Symptomatic while pacing

second opinion

by Tracey_E - 2024-05-09 08:14:08

I see you are in UK so it may be a challenge, but can you get a second opinion? Or get someone higher up to look at your settings? Block is generally straightforward to program. It's unusual for us to need rate response. It can help if our rate isn't always going up adequately, but it can also get in the way. We definitely shouldn't feel the pacing and get lightheaded. 

Something that has been useful in getting my settings fine tuned is getting on a treadmill as if for a stress test. Let them see what is happening real time, adjust, and see immediately if it helps. 

Good luck

Try Talking With Abbott?

by IrishToast - 2024-05-09 10:19:30

I have the same PM as yours, for bradycardia from heart block, surgery in January. I have receive good advice a few times from calling my Abbott rep. Perhaps they could make suggestions for your settings. My situation may be significantly different than yours, but I don't have rate response on, and have been exercising regularly at a fitness center. My heart rate, pulse strength, extra beats, etc. were all over the place at first, very gradually improving. It is only now that I am starting to feel things have settled down. I think my body didn't like it, but has by now adapted to the new equipment. 

Ditto

by piglet22 - 2024-05-09 11:44:30

Hello

You are describing symptoms very similar to mine.

I’ve had a pacemaker for 19 years for CHB and everything was fine for the first 18 years.

Just over a year ago, I started to experience light-headedness and some involuntary falls.

My pulse rate would fall from the base rate of 60-BPM to between 30 and 40-BPM. Blood pressure followed it down.

I had previously cycled and walked a lot and now could not do either. I wasn't getting out of breath but the legs didn't work.

I had some tests plus some tweaks like raising the base rate to 70-BPM. The echocardiogram was fine and my ejection rate was 69%.

I was diagnosed as having Ventricular Ectopy (VE), similar to PVCs.

The PM checks were fine, but I wasn't.

The pacing specialist prescribed a high dose of beta-blockers (10-mg Bisoprolol) to subdue the ectopics. It subdued me as well.

Before, the PM was slowing me down now the Bisoprolol was. The choice was fall over or be zonked.

There's currently no software fix for ectopics, they come and go, and generally these rhythm problems do get worse over time.

Pacemakers do a decent job, but aren’t perfect. The ectopics upset the timing.

You are UK like me and similar age group.

You will know that the NHS is struggling too, but in my experience, the cardiac aftercare has gone downhill somewhat and the regular clinics of 19 years ago are a distant dream. It came to a head when they substituted a bedside monitor then announced that they were stopping the return phone calls as well.

Not good when the battery of the device is heading towards the reserve tank.

I have never seen a device representative nor has one ever been offered. I never saw a pacing consultant until late last year, so about 18 years without. The UK experience is different to the USA one and UK is regionally different within the NHS.

As I said before, this is just my experience and yours might well be different.

Good luck

Symptoms

by AgentX86 - 2024-05-09 19:27:03

I have a Medtronic, Percepta Quad, but am also having some real settings problems.

I walk a lot, but don't do any other exercises so didn't expect problems.  Stairs have always been a problem for me, as is anything I have to do standing still or at a walking rate with more exertion is needed than normal walk. Pushing a wheelbarrow up a hill is dreadful.

I also had one part of my normal walk that was really hard.  I'd get chest pains, walking up this fairly mild, and not all that long, hill.  I tried to get my PM tweaked to help this, and ended up making a mess of the settings. When I started out at the bottom, I'd have one walking tempo.  As I walked up the hill, I'd run out of air, so walk a little slower, which my PM interpreted as not needing enough air, so down goes the spiral. My HR wasn't stable, either.  Some laps, my HR would be in the high 120s, and sometimes below 110, in the same location. She lowered my tracking limit to 115 (from 140), to try to equalize this.  It did.  All bad.

I had my PM tech speed up the response time, which drove me nuts at home.  Having too much oxygen is as bad as not enough.  By the time I got to other end of the house, I'd be feeling it.

We're still working to try to get things right but my EP wanted my resting rate dropped from 80 to 70, which hasn't helped, I don't think.  I'll probably get over that but not yet. My cardiologist isn't worried and tells me to "just push through it".  It's uncomfortable as all he||.

I've always been paced VVIR, with no atrial function.  They said that it is really tricky to get the pacemaker right.

A bit more info

by Xtrabeat - 2024-05-10 06:23:17

Thank you everyone for your helpful replies. Piglet22 I am sorry you are having such a hard time. I will follow up on some of the other suggestions including talking to Abbot.

My original diagnosis was of intermittant episodes of CHB - always occuring at rest and leading to near syncope. These happened infrequently. I had tess some tests done a few years ago and nothing was found and then I captured an episode on an Apple Watch. In between I was perfectly OK and able to exercise normally. The PM was inserted as a "safety net" but I was advised things were likely to progress - time frame unknown. It seems that this time frame is much shorter than I had hoped but I had problems witht the pacemaker from the beginning with abherrent conduction and weird rythms attributed to my having a lot of atrial ectopics. After a couple of resets my pacemaker was switched to VVI only to operate if I went back into CHB.  Most of the time I was in my normal native (sinus) rythm and allwas well until I started getting episodes when I couldn't walk up hill and became faint and breathless. This only occured after walking several hours. Again I recorded these episodes on the watch which showed that my rythmn was not accelerating and that there were long gaps where there was no ventricular response - so presumably some degree of AV block With rest, my rate slowed back into sinus rythmn and I was ablle to continue (slowly). This became a consistant feature. 

I therefore had a prolonged ECG tape which did not show anything apart from occasional runs of supra-ventricular ectopics but (inevitably) I was completely symptom free during the testing period despite challenging myself on a few hills. I went on to have a treadmill test but all this showed was that my HR did not go above about 100 ( after 10 min on Bruce protocol) but the only symptom was tiredness in the arms from hanging onto the bar as the gradient got steeper. The PM was reset to DDR and rate response added to accelerate the pulse. What I did not understand was that RR folowed some pre-defined algorithm so not truly a physiological response - and with it I had a severe episode of PMT which stopped me in my tracks with chest pain. Further resets of the pacemaker added some atrial blanking and because mostly I remain in SR the P-R interval was increased slightly to capture those times I developed block at the higher heart rates - but not at others. This was done because it was fellt the pacemaker wasn't recognising the atrial ectopics and causing it to fire. 

The issue now is that it seems the PM is working properly. It undoubtedly kicks in at the higher rates so walking up hill would trigger it but when it does so I feel like all the energy has gone, I become a bit light headed  and then have to stop. I am generally very aware when the pacemaker is working - I am told that I don't tolerate being paced - but I had hoped that tracking my rate up would allow me to continue a hike without problem. I have all this recorded - I bought a Frontier4 ECG monitor which I wear all the time when exercising and this clearly shows when the pacemker works and the slight interval change wihch precedes it. 

I am puzzled as to why the pacing should be associated with such a poor cardiac output. I am not sure what role the ectopics might have - but I don't 'get very many now having stopped all caffeine. I had never knowingly had these before so I did wonder whether the PM was causing them - after all something screwed into the atrium could surely be a source of irritation?  Anyway my suggestion was dismissed by the cardiologists. I am wandering whether there are any further adjustments that can be made. I will certainly follow up with the manufaturer. With thanks to all fro reading - I will value any further comment.