Too slow

Hi all!

Going on 4 years now with a PM

When my pacemaker (AV block III) was put in, they were going to set the low frequency at 70, high at 130.

I admit that I didn't fully understand, and I thought such a high "low" would make for sleep problems. So I had them set it at 50 -- 130.

Starting about 2 1/2 years ago I started having extreme fatigue, especially after an adreliline flow (good or bad). I would feel this way for hours (a feeling of getting up too quickly, but the feeling staying around. I would have it checked, and things would seem relatively normal.

Until this past weekend. It occured to me to see exactly what the pulse (not BP) was doing during the episodes. Sure enough -- everything was happening with pulse under 70. Averaging around 54. (Like most -- or even all of you -- I of course heard endless repeats of "it has nothing to do with your PM")

So does anyone have such a thing, or know about it? I mean, it is weird that it is suddenly (almost precisely) half of normal (around 105-115). In fact, just 10 minutes ago it started: it went from 121 to 60 almost instantly. I understand that it could be y faulty Pulse meter. But I have used 3 different ones! Can the pulse itself only register every other beat?

 

Thanks for any input!!

12 Comments

drops

by Tracey_E - 2019-04-12 09:52:20

Best way to count is manually. If your rate is truly dropping in half, you will feel it.

What were you doing when it suddenly dropped? If you were working out and hit your upper limit, it could have triggered a safety feature for afib. If you go too fast and the pacer thinks we're in afib, it can suddenly start pacing 2:1 instead of every beat, so our rate plummets. Great if we were racing due to afib, not so great if we are at the gym! If you don't have a history of afib, they can turn it off. If you have new afib and that's what's causing it, it needs to be treated.

It's also possible to have sudden drops just because our hearts have wonky electrical systems. If that's what's going on,it can be fixed with programming.

In theory, if all we have is av block, then our sinus rate is normal. That means our heart is setting the pace, all the pacer is doing is completing the broken circuit and keeping the ventricles in sync with the atria. That means the lower limit is more or less irrelevant because that's not how we pace. Lower limit is atrial lead, which with av block we don't usually need. Upper limit is the important one for av block, that's how high the ventricular lead can pace. But it's also common to have more than one thing going on so it's possible you'd feel different depending on your lower limit.

😀

by AVJim - 2019-04-12 10:00:47

Wow Tracy.

Such a great answer. I am waiting for my technician as we speak! I would live to go in armed and prepared against " it isn't your PM".

I guess the main question is if I would have such a dramatic feeling like this with a pulse between 50 and 70. That certainly isn't that low for a normal person! But my resting pulse is between 90 and 115...

Yep

by AVJim - 2019-04-12 10:42:07

Everyone listen to Tracy!!!

It was just as she said. Actually, EXACTLY as she said!

So we will moniter it. The sinus is at 120. She said it sometimes just snaps back. If not, she will give an electric jolt!

Resting pulse between 90 and 115

by AgentX86 - 2019-04-12 11:19:39

That is NOT normal and is really quite dangerous. You're risking cardiomyopathy at a resting rate anywhere near 100bpm, for long intervals.

Again, forget watches and other toys to measure heart rate. They're next to useless for those of us with weird hearts. Once you get a history of what your heart is doing, by counting manually, you can fill in with the toys. You'll have a good idea of when they're lying to you.

right

by AVJim - 2019-04-12 12:23:02

One of the toys I have is a real pulse oximeter.

And of course the doctor today had the big guns.

I will be checking back next week for follow -- up

:o)

by Tracey_E - 2019-04-12 13:41:06

Sounds like an easy fix! I hope it helps. Isn't technology amazing, that their computer can talk to our computer and quickly figure out what's going on and fix it?! Blows my mind sometimes. 

You can trust a pulse ox, that's what I have too. 

If I read that correctly and your resting rate stays over 100, don't be surprised if you get a call from the doc talking about meds to bring it down. Sometimes we see the techs then the doc reads the report later. Techs are only going to be looking at what the pacer is doing. 

accuracy

by zawodniak2 - 2019-04-12 16:07:00

My pulse oximeter and Fitbit (toys) show my heart rate within 1 or 2 beats of each other!  Just saying---go figure!!

                                        Rodger

over 100

by AVJim - 2019-04-12 16:19:15


I forgot to mention that I had a terrible breathing problem reaction to Beta Blockers for bringing down the pulse just 3 weeks ago. So that is out.

And I was lucky today (also misspoke earlier) -- This was handled by the chief cardiologist!!!

(I'm in Germany, so things maybe get done a little sooner)

So all what was said comes from the big cheese. I was a little surprised when she said that maybe it will just go back by itself. But she also made the "jolt" back idea for later sound common place, in case we needed to...

update

by AVJim - 2019-04-15 06:36:53

So just got back from the cardiologist.

Tachardia is the culprit all right.

Since I had a bad reaction to Beta Blockers (sort of asthma) she wants to do cardioversion next week.

I guess that is an electric jolt like in the movies.

Can that -- will that -- really restore the natural slower rhythm?

Update AVJim

by Steve Gregorich - 2019-05-16 15:07:51

A cardioversion is a shock they give you to restore sinus rhythm.  It is carefully timed to occur at the right instant. I am no expert but I have had a cardioversion -- I developed afib a few weeks after open heart surgery to replace atrial valve.  Not unusual.

They gave me some medication first and that did slow the afib down, but did not return me to perfect sinus rhythmn.  So they scheduled me for a "mild" shock -- the lowest setting -- because my afib was not bad. They put me to sleep first.  It took just a few seconds and simus rhythm returned and that was 4 years ago. No pain or discomfort at all from the procedure

Update AVJim

by Steve Gregorich - 2019-05-16 15:14:57

A cardioversion is a shock they give you to restore sinus rhythm.  It is carefully timed to occur at the right instant. I am no expert but I have had a cardioversion -- I developed afib a few weeks after open heart surgery to replace atrial valve.  Not unusual.

They gave me some medication first and that did slow the afib down, but did not return me to perfect sinus rhythmn.  So they scheduled me for a "mild" shock -- the lowest setting -- because my afib was not bad. They put me to sleep first.  It took just a few seconds and simus rhythm returned and that was 4 years ago. No pain or discomfort at all from the procedure

Follow up

by AVJim - 2019-05-27 05:09:06

So it has been a month.

Settings are at 70 and 140.

Have been feeling really good till today.

I am a musician, and t9day was an intensive rehearsal. Result : exact same feelung/reaction as before. This time worse. Can't walk more than 10 steps. Pulse is at 60  -- obviously halving it again like before.

So I guess it reached 140 and went back to half mode? Wouldn't be so bad if it didn't last the next 8 hours! Pulse is at 60. Obviously not right, especially since normal is 95.

Can I just have them turn off this thing that is like a safety (Don't know what it is called)? Is 140 really that high every once 8n a while?

Now I am in a former Soviet republic -- jot exactly what I planned for my next pace visit!

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