Trying to get my head around managing my condition.

[QH1636]

I was diagnosed with AF in November. I’ve had and echo and 24 tape done. Due to and admin error, my cardiology appointment was booked for January next year, rather than this year. Now waiting for new appointment. I’m familiar with all the danger signs that I should get myself to hospital for. However, I’m still trying to get my head around managing the prolonged episodes of af. They seem to spontaneously occur from when I am quiet/resting, sometimes waking me from sleep. I do have a low resting heartbeat and wonder if this could be a trigger. I have had some weeks off work, but would like to get back (I am lucky to have an extremely good, supportive workplace environment).

If anyone has any practical day-to-day life management tips, I would be really grateful.

[jeanjeannie50]

There is a dedicated forum on Health Unlocked for people with AF. You might get more responses if you post there. Link is below:

healthunlocked.com/afassoci...

Jean

[Redactrice]

Hello, I also encourage you to look at the AF section, but I've had AF for over 10yrs and this is my advice in a nutshell.

You didn't say how old you are and whether you're in good health otherwise. I was diagnosed in my late 40s despite being a lifelong non-smoker, fit and healthy. There was no obvious reason for the AF, which came out of nowhere and occurred sporadically (it took quite a while to diagnose because it was so fleeting). This is called lone paroxysmal AF and it's the lowest level of risk. Depending on your age and general health, you may have a higher level of risk. Look into this. There is a quick online test you can do to assess your own risk level.

Avoid sleeping on your left side. This is often a trigger for overnight AF. I do sleep part of the night on my left side, but I am very slow and careful about turning over -- if I turn rapidly, it can trigger AF.

Drink decaf and cut back on alcohol. I haven't stopped drinking entirely, but I am not a heavy drinker (I have wine with dinner at weekends, avoiding alcohol on weeknights and at lunch except on special occasions), and I look at the % ABV. For me, red wine at 14% is more likely to trigger AF than rose' at 10.5%.

GPs and many non-cardiac specialists may panic if you present with AF, as if they expect you to die right there in front of them. I deliberately went into my GP surgery during an AF episode because at that point nobody had managed to capture it on an ECG (so I had been told, for more than two years, that I must have anxiety, or high blood pressure, etc., and that it was unlikely my problem was cardiac. Wrong: I had AF, not anxiety or high BP). The GP insisted that I lie down in his office and he stayed with me for an hour before he would allow me to go home (5min away). Very kind, but unnecessary; it was a minor episode. But this is the sort of reaction you will often get from non-cardiac medics. Also, a GP may tell you that you should start taking blood thinners immediately. Don't listen. I still don't take them after 10+ years because my cardiologist agreed with me that they are extremely nasty and should not be taken until they are essential. Your cardiologist, when you get to see one, will tell you whether they are essential.

I don't take beta blockers either. Like you, I have a low resting heart rate when I'm not in fib, and taking BBs as prevention causes me to have such a slow pulse and low BP that I can't get out of bed. I try to avoid BBs (I do keep a supply just in case). Also, BBs don't resolve arrhythmia (AF), and they often don't fix tachycardia either (rapid heartbeat) when I have it. If I have a bad episode (tachycardia, dizziness, etc.), it can take 6--12 hours to resolve. Fortunately, it is typically as much as 2 years between bad episodes. I discussed this with my favourite cardiologist: what frequency of AF would indicate that I need to start taking daily medication? We agreed that more than once a month means medication. So far I have avoided this.

I have a prescription for flecainide (a commonly prescribed anti-arrhythmic, which can be taken either daily, as a preventive measure, or as a 'pill in the pocket' to stop an AF episode), but I have not had a bad-enough episode to use it yet. I don't take anything as a daily med except CBD oil (oral), which seems to have kept me from having a bad episode for more than two years. I won't get into an argument about panaceas. It seems to work. If it stops working, I'll stop taking it.

My first cardiologist gave me a hard sell for a catheter ablation, which a lot of people on this forum have had. At the time I was not yet 50 and in excellent health. He said I was 'the perfect candidate'. I was very reluctant because this procedure cauterizes part of the heart. That flesh will never regenerate, and ablation is only approx 60% successful in stopping AF. Furthermore, even when it is successful, it is not a permanent, once-and-done solution. You will find people on this forum who have had multiple ablations, some of them successful for a year or two, some for longer. And some people have had unsuccessful ones.

I happened to know a cardiologist socially -- someone who had AF himself -- and I asked him for an informal second opinion about ablation. He said, 'Just because you are the perfect candidate for the procedure [to make their statistics look good] doesn't mean the procedure is right for you. You have a very intermittent problem and you are low risk. You don't have to decide right now.' I hope that by the time I do need to decide, ablation will be more than 60% effective. He thought that was perfectly sensible.

Because of the pandemic, it has been three years since my last cardiology check-up, and I am starting to get nervous. I would like to be sure that nothing has changed and I can continue with my low-intervention approach.

If possible, see an electrophysiologist, who is a cardiologist with extra training. I haven't seen one yet but will try to do so.

Straight from the mouth of the last cardiologist I saw before the pandemic: losing weight will not make AF disappear, although obviously it doesn't help to be overweight. I was not overweight when I developed AF.

Being female is a risk factor all by itself.

Good luck. Do your own research. Ask for a second opinion, especially if you are referred to a cardiologist you don't find easy to talk to. My first one was arrogant and did not listen.

[Harbourview in reply to Redactrice]

I found your post extremely helpful and reassuring. I’m recently diagnosed with PAFib and only have an episode once every 6-8 weeks.

I’ve cut out alcohol and embraced healthy eating however had an alert on my phone when I was asleep that my hr dropped to 37 then up to 136 for 10 mins then back to normal.

It does worry me at times and hopefully when I see the cardiologist mid April it will reassure me further. I’ve been given Adizam 2 x 90 mg to take daily which apart from making me a little sluggish however if there was a choice I’d rather take no medication.

I hope you’re well and life’s good. 😊