2 hours worth of continuous PVCs

Hi everyone. Haven't posted for many years. So I got my new box change in May without any issues. I then went to get it checked 6 weeks later and they turned on auto threshold test. Since this moment I have been having episodes of continuous PVCs and during the time of them it feels just like I'm hooked up to the PM machines when being tested. I'm very sensitive to everything when I'm having my PM tested I hate it so much makes me feel sick and breathless and dizzy. This is how I feel during these 2 hour long episodes of PVCs. So i was only experiencing them every ten days or so now it's every other day always when I get into bed. Although once at 9pm sat on sofa watching tele. All times last between 1-2hrs.  First time it happened was so close to calling ambulance. I can't move around during these episodes as I don't feel I can. Feel faint. Pacemaker clinic are adamant it's nothing they have done. I have a latitude tester at home and I press the button when it happens and call them the next day. They say oh yes can see ectopic beats but not to worry. And that's that! Has anyone else experienced this please. It's driving me mad and I'm scared every night waiting for it to happen 😞


8 Comments

"auto threshold test".

by USMC-Pacer - 2023-08-25 12:48:58

I'm not sure what "auto threshold test".is, but if it started when they turned it on, I would ask them to turn it off and see if that fixes it. Or, at least find out why they turned it on if it has been off previously. It's tough not knowing what your condition is.

I would start with your EP.

PVC episodes

by susiebear - 2023-08-25 12:54:58

Thanks for your reply. I have asked them to turn it off but they are so adamant it's not that causing it they don't want to. They said it saves a lot of battery if the auto threshold test is on. It's made changes for sure as I have an Apple Watch that does ecgs and my Apple Watch no longer recognises the beats as they show completely different now they show as pacing and never used to. So I know it's certainly changed things for me. I have a Boston scientific dual lead PM for total heart Block due to open heart surgery repairing an anurysm rupture. 

Trial Turn Off

by Penguin - 2023-08-25 14:04:06

It's tricky when changes are made to settings. 

I don't know whether or not this Medtronic battery saving setting is causing your discomfort or not I'm afraid, but if you've had a pacemaker for many years you know when something feels wrong. 

Couple of suggestions / questions: 

You could ask them to turn off the new setting on a trial basis to see whether these intolerable symptoms improve . That's one way to get around the stalemate.

You could show them your Apple watch ECGs (before and after the setting change) and discuss these with them. 

I'd also ask for a copy of the interrogation performed in clinic and take a close look at it for any other changes. 

 

Auto threshold

by AgentX86 - 2023-08-25 15:44:04

This is the test that were hear people bitching about here.  It's the test that runs once a day (it can three times a day on some models, at least) and is usually set to run while you're sleeping.

What it's doing is lowering the pacing voltage until the heart doesn't capture (fails to pace) then raises the voltage back up so there is a decent "capture margin". If this test is disabled, they have to increase the capture margin to cover any changes in the "capture voltage" (where capture just barely occurs).

This increase in voltage needed for the larger margin,  requires more energy out of the battery so it's life is shortened.

That siad, I doubt that this test is casing your PVCs, particularly if they don't occur at the same time this test is performed.  It doesn't really matter what I think.  It's your body.  Insist that they disable this test long enough to see if it is causing your PVCs.

I have several periods, some more than an hour, each day with PVCs. They sure suck but your symptom are even worse than mine.  I feel like someone stole a breath every time one occurs.  Usually they're only every 10th or 20th beat.  If it gets down\ tp every four or five, I start getting short of  breath.  My cardiologist helped, some, by prescibing another 25mg of metoprolol (2x25mg -> 3x25mg). It's not perfect but they bother me a little less.

I checked my device

by USMC-Pacer - 2023-08-25 21:06:00

I looked up some documentation of my Medtronic device and I can't find anything about it. Every night (or morning) right at 1:00am I feel something. It feels like some fluttering for between 1 and 5 minutes. But it's nothing like what you describe. I'm usually watching TV so I notice it. If I was sleeping (like I should be), or doing something, I don't think I'd notice it. Like others here have said, I'd ask them to turn it off and see if symptoms improve. If they don't, maybe a beta-blocker is in order. Sorry I can't be more helpful :)

Thanks for replies

by susiebear - 2023-08-27 10:07:31

Thank you all so much for replies. Very informative description of this recent change by agentx thank you. I'm wondering has the pvcs always been there it's just now I feel them very much and are stronger now. Last night I tried to do a few exercises as I don't have my rate response turned on like you do marybird and that did help I had a normal ecg following them. Straight back to bed to try and sleep and slowly they come back. Didn't manage to fall asleep until 9am this morning so only had 2 hours sleep. Lack of sleep makes pvcs worse so it's like a vicious circle. 
going to request on Tuesday if I can temporarily turn it off. Do you all think I can be insistent of this? Can it be my choice? As I think they will say no and I don't know if I'm able to push for it. 
thanks everyone x 

Auto threshold test

by Gotrhythm - 2023-08-28 13:33:05

This is a quality of life issue.

No matter how sure they are that the test isn't causing the PVCs, if the problem on appeared with the auto threshold test, have them turn it off.

Who cares is they don't want to because it saves the battery? The reason for getting a pacemaker is quality of your life, not battery life!

When it comes to quality of life, the quality of our lives, we are the only ones who can say what matters most.

If it turns out that turning off the threshold test doesn't change the PVCs, they can turn it back on.

Certainly we should always be polite and respectful of those who work to keep our devices going. We should do all we can to be easy and pleasant to work with. That said, we should also remember that our needs are the reasons they have a job. Asking them to turn something off just to make sure it isn't the problem isn't unreasonable.

I'm sure the techs you are working with are excellant and know their stuff. But if I had a nickel--okay 100 buck for every time I have been told that this or that setting made something "impossible"... Who knows what weird circuit your heart has that reacts like no other heart ever did?

Advocate for yourself!

 

Thanks

by susiebear - 2023-08-28 13:59:03

I'll do just that! 
Will let you all know the outcome. 
thanks again 

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