Recent ICD/Pacemaker implant and apple watch said AFib today

Hello!

I'm 34 and recently recieved the diagnosis of left ventricular non compaction, after having syncope for years, and recent tilt test that found I went into asystole for 18 seconds. Long story short I just recieved and ICD implant last week and am very new to this community! I just bought an apple watch to track my HR and my heart was feeling uncomfortable this evening and my watch said I was experiencing afib, which is a first that I've had any documentation (if apple watch counts!). From what I've read afib has a low false positive rate with the watch, I'm also experiencing uncomfortable electrical pulses and a little bit of chest pain, which I've had intermittently throughout my life and thought was normal or just anxiety. I suppose I don't have a clear question but if anyone can share any similar experiences with their pacemake and feeling pulses, or if their apple watches are accurate. It's been a whirl wind of a few months and any advice I'd much appreciate!


2 Comments

Atrial Fibrillation (AF)

by Gemita - 2023-07-21 05:55:53

MKatz, firstly I am so sorry to hear about your recent diagnosis.  I see that left ventricular non-compaction is a rare congenital cardiomyopathy which carries a risk of serious arrhythmias, as well as left ventricular dysfunction and thromboembolic events.  You now thankfully have an ICD to protect you.

My first impression is that you certainly “feel” your rhythm disturbances from your description of “uncomfortable electrical pulses and a bit of chest pain”.  I always know when I am in an arrhythmia like AF too.  AF is known to be an “irregularly” irregular rhythm disturbance, which can occur at a slow, normal or fast speed.  It can also start or stop at any time for no apparent reason.  During AF I feel my chest quivering/fibrillating.   Take a look at this definition for “fibrillation”

a) muscular twitching involving individual muscle fibers acting without co-ordination. 

b) very rapid irregular contractions of the muscle fibers of the heart resulting in a lack of synchronism between heartbeat and pulse

With such symptoms, is it any wonder we can feel a bit breathless with  chest discomfort, especially with high heart rates and if the arrhythmia continues for lengthy periods?  I can also experience dizzy spells or near syncope.  Some of us are extremely symptomatic with an irregular pulse.  This is because blood flow throughout our body is often sub optimal during an irregular rhythm disturbance like AF.

Home monitors, like Apple Watch or Blood Pressure monitors may not always cope well reading our pulses when they are so irregular or slow/rapid in speed.  Although your ICD will be primarily watching for serious ventricular arrhythmias and give therapy for these, your doctors will no doubt also want to watch for AF with a rapid ventricular response rate and treat this, to prevent a fast atrial arrhythmia triggering unnecessary ICD shocks.  

I would go by how you feel rather than by what your Apple Watch is telling you and report your symptoms to your doctors promptly.  If AF with a rapid ventricular response rate is confirmed they may recommend treatment with a rate control medication (like a beta blocker).  I do not know whether you need to take anticoagulants for your congenital condition, but if AF is confirmed, they may need to look at your medication generally.

I have no trouble believing that the Apple Watch is capable of picking up an irregular heart rhythm like AF “if you are feeling symptoms at the same time”, but you need confirmation from your doctors of the actual arrhythmia present before AF can be confirmed.  They will be able to confirm the presence of an irregular arrhythmia like AF from your ICD downloads, from additional external holter monitoring or from an external ECG, so please consult them and do send them a copy of your Apple Watch data if you are able?

Above all, please try to stay calm since fear and worry will not help to calm any arrhythmia.  You have an ICD now to protect you from a dangerous ventricular arrhythmia and this should give peace of mind.   AF, although unpleasant is not immediately life threatening like say Ventricular Fibrillation or sustained Ventricular Tachycardia.  Providing our heart rate is well controlled during AF episodes and we are anti coagulated if required, AF can be safely managed.  I have had intermittent AF for many years (well before 2016).

I wish you well MKatz and please keep in touch.

Thank you!

by mkatz - 2023-07-24 14:57:48

I appreciate your response and sharing so much information, it's really helped alleviate some anxiety while I'm adjusting. It's interesting I spoke with a clinic nurse after that night and she said my ICD also registered a couple episodes of Afib at the same time as my applewatch, although she said she thinks it isn't actually Afib and instead tachycardia--I'm a little confused but have an appt with my EP this week and hopefully will get more answers. She also said that I won't actually feel pulses or changes with my Pacemaker, although so far both my own and other's experiences seem to indicate that you can infact feel changes. Hopefully I'll get more information this week. I'm a medical provider and am aware that sometimes the counseling we give and what the actual patient experience is can be two separate things! Everything you mentioned regarding Afib parallels my own experience and does help to give me some peace of mind! Thanks so much.

Madeleine

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