More Frustration With Settings

So, after a month of tachycardia issues assisted by my overly sensitive settings on my Pacer, I had the Tech do ANOTHER adjustment on Friday afternoon. The new setting apparently shut off the standard sensitivity levels and changed to the Closed Loop Setting. Now, things should go from the Pacer shooting my HR to 120 from the simple task of taking a walk due to the vibration it feels through my body, back to normal, right? 

Friday night, everything seemed great! Saturday morning, everything seemed great! Saturday afternoon and this morning... Not so much. Yes, it's stopped shooting up from vibration. But now, most of the time when I stand up from sitting I get a rush of blood to the head and get a little light headed. Once I get moving things level out and get normal, for a bit. After about 20 seconds I feel the Pacer kick in again and I'm at 120. It's not from the vibration now, it appears to be more from sudden blood flow as it happens when I bend over to grab the dogs bowls to feed and water, etc. Seriously?

My frustration is beyond words. Three months ago (Pre-Pacer), I was normal with no issues other than a slow resting HR and a slower elevating HR when exercising. Now I can't walk, run, play with my dog or apparently bend over to pick up a penny without my HR going haywire. I understand the need for my Pacer due to my Bradycardia and went into this with full confidence that I would live a normal life with it after talks with the medical staff. But I'm starting to wonder if any of these people (Cardiologist, PA, Pacer techs and Biotronic reps) have a clue? And one of the issues is where they have the recording set and refuse to adjust. They have my monitor set to record events above 160 (Along with multiple PVC's, A-Fib, etc). I never get to that high of a HR though. How can they know or even attempt to understand what, when or why it's happening when they rely solely on my word or interpretation of the events?

Anyway, thanks again for giving me a venue to vent. Hopefully someone has had similar experience and has suggestions or solutions...

7 Comments

You need more adjustments

by IAN MC - 2017-04-02 15:41:59

You say that you had two problems ;-

-  slow resting heart-rate . The pacemaker will certainly take care of that, that is the easy part !

- Slower elevating HR when exercising. This seeems to be the part which is causing all the problems i.e. the Biotronic rate response settings are not yet right for you.

It seems to me that you need yet more adjustments to these settings. I believe that  your Biotronic has a CLS sensor and some sort of accelerometer sensor. From what I have read  some patients have enormous problems with the CLS sensor and suffer bouts of tachycardia every time their body position changes.This is exactly what seems to be happening to you , so If I were you I would contact Biotronic to see if they have an expert who can solve this problem.

Also it sounds as though the accelerator part was set to be too sensitive . Again " trial-and-error" should eventually get a combination of sensor settings which are right for you.

I would be amazed if this is as good as it gets so persevere and shout from the rooftops that the settings still aren't right.

Best of luck 

Ian

 

 

Ian

by CrockerNut - 2017-04-02 16:29:24

Ian, 

The way they made it sound, they shut down the "accelerator" due to the sensitivity and switched to the closed loop setting. It was the Biotronic Tech that did this. I think part of the problem is that the Biotronic rep has done a couple of adjustments and the Cardio staff has done the others. I did ask the Biotronic guy if they keep track of changes made so we don't go back to a previous setting and he said, no... That seems odd to me. Anyway, I'm not letting it rest and will get answers. Thanks for the reply.

Robin

by CrockerNut - 2017-04-02 16:30:35

Thanks Robin.

We're pretty limited in our small town, but I'm going to be pushing for time with the Cardiologist rather than his staff. As far as living with it... Not happening. In this day and age they should be able to get it right, as they said before cutting me open. I'm just not willing to give ten years to a wait and see approach. I'm in my mid-40's, work a physical job and live a physical life away from work. This irritation for the last 30 days is affecting every aspect of my life. It didn't do it (tachycardia) prior, and after switching to the closed loop should have stopped according to the Tech (Of course all three adjustments were supposed to work over the last 30 days). But the tachycardia persists, only under different circumstances the last two days. The professionals should be able to narrow it down if they'll just do some investigating and research. It's their job. The only benefit of doubt I'm attempting to give is the "body adjusting" angle. But why did it take 60 days to start, and why does it persist with Pacer adjustments only changing due to cause/condition?

CLS

by Tracey_E - 2017-04-02 17:56:49

CLS is totally different from the rate responses that work on motion only. Most of the advice we've given you was assuming motion, sorry about that. CLS has a learning curve. I don't understand it well, but I believe new settings don't work as intended immediately because CLS learns you so it takes some time to adjust. You really need someone who is an expert at this doing your programming. That might mean travel, but it would be well worth it if it means you feel good. 

Read these and other posts by Inga (golden_snitch). She is a patient  but also a runner and understands this stuff better than a lot of professionals.

https://www.pacemakerclub.com/message/10751

https://www.pacemakerclub.com/message/10759

 

Tracey

by CrockerNut - 2017-04-02 18:44:33

Thanks Tracey,

I will look into this. I wish the techs would explain this as it would make things so much easier instead of me constantly wondering and buggin them about it. I appreciate this site so much for all of the information that it and the people here provide, but we shouldn't HAVE to rely on sources other than the "professionals". I say this a bit tongue in cheek, as I'm a caregiver at the hospital that I'm being so hard on... 

I don't know the answer but ....

by LondonAndy - 2017-04-02 19:12:53

... you certainly shouldn't have to put up with what you are currently experiencing.  The light-headedness is probably low blood pressure, and I DO get that as I go from lying in bed to sitting up, but only for a couple of seconds and I sit briefly before actually getting up.  But shooting up to 120 bpm shouldn't be happening, and am sure a setting or reprogramming can address this.  As others have said, in the early stages it is a bit of trial and errror to get right - keep at it!

My first day on this site

by Rocketrus - 2017-04-11 19:23:19

8 months with my new pacemaker and like you . They have failed to make the proper adjustments.

You know you're wired when...

Your pacemaker receives radio frequencies.

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