PM printout wrong diagnosis

Hi all, still looking for info, have to go back to see the cardiologist tomorrow. Dr wants to do an "echo" because he is short of breath all the time. She doesnt think it's a settings issue, but he was not having this issue before they put in the PM, (Dec 2013) he simply passed out and without much warning.

A couple things concern me, the first is that he suffers from Syncope and his pacemaker printout has him with Bradycardia. Is this anything to worry about? (His old PM read "Syncope")

This is his second PM, when the battery died on the first one he was OK but still had some episodes of syncope, now that he has this PM he is constantly short of breath as well as miserable and grumpy (NOT normal at all!)

His last PM resting was set at 70, this one is set at 60

Please help, I need to have some idea what to say to this cardiologist
Thanks!!

21 Comments

big words

by Tracey_E - 2014-04-24 03:04:01

They throw around a lot of words on our charts and pm reports. Bradycardia (heart rate under 60) and syncope (passing out) are symptoms, hypersensitive carotid artery is the root cause so that would be his diagnosis.

Yes, it's possible to set the day and night minimums to be different.

The first thing I would ask is how often does he pace. If he occasionally does something that causes his heart to pause, the pm will kick in and bring his rate up for those few seconds. That probably is not a lot of pacing so it shouldn't matter if the minimum is 50 or 60 or 70. That's more important for someone who's rate habitually drops. To keep the math easy, let's say it's set at 60 bpm, which is one beat per second. That means that the pm watches 24/7 for the heart to go a second without a beat. As long as it beats at least once per second, it just watches. Then it pauses, that very first second, the pm will kick in with a beat. Are you seeing why it doesn't matter if it's 60 or 70? It's only a fraction of a second difference.

Now, if he's pacing a lot, then those numbers are more important. Echo's are great, they'll show how efficiently the heart is functioning. Another useful test could be a stress test. Not the chemical kind, get on a treadmill while they are watching the pm computer so they can see exactly what his heart and pm are doing when he has shortness of breath.

It seems odd, however, that the new symptoms started after the change. That to me screams of setting changes. There are a lot of settings other than minimum. For instance, if rate response (pm raises rate for you on exertion) is on and he doesn't need it, it can compete with the heart's natural ability to go up on exertion. There are lots of other things, also.

thanks! yes sort of

by Terrytica - 2014-04-24 03:04:46

I really appreciate the reply!
on the bpm, that's what I was thinking but the Dr does not agree, so I guess we'll just have to see what the echo shows. If it shows what I suspect and there is nothing wrong with his heart, I will need to insist, I suppose.

His Syncope is caused by a hypersensitive carotid artery, if he turns his head the wrong way or wears anything tight around his neck his heart just stops, doesnt really slow down as in the case of bracycardia which is a slow resting heart rate. So I am wondering if the symptom or diagnosis that is set on the PM affects how it paces in any way? Does anyone know?

Also this seems to have night time settings, was wondering if it's possible to set those at 50 and daytime at 70 as a compromise with the dr?

forgot

by Terrytica - 2014-04-24 04:04:02

I dont see anything on the strip about how often he is pacing, what would I be looking for?

Makes sense

by Terrytica - 2014-04-24 04:04:37

Thanks TraceyE, well that could explain this issue, not sure which would be the rate response, some of the settings are as follows (I dont know what most mean)

CLS response: high (old PM didnt have these)
CLS resting rate: off

Sensor rate fading: 120 bpm (shut off in old PM)
Sensor gain:11 (shut off in old PM)
Automatic gain:on (shut off in old PM)

Upper rate response {BPM}: 130WKB (not seeing on old PM)
wenckebach response {BPM}: 130-148
Arterial upper rate {BPM}: 240

I'm not sure what to look for on his old printouts they are in Spanish, I am fluent but dont see anything I think might relate

pacing numbers

by Tracey_E - 2014-04-24 04:04:40

Look for AS/VS, AP/VS, etc
A = atrial
V = ventricular
S = sensing
P = pacing

So, AP will be how much he paces atrial, AS will be how much he senses atrial (pm watches without pacing). V is the same numbers for the ventricular lead. If he is mostly pacing for pauses, it'll probably be more atrial than ventricular pacing.

CLS

by Tracey_E - 2014-04-24 05:04:00

CLS might be part of rate response. I don't have that and I don't use rate response, so I know nothing about it. But lots of other members do, hopefully one will chime in.

ok :)

by Terrytica - 2014-04-24 05:04:01

Not on the strip but on the report on first follow up. this is before the change from a base of 50 to 60
pacing in A/V[%] 31/26

uh oh

by Terrytica - 2014-04-24 05:04:29

yup, am seeing that, now I'm really confused. He managed perfectly well (except for a couple fainting spells) for over a year with a totally dead battery, (due to medical system where we live). Certainly nowhere near the issues he is having currently. Something is not right :(

pacing

by Tracey_E - 2014-04-24 05:04:32

That is more than the occasional kicking in when he has a sudden drop!

Convincing the Cardio

by Grateful Heart - 2014-04-24 06:04:07

See if you can convince the Cardio to raise the resting rate to 70, especially since that was the setting for his other PM and he felt fine. They don't like to make too many changes at once, which makes sense.

My resting rate originally was 60 and after a few months, when the swelling went down and the ICD settled in I suddenly felt like I was having to catch my breath all the time. My EP raised it to 70 and it made all the difference.

Grateful Heart

CLS

by donr - 2014-04-24 07:04:48

CLS= Closed Loop Stimulation.

It's part of the Rate Response system that Biotronic uses. Google search for those three words & it pops right up.

In a nutshell, Biotronic has created a DUAL Capable Rate Response system to address problems hosts w/ o any capability at all to generate accelerated HR's under requirements for it. The Accelerometer part senses body motion & generates a signal at an increasing rate for pacing. UNFORTUNATELY, that doesn't help people who need increased HR due to stress or anxiety or other "Mood" types of stimuli.

The PM has a capability to sense electrical resistance changes in the heart wall that indicate an increased need for higher HR's. From that information, it generates another component of the data needed for the RR response.

To read another host's experience w/ CLS., go down the main page to a thread entitled "Adrenaline" One of the comments in there by Golden_Snitch addresses this in some detail.

Donr

CLS needed?

by Terrytica - 2014-04-24 09:04:07

I am so grateful for all your comments and efforts to help!
Much appreciated, at least we understand more for the Dr visit tomorrow. Are there manuals somewhere for patients explaining all these settings?

So I suppose second guessing wont help much at this point, from what I gather, if he is only partially paced maybe he doesnt need CLS to begin with or it could perhaps even be interfering with his natural response? We just did a little unscientific experiment, he did a little jumping jack/jig for a few seconds. I checked his heart rate before and after, if it increased it did not increase noticeably at all, so that's weird since CLS is definitely is ON.

I realize we should not change a lot at once, but each visit to this Dr cost me 2 weeks pay, and if it helps it's worth every penny, but for that reason I am most grateful for as much info as possible before we see her.

minimizing visits

by Tracey_E - 2014-04-24 10:04:33

If you can get them to put him on a treadmill when they adjust it, he can try it out right away then they can watch what's happening adjust again as needed. It'll save trips back. Theoretically :)

Most of the manufacturer's websites have manuals you can download.

This book is written by a fellow member here. I've heard her speak, she's great. She's written manuals for the various companies so she has a great understanding of pm's and how they work.
http://www.amazon.com/Pacemaker-Owners-Manual-Pacemakers-People/dp/144868143X

CLS sensor

by golden_snitch - 2014-04-25 03:04:54

Hi!

I have Biotronik pacer with CLS, so I know a bit about this sensor.

Not every bradycardia patient needs it. If the sinus node is functioning well for the most time, you don't need the rate response. Being paced 31% in the atria sounds a lot like your husband might experience sinus bradycardia at rest and when sleeping, otherwise the pacing percentage would be higher.

However, when his heart rate does not increase adaquately when he exercises, neither his sinus node, nor the rate response seem to respond. That's odd. The reason why the CLS is not responding might be that the CLS response is set "high". High means that the pacemaker thinks your husband is a very well trained person, and people who are well trained generally have slower heart rates when exercising than those people are not well trained. So, with CLS set high the rate response will be a bit slow. In combination with his upper rate being limited to 130, it will take some really vigorous exercising to get up to that upper rate limit. Since your husband's sinus node doesn't seem to respond appropriately, too, my guess is that your husband needs the CLS sensor to be programmed so that it reacts a bit faster (CLS response = medium or low or very low).

The sensor gain settings are for the accelerometer only. BUT if the CLS is activated, the accelerometer isn't! In Biotronik you have the choice between CLS or accelerometer, you cannot have both switched on. So, the mix of accelerometer and CLS settings doesn't make any sense. I have exactly the same pacemaker, and my print out does not show any of the accelerometer settings, it only shows the CLS settings. Plus, if your husband didn't have CLS in his old pacemaker, and the accelerometer settings were shut off, that clearly indicates that he did NOT need the rate response back then. So, why does he need it now?

The Wenckebach setting of 130-148 doesn't make much sense either. Wenckebach setting means that when the atrial rates are between 130-148 (in your case), the pacemaker will go into a 2:1 block. At 130 bpm that means the ventricles will be paced at 65bpm only. But this only works when your husband has complete heart block at the same time. And why should it go into a 2:1 block up till 148bpm in the atria, but not when the atria are doing 180bpm or 200bpm???
My Wenckebach is programmed to be 180-214, and my upper atrial tracking rate is 240bpm.

Sorry, I'm sure this must be a bit confusing. When you see his doctor again, I'd first ask him why your husband now has the rate response switched on. And I'd ask how come that both the CLS sensor and the accelerometer seem to be activated when this is theoretically and practically impossible in this device.

Inga

Happy!

by Terrytica - 2014-04-25 10:04:43

Back from our appointment and I think I have my happy hubby back, at least he seems to be feeling better. His color is better too!
Thanks to all of you who helped us!!!
The echo showed his heart is working well for the most part so then we sat down to figure out the PM settings. I knew we had the right Dr when she listened to my concerns and actually agreed with us about raising the resting rate and lowering the threshold on the CLS to LOW, she also corrected his diagnosis and confirmed the PM doesnt use that info for pacing. She did call the Biotronik rep a couple times to clarify some things.
Yes, sensor gain settings are for the accelerometer only, right now they are only sensing not pacing on the current mode of DDD-CLS. At 160BPM the PM switches modes to DDDIR which turns off CLS and turns on the accelerometer. At that point, those settings become necessary.
We tried to set a lower night time rate but in DDD-CLS different night rates are not possible, and probably not necessary assuming the CLS is working.
I am so pleased with her willingness to explain everything and take our opinion into real consideration on the settings.
Will sleep much better tonight!
Thanks again all
Terry

Thank you, thank you!!

by Terrytica - 2014-04-25 10:04:45

Wow thanks Inga,
Everything you say makes sense, have been trying to learn all this but only got about halfway down the sheet. I have noted everything that you have told me and all the differences from the first PM (also Biotronik) to the second.
I have lots of questions for the Cardio Dr. She didnt make these settings, they were done in the VA hospital in the USA, so maybe she wont be too offended that I have so many questions and will insist a couple changes be made, especially where it concerns his base rate which is lower than his old PM and the accelerometer/CLS situation, personally from all I've read, I would want to switch off the accelerometer and lower the threshold on the CLS as you say, just makes more sense. He is no athlete, but he is not happy sitting all day and that is what he has been reduced to these last months.
I'm happy for her to do the echo, but I think the stress test watching the PM computer makes more sense, probably going to end up paying for both... ouch! If I can get my happy hubby back, it'll all be worth it!
Thanks again, wish us luck!
Terry

Manual found

by Terrytica - 2014-04-25 12:04:53

I found the manual TraceyE, thanks, pretty interesting. The book sounds great since it seems to be aimed at us instead of the Drs. The manual is pretty technical but it did have a list of some diagnosis and typical basic settings. Bracycardia is treated differently than syncope and not sure if how it's listed on the PM affects how it paces, but I suspect not from what I have been able to read so far.
Thanks everyone,
Good night

Rate response mode switch

by golden_snitch - 2014-04-26 01:04:07

You are very welcome, that's what this site is for! :-)

The mode switch from CLS to accelerometer is not of relevance as long as the upper sensor rate is programmed below the max CLS rate. Your husband will only have support of the rate response sensor up till 130bpm, and CLS can do that. If you'd set his upper rate at 180bpm, the mode switch would make sense. The CLS can only do a max. of 160, so if you want to get up to 180bpm with the help of a rate response sensor, you then need the accelerometer to kick in. But with an upper rate limit of 130, the accelerometer will never get a chance to kick in. If your husband's heart rate does go above the 130 with these settings, it will most likely be because his own rhythm has kicked in, and the pacemaker is just tracking/sensing that.

Inga

great news

by Tracey_E - 2014-04-26 01:04:19

You have a dr who not only listens but doesn't hesitate to make a phone call to learn more, that's truly wonderful news! Now it's just a matter of working out the details. So glad to hear he is already feeling better.

Great news!

by golden_snitch - 2014-04-26 02:04:57

Glad to hear that your appointment went so well :-) Hope your husband will continue to do better, and will be able to resume all of his activities.

So, what's your husband's new upper (sensor) rate now? I'm at 140, so no switch needed since the CLS can do up to 160. But it's interesting to hear that the pacer can switch to accelerometer when the max. CLS rate is reached. Never read that anywhere, not even in the manual. I guess I won't need it, though, because a max. of 160 should be fine for the activities I do. Yeah, the night rates are not possible with CLS, only with accelerometer, but so far I'm doing well with that (three months since I had this pacer put in).

Inga

Settings

by Terrytica - 2014-04-26 09:04:45

Honestly I downloaded that manual and read as much as I could, I didnt see it either, but according to the rep (they call them engineers here) it's in the mode switching settings, I dont think it really has anything to do with the CLS settings, just when a certain heart rate is reached it changes from the mode it's in to the mode switching settings, his is set to go to DDDIR (I think). Our Dr didnt do the original settings, that was done by the Biotronik rep in the USA, so she was almost as confused as I was about why some of the settings. She said she might have to hire me to research the setting on her other patients (she was kidding of course, when we moved here 13 years ago, she had the ONLY Biotronik interrogator in the entire country, so she has been with them a long time)
I was so exhausted last night I didn't even look at the printout, I was sitting next to her when she made the adjustments though and I dont think the upper rate was changed, so it is probably still set at 130. I assume we will know if it hits that 130 too often we will need to change it. We only raised his resting rate by 5 beats to 65 but lowered the CLS to LOW, hoping that would take up the slack, for now. She only charged us for the echo, not the adjustments and said we can come in and make any other needed changes later, she wont charge us.
I'll check his strip when I get off work, but there is a dramatic change, so I am so grateful for you and this site and a Dr who doesn't think she's God and wants to help.
With gratitude,
Terry

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