely think your meds need review. What are they planning re the prolapsed mitral valve? Do you know why that occurred?

Really hope you get something sorted soon and things improve.

Take care.