How To Tell When You're in AFIB

[goldey]

Hi -- can I ask a silly question? I had 4 cardiac arrests in the ER (Canada) in June, and they put in a pacemaker and defibrillator. I was told by everybody that there was no way to tell when we were in AFIB, that we wouldn't be able to feel it. Just how do you guys know when you're in AFIB? I have an oximeter, and my heart rate is always bopping around, never stays steady for more than a few seconds at a time. My last arrhythmia appointment told me that my pacemaker was working 28% of the time, helping my poor little heart keep up with demand. Does that mean I am in AFIB 28% of the time? I feel pretty much the same all the time, never fainty or breathless. thanks.

[BobD Volunteer]

if you feel your pulse it may be regular ONLY because the PM is doing its job. An ECG is the only way you will be sure. It will not stop the AF which will continue regardless although you should not notice it as much. You will not need to be told if the ICD goes off mind you.

[goldey in reply to BobD]

Thanks for this info -- BUT -- If an ECG is the only way to tell when you're in AFIB, how can all these people be telling us here that they are in AFIB for hours at a time, etc. Even you refer to "noticing it". How can people know when it occurs? I'm sure they're not all hooked up to ECGs all the time.

[icklebud99 in reply to goldey]

Some people have no symptoms of Afib and do not know when they are in it which is why it can take a while to diagnose it. Others, me included, have really horrible symptoms like walking through treacle, lethargy, breathlessness, etc. etc. so know immediately when they are in Afib. (I used to think I had flu before it was diagnosed). I know immediately I go into AF as I feel my heart pounding in my chest and cannot walk 4 steps without needing to sit as I feel I am going to collapse. I also back up my symptoms by taking my pulse, which is all over the place when in Afib. Everybody has different symptoms and feelings. Sorry I cant comment on Pacemakers but hope this helps.

[pottypete1 in reply to goldey]

We can tell because we do not have pacemakers.

Pete

[BobD Volunteer in reply to goldey]

I'm not talking about other people. Few have pacemakers. Those with paroxysmal AF are fully aware when they drop into it and when they return to NSR. Since your heart is helped along by the PM you will likely not be so aware. Checking a pulse is an obvious way as anything chaotic is likely AF but again not so easy for you.

[doodle68 in reply to goldey]

Hi Goldey some of us unlucky ones with symptomatic P-AF can tell instantly when we are in AF because the symptoms are severe.

I become breathless and can't speak, my legs turn to jelly, my heart beats fast and chaotically, I have an unpleasant sensation in my throat like a child choking back tears and I have a sense of fear. After a few of these 'funny turns' which I told no one about I realised the events were reflected in my pulse which also became fast and irregular.

Thankfully since I have been on beta blockers and made lifestyle changes the symptoms are not quite so dramatic and I have learnt to cope with them

[Bagrat]

I can tell because my usual pulse is about 60 these days and when having an episode of Paroxysmal AF is 140 to 160 and skitters about all over the place ( no pacemaker or anything) I don't feel ill just very aware of heart rate and a slight chest ache. My first episode the longest 1am till I was cardioverted at 4pm the same afternoon.

[CDreamer]

Before pacemaker I could always tell, I felt and heard my heart jumping around, my pulse would be irregular and very fast.

Since pacemaker 8 weeks ago I have suspected I have been in AF a couple of times simply because I always used to have what I can only call an adrenaline rush. I went into what I thought was AF and I noted the day and time and asked the Physiologist who was checking the PM at the clinic and she confirmed that I had been in AF.

Although now I don’t feel or hear my pulse anymore, which I used to, I do still get some symptoms ie: adrenaline rush feeling; if I lay on my left side I can sometimes feel a few bumps; I pee a lot; I feel more tired and sometimes my stats go down to 90 or less. But I don’t have any of the disabling symptoms I used to and can carry on with my usual routines versus before people PM when I really couldn’t do anything when in AF.

If I take a Kardia my ecg trace looks absolutely perfect, no indication whatsoever of AF so the only way of knowing is to have it confirmed by the PM clinic. A 12 lead ECG may very well pick AF though.

[Hidden in reply to CDreamer]

I had the same question as Happyjo about your need for AV node ablation now. Has the PM allowed the EP to add in a rhythm control medication?

Or do you have 3 wires with right atrial pacing?

Best wishes

[CDreamer in reply to Hidden]

To both Oyster and HappyJo - I had a 3 lead PM fitted but the LV wire gave me constant 'twitches' ie it activated the phrenic nerve which left me very breathless so 2 weeks ago I went in to have it adjusted but they couldn't find a polarity or output which didn't activate parts of me which I didn't want activated! I am going back in today to talk to the EP and Physiologists about next steps. Regardless, although the PM is only set to come in at the moment if HR falls below 60, it was going as low as 45 at times. When in AF - I have a perfectly normal HR and pulse and AF doesn't register on Lead 1 on the Kardia device but it does show me in AF on the PM read out. I have never had such brilliantly perfect rate and rhythm readouts on the Kardia, nothing is out of place or abnormal and I feel great as a consequence. Everyone is telling me how well I look. I do still get tired and need to take care and pace myself but I'm never sure if that is heart or Mg???

I haven't had the AV node ablation yet - not going to until all is working well. At the moment I am very comfortable as I am so until I get to speak to my EP and the PM is working as 3 not 2 lead, I am very reluctant to go ahead with the AV ablation although I am told they will do AV ablation with 2 leads working. It is also winter time and as I am immune suppressed there is no way I want to be in hospital during flu season so it may very well be Spring 19 before I go ahead, not least because there will be a moratorium on all electives by Christmas I am sure. Evidently we live in an area which has THE largest concentration of population who are 65+, not only in the UK or Europe but in the WORLD. That may have it's benefits but also downsides when flu season strikes.

All I can say is that the present settings on the PM are really working for me. This is a very expensive bit of kit with a lot of settings and options and my understanding is that not all PM's are equal and that the technology has advanced in the last 4 years. I spoke to the Kardia guys at the Patient Day and they confirmed that the Kardia would not pick up anything with the PM I have which is a Medtronic Quad CRT_P bi-ventriular re-synchronisation PM.

I am not nor ever will take any rhythm meds as they are contraindicated for Myasthenia - that's why I went down the PM route.

Only saying my experience but hope that makes it clear.

[Hidden in reply to CDreamer]

Another great reply, not that I would expect anything less! Thank you.

Will be following your progress with this, with great interest. I do feel there will be a debate to be had about the pros and cons of 3 lead pacing on the one hand, and pace and AV node ablation on the other, both in pAF and cAF.

[jennydog]

A monitor picked up AF whilst I was asleep so of course I knew nothing about it.

I do not get palpitations. I just feel "off " and start to wee a great deal. Niagara Falls is the best description. I wonder where it's all coming from.

[goldey]

Wow, thanks so much to everybody for all this great information. I did not realize that the reason the Cardiologists told me I wouldn't feel my AFIB is because I have a pacemaker. So your info really helped me learn a lot more about what is going on. I love my pacemaker and feel very comforted knowing that it is there -- hopefully it will prevent me from going into cardiac arrest again. Since some of you seem to have horrible scary symptoms when in AFIB, have you considered getting a pacemaker to help with that? I was surprised to learn that so few of you have one --- I'm in Toronto Canada, they gave me one right away after I had my 4th cardiac arrest in the ER shortly after I got there. (It was all free too, thank goodness for the wonderful Canadian medical system!)

[jedimasterlincoln]

They're talking rubbish! I know when I'm in AF, though admittedly as my number of ablations increases the point at which I notice the signs and symptoms is getting harder to detect.

When this all first kicked off I could tell immediately something was wrong and it was fast AF, HR would only have to be around 120 for it to hit me like a train.

5 years later there are times I have to pause and think "is my heart skipping or is it AF" for a moment before I know, equally I don't tend to get to the train hitting phase until my HR is 150-160 which is what the ablations were designed to do, make me feel better when it does happen.

On the other side of the coin, my dad has had AF for years and years, and never noticed until he had an ECG pre-op for some minor skin surgery. He use to be tired a lot and have cold hands/feet quite often but we never thought anything of it.

As bob says, when you're in PAF (like me) you notice it (albeit not as much as you used to thanks to the ablations) but when you have it all the time (like my dad) it doesn't touch him. I've also had patients at work have dodgy readings when I've done their observations and they "feel fine" only for me to get an ECG done and find its AF. Done that a couple of times thanks to my knowing how our machines behave when someone presents with AF!