Rate Response

Not enough information

by crustyg - 2021-06-04 13:27:31

Hi: Please update your profile to help us help you.  Make + model of your PM, not serial number(s) of anything.

RR: yes, it needs to be 'tuned' for every patient.  Some want very rapid response (I'm told that the Dancers want nearly instant response), others want something more gradual.  We all have different requirements and reasons for not wanting to be overdriven.  It's never going to be as good as the natural SA-node which has a nerve supply and responds to circulating fight-or-flight hormones, but properly tuned RR is a lot better than nothing.

My PM would be utterly useless without it, so I expended a lot of charm getting it adjusted for my requirements.

Rate Response

by AgentX86 - 2021-06-04 14:58:25

Like Crusty said, it sounds as if the sensitivity og your RR is set way too high, for you. It may not be enough for others.   It does take some work to get it right and the device clinic should work with you to make it so.  It's a quality of life thing, which is its whole purpose. 

I've found that I don't have to "charm" anyone (or perhaps I'm just naturally such a charming person ;-) to tweak the rate response, though they won't do too much at once. Makes sense, actually.  I do have to lay it on to get anything major changed, like min/max.  Once they wouldn't budge but did give the option of the night setting.  I didn't even know it existed so agreed.  Worked fine and I had no more problems.

Tell your EP and tech

by ROBO Pop - 2021-06-04 19:58:25

Tell your EP and techician the problems you are experiencing and discuss options.. if none ask why not. Often they don't bother to convey why they set your parameters as they do which may be valid, because they underestimate us. Try working with them. My rate response was shut off because it kept triggering pacemaker mediated tachycardia (PMT)

Tech's comments

by Theresa52 - 2021-06-05 05:04:56

It is interesting to read your replies - thank you all, because I have been told by the device technicians that my heart is too sensitive and will overreact to any settings.  They fiddled for ages with the settings, then I had to bend down and touch the floor - immediately it shot up to 160+.  They were at a total loss as to any further adjustments.

They also told me that if the rate response was switched on, the sensor for the device only picks up signals from my left arm movement, (hence it soars when I bend down to touch the floor)  and that it would not react at all if I were cycling for instance, as it does not recognise leg movements.  This all seems utterly ridiculous to me, but this is what they said.

I see from Pandora’s Box thread you have (had?) a St Jude’s dual lead PM

by Gemita - 2021-06-05 05:51:39

Hello Theresa,

Is your upgraded CRT-D pacemaker also a St Jude's like your previous dual chamber PM?  Do you still have a working right atrium to right ventricle lead or was it capped and switched off since I see you have had an AV node ablation?  I presume the AV node ablation was final and effective since they can rarely fail.

It sounds to me as though you have been struggling with your symptoms for too long without resolve and this is not acceptable.  In your shoes I would be inclined to seek another opinion and to find out just what is set up in your pacemaker, whether all three leads are functioning, what works for you and what clearly doesn't.  A good pacemaker technician with the help of adequate testing (perhaps a treadmill test) should be able to help to improve your quality of life.  I think you have been so patient but enough is enough

Rate Response settings

by Theknotguy - 2021-06-05 08:10:25

Theresa52

Reading through your notes and comments makes me glad I have the cardiologist and EP I have.  At the very least they listen to me.  And my local techs for my pacemaker don't make any unusual comments.  I feel very lucky in that sense.  

My story....  I volunteered at the hospital where I got my pacemaker.  Back hallway is 954 feet long.  (One of the maintenance guys measured it.)  Would have to walk the hallway on the way out.  Always ran out of air at the 900 foot mark.  I could almost pinpoint the tile in the ceiling where I'd just simply run out of air and have to stop walking.  I go to my EP.  He does some tests, including the treadmill test, then sends me to my cardiologist.  We get ready to do a TEE and the cardiologist has an ultrasound tech come in and do her stuff.  He's telling her to look here, look there, go back to here, etc.  Finally says, "It's the pacemaker!", and cancels the TEE.   

I have a Medtronic pacemaker.  They call in a manufacturer's rep for Medtronic.  Do the hockey puck over the pacemaker and he's pulling up screens I've never seen in five years.  He asks when I had the episodes.  Since my hours were documented I knew almost to the exact minute when I had my problems.  He was able to locate the time and see what the pacemaker recorded.

Then we get into a strange conversation where I can only understand about one word in five.  Something about changing  settings....  Would I want to do that??  Sure! Is my answer and he says, "Good, because I already did that!"  I've felt much better since.  

It all boiled down to changing rate response.  Supposedly there are about four settings available to the techs in the EP's office but there are additional settings available to mfgr's reps. My local tech had made some rate response changes but didn't have access to the settings the mfgr's rep did.   With the rep's suggestions and the EP's blessing those additional settings can be changed to better suit the patient.  That's what they did for me.  

My suggestion is for you to run what happened to me past your cardiologist/EP and see if they'll buy into doing what was done for me.  Maybe, maybe not.  But it's a question to ask.  Unfortunately a lot of doctors get into the "Same old disease, same old treatment." rut and the patient suffers accordingly.  Hopefully there's still some curiosity left on their part and they're willing to take a second or third look to help you feel better.  

My best wishes for you and I hope something I've said helps.  
 

Ask if it’s pmt

by PacedNRunning - 2021-06-06 04:20:27

PMT. ask if bending over causes PMT. this could be the issue and easily fixable. 

Thanks to all

by Theresa52 - 2021-06-06 07:26:19

Thanks for your comments.  Will ask about PMT, but as my AV node is ablated it may not be that.  Hopefully will be able to get some answers from EP when I have a review.