Sinus Node Pauses

How you describe it doesn't really make sense

by crustyg - 2023-08-28 18:49:46

Sinus node pauses - for someone with a functioning PM - can't happen.  Your PM doesn't count up the beats every minute and if you have only had 41 beats in the last 50 seconds suddenly add some extra beats!  What your PM *does* do is measure the milliseconds since the last detected heart activation and when that period has elapsed with no intrinsic activation detected, it generates a pacing pulse.  For me, that's every 1200ms.  No pauses, ever.  My basal rate might *say* it's set to 50BPM, but really it's set to a pulse every 1.2s, unless I can generate my own (and I can, up to a modest rate but it's junctional so no A=>V synchrony).

What I *do* get, is a sense of air-hunger if I start to exercise large muscles before my PM has caught up - and when my PM does catch up the sensation is actually quite uncomfortable for a couple of seconds (I suspect it's a wave of lactate and other products of anaerobic activity) but it passes quite quickly.  I've had my device adjusted to minimise these and it's worked pretty well.

Dehydration *is* a real problem for me - if I am cycling up a mountain and I let myself get too dry it brings on an episode of some sort of tachyarrhythmia and that's not good.

Hope that helps.

Response

by Hyperfocussed - 2023-08-28 18:59:22

Post is very clear. Answer doesn't help, actually considering. You still get pauses, your device paces before you get dizzy. You're a lucky one, apparently that doesn't "feel" anything. How fortunate. 

PVCs

by AgentX86 - 2023-08-28 23:23:57

I have to second both crustyg and Marybird.  When I get PVCs it feels like someone just stole a breath.  It's like I didn't inhale and tried to exhale twice.  It's an annoying feeling unless there are a lot of them, when it becomes SOB.

It could also be another atrial arrhythmia, like AF or AFL.  Since you're symptomatic, see your cardiologist and get it fixed.

I do NOT have Sinus pauses

by crustyg - 2023-08-29 03:37:53

My SA-node is dead - all turned to fibrous tissue.  At implantation my resting HR was 42BPM, less than a year later it was 28BPM - but happily I could still stand up and walk into the MRI suite, lay down for 30min and then slowly sit up and walk out again.  Athletic heart, clearly enlarged on CXR.  AV-node - junctional - pacing.  Not something to bet my life on.

I understand and accept that we may feel different things, but for this community to work we have to have some agreement about the words that we use to describe our conditions and using the phrase Sinus Node Pause isn't correct for someone with SSS+ a PM.

Othwerwise we're in Humpty Dumpty land: "When I use a word it means just what I choose it to mean - neither more nor less."

Confusing Terminology

by Penguin - 2023-08-29 05:35:10

"When I use a word it means just what I choose it to mean - neither more nor less."

I'd encourage you to have an open mind as to what may be happening here and to ask for professional advice.  A few suggestions have been made by Marybird and AgentX already, but it's probably best not to second guess this. 

As always the best first step is to ask whether or not the event recorder has picked anything up or to send a home monitoring report to your clinic when you feel symptoms.  Keep a diary of symptoms, times & dates and what you were doing at the time. This will help with any investigation. 

Please don't feel discouraged. You sound like every patient I've ever liaised with who is confused by new sensations and symptoms. I can certainly relate as I've been wrong footed many a time. It sounds uncomfortable and unpleasant and the important thing is to try and get it sorted out. Please ask for some help from your pacing clinic. 

Arrhythmia symptoms

by Gemita - 2023-08-29 05:43:46

Michael, I agree with a lot of what has already been said but I can also completely relate to your post and to how you describe your symptoms/disturbances.  We all have our own unique way of describing what we feel and from where those feelings/symptoms might originate.  There is no doubt in my mind that an irregular arrhythmia can affect the timing of our pacemakers and that settings, medication, lifestyle changes and any ongoing health conditions will all have a part to play too.

Unfortunately a pacemaker is not a cure for an arrhythmia and it sounds very much to me as though you have an arrhythmia.  In the presence of an arrhythmia Michael, it is certainly much more difficult to get our settings adjusted.  Also, Sick Sinus syndrome patients can be difficult to treat because our rhythm disturbances may frequently change.   For example we can be in a blissful normal sinus rhythm one moment, then suddenly experience an irregular heart rhythm “or” we can have a normal heart rate at another time and then suddenly experience a slow, fast or irregular heart rate.  Your statement that you often feel symptomatic, like you did pre-pacemaker implant, sums it up nicely.  

And I agree, before my arrhythmias start, I get a sinking feeling in my stomach and a clear sensation of a long pause, followed by either runs of an irregular tachycardia or the start of prolonged, pausing, slowing beats.   Sometimes this is either fast or slow atrial fibrillation, at other times it is clearly benign ectopic beats.  And I don’t just mean one odd beat in every 10 beats or even one slowing, pausing beat in every 5 beats that might go unnoticed.  I typically experience what feels like beat after beat, for hour upon hour of rhythm disturbances and when these occur, they can certainly cause debilitating symptoms.  Fortunately my disturbances are well controlled now and I am working hard with my clinic to keep them this way.

Without “symptoms” we might safely be able to ignore what is going on, but with symptoms, any rhythm disturbances need to be “diagnosed and controlled”.  So what is the remedy and can all this nonsense be stopped?   

Rather like Marybird who has cleverly found a way to stop her slowing, pausing beats by flapping her arms wildly around to try to raise her heart rate through activating her Rate Response, I have found that by keeping my lower rate limit higher (at 70 bpm) I can also achieve a similar level of success in a more dignified manner!  (Sorry Mary).  Additionally some pacemakers have various features called atrial or ventricular rate stabilisation/regulation (also known as “rate smoothing” algorithms).  In some circumstances, a sudden drop in heart rate might occur, as in paroxysmal AV block, or a pause following atrial tachycardia in bradycardia–tachycardia syndrome (Sick Sinus Syndrome).   Other rhythm disorders such as atrial fibrillation might cause symptoms from the irregularity of heart rhythm.  “Rate smoothing” adapts the pacing rate, softening any abrupt changes in heart rate/irregularity.  You could ask what features your pacemaker has to help with your rhythm disturbances Michael?   A well set pacemaker can make such a difference to help ease your symptoms.  I don't have atrial rate smoothing but I have atrial preference pacing for example which is fairly similar.

Staying hydrated certainly helps as well as getting extra sleep, avoiding stress, alcohol and caffeine (in my case these are all triggers for rhythm disturbances).  I hope you find some relief soon from your symptoms

Vocabulary

by Hyperfocussed - 2023-08-29 10:46:11

All, I appreciate the responses and attempted help in relieving the mind, on what I may be experiencing. 

What I am describing is...as best as I can with the limited vocabulary I have in the subject. I will say, it is 100% possible to feel the symptoms I had prior to a pacemaker install....what those symptoms derive from, I don't know. Howver, I still have them, but I don't pass out anymore, I simply feel my heart flutter (being paced) and moments later, back to normal. 

It is very frustrating to explain this and have people telll me "you're not feeling this, that's impossible". Pretty much what several cardiologists said for 10 plus years until a loop recorder was installed and "pauses" were discovered, then "little ol' Michael was right all this time". Wow, imagine that, I know my body. 

Pauses

by Penguin - 2023-08-29 13:58:20

Hats off to you Michael - you clearly know your body and are prepared to fight to be heard when something doesn't feel right.  I get that you feel 'doubted' and annoyed and why you feel that way. 

For me that 'flutter - being paced' is usually ventricular pacing, although a fluttering feeling can also describe an arrhythmia.  Does a % VP show up on your interrogations?  Sensitivity to v.pacing is more common and an arrhythmia which is not suspected may be subjected to 'tracking' down to the ventricles which causes very uncomfortable feelings indeed.  

The good news is that v.pacing amplitudes / current / sensitivity can be adjusted downwards if this hasn't already happened? 

Also most devices have programmes to limit v.pacing and which do something called 'mode switching' to ensure that the pacemaker doesn't track arrhythmia down to the ventricles. This avoids the uncomfortable sensations. 

It may be time for another loop recorder. 

Whatchamacallit

by Gotrhythm - 2023-08-30 14:28:28

One of the luckiest things that ever happened to me was one day, after about a year living with post-pacemaker symptoms just like you describe, while I was hooked up to the pacemaker testing machine, I had one of those "pauses" like you describe.

It was so strong, I went "oof!" The tech who was not looking at me but at the screen, said, "Yeah, that was a PVC. "

That my friend was the first time I ever knew the medical name for what I had been trying to describe to medical people forever. I kept trying to tell them I had it before the pacemaker and it was getting steadily worse, more frequent since the pacemaker. And yes, it felt like a pause in the normal (not medical) definition of the word,and then the bumpity-bumpity, and the flush of heat in the center of my back. Occasionally there would be a short, sharp pain.

Seriously, I had never been told I was having PVCs and I didn't know to ask.

Now, I'm not about to try to diagnose you long distance. I don't know if you are having PVCs. But, if there's any way, I urge you to see if you can find some knowledgeble person to observe your EKG and tell you what's happening at the moment it happens.

The beginning place of any knowledge is first of all, learning what to call things. This round thing is a cirle. This round thing is an oval.

Of course most people live all their lives without ever need to know the names of various heart arrythmias. But for those of us with pacemakers who need to be able to communicate clearly with our medical people, just knowing the right words to use can ease our way.