Any thoughts on the right settings

My thoughts

by Lavender - 2023-08-30 11:34:57

I think I would rather be symptom free and let it pace more. I'm 100% pacing. No symptoms. Let it be. 

To Lavender

by robert9034 - 2023-08-30 12:10:47

Thanks. My problem is all this is new to me. They have now told me to come in tomorrow when they will reset the VIP but extend the PVARP Which means very little to me.  They seem keen to reduce the percentage the pacemaker kicks in as apparently it can cause problems long term ?

very hard to get information one can rely on 

regards

robert

I hope this helps

by Gemita - 2023-08-30 12:21:38

Robert, I did not read your earlier post, so my comments relate to this post only.  I note you are experiencing PMT (pacemaker mediated tachycardia) and that your team are saying these are likely caused by premature atrial beats (PACs) rather than due to VIP (ventricular intrinsic preference pacing).   I repeat, they are suggesting that PACs would appear to be the trigger for your PMT rather than due to VIP, so my feeling is that we need to work more to control the PACs rather than look at the VIP.  Would this be your interpretation too?

They are clearly in a difficult position since you or they are not wanting to have a high percentage of pacing in your right ventricle if this is correct? However, by having reduced percent pacing from 99% to 63% you have triggered worsening symptoms.  

I agree with Lavender.  We always say here on this forum that it is not those percentages that matter but how we feel?  If we feel well then that is what matters.  We worry too much about pacemaker pacing burden.  If we need pacing, we need it.  Clearly you are not feeling well with your present arrhythmias/PMT and you need help to control this.   Not everyone with a high percentage of right ventricle pacing will go on to develop RV pacing induced cardiomyopathy, if that is what you are concerned about?

However I believe working with the manufacturer who will have a better knowledge of your pacemaker and all its settings will be helpful.  There are many atrial settings that may help to control PACs and I would ask about this when you return to clinic for further adjustments.  You could specifically ask whether there are any algorithms or features that can be activated to help control PACs which appear the triggers for your PMTs.  I suffer from PACs and they can come in very fast at times, triggering tachycardia for me too.  I have a Medtronic pacemaker and I am currently using "atrial preference pacing" features but on some pacemakers there is a setting called “atrial rate stabilisation” which you could ask about.  I am not sure whether your St. Jude pacemaker has this feature?

Possible way forward:  Perhaps reinstate the original settings, control the PACs and then reassess your symptoms?  Otherwise I would trust your team, in conjunction with the manufacturer rep to advise you correctly on settings adjustments.  May I ask what your main concern is:  your symptoms or the fear of a high degree of ventricular pacing??  Symptoms are always a sign that all may not be well and since you felt better before any settings changes were ever made, I would reinstate the earlier settings - all of them?? 

Update PVARP = In a normal heart, the upper chambers of the heart contract just a little before the lower ones do.  PVARP is an atrial resting period after the ventricle has contracted and this should be long enough to stop the pacemaker from firing.  During PVARP, the atrial lead does not sense any atrial activity so ventricular pacing is not triggered.

It is important to note that after an R wave is either sensed (from spontaneous ventricular activation) or paced (by the device), the atrial lead cannot sense any electrical activation in the atrium for a pre-specified period of time. This is called the post ventricular atrial refractory period (PVARP).  

To Gemita

by robert9034 - 2023-08-30 12:37:26

Thankyou for the advice. The settings were fine. Then they changed them. VIP put on Then the next day the reversed the changes.  So one would have thought it would be fine again. But there are still some PMTs though much less.  
now they want to reintroduce the VIP but with some tweaks.  Guess I have to go along with their advice but I don't really trust them not to be just trying things on in the hope they may work   Not used to being out of my area of expertise 

Robert

by Gemita - 2023-08-30 13:03:34

Robert, you say the settings were fine before they made any changes, so presumably you were symptom free too until they changed the settings?  Perhaps they also changed “other” settings as well as VIP which is why you were not fine when they switched VIP off again?   I have had many settings changes and some are finely balanced.  Turn one setting off or on and it can affect another setting.  I would question them very carefully to see whether all the settings have been restored to their earlier values?

Is it possible for you to ask for the manufacturer rep to be present when you go in for your settings adjustments?  They usually know more about their own device than either your hospital technician or your Cardiologist/EP.  If you don’t trust your team Robert, then this is a bad sign and you might be better off finding a new Cardiologist or EP, although from your post and comments from your team, they sound very willing to help you and I don’t get the impression at all that, in your words “I don’t really trust them not to be just trying things on in the hope they may work”. 

We all have a lot to learn here Robert, but one thing I can say with confidence is that with any disturbances of rhythm whether they be pacemaker related or related to our own heart, that a lot of the treatments out there will be trial and error, yes trial and error, until we hit upon the right setting, the right medication, the right treatment, lifestyle etc. to suit.  Electrical disturbances of the heart can be difficult to treat and we need to be patient.

Please have confidence in your team and if you cannot, then do find another team to work with.  I wish you all the very best for a successful outcome

Re: Accepting Abbott's Advice

by Penguin - 2023-08-30 14:04:39

Hi Robert, 

This is a bit of a long post - warning! Let me know if you'd like me to explain anything.

Your clinic / EP are talking about a 'long AV delay' between the atrial and ventricular nodes. This seems to suggest that the impulses are still getting through to the AV node but that they are substantially delayed.  

It seems that you feel unwell when you experience VIP pacing. I've tried to explain why you feel unwell below; why it may be programmed and how it causes PMT.

The VIP Algorithm & V.Pacing

The VIP algorithm uses something referred to as an 'hysteresis'.  We all have a 'normal' AV delay (technical term 'PR interval') which is the amount of time that an impulse takes to travel from the sinus node across the atrium to the AV node.   When we have a pacemaker the device can be programmed so that the device will wait a little longer for these impulses to reach the AV node. This is to limit the amount of v.pacing that a patient receives. It is referred to as an AV delay.  

 Abbott's VIP algorithm uses a programmed 'paced' AV delay and allows this to be extended further by adding additional AV delays which occur in rotation up to 3 times according to need. The device is programmed to wait inbetween rotations for intrinsic conduction to happen. 

As I understand it, the mechanics of repeating AV delays of varying lengths seems to be one of the reasons that patients experience PMT . Long AV delays may also predispose you to PMT.   PVC's (as mentioned above - Premature Ventricular Contractions) are a common cause. PACs can trigger it too as well as atrial arrhythmia and other settings on the device (Rate Response for example) can interact to prompt some of these issues. 

My thoughts are these: 

1. You need to have your AV conduction diagnosis explained by an EP so that you know what you are dealing with - how long your intrinsic conduction delay is and why you feel unwell when the VIP algorithm is in place and you are not v.paced as much.

2. You need to know what is currently programmed. e.g. how long the programmed AV delay is and whether or not VIP extensions are programmed. Are the extensions necessary and are these extending, rotational AV delays responsible for causing PMT.

I would respond to this letter with a request for a face to face  appointment to discuss the above.  

In the meantime I would accept the offer of an Abbott Rep to advise on settings to eliminate the risk of further PMT.   You should ask for the reassurance of a further pacing clinic appointment if you continue to experience symptoms after the Rep has made any changes. 

To penguin

by robert9034 - 2023-08-30 14:29:15

Wow  Thats helpful  At least i know what to ask tommorrow

In simple terms if they reinstate the VIP they need to ensure there's enough time lag programmed in for my natural impuses to go through before the pacemaker thinks they are missing and kicks in

I'll report back

robert

VIP delays

by Penguin - 2023-08-30 14:36:29

I'd ask them about the length of your own intrinsic AV delay.  If it's very long already it may not be helpful to make the VIP delays more aggressive and even longer.  

It depends on how you tolerate long delays vs more v.pacing.

You need some expert advice. Ideally from the Abbott Rep. 

I can't comment on the PACs. Don't know enough about them. 

This link explains about VIP algorithm - but you may find parts of it confusing.  

https://www.cardiocases.com/en/pacingdefibrillation/specificities/pm-pacing-modes/abbott/pacing-modes-specific-abbott#:~:text=VIP%20(Ventricular%20Intrinsic%20Preference%20%2D%20Abbott),-There%20is%20no&text=VIP%20is%20nominally%20programmed%20OFF,180%2C%20190%20and%20200%20ms

keep an open mind

by Gemita - 2023-08-30 15:59:15

Latest clinic report

Robert, I would go to your appointment with an “open mind” tomorrow about what needs to be done. Your team clearly stated in your latest clinic report  “Yes, we received your transmission which confirmed that you are still experiencing some of these PMTs, although these are being caused by ectopics (premature atrial beats), rather than VIP which has been explained before)".

It would appear from the above comments that they have already tried to explain what is going on and you don’t seem to be listening or accepting their opinion.  I don’t know whether this is due to a break down in respect, trust and confidence in your team or whether you are struggling to gain control over your symptoms and care.   We have all been there, but I am not sure that going in telling a health professional what needs to be done tomorrow will get you very far.  I would go in respectfully, keeping an open mind and spend a lot of the time listening to gain the most benefit.  Hope it goes well for you and please update us whenever you can

Gemita

by robert9034 - 2023-08-30 16:09:18

Hi

im on a steep learning curve.  Before yesterday I had been given no information or explanation . I think they have to earn my trust but I'm willing to let them. But from my point of view everything was fine or at least symptomless. They they made changes without my knowledge.  That caused symptoms. They then reversed the change but only at my insistence. There are still symptoms.  I have yet to see a consultant though am doing so next week.  In the meantime they want to make more changes . In my career as a lawyer I've dealt with a lot of medical negligence cases and am fully aware how often mistakes or bad judgements occur.  So I will be open minded and I will listen to advice but I will want to be kept informed of what they are doing and why   It's not a case of not listening. More not being told until the last minute after  a lot of pushing.  I'll report back 

Concerns

by Penguin - 2023-08-31 05:35:33

Robert, 

I've read through your concerns again this morning. You refer to 'mistakes and bad judgements' relative to medical negligence. I don't think that these programming decisions can be placed in that bag. Currently they feel awful and disconcerting and I can relate to this as pacing adjustments can cause horrible symptoms and PMT is one such symptom. However, they are usually reversible and if you felt well initially it is very likely that this is the case. 

If PACs (ectopics) are now the suggested cause of PMT it's important to enquire as to why you are experiencing them. As stated previously I don't know enough about them to advise or comment but clearly they have appeared for a reason. This needs to be explained to you. 

Interrogation Report

Any changes made to your programming today will appear on your interrogation report. This is printed out at the end of your session and you are entitled to a copy.   Ask for one. The report details the settings in place and will also include any 'events' such as PVCs, PACs and PMTs. Usually there is evidence printed out for these events e.g. device generated ECGs.  Therefore, if you are in any doubt as to what caused your symptoms you should be able to reassure yourself via this 'evidence'. 

Take the copy home and try to become familiar with some of your settings and the changes made. We're always happy to help with this - if we can - on here, so please reach out if you need further explanations. 

A little time exploring your device settings over the week-end may pay dividends for your meeting with the EP. You will be better informed and prepared. 

Good luck today.  I hope they manage to remove any residual PMT for you.  The Abbott Reps are usually very helpful and act as expert product advisors. 

Penguin

by robert9034 - 2023-08-31 05:56:25

Responses from a couple of sources at the hospital seem to pin the problem down to my own natural rhythm being slower than normal and the pacemaker needs, if possible to be adjusted to allow for this.  Todays planned changes are to be based on advice from Abbott so sound promising.  
im trying very hard not to sound critical but it is beyond doubt that it has only by being pushy I've moved from being told to come back in a year to getting treated again today. I'll be polite and respect their judgement but keep a critical eye on what I am told . That's why the advice I'm getting from this forum is so useful and really appreciated Thank you 

Conservation

by piglet22 - 2023-08-31 08:00:08

Reading conservations like this one makes me think that there must be a parallel cardiac universe out there.

Manufacturers reps, printouts, even explanations. Not in this neck of the woods.

Whack up Bisoprolol 8 times original dose to maximum over a few weeks and you don't even get a "how are you?" And that's just for starters.

Talk about a postcode lottery.

Piglet and Robert

by Gemita - 2023-08-31 08:29:04

Your experience has been dismal Piglet.  It varies so much though and it is certainly a postcode lottery.

Robert, I am afraid the promise of an Interrogation Report at the end of your check up is not guaranteed.  Different clinics have different policies regarding giving their patients a copy of their interrogation report “on the spot”.  

I have to apply “formally” to receive my pacemaker data and it can take weeks to months to arrive depending on the hospital's workload.  Some UK patients have been fortunate and have received a copy of their summary sheets following an interrogation, but to get a full detailed report, not sure that it will happen.  My husband and I are under two different London UK hospitals and are never offered copies of our interrogation reports and have had to request this data formally.

Additionally, there is only so much storage space on a pacemaker and only important events like atrial/ventricular high rate episodes or significant arrhythmias will be stored/recorded on ECGs.  PACs and PVCs will not usually be stored on a pacemaker’s ECG unless these ectopic beats appear in an ECG recording for another significant arrhythymia like Atrial Flutter, Fibrillation, Ventricular Tachycardia.

I know some UK members in the past have successfully asked for a copy of their settings on a USB/thumb drive but I am not sure that this service is available to many UK patients.  I suspect not.

I do hope your experience will be a favourable one and that you will get an indication of some of your settings and any significant stored "events".  It is certainly worth asking about while you are there.

Update

by robert9034 - 2023-08-31 12:06:30

Had an appointment this afternoon to reset the pacemaker. Two technicians  and a representative of  Abbot.  Very thorough. spent about 30 minutes trying different settings and tests.  I can't really explain all the changes made but seem to be VIP left off, the delay before the device kicked in lengthened to 275ms and the pacemaker function to the upper chamber either turned off or dialed down, The intention to let the strong natural rythm in the upper chamber function with the device kicking in about 60 or 70 % of the time  as a result of the occasional missed beat.  That's probably wrong and over simplified but I'll press for written details. Various tests done to try and artificially prompt PMS but didn't happen.  They seemed very professional and I put myself in their hands  The test will be to see if the PMT that had been happening reoccurs or is at bay .

So happy so far

Thank you for the update

by Gemita - 2023-08-31 12:18:38

Delighted to hear your news Robert.  It sounds all very positive and as though you had a very encouraging session.  When it works well, it works well.  Thank you so much for letting us know.  I will keep my fingers crossed that the changes will keep you free from pacemaker mediated tachycardia and I look forward to the written confirmation in due course of what has been done.   That is the way we all learn.  

No doubt next week when you see your Consultant you will receive further news and confirmation.  A good job done!

Gemita

by robert9034 - 2023-08-31 12:47:26

I think I fell better already. More energetic.  Let's see how it goes over the next few days

i know this may be unpopular but if I hadn't been pushy I very much doubt I would have the attention I did today. That's been to my advantage but not everyone can do that. 

I know!

by Gemita - 2023-08-31 13:16:54

Robert, yes we have to push to get results under the NHS, don’t we.  I’m too soft and don’t like to upset anyone, so allow them to upset me instead, but I am learning to change my ways.  I agree though you took a firm stand and it has been to your advantage.  Two technicians and one rep that was incredible service.  The reps know their devices so well.  

My technician (they are called cardiac scientists in my hospital) has had to consult the manufacturer rep on several occasions over some of my pacemaker stored ECGs.  The device rep was able to identify the rhythm disturbance present immediately.  They certainly know their devices/settings and what can affect ECG recordings.

I hope your heart stays quiet.  Great news so far

Good News

by Penguin - 2023-08-31 13:55:35

Great service indeed. I'm pleased that you've been able to make your point and get the help you need. Well done! 

If they've left VIP off you will not get the varying AV delays that 'may' be triggering your PMT.  VIP is responsive - which is positive, but an old fashioned steady AV delay which is consistent and covers most likely intrinsic delays (275 ms in your case) may work better for you. 

I'm not clear what they've done in the atrium. You could ask at your next appointment.  This article is fairly easy to understand and explains some of the terminology used in the comments above. The last paragraph in the section titled 'Treatment & Management' may explain what the Abbott Rep has done e.g. dialled down the sensitivity. 

https://www.ncbi.nlm.nih.gov/books/NBK560831/

Cheering you on

by Gotrhythm - 2023-09-01 15:25:13

I don't have the technical expertise to comment on your problem. I just wanted to offer my sympathies.

I too have dealt with PMT induced by ectopics--more than once.

Kudos to your team for being able to diagnose the problem so relatively quickly. It's a tricky problem to spot. Figuring out the settings that will let the pacemaker do what you need it to do, but not trigger PMT is also tricky, because your heart is already not responding in completely predictable ways to being paced.

Congratulations on your new settings and on standing up for yourself until you got the attention you needed.

Trust me, even if you're not dealing with NHS, it's crucial to advocate for yourself, again and again.