Just diagnosed with AF that is irregularly irregular. Anyone else?

[OBRA]

I’ve just been diagnosed with AF that is irregularly irregular, but my heart doesn’t race. It’s usually in 60s/70s and only goes up into mid 90s or above if I exercise and then comes back down well. I also have high bp- not that high (140s over 80s average) but it spikes dreadfully in medical situations, so I recently couldn’t have a routine check up colonoscopy done. Have had very sketchy appointments with GP so far and an ECG to diagnose and have been put on Apixaban 5mg twice daily and Ramipril 2.5 mg daily. Doc also wants me to take Bisoprolol 2.5mg a day, but I’m loathe to start this as I don’t want my heart rate to be in 50s. Anyone got any experience of similar please?

[BobD Volunteer]

AF is an irregularly irregular heart beat bu definition. The actual rate can vary enormously so you are not alone in having AF with a relatively low rate. In fact you are lucky as it is uncontrolle rate which does the most long lasting damage.

Your GP has limited scope in precribing, for example they can not prescribe anti arrhythmic drugs without instructions from a consultant level doctor so maybe best to ask for a referral to a cardiologist or better still and electrophysiologist (who specialise in arrhythmias).

[Bagrat]

I too have white coat syndrome! When I had my cataracts done my usual 135/80 transmogrified to 200/95 but they were done anyway.If your doc listens perhaps he would let you try 1.25 bisoprolol but not sure why he's keen for you to take it as you don't have a high rate.

If you have BP monitor I would do him a week of BP readings. Always take three readings. Ignore the first and average the second two, after resting and no eating or drinking for 30 mins before.

[OBRA in reply to Bagrat]

Thank you. That’s useful

[Desanthony]

This is pretty much the same as me. Persistent low rate AF from diagnosi. I tried Bisoprolol, verapamil and other Beta blockers,Calcium Channel Blockers and rate control medication but they and a mixture but all took my rate far too low - down to 36 one night and had to call out the paramedicas as I felt so ill and breathless. They kept trying me on others for about a year and 3 weeks before my first successful cardioversion put me on the lowest dose of digoxin which seemed OK but have never been put back on it since my successful cardioversions - I had 3 which kept me in NSR for about 3 out of 4 years then I was about to have an ablation but Covid struck - should have had my ablation the April after the first lock down started ! Then had to cancel one the following September due to the death of my brother-in-law and having to help my sister move and various other things. Was due to have it a month later but the cardio unit had an outbreak of Covid amongst staff and patients so we decided to leave it until the following year when I was due to have all tests and scans again as hadn't had any for 2 years. At the time I was still enjoying NSR from my 3rd cardioversion which lasted 15 months. However, the scans done found that my heart had remodelled itself and therefore any further cardioversions would not likely work. My resting heart rate is in the mid 50's and during exercise peaks at 130 now and again for a very short time. I did the phase III BHF rehab course at our local gym which was brilliant and now go to the gym 3 to 4 times a week. - Which I had always done before but was loathe to do too much and the phase III course helped me get my confidence back. For a while when I went back to my normal exercise after the course I used a Polar chest strap and wrist worn read out to show my rate whilst exercising and once it got to 130 I slowed down. After a few months I got to know when this point was reached without the Polar and now it stays at home whilst I am at the gym. I also have a Kardia 6 lead device which I use weekly to check on my AF - it is permanent low rate AF now and I am doing just fine - at the moment. I also wear a fit bit which I check daily to get my resting heart rate read out and check the highs and lows. Take BP regularly using an OMRON device which will also show when I am in AF - and actually there are the few odd occasions when I am not in AF surprisingly, and use an oximeter when I feel I need to so that hopefully any changes will show up and if needs be I can get back to the cardio team. I find this works well for me.

All the best.

[OBRA in reply to Desanthony]

Thank you. That’s really helpful. Good luck and hope you stay well.

[Desanthony]

You may find it worth your while to try the Beta blockers, calcium channel blockers and other rate control medication just to be sure. I would find they were fine for about 3 to 4 weeks and then my HR would go too low and make me feel worse than the AF.

[Buzby62]

Early days for you, we’ve all been there, best advice I had was to read up as much as you can to understand the condition and your unique version of it, we’re all different with some similarities. I would try and see an EP as soon as you can.

Here’s a link to all the patient information on the AFA website heartrhythmalliance.org/afa... I would start with the AF Fact File. Come back here and ask anything you’re not sure of.

Once in that site you can also navigate using the menu button.

Best wishes

[OBRA in reply to Buzby62]

Thank you

[wilsond]

My AF was hardly ever at a high rate,thankfully. A Flutter was a bigger problem until resolved with a cti line as part of my ablation for Af.My resting heart rate now is 50 to 60,fine by me.

Why do you fear hR of 50?

[Jetcat in reply to wilsond]

I would prefer my HR to be low when in afib but i get a reading of up to 170s but as low as 40 all mixed in the duration of the episode time.!

[50568789]

On beta blocker etc, my resting heart rate is now usually 50. Felt pretty lethargic in the early days but ok now, body seems to have adapted and we carry on carrying on, as my mum used to say.

[Ppiman]

The relationship between the heart rate and the feelings we have is surely a complex one.

I was told that "bradycardia" is a persistent resting rate below 60bpm, but mine has been well below this, down to 39bpm on occasions. I rarely if ever know this unless I measure it, or check back on my Apple Watch records. I was also told that unless it is symptomatic, it is of no consequence.

When I feel slightly breathless, it does not necessarily correlate with my low heart rate; and when I started to take bisoprolol regularly (1.25mg daily), I noticed very little change at all even though my daily average heart rate fell somewhat.

I think when we feel anything, it is because the brain is demanding more oxygen that the heart is giving it. Normally, this would cause an automatic increase in heart output (i.e. both rate and force); but in people with an arrhythmia (mine are LBBB, AF and ectopic beats), the heart output does not always compensate for the demand the brain places on it. Luckily, mine tends to, but others here suffer different feelings from theirs reporting symptoms such as shortness of breath, "air hunger", "light headedness", dizziness, fainting and so on. Such symptoms cause different reactions, too, as fear can step in and send the heart rate up higher, thus creating a vicious circle that might worsen symptoms and force a 111 or 999 call, even.

It is all so complex and individual that, I feel, what we all truly need is authoritative medical reassurance that we are not going to die or keel over, and that we won't end up with heart failure or worse, and that we can carry on living normal lives, even if taking suitable precautions.

Steve

[DiyChas]

A lot of good replies.Bottom line is referral to cardiologist or EP, as GP isn't the one to decide Bisoprolol.

[WildIris]

You could try half the prescribed dose of bisoprolol. I keep halving my beta blocker dose, and feeling better, currently on just half a pill and having very few AF episodes. If you can feel them (as I can) or have some other way of monitoring them, like an Apple watch, it is easier to monitor and figure out your triggers. My AF episodes are like yours, my pulse doesn't actually go that high and I'm often able to stop them by deep breathing/relaxation, sometimes by exercising for a few minutes. I also did lose a lot of weight a few years ago, which helped a lot.

[secondtry]

I present with similar circumstances. I am currently on Flecainide & and anti coags ie no Bisoprolol.

Depending on what is in the piggy bank, I would make a prompt private appointment with a trusted cardiologist to discuss in particular the many pill options. In the meantime, keep a diary of events and write down a list of Q's to be answered in you consultation...dont leave without writing down the important stuff!!