Setting Changes?

Hi everyone! I'm hoping you will all be able to give me some insights into the world of 'setting changes'!

I had a dual chamber st judes PM implanted exactly 3 weeks ago for complete congenital AV heart block, which was identified before I was born. My sinus node works and is dictating the pace rate and I have a min of 50 and a max of 160. I'm 28 and have gone my whole life with no symptoms or heart problems. I got the PM just as a 'precaution'.

Since I got the PM, I've been experiencing what I think are palpitations - certain activities make my heart-rate jump very rapidly and it feels like it suddenly starts pounding very very hard and fast. It makes me feel short of breath (kind of like I've been winded) and a bit dizzy and faint. At first, I just thought I was weak and still healing, but now, I'm back to my normal routines and it's still happening. I've narrowed it down to happening when I do two types of activity: When I get out of bed in the night to go to the bathroom and when I shower. I was also having trouble with stairs, but that seems to be getting better now.

I called my drs office and the NP who has been doing my pacemaker testing said that I should come back in on Tuesday as they may need to 'tweak' the settings. Since I got it, my PM has been interrogated about 4 times (2 in hospital 2 after) and on all occasions they said 'everything is working perfectly'.

My question is - what kind of setting will they be tweaking? My sinus node works perfectly and dictates the heart rate, and the only other settings I know about are the min and max settings, so I am confused about what they could potentially be changing. Is there anything specific I should listen out for or ask during my appointment? I want to be as informed as possible!

Thanks so much in advance - this community truly is wonderful!

4 Comments

Probably rate response

by golden_snitch - 2013-10-23 04:10:24

Hi!

Sounds a bit like the rate response is switched on. It shouldn't be since, as you said, the sinus node is dictating the pace. Do you know what mode your pacer is programmed in, is there an "R" at the end (DDDR, for instance)? Apart from the rate response, I have no idea what could be causing these palpitations.

May I ask: Why are you having so many pacemaker checks within just three weeks? That's not necessary. For things like the threshold and amplitude you need to wait several weeks, up to 3 months, until you can optimize it. At first it's important to give everything some time to heal and the body time to adjust. Doesn't make much sense to keep tweaking settings within the first 3 weeks after the implant. My two cents worth based on my experience.

Good luck!

Inga

mode and tests...

by lucyb - 2013-10-23 05:10:19

Thanks for the feedback Golden Snitch! I have no idea what mode my pacer is programmed in... how would I find that out? I can't see anything about mode on my ID card, so I'm guessing I might need to ask when I go in for the check next week?

Four tests in 3 weeks does seem excessive, but it was largely circumstantial: The first two times my PM was tested was in hospital before they discharged me. They did the standard pre-discharge testing but then about half an hour later, they came back and said "actually we thought about it, and you're quite young and active so we want to increase your max" so they ran the interrogation again and increased my max up to 160 (can't remember what my max was before that, I was so zonked out on pain meds!). Then, the night after I was discharged, I vomited and fainted when getting up to go to the bathroom and awoke with really load, blasting white noise in my ears (that was the only time I have actually fainted completely since getting the PM)... My husband was pretty worried about the incident (as was I!) so he called the number we were given and they asked for me to come back in to the hospital again so that they could test and make sure everything was ok. I went back to the hospital the next morning and they did the interrogation again. All was fine and they gave me stronger pain meds, which helped a lot. Then the 4th interrogation was done during my standard 2-week checkup at the specialists office, they didn't change any settings, just made sure it was all working fine. The only time they've actually altered my settings so far was when they increased my max just before I left the hospital.

PM Mode Check

by SMITTY - 2013-10-23 06:10:42

Hello Lucyb,

My guess from your description of what is happening to you is the rate response is activated in your PM. Since that feature is an option for some of us you might ask your dr about yours.

In the meantime I have used this trick to check out my rate response. I should add here this doesn't work for all of us, but it doesn't hurt to try.

Determine your resting heart rate after a10 to 15 min rest, and then "tap" (firmly but not hard enough to uncomfortable) on your chest at the bottom of your ribs on the left side for 20 to 30 seconds and then check your heart rate. If the rate response is on you will get a higher heart rate.

Good luck,

Smitty

checking..

by lucyb - 2013-10-25 09:10:26

Thanks Smitty! That's a really nifty little trick! I did try it, and my heartrate went up, but only by 10, when the usual increase is about 50bmn, but who knows, I maybe I wasn't doing it quite right ;)

You know you're wired when...

You trust technology more than your heart.

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