RNRVAS (cont)

So Glad You Are Feeling Better

by SeenBetterDays - 2023-03-18 13:48:20

Thanks for sharing this GotRhythm.  I had not heard of this phenomenon before either.  It sounds as though this was causing horrible symptoms for you.  I am so glad you had the support of your friend and managed to get this investigated properly.  You are always very articulate and well informed in your posts and you have made me realise how important it is to be educated in our settings and any potential issues which may arise.  Good on you for persisting and getting this resolved.  It's great to hear that you are feeling better and that your heart rate is stabilising nicely.  

Interesting

by Penguin - 2023-03-18 13:52:34

Hi, Thanks for the feedback.

Like you my resting heart rate is above my base rate of 60 bpm a lot of the time now - even at rest.  It used to sit at 60 and never budge whilst sitting down, but is often at 68-80 now. 

Interested to hear any additional details you choose to disclose publicly or by PM about your appointment. (I'd prefer to discuss my own settings etc. by PM).  

The PVARP reaction is interesting. I'll check if mine has been extended. Extending PVARP generally helps with the other type of PMT and is the 'go to' settings change used.  

Atrial only pacing wouldn't work for me, but I'm so pleased that you've got a result and that my previous post helped you. 

Good news! 

SeenBetterDays

by Gotrhythm - 2023-03-18 16:04:43

Without the help of TPC I wouldn't even know I had settings--or what they meant. But they do matter--not interms of whether your pacemaker is working right, but in terms of how you feel--and let's face it, how you feel is what really matters. Settings are something you should review after every interrogation.

Because I did know, I was able to tell the tech and PA some relevant heart block history about why my settings had been changed years ago from AAIR to DDIR, and why it was probably safe to change them back. The PA quickly searched my chart, and said, "She's right! Before her hyatal hernia surgery the percent paced in the ventricle had been steadily increasing, but since the surgery it has gone to less than 1%.

Funny note. After the appointment was over, my friend (blessed be her name) asked "Do you have many other patients who know as much about their pacemaker's as she does?" And after some thought they said, "Well, yes, some. They're usually electrical engineers." 

So while I've learned to use some of the words, I can still be outclassed by someone who actually understands how these little gizmos work! [wry chuckle]

Penguin

by Gotrhythm - 2023-03-18 16:25:05

Interesting! I threw in the tidbit about the resting HR, just because the discrepancy between settings and experience comes up here from time to time. Still don't know what it means, exactly... But who knows how that morsel of information might be the clue someone else needs?

Sorry atrial-only pacing wouldn't work for you. I can't prove it, but I beleive my intermittant heart block, type 1 was caused by the fact that my stomach was lying on my heart. When the hyatal hernia surgery put the stomach back where it belonged, the heart block completely resolved. The AV node is fine.

By the way. Sleeping much better and waking up feeling really awake and rested.

Amazing success

by Gemita - 2023-03-18 16:32:15

Gotrhythm, I am so glad you had a friend who wasn’t prepared to take no for an answer and got you quickly seen when you were actually experiencing episodes of severely disruptive rhythm disturbances.  What a difference that has made to the outcome.  

I was surprised to hear that there were no specific features/algorithms to detect/diagnose Repetitive non-reentrant ventriculo-atrial synchrony.  It sounds to me as though they used a combination of Settings to induce RNRVAS in clinic.  Would you by chance know the sequence of Settings that they went through which elicited RNRVAS?  It would be so helpful to know what settings were adjusted, activated or deactivated to trigger your disturbances?

Your symptoms now seem so controlled and you sound so much better in all respects.  It is disappointing and worrying that so many of us with arrhythmias have to tolerate the distress of our symptoms for so long before serious attempts to help us are made.  In some cases they are never addressed and patients spend miserable lives searching for a solution.  And it doesn’t always have to be this way.  But it takes tremendous effort on our parts to find a solution.  

I am also pacing AAIR mode (well AAI since rate response is off at the moment) and AAI mode suits me very well too.  I have a steady resting rate of 70 bpm which increases to 80 bpm when automatic mode switch is active in DDI mode during an atrial tachyarrhythmia, returning to 70 bpm on cessation of arrhythmia. 

Now that you have given us some background information, would you care to share with us any additional information Gotrhythm of your experience in clinic, particularly how you felt during testing for your arrhythmia?  Were you lying down, sitting down and how did you tolerate your symptoms as they induced the arrhythmia?  I am sure they will make a full report and it would be helpful if you could find a secure way of sharing this with us all at some time by posting in the Gallery?

Were you able to question them why they left you struggling for answers for so long and were you able to get across to them the importance of really listening to their patients;  that patients are certainly not able to understand what specific questions to ask to gain the most from their pacing?

Well done Gotrhythm for persisting and well done Penguin for raising this issue.  I think it highlights the need for us all to continue to ask challenging questions until we are happy that our settings have been optimised to suit our particular needs.

By the way

by Gotrhythm - 2023-03-18 16:32:22

R-N-R-V-A-S can be said as a word. Sounded something like ree-inner-voss, when the tech said it. If anyone knows how people in the know pronounce it, please speak up.

Gemita

by Gotrhythm - 2023-03-18 20:17:05

As always your comments are fully thought out. To answer them I'll try to take them idea by idea, rather than the order you presented them in.

1 settings to induce PMT. Don't know. Tech did remark as soon as my pacemaker was synced with his equipment that he saw a lot of PVCs and PACs. The change I could feel him making was HR. I was mostly sitting. Sometimes standing and sometimes, after a change, walking the corridors, so he could watch what happened with the pacemaker as I did. It was while I was walking he could see the RNRVAS PMT even though he had changed the PVARP.

2. how I felt when symptoms were elicted. In my case, the difference between a simple HR increase and the onset of symptoms was easily discernable, whether sitting or standing. I suspect anyone watching me closely could also see it. It's hard for me to describe though because I'm not getting enough oxygen to the brain at that instant and so the memory of it is fuzzy.  I just knew I didn't feel good, felt heart going bumpety, sometimes felt near fainting. I was having so many that I felt terrible (tired, weak, fuzzy-brained, out of it) all the time.

3. why it wasn't picked up sooner. Logical error. PMT was theoretically impossible, already dealt with and disposed of. Therefore it couldn't be happening. Furthermore, the settings on the new pacemaker were "exactly the same" as the old, and they were fine for years. Therefore, if I said it was happening, I was a querulous,fussy, illogical, time-wasting little old lady--but very sweet--who just had to be reassured and sent on her way.

The other reason it wasn't picked up, according to what the PA theorized, is that the very fast RR was "covering it up." (PMT is a non-programmed fast heartrate.) When the RR setting was lowered, it still happened but it was more easily spotted as something non-programmed. Does that make sense?

One thing to understand about RNRVAS PMT is that it is a fairly slow (!!) tachycardia that is short-lived. The only way to find it is to look for it. Like you, I wonder how many other people are suffering.For sure, if I had been given a cognitive competence exam right then instead of a pacemaker interrogation, I'd have been on my way to assisted living. I do think the fact that I specifically asked about RNRVAS improved the chance of it being seen.

4. being heard. "Hearing" is hard. No blame. The techs and PAs, all of them,  were doing their usually-excellant best. Unfair as it seems, it behooves us cyborgs to do all we can to learn to speak "pacemaker" as much as we can so as to help them help us. When it comes to being heard, the importance of having an advocate with us in the room cannot be overstated. The advocate can clarify for us when we aren't clear, and also add what symptoms they have observed. Plus, the advocate can seek answers and results in a way that isn't as confrontational and so give the professional a chance to change their approach.

RNRVAS

by PacedNRunning - 2023-03-19 02:47:56

I had this also. I had symptoms but not syncope or close to it. Just thumping and continuous palpitations feeling. Awful. Mine was due to long AV delays. They must have had long AV delays for you and switching to AAIR took out that timer. It is a rare thing to happen but only seen with long Av delays.  Glad it's fixed. 

Makes sense

by Penguin - 2023-03-19 06:38:44

I have long AVDs and the continuous palps like PacedNRunning describes.  RR is another concern as it's now clear that this and the voltage applied to my heart has been adjusted upwards too.  

No syncope for me either but new ventricular tachycardia. 

Thank you for this post GotRhythm. You've helped a great deal. 

Also thank you for clarifying what is happening with your AV node.  That makes perfect sense now. 

FYI - (and this is opinion only) You may be better with a different brand of pacemaker with this new diagnosis.  Abbott devices operate in DDDR mode or AAIR mode mainly.  DDD and AAI modes both come with their issues. DDD can cause unnecessary v.pacing and AAI (atrial only) pacing has it's issues too.

Abbott devices do not offer the AAI-DDD setting which Gemita alludes to and which she has set up on her device. Most device manufacturers offer an AAI-DDD setting.  These settings were designed to keep a.pacing mainly in the atria but will mode switch to DDD on criteria which the device applies and which can be modified with programming. This is to avoid the issues associated with DDD pacing and Atrial only pacing.

 It sounds as if your precise diagnosis should have been better determined before your PM was selected, particularly with regard to eliminating the AV node conduction issue which resolved after your hernia operation.  See how you go with AAI pacing but speak to your EP about it and make sure that you are not going to run into further issues with AAI only pacing further down the line.*

*I don't know enough about the issues associated with atrial only pacing to comment. Speak to an EP as I may have this round my neck. I'm not an expert. 

I'm very grateful to you for your feedback. 

PacedNRunning--you nailed it.

by Gotrhythm - 2023-03-19 12:27:02

I did have a long AV delay as a workaround for the PVC-induced PMT! The long delay was why I kept being told PMT was impossible.

As for rare--that's me. If it's possible to have a strange quirk to a fairly ordinary diagnosis, I do.

If I had the measles, I'd be the one case in a million that presented with little blue spots.

Question for you. Is a long AV delay a way of talking about the same thing as PVARP?

Penguin: diagnosis

by Gotrhythm - 2023-03-19 13:43:23

The EP who installed the original pacemaker was what I call an 80/20 doctor. 80% of patients will have 20% of possible diagnoses. Get good at dealing with the 20% and you will be successful 80% of the time. Looking for the rarer diagnosis in a Medicare insured patient is a money-losing proposition. The more visits, the more money lost.

That being said, I did present originally with pretty classic SSS with no "cardiac" symptoms, except extreme tiredness, momentary feelings of breathlessness, and brain fog. All tests, including EKG, were normal. That EP had no reason to suspect the diagnosis was inadequate. And when a year or so later he (maybe) did, we ran into the 80/20 rule.

As for the contribution of the hernia to the heart block. No doctor as far as I know has seen the connection. I made it myself and only after the surgery when I saw the change in percent V-paced. I do plan to discuss it in my next appointment with my current (not 80/20) EP. But given the compartmentalization of specialities, I don't expect much.

Just for clarification. Nobody ever told me the 80/20 rule. It is only an hypothesis I developed based on observation of physician behavior. I generated my own rule. Even the best doctor doesn't know everything and the corollary: You can't make a doctor smarter than he/she is. Therefore: If you've been back three times for the same problem with no help, move on to someone else.

Gotrhythm

by Gemita - 2023-03-19 13:43:33

Thank you for taking the time to answer my questions.  I am glad you were sufficiently challenged in clinic, however difficult that must have been for you at the time, to enable them to witness the RNRVAS actually happening.  How often are we fortunate enough to say that?   

Your symptoms sounded as though you were close to collapse at times with awful brain fog, but you have gained so much by pushing through your ordeal.  You are certainly not a time-wasting little old lady, but one full of challenging questions just to keep your doctors firmly on their toes.

Why wasn’t it picked up earlier?  Your comments about RR possibly having “covered it up” makes sense and I would imagine other rhythm disturbances complicated the picture too, especially with RNRVAS being fairly short lived and slow.  Of course something has changed:  your heart condition and also your hiatal hernia has been repaired, both of which would/could have changed your pacing requirements.  The proximity of a large hiatal hernia to the heart for instance could most definitely be a trigger for any rhythm disturbance.

I would have loved to have been there when you asked “I know it 'can't be' PVC-induced PMT, but I'm wondering if some sort of RNRVAS could be going on?”.  I am sure they wondered who on earth you really were? 

I was interested in PacedNRunning’s comments too about AV delay/interval although we have discussed AVD several times here, more recently in Penguin's posts.  I see that AV interval optimization is important, although our settings would depend on our personal metabolic demands and on factors such as our body posture, our heart rate, ejection fraction, cardiac output, stroke volume etc. and on our pacing/sensing modes.  My AV delay settings in case of interest are:  Sensed in ms = 150, Paced in ms = 180, but these are fairly standard factory settings, but they work well enough for me with my Medtronic PM.

I have been AAI paced for 5 years at close to 100% with no adverse affects that I know of.  My heart chambers are not enlarged, my EF is around 55%, my arrhythmias have certainly not progressed and when they occur, my symptoms are reasonably well controlled, thanks to AAI pacing (with some overdrive pacing/mode switching when needed).  I can thoroughly recommend AAI pacing for a patient with sick sinus syndrome.  I do have some intermittent right bundle branch block activity, but my AV Node seems intact.  I pace very little in the right ventricle (less than 2% at last check).

Link Explaining PMT

by Penguin - 2023-03-19 15:51:52

This link might answer you question about an AV delay and PVARP and the difference between them.  

Essentially an AV delay is similar to the PR interval on an ECG (time lapse between an impulse beginning in the sinus node and travelling to the AV node = PR interval).  A 'normal' PR interval is normally no longer than  200-220 msecs and an AV delay can be programmed to amend this amount of time.  It can be used to avoid too much v.pacing and pacemakers can allow up to 450 msec AVDs. 

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

The link below explains PMT in DDD pacing and mentions the role of PVARP, PVCs, Rate Response and AV delays.  

https://www.ncbi.nlm.nih.gov/books/NBK560831/#:~:text=It%20is%20important%20to%20note,atrial%20refractory%20period%20(PVARP).

Gotrhythm

by PacedNRunning - 2023-03-19 17:37:21

I was going to answer about PVARP and  AV delay but Penguin answered it. Long AV delays is your PR interval. Essentially it's long to limit pacing. The PVARP is different. It's the blanking after a V sensed beat. I had PMT issues at implant. Mine was tricky because I needed a short PVARP for exercise. So they to set it short but mine is dynamic so it varies based on my HR. They gave me a magnet to get myself out of PMT. Thankfully I've never had to use it because once they made it dynamic I no longer had PMT and I also no longer have retrograde P waves, it stopped. You will typically see this PMT when you have normal AV conduction because you'll have retrograde P waves. I have CHB so no retrograde any longer. I basically think of timing cycles with the PM has eyes. You tell the PM what to see and what not to see. So basically a long AV delay keeps the PM EYES closed longer than if it were short. PVARP is the same way.  It's telling the device to close its eyes for xxxxx time then once the timer is up, open the eyes. Blanking means eyes closed. 
 

I had to laugh at your measles comment!  I'm the same and I believe the 80/20 rule. That's a great way to explain that. My doctor told me the other day " your heart has a legacy of confusing me!"  Yup! You put me in the every body box. Lol. I just finished with a Zio. It showed AIVR/junctional and 13 seconds of non pacing! The device allowed me to drop To 36 bpm with no pacing!  We don't know why it inhibited pacing. EMI? Scary to see. I'm like WTH ?? I was having really bad episodes of nausea. But none when I wore the Zio. So I understand the blue measles lol. 
 

Hope this works. We have to be so on top of our heart because they don't have the time to look at it closely. They don't care if our pacing goes up or down.  To them it's normal to see. So good catch on that!

Penguin and PacedNRunning

by Gotrhythm - 2023-03-20 17:00:59

Thanks for AV delay vs PVARP explanation

Once I have read it over 40-50 times, very slowly, sentence by sentence, all the words will probably find a resting place in my brain. We're talking about the quality of my understanding, not the excellance of your explanations.

Already I know now that they are two different things!  Yay!

"Line upon line and drop by drop. Thus wisdom comes to us..." (not sure exatly which Greek philosopher's quote I have undoubtedly mangled.

Anyway thank you. And thank you for putting it in writing so that I can go over 50 times--if I need to. I'll know I've understood it when I can explain AV vs PVARP in such ordinary terms--vastly simplified and not strictly accurate--that I can explain it to someone who actually knows less than I do.

PacedNRunning__ your HR dropped to 36 and your pacemaker let it? Yikes. Made chills go up my spine!  And yes, that's a case of blue measles if I ever saw one! The tech says, "The patient's symptoms sound just like pauses, but it can't be pauses because the patient has a pacemaker.  I mean, that doesn't happen, right?"

Right!

by PacedNRunning - 2023-03-23 05:15:09

Funny thing is my apple ecg's show pausing but no one wanted to believe it's an actual pause. They all think it's not possible since I have a PM. My Ep said zio called me and told me you had 13 seconds of CHB ( my underlying rhythm) and he said huh? She has a pacemaker 😂. Confused him. Scared me. Still haven't figured it out. Tested my device will iPhone, iPad, massage gun you name it. My device ignored it all. 

Right!

by PacedNRunning - 2023-03-23 05:15:27

Funny thing is my apple ecg's show pausing but no one wanted to believe it's an actual pause. They all think it's not possible since I have a PM. My Ep said zio called me and told me you had 13 seconds of CHB ( my underlying rhythm) and he said huh? She has a pacemaker 😂. Confused him. Scared me. Still haven't figured it out. Tested my device will iPhone, iPad, massage gun you name it. My device ignored it all.