What Can It Be?

Had a dual pacemaker fitted to atria in 2014 due to persistent AFib, followed by an AV node ablation, and have enjoyed up until late last year without a trace of trouble.  Now starting to get periods of what feels just like AFib again, pulse feels irregular, and it leaves me exhausted, but the pacemaker tracing shows nothing at the times I noted the disturbances.  I got so concerned over a prolonged episode of about 6.5 hours, I contacted an an NHS advice line, who unexpectedly sent an ambulance and medics and I spent the day in hospital where I was diagnosed with early heart failure and am now undergoing monitoring and treatment for this condition.    However, the pacemaker tracings continue to show nothing amiss during episodes where I (and my husband) can feel a pulse irregularity.  Heart failure and arrythmia are treated in different clinics.  I am so puzzled as to why the pacer tracings are showing these non-event readings and wonder if anyone has any explanation to offer, even if a theory.  


6 Comments

PVCs? Premature Ventricular Contractions

by Gemita - 2021-09-25 11:09:17

Jomarie,

We can all get ectopic beats at stressful times.  I am wondering whether you are experiencing benign ectopic beats in your ventricles called PVCs.  Because they are benign they may not be picked up or recorded by our pacemakers since doctors are generally only concerned about significant arrhythmias and a benign ectopic wouldn't be regarded as significant.  However from experience, PVCs can cause a great deal of distress and awful symptoms when they are prolonged and PVCs most definitely cause an irregular pulse which is what you and your husband can feel.

I note you are having tests for heart failure.  It is possible that whatever has caused your heart failure has triggered these PVCs, but hopefully your tests will confirm what has happened and what treatment is likely to be offered.  There is a lot that can be done to help you.

Another thought.  AV node ablation can "rarely" fail.  You might want to ask whether your AFib (which continues in your atria even after the AV node ablation) is getting through your AV Node once again to affect your ventricles?  A long shot, I know, but worth asking about, since the symptoms you are feeling are so similar 

You need better monitoring

by crustyg - 2021-09-25 12:18:13

I'll start by assuming that you have no other known heart muscle disease process that you know of.

I'd say that you have tachycardia-induced cardiomyopathy (TIC) (==heart failure) until proved otherwise.  This is serious and it's not always reversible.  You did the right thing calling the helpline, but it sounds to me (and this is only my *opinion*) that things haven't been well handled since - on the basis of what you've posted.  PM's are really poor at recording unexpected arrhythmias - unexpected is the key thing here.  They ONLY record rates/rhythms that they've been programmed for and ignore everything else.

In your shoes I would push for an implanted reveal device - these record *everything* - and should show what's going on.  Don't waste time on an external Holter recorder - my experience of four of those is that they are a waste of time, and you don't have time to waste.

I struggle to see the wisdom of having HF and arrhythmias followed in separate clinics (by different docs???).  You only have one heart, and if they can't see that then I would find another doc who can.  Even in your part of the world - which I know well - there are other choices.

What Can It Be?

by JoMarie - 2021-09-25 13:25:44

Thank you so much for the advice.  It is now a couple of months since the last episode and I am feeling considerably better because I build up again inbetween.  I had one last year but this year have had three and closer together.  An episode of some hours leaves me so tired I usually sleep through the next day and these almost all occur at night and wake me up - then I gradually improve, although the heart failure which is now treated with diuretics tends to take my energy anyway.  

In the light of your posts, then I shall await the next time, making sure it is a real arrhythmia which is clearly felt, ie my husband will also monitor the pulse, and then, if another tracing shows nothing, will suggest TIC.   I did have very comprehensive tests all that day in the hospital, ie X-ray, pacemaker tracing, bloods, oxygen and because my treated blood pressure was so high (210/110), had an intravenous diuretic and have been on these pills since (I got ankles again!) and lost quite a bit of weight.  That is when the diagnosis of heart failure was put before me (at the conclusion of my hospital day).    I do have Flecainide which I used to take prior to the AV node ablation and I have been taking one of these when I know another episode is occurring.  I will take this whole dilemma further next time though and I do agree that two clinics don't make sense....

Flecainide

by Gemita - 2021-09-25 13:53:41

Jomarie,

I believe Flecainide may not be a safe antiarrhythmic med for heart failure patients.  Do your doctors know that you are still taking it?  Until you know more about your diagnosis, I would speak to your doctors and ask whether they could recommend a safe, rate control medication, like a beta blocker which you could take as a Pill in the Pocket medication when you need it to calm your arrhythmia. 

High blood pressure needs to be firmly controlled since this will make an arrhythmia more likely too.  I am also in the UK and yes we have two clinics, one for arrhythmias and one for general cardiology patients although my doctor can manage both specialities.  Stay safe

The pacemaker

by PacedNRunning - 2021-09-26 01:43:25

It's because you had an AV node ablation and therefore the pacemaker regulates your heart rate. The Afib doesn't reach the ventricles because they ablated your AV node. So it will look like normal rhythm on ecg. 

Normal rhythm

by AgentX86 - 2021-09-26 13:10:21

No, it won't look like a normal rhythm on an EKG.  The electrical activity of the atria will show on an EKG and, of course, any atrial arrhythmia will be shown just as before.   The A/V dyssynchrony caused by the destruction of the A/V node (and Bundle of His) will also be obvious because of the difference in atrial and ventricular heart rate. The atrial arrhythmias won't show up in the ventricles either, which is the whole point of the A/V ablation. The arrhythmias will clearly show up in an EKG though.

As noted above, the atrial arrhythmias can't be communicated to the ventricles and the A/V node has been destroyed, the only source of any arrhythmia must be from the ventricles themselves. Since the errant  pulse happens before the pacemaker times out for the next normal pulse, the ectopic beat is, by definition, a "premature" ventricular contraction (PVC).

I can attest to the fact that, given enough of these, they can be extremely uncomfortable. One or two will feel more like a burp and  perhaps we might not even notice them but strings or every other beat can ruin your day. For short episodes they're not harmful but should be reported to your EP for followup.

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