Anyone else with jumping/dropping pulse?

(Background info: I had a dual-chamber pacer placed two weeks ago for Cardiac Sarcoidosis. The Sarcoidosis was causing a heart block that caused my heart to skip beats, pause for 5-6 seconds at a time, and beat in the lower 40 bpm-range for several days. The pacer has kept my heart from dropping below 60 since it was implanted. I am a 26 year old male. In otherwise good health.)

Hello,

Today, I had to go to the ER because I felt my heart skipping beats again. Also, when I moved around I became very light-headed and my chest felt sore. It turns out that some settings on the Pacer had to be changed. The changes made were: the rate response was turned on, the amount of time the pacer is programed to wait between beats was reduced, and the pacer is now programmed to adjust this wait-time according to the heart rate.

The problem was that I would walk around and get my heart rate up, but the pacemaker wasn't adjusting to the smaller gaps between heart beats and when I did drop a beat the pacer missed it because it was still just waiting.

Anyways - my resting heart rate jumps around from normal-ish in the 70 and 80 bpm range, up to over 100 (or over 110) and then back again very, very quickly. Fast enough that if I have been moving around and raised my rate to a higher level, it can just suddenly drop to 60 or 70 for no reason and leave me very light-headed and fatigued.

The pacer has been adjusted now to notice when this is happening and let my heart rate down or up a little more slowly. That's my understanding of how it will work anyways. No more drops from 120 to 70 randomly. I'm calling my doctor for a follow up appointment regarding all of this.

I'm writing this post for two reasons. (1) I want to know if any one else out there has had similar symptoms like this and (2) if anyone else out there is having symptoms like this, hopefully the above information may be of some help.

Also, for any wondering - while the Sarcoidosis is still terrifying, the adjustments to the pacemaker have made me feel much, much better. At this point, anyways.

Thanks!

4 Comments

Similar symptoms

by annalan99 - 2014-01-05 06:01:56

Hi I'm not sure that we are in the same situation but I can say that you have to be really assertive about your settings and it will probably take time to get it right.im just in the early stages.

I was getting heart palpitations because I was set to pace at 80-90bpm but my natural resting heart rate was 40-45bpm meaning I was being shocked every minute and pacing 100% of the time. I got them to agree to drop the rate during the day plus i got the sleep mode put on between 10:30pm and 7am because there's really no need to be bumped up to 80-90bpm at night.these setting options might depend on which PM you have.i have a Medtronic PM.im getting a lot more sleep now and less nausea,lightheadedness, fatigue. I'm not completely happy but definitely feeling a bit better:)

@ don

by RaFarmerjr1 - 2014-01-05 09:01:13

Don,

First of all, thank you for the detailed and helpful response. As you guessed, a lot of this terminology is new to me. The Rate Response was definitely a large part of the issues I was having. I'm almost positive that you are correct in your assumption that I am talking about the AV timing. My understanding of what my pacemaker technician explained to me was that this interval setting was not configured properly to adjust to faster and slower heart rates. So, when the rate was up the interval was too long and it made me feel like I was skipping beats. I might be missing something here technically, but whatever they tweaked fixed the issue and I no longer have this big THUMPS in my chest. Quite concerning as you can imagine for a newbie.

I had read "Some tough love for newbies" about a day after I got my pacemaker. At your mention I went ahead and re-read it today. Its good to go back to that post sometimes. In a way I think it really sets the mood for this whole website. One reason I like this website so much is that the members don't really tolerate "pity parties". I'm over the whole "getting cut open" part and recognize that the pacemaker really isn't THAT big a deal in the grand scheme of my life. I might be dealing with some depression or Post traumatic stress though - especially over the sarcoidosis diagnosis, so I'll probably go talk to a counselor for a while. But this is more to do with the "chronic illness" aspect rather than the pacer itself.

Thanks again for all your help. I think this thread will probably be useful for visitors in the future, mostly because of your post.

Thanks,

- Robert

Some commentary on your condition

by donr - 2014-01-05 10:01:26

Farm Boy: Glad your trip to the ER was a success. Not always that way w/ PM's. You are a textbook case of the reason for a PM being developed.When I was your age - back in the 1960's, you'd have been a lost cause - but that is merely historical perspective. You have the latest technology in PM's from Medtronic. Enough bells & whistles to supply an entire railroad of steam & diesel Locomotives, plus a semi or two.
Congratulations.

I'm going to take this one paragraph of your OP at a time, so bear w/ me.

1) YOU:Today, I had to go to the ER because I felt my heart skipping beats again. Also, when I moved around I became very light-headed and my chest felt sore. It turns out that some settings on the Pacer had to be changed. The changes made were: the rate response was turned on, the amount of time the pacer is programed to wait between beats was reduced, and the pacer is now programmed to adjust this wait-time according to the heart rate.

ME: I think you realize that you have to get over the cutting part of the surgery, from what you have posted. Pls go to the SEARCH at the top right corner of this page; Search for "Some Tough Love for Newbies". It should come up as the second entry. Open it up - it's long; read it for some perspective on some of what is happening today, 2 weeks post-op.

W/ the original problems you had, you can expect it to take a while to thrash your way through getting things correct in Setting Land. The RR (Rate Response) sounds necessary for you. Good decision by whoever was in the ER to take care of you. I've had my PM over TEN yrs now & my Cardio just this past month made some adjustments to my RR.

BTW: The Medtronic has a good RR capability two response slopes & a whole lot of parameters that can be tweaked to help you.

You have me w/ the phrase "...the amount of time the pacer is programed to wait between beats..." is not clear to me. But you are new & do not yet recognize the jargon. There are two times the PM has in its program - the time between beats called the A-A interval by most - that is the time between Atrial contractions which start each beat. AND the AV interval - the time between the Atrial contraction & the Ventricular contraction. I THINK you are talking here about the AV interval because you have Ventricular block. Again, from your description, sounds like the CAPTURE voltage for your Ventricles is not set sensitive enough. General rule: the PM will NOT let your heart go w/o a beat IF the PM is functioning correctly. As long as the programmed AV Delay is LONGER then your intrinsic delay, the PM WILL fill in for your heart if a Ventricular contraction is missing. NOw that programmed AV delat must be neither too short nor too LONG for everything to function correctly - but the capture sensitivity must also be correct. Sounds to me like it is not.

2) YOU: "The problem was that I would walk around and get my heart rate up, but the pacemaker wasn't adjusting to the smaller gaps between heart beats and when I did drop a beat the pacer missed it because it was still just waiting."

ME: Another reason I think the capture sensitivity is off. PM's just do not let you go by w/o a beat. If the programmed AV delay is too short, it will put in a beat before the heart's intrinsic beat would come. If it is too long, it puts out the signal for a contraction, but the heart does not capture it & contract on PM command.

3) YOU: "Anyways - my resting heart rate jumps around from normal-ish in the 70 and 80 bpm range, up to over 100 (or over 110) and then back again very, very quickly. Fast enough that if I have been moving around and raised my rate to a higher level, it can just suddenly drop to 60 or 70 for no reason and leave me very light-headed and fatigued.

The pacer has been adjusted now to notice when this is happening and let my heart rate down or up a little more slowly. That's my understanding of how it will work anyways. No more drops from 120 to 70 randomly. I'm calling my doctor for a follow up appointment regarding all of this."

ME: This all is RR stuff. Sounds like you are on the right track. Lots of parameters to adjust here - be patient as the cardio gropes his way through sorting this one out.

I'm going to quote Napoleon Bonaparte here. "What?" you ask - "Does HE know about cardiology?" Read on - read on. In about 1806, he said "In battle, the mental is to the physical as three is to one." That is also true in things cardiac, also, when talking about the patient. Attitude is now most of the battle - yours is great - just keep truckin' despite any setbacks you may experience.

Have a good year.

Don

Robert: You have obviously read...

by donr - 2014-01-06 10:01:52

...Angry Sparrow on Pity Parties!

Glad I helped you over a rough spot.

I'm still inclined to believe your Dr. who did the tweaking mucked around w/ the capture sensitivity.

Unless it is a true exception, PM's are so reliable that they will not miss an anomaly in your HR that they are programmed to catch. Anyway, it does not matter - you will learn all about the guts of your PM as time goes by & you learn the language - I think we all speak Klingon when we talk PM's.

The important thing is that you now feel more comfortable.

One of the problems w/ PM troubleshooting is that the patient & Dr. speak two different languages. Especially when the Host is a Newbie. The host tries to describe a symptom he/she feels & comes up short for words to accurately describe them. Some descriptions give the Dr a clue - like "I feel like I'm skipping a beat." That is exactly what a PVC feels like. But when the Host describes it as their heart "Flip-flopping," that's a different story.

In retrospect, after reading your description above, I can see where it could be a matter of the AV delay being too long. IF you were having a complete AV block, the heart would not start another beat because of the way it performs its timing & triggering of events. In that case, the ventricular contraction would come way too late, giving you the feeling of a skipped beat. He shortened the AV Delay & made it adaptive to rate. BTW: that can really make you feel crappy.

If you can focus on the Sarcoidosis as the cause of your psychological issues, you are ahead of the game - at least you are focusing on the CAUSE, rather than the effect! Sort of like a cancer survivor.

God luck when you see/talk to your Cardio this week.

Don

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