Can the amount of pacing change?

Hi, me again. I know... sigh. 

So I've been trucking along, doing my thing, trying not to fret about everything and failing occassionally... I think Gotrythym posted recently that the mental recovery is longer than the physical and boy is that true!

So 2 days ago, I had my 3 month checkup at 4 months :-) anyhoo... doc commented that I've had some 150bpm episodes, and I explained I returned to the gym, but a few of the episodes I wasn't at the gym and turned out it was very stressful times at work and home. He says not to worry. As he's telling me, I jumped from a nice calm 75bpm to over a 100... and he's like "you need to relax" and went on to tell me that everything is excellent and fine and text book etc etc etc. And then I said something about how I'm very anxious about relying on my magic metal pebble for life and he said "Uh no... you're using it 2-3% of the time" and I said "That's not possible, I was told I was being paced 100%" and he shows me... by turning it off... "Nope. Look.... that's your own natural heart beat" and I stared at the screen... and then he said "watch, I'll turn it back on" and he did... and nothing changed. And then he said "Now I'll force it to pace you" and he did, and I felt a little flutter and saw the pink dots before each beat... and then he set it back to normal. Just green for my own heart doing the work. 

I'm bamboozled. How can it be? I am completely positive that I was told that I need to be paced 100%. I remember that dread and worry of "oh, crap. So if this fails... I'm a goner".

I mean, I get that it's great and he did spend some more time talking with me to reassure me that everything is good ... but I also thought I read here that you can't go back from being 100% paced. 

I don't doubt what he told me, but thought I'd share and see what others experiences are. 

... it was eye opening to see how much I do respond physically to stress. Eeesh. I need an easier life... ♡♡ lol ♡♡


7 Comments

Sure

by AgentX86 - 2023-07-06 00:36:19

You're not dependent, so don't worry at all about it going "poof".  It won't and you won't much care if it did.

The paceing percentage can be drastically changed just by setting the minimum pacing rate.  Think of it this way, if your pacemaker is set to 60bpm and your heart is beating at 61bpm, your pacing percentage will be zero.  OTOH, if your heart is naturally beating at 59bpm, your pacing percentage will go to 100%. The difference isn't that cut an dried because there is some natural variation in the heart's natural resting rate but the idea holds. 

You're obviously not dependent on your PM so relax.  If it went *poof* (it won't), your natural pacer would take over until it could be replaced.

Stress reduction

by Ahilltopper - 2023-07-06 00:48:51

It sounds like you have a very good EP who communicates well. Don't focus on your recall of the initial diagnosis, but on the present and future. 
I wasn't happy to learn I need a PM, but there is no question it has made my life much better. I'm paced about 4% of beats overall, it fixed my intermittent heart block. A very effective treatment-- the mental adjustment takes longer.
Consider learning stress and anxiety reduction techniques. It has to be a daily routine. Talk to your health insurer and/or GP to find out about classes and options. 
Although I didn't start with them until I was over 55, I've found practicing yoga and tai chi in classes with an instructor to be very beneficial for stress coping/reduction. I got to a point where I do them on my own, with help from instructors on Youtube.
For me, at age 67 continuing to do and all of the active sports I love (bicycling, tennis, Nordic and downhill skiing, jogging, hiking, pickleball, kayaking, etc) without fear of dizziness and fainting is priceless. 
find what works for you.

pacing %

by Penguin - 2023-07-06 04:28:11

Hi Echoplex, 

I was just reading your bio - h/rate of 40bpm (in hospital?), progressed to flat lining, emergency PM fitted. Sounds traumatic! No wonder you've been stressed. Perhaps you need to process what happened by talking it through some more with someone?

You don't say how long you had a h/rate of 40 bpm for prior to this admission. Do you know?

2-3% v.pacing clearly isn't a high % but 2-3% VP still represents many thousands of paced beats and the pacing is being caused by something. Did your EP explain what?  If not you could ask your EP to explain the kind of episodes which make up the %. This will help you gain a better idea of what's going on as you must feel a bit confused by all of this.

AgentX's excellent illustration of how programming and activity levels affect the % of pacing should help you understand why pacing %s vary. Night time pacing is a classic example e.g. if pre-pacing you had a normal h/rate at night (no symptoms) of 50-55 bpm and your pacemaker was then implanted and programmed to 60 bpm, you would receive (technically unnecessary) pacing at night and this would increase your overall pacing%. 

Programming matters!!

 

 

What they said

by Good Dog - 2023-07-06 08:03:03

I agree with the previous posts. It seems likely you were in complete heart block when you received the PM. That does not mean that you "flat-lined". You have an intrinsic heart beat called an escape rhythm. When I went into complete heart block my escape rhythm kept me alive. Albeit with a heart rate bouncing from 12 bpm to 35 bpm. That is far from flat-lining. After getting my PM I was out playing basketball with a HR over 150 bpm. Actually, it was so high I could not keep a count. Obviously my heart was working on its own without the use of the PM. So here is the thing; As Agentx86 said; the amount you are paced is determined by the minimum setting. As you get older and have been paced a long time the amount you are paced might increase. It likely will. However, it seems very clear that your heart is working very well now. My situation was exactly the same as yours. I did not hardly even use my PM and when I did, it was only on the low-end. Our rates will drop when sleeping or sedentary and that is likely when your pacer is doing the most work. It keeps you from going into heart block by pacing you at or above the lower limit. Frankly, it sounds like your heart is in great shape. Just a simple electrical problem.

You have absolutely nothing to worry about. Zero! You just gotta chill! Also, your Doctor is an absolute keeper! Any doc that would spend the time and effort to demonstrate what he did for you is one you should be grateful to have. So here is a good plan going forward: Work on getting and keeping your mind off of your PM and whether or not you are being paced. Just go out and live your life and try to enjoy it. Your PM will take care of itself. Oh, and keep your Doc for the times when you really need him! I am wishing only the very best for you!

Sincerely,

Dave

How much pacing do you need?

by Gotrhythm - 2023-07-06 14:05:43

One of the things you find out if you ask enough questions along this pacemaker adventure is that although everything you've learned is true, there's always more to it.

Percentage paced is a case in point. The numbers look so official but they are no where near as absolute as they seem to be.  For several years I have been pacemaker dependent, my percentage paced at 99+%, meaning essentially no activity from the sinus node. Then after a recent adjustment, the tech gave a little hmmpf of surprise, and said, "I'm seeing activity in the atrium." Sure enough, a later interrogation confirms it. I'm now 88% paced.

Who knew that could happen? And, more importantly, what does it mean?

It means the same thing that it does for you. You needed a pacemaker before and you need it now. It really doesn't matter if you only need it for fifteen minutes once a week, or if you need it every minute of every day. The pacemaker's job is exactly the same. And how you feel is the same.

What matters about percentage paced is are you being paced often enough to feel your best?

 

Yes. I’ve seen it happen.

by PacedNRunning - 2023-07-09 02:52:00

I've seen people pace 100% and drop low. Sometimes blocK can be transient. See how you do over a year. I'm glad you expressed to your doctor your concerns so he can go over it with you to understand. I wish I would pace 2-3% I'd be super happy. You definitely still need the PM, just need a little boost here and there. 

Many thanks, again!!

by Echoplex - 2023-07-12 15:05:06

Hi, and thanks again!!! happily, we've been away tent camping for the weekend - and survived!
I managed to read all the replies before we left, and I have been feeling better mentally, I definitely have less anxiety. 
And I do feel good, and I was glad my teen came to that appointment as it gave her a lot of reassurances too, and in turn, she broke it down for my 8 yr son :D 
So we're all winners in the end :D hahaha. 

 

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