Hi Everyone. I have only had two instances of AF since I was diagnosed in A&E in November 2022. My last occurance of AF was on 30 December. Since then my GP has let me come off the Diltiazem which had some unpleasant side effects but I am still on Flecainide 50mg twice daiy and Edoxoban. I bought a Kardia and keep a close check on heart rate etc. It is always between 70-85.
My problem is that, although I am not in AF, I often become very breathless which is a really horrible experience and very scary. It is not constant. Somedays I don't have it at all and I can be really active with no ill effects. Then another day I wake up breathless and it can last all day, Then my energy levels are really low. I can't understand why this should happen when not in AF.
Could it be the Flecainide (I'm not good with any drugs)? I also notice that many of my 'heart' sensations, including when I was in AF, seem to happen following a meal although I haven't found the triggers yet. I have just bought John Day's book so hopefully that may help.
Any other suggestions ?
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MKG50
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Another poster has been complaining of exactly the same thing, unfortunately despite many investigations by doctors and suggestions on this forum it is still a mystery. However, it is possible you are having episodes without noticing eg at night. Before I was diagnosed with AF I used to have episodes of breathlessness which were blamed on my asthma until I was treated for AF.
It is generally not a good idea to take Flecainide without a beta blocker or calcium channel blocker because it can induce Flutter. So if the breathlessness came on after you stopped Diltiazem it is possible you are experiencing slow Flutter but that is for you doctors to diagnose unless you have a Kardia. (It doesn’t diagnose Flutter but you could recognise it yourself).
Hi Buffafly. I've written this reply twice and it got lost so sorry if comes up again.
I do have a Kardia and it doesn't show AF when I'm feeling so breathless. I guess this is another of those unanswered AF problems. My GP doesn't seem bothered and my EP appointment is weeks away so I suppose I'll just have to plod on and wait it out.
May want to ask to wear a holter monitor or other medical device for a continuing period to determine the action of your heart. Personal opinion, but I trust the medical devices over Kardia and others. AF can be silent.
May I ask the side effects of Diltiazem ? I am considering a switch from Metoprolol
I got a better reduction with Bisoprolol. Also lost the pauses at night. I had the stroke at night when asleep at 2am a horendous headache. I don't getheadaches.
Metroprolol is the culprit for breathlessness. And fatigue any task stopped and I would lie down and go to sleep.
If the specialist agrees swap the Metropolol with Bisoprolol start low and get your twinked best dosage for you. Even 102 is not controlled and no operation of any sort would not go ahead,
Diltiazem in combination with Flecainide gave me avery spacy head fog feeling and I often felt dizzy. My GP said stop the Diltiazem and it's been much better except for still getting the breathlessness.
Have you recently had a cold or flu like virus? Get yourself a little finger oxygen monitor and check your oxygen levels. Amazon sell them. You might have a lung infection that's hanging around.
Many possible causes for breathlessness. Singwell's suggestion can help rule out some and alert you to the seriousness of the condition. You can have sudden build up of fluid in your lungs ( Congestive Heart Failure) which may be due to a cardiac arrythmia or valvular disease. You could have bronchospasm due to asthma or COPD. A Chest xray would be an easy first step to diagnose the problem. Pulmonary Function Studies could be helpful as well as an echocardiagram. I would consult a Pulmonologist as well as a Cardiologist. Best,etheral
Thanks Ethereal. I did have a chest X Ray and CT scan when I was first diagnosed with AF in A&E. All ok. If it gets any worst I'll go back to the GP and ask for some further investigations.
Breathlessness from the heart seems to occur when the ventricles aren’t pumping so well. This can happen to some people during AF but I imagine there are many states that can bring it in that the Kardia can’t detect. I don’t get short of breath as such (i.e, huffing and puffing) but do have days ever I need to breathe more deeply more often and feel washed out doing things. On those days, my heart speeds up more quickly, I get more ectopic beats than ever and feel palpitations. Why, I don’t know. I have LBBB though, so that might be it. My doctors have never shown concern.
Oddly, when I have AF I don’t feel especially different.
i have been taking flecainide for two years and no problems. Sometimes you can be in afib without realizing it and the flecainide helps my flutters and skips.. also keeps my heart rate from getting to high. My doctor seem to think that if you want off it you most likely are going to need an ablation. It’s works for some but not others same as flecainide. I would contact my cardiologist.
Thanks Glb1948. It's still fairly early days for me. I was only diagnosed with AF in November totally out of the blue. I'm still trying to stabilise on the drugs and the associated symptoms. I'm waiting for an appointment with my new EP.
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Why still so breathless 6 weeks after ablation?
Return of AF feeling so down. 
New to AF. So many thoughts
Breathlessness in Sinus Rhythm
