Fluttery feeling

Self test

by John_Locke - 2023-08-13 05:34:57

If you're feeling this sensation at the same time every day then this is likely the device doing a self test. Not all devices are the same but mine does this now every 24 hours (changed from every 8 hours), and if I'm sitting still not actively doing anything else then I can feel it happening.
 

I have an intermittent AV block meaning the pacemaker only does anything a few times a day, and only paces the ventricles, and I can feel it happen. This used to freak me out at the start, but now it's almost reassuring. I only notice it if I'm still and not focused on anything in particular, if I'm working or up and about I rarely notice it pay attention to the sensation anymore.

I am curious though, how would you describe this sensation?

I’ve got it too

by Aintgotrhythm - 2023-08-13 10:07:47

I guess it must be normal? 

Like John, I only notice mine when I'm idle such as laying in bed. I have a dual lead PM and according to my EP "I don't really need ventricular pacing" but at my initial check I was being paced in the ventricle. As I've said elsewhere, I expect it's a matter of settings not quite right.

The sensation is rather difficult to describe. Something like "pressure" but not really. Occasionally it's something like "flutter" but not really. Just a funny/different feeling in my chest.

Sensation

by Littlered - 2023-08-13 15:35:23

It feels like a fluttery/pulsating heartbeat like feeling. Twinge.  Last night though it was pounding my heart that is.  So thinking it must be when my pacemaker paces my ventricles which I didn't think it was supposed to do (I have my first device check  coming up)   It could be muscles spasms along with my device settings off.   I have an app on my phone that I have to have open always (running in the background) because it communicates with the clinic. I hope the feeling goes away but wasn't sure if it was normal or not.  

The "twitch"

by John_Locke - 2023-08-13 16:13:35

As mentioned, my pacemaker only kicks in a few times a day and only paces the ventricles. Since day 1 I've been able to feel when this happens (not necessarily every time it happens, but multiple times a day when it does).

I would describe this as a twitching sensation inside my chest. It's not painful, but it is distinct. I've had very mixed receptions from healthcare professionals when I've raised this, some have said that it's not the first time they've heard someone report it, others dismiss it as probably unrelated to the pacemaker.

I've been able to confirm that these sensations to in fact coincide with the PM kicking in (see https://www.pacemakerclub.com/message/43507), and will meet with my EP again in a couple of weeks. He ensures me that this isn't dangerous and thinks it can be addressed with settings, but has also not been able to explain exactly what's causing this sensation.

I also feel it when the device paces the atria during the daily self test (for me it should never do it otherwise), though this is more like "normal" palpitations whereas the ventricle pacing has a distinct feel to it that is different.

That old fluttering feeling

by AgentX86 - 2023-08-13 16:51:00

Hi Red, welcome to the club.  I hope you like hanging around a club that no one want's to be.

That fluttering could be PVC, or other arrhythmias, stirred up when they screwed around with your heart.  I's not uncommon for the heart to get pi$$ed off this way. If so, the odds are high that it'll go away soon.

If it is pacing the diaphragm, it can usually be fixed by selecting different lead polarities or scaling back on the voltage.  Since yours is new, they probably have it set high enough to light your eyeballs.  At the first interrogation they should dial this back to where it's needed.

BTW, the second lead goes to the RV, not LV.  If there is a third lead, it would go to (behind, actually) the LV.  This third lead would make it a CRT (Cardiac Rehabilitation Therapy) pacemaker.

Fluttering

by Littlered - 2023-08-13 21:13:58

Hey Agent, 

Thank you for the welcome,  it could be a setting issue. It feels like a little bubble popping at times. But when if continues if feels like a multiple popping, twinge. It's all new.  Today it did it again at the same time so could be a self test. 
 

I was told I have a dual pacemaker and my leads are in the Right Atrium then second one went through the cornary sinus to the back side of the left ventricle.  My right Ventricle is enlarged so not good to pace and I had a valve replacement in my tricuspid which they can't cross or I should say they don't want to with pacing wires. That is what I was told.  I will definitely double check. Does it say on our paperwork anywhere? 

Fluttering

by AgentX86 - 2023-08-13 23:09:57

If it's at the same time every day, it probably is the self test. It should be set for sometime during sleep, so you won't notice it.  At least that's the theory.  It wakes some up.

I learned something today (maybe two).  Normally the leads go the RA, then the RV, and the third through the coronary sinus.  In your case, it makes sense to drop the RV lead and replace it with the LV. That's the first time I've heard of that setup. 

Fluttering

by Littlered - 2023-08-14 01:17:21

Yeah that would be nice. Does the self test happen every 12 hours? 
 

It was new to me also. I always thought it had to go to the RA then RV.  Sure is nerve racking.  I hope I don't need it. I am only suppose to be pacing my atrium. Guess I will find out more about it at my device check.  Appreciate the insight. 

V.Pacing

by Penguin - 2023-08-14 16:20:54

Hi LittleRed, 

Ventricular pacing can be felt. All of the words that you and JohnLocke use to describe the sensation are words that others have used to describe it. 

If you have a dual chamber pacemaker, but only need atrial pacing, you will find that occasional v.pacing takes place.  Lots of people with sinus node disease and dual chamber devices receive low amounts of v.pacing. 

I see that you have a Medtronic device. Medtronic have a setting called MVP (Managed Ventricular Pacing).  It's designed to keep pacing for sinus node disease chiefly in the atria and to limit v.pacing. If v.pacing troubles you and it persists past the first three months or so, it would be useful perhaps to discuss the MVP setting with your pacing clinic and to find out whether it can be programmed for you. 

If you already have the MVP setting in place it is quite possible that v.pacing is currently happening as a) part of a self test as described by John above or b) because your operation has temporarily caused new symptoms. Hopefully these will settle down over the next few months. 

Appreciate your replies.

by Littlered - 2023-08-14 17:11:35

Thank you all who have replied, it has really help with my anxiety about it. I called my clinic and sent a transmission. She said it could be a higher energy threshold for my LV lead. Or capture management since it is at the same time each day then just every now and then. Gonna get a chest X-ray make sure the lead didn't move which I don't think so because the sensation has been occurring at the same location at the hospital and since I was discharged.  I don't use it much at all. It's only there for backup.  
Thanks again for your replies and support, taking this day by day both mentally and physically.