Settings - what do I need to ask?

Settings

by piglet22 - 2024-06-04 09:55:32

Others are best placed to answer this, but if you are sweaty and lightheaded you need to talk to your pacing team.

Try and check your heart rate and if you have a home monitor, send off some readings.

Of course mention it at your meeting.

Beware the sometimes stock answer of "PM is working fine"

Often technically it is but you aren't.

It would be interesting to hear how you get on.

settings

by Tracey_E - 2024-06-04 10:48:22

Tell them exactly what you just posted. It's common to take a few tries to get the settings fine tuned. If this is continues after several adjustments, ask to get on a treadmill so they can watch what is happening in real time and adjust accordingly. 

Now that you are paced, it should be seamless when you go into block. As soon as the ventricles start missing beats, the pacer should be stepping in and you shouldn't feel a difference. 

If you are getting lightheaded, that's your body telling you to back off. 

"This limits tracking to around 125"

by USMC-Pacer - 2024-06-04 11:29:12

Your upper tracking rate is insufficient for anyone that is active, like you. Once you hit that 125, your device will put you into wenkebach.. or a 2:1 rhythm block to protect you ... from what? I don't know. I've also battled this until they raised the limit. 

What it means: if your atrium hits the 125 limit, the device will knock you down and only pace your ventricles at 60-80 BPM.. Yeah, it doesn't feel good at all!

Like Tracey said, just tell your EP what you wrote here and I'm sure he will raise it up.

Additional

by Xtrabeat - 2024-06-04 12:50:58

Thank you for the replies

piglet22 I have had several "working fine" comments! I will update - appointment on Thursday

Tracey-E It is quite difficult to get the sort of intensive follow up you mention here in the UK - I have already had several tweaks! I am told that I am very "sensitive" to pacing but the transition from normal rythm to paced beats is very obvious to me. Sometimes it happens when I am not doing much and then it is just an awareness - but with exercise it is very disabling. 

USMC-Pacer it is very variable and sometimes I can manage in my own rythm without the PM kicking in - but not often. The reduced tracking rate is the consequence of the atrial blanking which was put in because of  PM induced arrythmias in turn frelt to be due to ectopics. I monitor my heart rythm when exercising with a continuous ECG and this shows the PM taking over once my own conduction drops out above 100 and the PM is firing up to 120 or so - however, I am not sure what drives it after the initial stimulus (i.e. the initial dropped beat)

What do I need to ask them about my currrent settings? Any suggestions as to what might be wrong apart from the tracking rate?

question

by Tracey_E - 2024-06-04 12:58:10

Ask if you are hitting your upper limit. That may be what is happening when you get dizzy. Also ask if it's dropping your rate when you hit the upper limit. 

A-V block on exercise

by Selwyn - 2024-06-04 14:23:32

Personally, I would want to know why this is happening. From what I have gleaned from your Bio this was your original presentation. I just wonder whether on high cardiac demand you are having some ischaemia.  May be an exercise test would help? My pacemaker clinic had be run up three flights of stairs from the hospital corridor until I was happy with the settings. I am always concerned when symptoms come on exercise. I think some more investigations may be needed.

Personally, I have found the NHS very accommodating. I phoned the pacemaker clinic yesterday and left a message on their voice mail, to be phoned back later in the day for a chat and then they requested I do a data transfer. Last time I phoned them I was seen with a few days . Thank you Liverpool Heart and Chest Hospital. Superb service.  They really do have an interest in getting you as good as you can be for exercise. I am still working on the problem! I just wonder whether I have a controlled flutter with heavy exercise - bit difficult to see as I swim!  I was grateful to have coronary artery anterior descending stent put in for a 90% narrowing, though I was happily swimming a mile at reasonable pace a few days before that ( stenting was done as this was an incidental finding as part of cardiomyopathy investigations).

Answer

by AgentX86 - 2024-06-04 14:28:28

I'd try to record your normal exercise heart rate.  Then I'd try to measure it just before and just after the symptoms occur.  Watches, and the like, often don't work very well, but this is a case where a monitor should show the gear shift. Take this information with you. If you can lay your hands on a Kardia Mobile, it would help immensely.

Further investigation?

by Xtrabeat - 2024-06-04 15:55:47

Again thank you everyone for commenting

Selwyn before this my exercise tolerance was not limited  even on quite stiff climbs. I did have a treadmill test which was done when I was in VVI mode and when these exercise related symptoms first occured. The treadmill showed AV dissociation occunring at above 100 but none the less I was able to complete more than 10 mins Bruce protocol before I pulled up because of pain in my arms from gripping onto the bar. I had normal coronary angios in 2017 but a recent CT coronary angio has shown some narrowing in the distal circumflex with a dominant right artery and normal left. I am now taking a statin. I don't think any further action about this is proposed.

AgentX86 I have a FrontierX4 ECG monitor which I wear when I exercise which clearly shows the transitions from normal rythm to paced. From my interpretation the p-r interval prolongs and once it exceeds the 225msec threshold the pacemaker operates and then continues to pace for a minute or two before normal rythm is restored. During this time I am symptomatic but after a brief pause can resume walking but at half speed.  I have shown this to the EP but have had no helpful suggestions and I am getting the impression that this is felt to be as good as it gets or I revert to VVI. Not sure which is best.

Pacemaker Clinic

by Selwyn - 2024-06-06 08:17:24

The pacemaker clinic phoned me today after I finally managed to get some transmission from my bedside box. It seems that for the last two months there has been fairly continuous atrial flutter. They have offered to have a go at further tweaking my  Boston Scientific PM Settings.

I did send an e-mail which may have had some effect:
'I hear what you have said about the  minute ventilation function knocking off the accelerometer function. I quote, “ The pulse generators allow programming of a slope above the Ventilatory Threshold that is less steep and thus designed to mimic the physiological relationship between respiration rate and heart rate - in effect a less aggressive response to MV at higher rates.” And then, the dual-sensor blending: “ whenever the Accelerometer response is greater than the MV response the blending will be approx. 80% Accelerometer (A) and 20% MV when the Accelerometer rate is at the LRL to approx. 40% A and 60% MV when the Accelerometer is at MSR.” '   etc. 

You certainly can't be too fussy about your settings.

Anyway, they kindly are going to see me before I see my cardiologist next Wednesday.  I am just wondering whether the advice will be to have a 5th catheter  ablation ! 

Thank you Xtrabeat for reassurance that you are not having ischaemic episodes.