EP appointment tomorrow - advice please

After some pestering I have amnaged to get an earlier check up with an EP tomorrow (NHS). I have two on-going issues.

1. Intermittent episodes of PMT giving palpitations occuring at the max tracking rate of 120 and which I can usually aboloish by valsalva maoevres or vigourous bending and stretching. Sometimes they self terminate after 8 or 9 beats (as they are supposed to)

2. The more significant problem for me is not being able to exercise because the PM cuts in when my heart rate gets above about 100 and then I feel as if I do not have enough output and become faint and sweat. Sometimes I get a fairly localised left sided chest pain. All this stops me in my tracks. it usually occurs when I am under load walking uphill. I test myself almost daily on the hill up from the village to our house - about a 90m steepish climb - and sometimes I can manage it without the PM cutting in. .

My question is what specifically should I be asking them to look at and do?  I have already had several tweaks made with a prolongation of AV delay (225ms with sensed delay set the same) and something called post ventricular atrial blanking (which is different from PVARP)  - PVARP is set at 250ms and PostVentricaular Atrial blanking is 225ms. PMT detection rate is set at 90bpm and PMT response set to Atrial Pace which from my reading means that if PMT is sensed the PM interrupts after 8 beats - which sometimes it does but not always. Other settings - Rate response AV delaly is off, Negative Hysteresis (not sure what that does) is Off and Max Track rate is 120bpm. 

My worry is that someone is going to say this is the best that can be done and the only real alternative is to go back to VVI which worked OK for a while until I found  that I could not achieve max expected heart rate with exercise which again stopped me. Previously, introducing rate response  preciptiated a very unpleasant PMT. Help and advice really appreciated. Thank you. 

7 Comments

That is good news

by Gemita - 2024-09-25 07:50:42

I am so glad you have got another opportunity to discuss this with your team.  I think the most important advice I can give is to say I would go in with an open mind and get your EP/technicians firmly on your side.  Then we have to beat the British system since time constraints are not helping us here in the UK to get our settings optimised to suit us.  

Explain that you would really appreciate working with them for as long as it might take, to try to get your pacemaker settings more suited to your needs.  Explain you appreciate with ongoing rhythm disturbances this might take longer but that you want to remain active and to make the best use of your pacemaker.

Perhaps ask if you could work with a manufacturer rep or one of the technicians with a special interest in Rate Response settings, to try to understand what changes are needed.  (Perhaps ask for a follow up appointment to discuss any changes they may make tomorrow)?

I know our American friends have had immense success working with a technician over a long long period with their Rate Response settings, so why shouldn’t we ask for the same treatment here in the UK.  I know some members have already succeeded in doing this and I salute them for their efforts.  I have tried working with my Rate Response settings and also took the easy solution of having it turned off because of RR triggering unwelcome tachycardia and other rhythm disturbances, but I know this is not the answer either.  My hospital team were perfectly happy to spend time working with me, but I am clearly less active these days and do pretty well without RR turned on.

Looking at your PMT detection rate, you could ask whether this could be safely lifted, since 90 bpm, while picking up increased slower episodes, might be causing more in the way of symptoms from frequency of detection interventions.  Your MTR seems rather low at 120 bpm also. Maybe this could be increased to something like 130-150 bpm, so your PM will not hold you back when you get closer to this max rate?  Mine is set to 130 bpm which is still low.  Because of atrial tachyarrhythmias, they have told me they won't go any higher, but I may still try to negotiate a higher rate.

Good luck and I hope you will return with some better news and a few more return appointments?  As one UK member keeps advising, maximum charm is what is needed to keep the technicians on our side 

Stress test

by Lavender - 2024-09-25 08:47:59

Other members had good results with having a stress test done to check the pacemaker activity that way. 

PMTs and MTR

by Rch - 2024-09-25 17:00:53

Hi

I have a BSC Accolade implanted in 2022 for exercise induced high grade AV block ( HR over 120), but as of late I have noticed that the AV block has progressed to the point that I am V pacing even at my basal rate of 55!!. I am 79. I use Kardia to check my Vp. I am in DDD mode. 

In your Bio, I note that you have Abbott PM implanted for intermittent CHB and it is in DDR mode with rate response turned off. I am not much familar with Abbott terminology, but reading your text, it seems your rate response is curently off on account of too many PMTs.  I also used to get  PMTs soon after my implant in DDDR mode, and my Device tech switched to DDD and prolonged my dynamic PVARP to 380ms max, longer than the retrograde conduction time,and I have not had the PMTs since. Please note that your fixed AV delay of 225 ms + PVARP of 250 ms gives you an MTR of about 125.Since you did not mention MSR, I presume your rate adaptive feature is turned off. What is your basal heart rate set at?

 As to your frequent PMTs, do you have documented retrograde conduction? In any case, you can ask if prolonging the PVARP to 300ms + would help. But then you would have to also lower the AV delay by the same duration to keep the MTR at the same rate. But be aware that  prolonging PVARP too long, will run you into another arrthythmia!

My other question is when you exercise to a HR of 100-110, you said you were fine. Does that mean you are in AsVs? If your rate response is off and you see narrow complex on your app, then it would be AsVs ( that is my understanding. I may stand corrected). And you begin to pace after that to AsVp?. How reliable is your HR count while exercising or walking? Is it possible that the HR actually hit the MTR and then sliding down via Wenckebach? If that is the case, you can ask your EP to raise the MTR and shorten the AV delay or use dynamic AV delay to reach the higher MTR numbers.

There are others in the forum who are more knowledgable and experienced than me on this topic and hope they would pitch in to give their opinion.

In one of your previous posts, you mentioned about Frontier 4 ECG monitor. Is that what you use for HRs and waveforms during exercise? Does it give a steady baseline during exercise?

Hope your EP will be able tweek a few settings to get you back into your usual activities soon.

A few more challenges

by Gemita - 2024-09-26 04:04:25

Xtrabeat, I see your pacemaker has three settings responses for dealing with Pacemaker Mediated Tachycardia (PMT):  

OFF, no PMTs are detected

Passive, PMTs are detected and counted in the diagnostics but the device does not interrupt the tachycardia

Atrial pace, PMTs are detected and the Atrial Pace response is started to interrupt the tachycardia

Have you tried having the setting on "Passive" where it will detect and count the abnormal rhythm but not intevene.  I say this because from your posts, there is some doubt about the PMT diagnosis or the usefulness of your settings for this disturbance?

I know with my Mode Switch to prevent atrial tracking of any high rates (including those from atrial ectopics), it can cause problems if the detection rate onset is set too sensitive (high sensitivity being a low onset tachycardia rate).  I have also had my atrial lead sensitivity setting adjusted to help pick up more atrial high rate episodes.  While these settings all help to identify arrhythmia burden for tachyarrhythmias, their more frequent activation may cause other problems, so it is a fine balance that needs to be found.

Finally from your past posts, it appears you have questioned whether you felt better without a pacemaker.  Perhaps an option would be the ultimate challenge of turning your pacemaker off briefly while you are in the hospital and being exercise challenged to see whether your own heart can manage better without a pacemaker, with fewer symptoms?  This might confirm whether the problem really lies with pacing or with your heart's own electrical disturbances

Update

by Xtrabeat - 2024-09-26 14:57:31

Thank you all for your helpful comments and suggestions. I had an extremely helpful and productive session with the EP today who went through the history, the ECG traces I had made on the Apple Watch and the Fourth Frontier monitor and the previous PM settings. From the symptom point of view it seems that most of my issues relate to ventricular pacing, so attempts have been made to reduce this as much as possible. This time, retrograde conduction was measuresd and adjustments made to prolong PVARP but leaving the Post ventricular atrial blanking unchanged - the consequnce is a TARP of 500ms which means the MTR is now only 100. The paced AV delay has been extended to 300ms and the sensed delay to 275ms and a slight change to the sensitivity,  My mode iremains DDD as being preferable to going back to VVI. 

The upshot of this is that I was then able to walk up 8 flights of stairs (twice) without any of my usual exercise related symptoms and achieved a HR of over 140 which is the first time this has happened since the PM was inserted last December. Needless to say I am ecstatic - being able to exert myself again without feeling that I was about to black out  is a huge step forward. However, time will tell whether this translates to hill walking and I will wait to see what happens to the episodes of PMT - but the rate is going to be slower (because of the MTR). I will update in a few weeks when I have tested this more fully. Thanks again for your input.

That is good news

by Gemita - 2024-09-26 15:39:09

Just to be listened to and to have the EP read our personally captured data from both the Apple Watch and Fourth Frontier monitor I am sure meant so much.   

This is an excellent start and i will be keeping my fingers crossed that your improvements will continue and if they do, we will know that you are on the right track with your settings adjustments.  This is all just trial and error as is so much in life, but necessary trial and error to reach our goals.  Good luck Xtrabeat.  You deserve to be well

Yay

by Lavender - 2024-09-27 00:28:56

Congrats on a successful visit and some good results!

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