Now WHAT'S going on?

Hello all!

Just over a week ago I had my 1 month check up - no issues. Now, twice since then, I've been getting low HR episodes that last a few hours. My normal HR stays around 70. At least twice my HR dropped to the low 50's and stays there.I get a strange weak feeling in my legs and stomach. If I move around to try and raise it, I get a small response but it won't go above 80 or so and I feel like I get into Wenckeback symptoms. 

Is this some type of SSS? I'm waiting for a call back from the pacer clinic. 

Anyone else ever experience anything like this?


10 Comments

Wenckeback symptoms?

by AgentX86 - 2023-04-18 02:15:49

No, your pacemaker is working fine.  You're probably feeling PVCs.  You don't say how you're measuring your heart rate but none of the devices are honest when it comes to PVCs.  If you're ever concerned about your heart rate, measure it manually.  Count the pulses for thirty seconds and multiply by two.  Fifteen seconds (multiply by four) is probably good enough but thirty is pretty standard.  You'll probably feel "skipped" beats.  They really aren't skipped, just two come very close to each other so one isn't counted.  If you feel your wrist, you may miss them too but you will probably feel the "skip".  Use your carotid (neck) to count instead.  You'll fell the smaller beat right next to the main beat.

What's happening is that your heart is throwing a "Premature Ventricular Contraction (PVC)".  The PVC comes very close to the main beat so the heart hasn't had a chance to fill so the beat is weak and is missed by your monitor.

PVCs are a RPITA but a lot of us get them or have had them in the past.  They aren't dangerous unless there are a lot of them. You can talk to your cardiologist but there probably isn't a lot you can do for them other than make sure you get enough sodium, potassium, and magnesium.  These three metals (AKA electrolytes) are critical for proper nerve/muscle operation.  I take magnesium suppliments (magnesium taurate preferred, not magnesium oxide) for this reason.  As a side effect, my leg cramps went away immediately. Give it a try, there isn't any danger in a reasonable amount of magnesium (300-400mg).

Ectopics

by piglet22 - 2023-04-18 06:29:29

I can throw some personal experience into this.

I had the pacemaker fitted in 2005 to correct Mobitz Type 2 heart block.

All went well until this year, and I was getting these longish episodes of perceived low heart rates. These episodes could go on for hours especially relaxing after exercise or in the middle of the night.

All I got from the physiologists was that the PM was working fine.

Everything else said it wasn't fine, because I was getting spells of light-headiness, my radial pulse was between 30 and 40 bpm despite the PM being set to a minimum of 60 bpm and then 70 bpm.

My blood pressure was low down to 100/50 and of course it was worrying after 18 years of trouble-free usage.

One thing I would say is that how you measure your heart rate can give different results.

An oximeter would give results for bpm which looked like 60 or 70 bpm, but at the wrist, it was 30 to 40.

I think this either due to the oximeter using some averaging routine, or it's seeing what the PM was picking up. I'm thinking that the PM has some software that is being fooled by these premature beats and translating them into longer pauses. In electronic terms it's called retriggering and it's a technique widely used to detect missing pulses in machinery or watchdogs. I have written software that detects missing transmissions from utility meters, and it can correct the missing pulse if need be.

On the other hand, the decent blood pressure monitor (Omron M10 Intellisense) accurately picked up what I could feel at my wrist say 100/50 and 34 bpm. It also has AF detection and on occasions, where my perceived pulse was low, it struggled to get a reading.

The support from the cardiology people has been disappointing. You just get, "it's working fine". It's not.

I turned to the GP. At least she took an interest and changed my medication from 50-mg Atenolol to 1.25-mg Bisoprolol. This reduced the severity of the episodes, but not eliminated them. Also at the cost of raised BP.

She wrote to the cardiology department and asked for a face-to-face consultation at their earliest convenience. That was March. The earliest they can do is end of June and a 15-minute phone call. Such is the state of the UK NHS. Doctors on strike now critical care nurses in A&E and cancer departments on strike as well.

Gathering data is critical to getting anything done so I'm going to turn my attention to recording these episodes. There are plenty of electronic modules available for physiological measurements and I have a spare oscilloscope that will do the displaying and recording

Face to face clinics have gone, replaced by bedside monitors (Medtronic MyCareLink). It's clear to me that they don't pick up these ectopic episodes.

I'm even more wary of these physiologists as they let my first PM fail on me in 2016 which ended up as an A&E admission and an unplanned operation the next morning. I had no money so came back on the bus pass.

Thanks everyone! EP response..

by USMC-Pacer - 2023-04-18 10:22:49

So I monitor my HR with a sports watch (Garmin) which is typically accurate. I verify it if I'm skeptical via my wrist pulse and it's usually right on.

All the above symptoms lasted about 7 hours and returned to normal around 1am this morning.

So the pacer clinic called me this morning. Not because of my message to them, but because my device sent an alert. The tech told me there is a setting related to "atrial tach" that can make you feel crappy for a while (no kidding!). She said it's more related to the device than me. They just need to make a settings change which they are going to do this Thursday.

I'll update with more info after that. Thanks all!!!

Watch

by AgentX86 - 2023-04-18 14:50:51

Your watch may be spot on under normal circumstances but it will lie like a rug when there are arrhythmias. Never trust a watch unless you already know what the answer should be.  When they lie, they lie big.  All of them.

AgentX86

by USMC-Pacer - 2023-04-18 15:39:46

Yeah, I've read here before that watches, straps, and treadmills, etc that track HRs can be wonky with pacers so I'm careful. I'm glad this new device can send messages when it detects something so the clinic knows what I am complaining about. My last device required lots of work and visits to finally get it right. Hoping this one is easier.. thanks for your replies :)

Glad you’re being diligent

by Lavender - 2023-04-18 21:53:16

Both you and your monitor sound diligent and efficient! Nice to know you're scheduled for a tune up!

Simper Fi

by Stache - 2023-04-19 18:58:43

I have had my dual chamber pacer little over two years now and 100% paced.  I have had some issues with settings and the clinic people at the hospital know just enough to be dangerous in my opinion.  I just meet with my pacer manufacturer tech at the hospital last week he knew exactly what I was talking about with my issues.  He made several changes to my setting and it has made a world of difference. 

You want to talk with the manufacturing tech for your pacer and not a general tech from the hospital that only knows general stuff from the three biggest manufacturers. Trust and verify... 

Stache

by piglet22 - 2023-04-20 08:21:48

You would find it a different story in the UK.

PM patients here to the best of my knowledge don't ever get to see technical employees of the PM manufacturers. That's strictly off limits and patients wouldn't understand it, would they?

I worked a lot with technical reps and as far as I'm concerned, they were always the first port of call when we needed help.

They have access to all the information and of course, if there's a potential sale involved, they will be helpful. I couldn't have done my job without technical reps.

When you watch complex surgical procedures, especially those involving robotic gear from the likes of DaVinci, it's pretty clear that the surgeons couldn't operate these machines without a lot of help from the companies.

In the UK, the patient is kept at arms length. It's like the inner keep of a castle where the consultant sits, surrounded by layers of defences like the GPs and in the case of PMs, the physiologists. The only way you can breach these defences is to crash through A&E.

I've banged on about it here before, but the UK NHS is in crisis, the free at the point of use, whatever that means, system doesn't work any more and strikes by front line staff like ambulance paramedics and Junior Doctors (they aren't juniors really, some are quite old) is just adding to a lot of patient grief.

All fixed..

by USMC-Pacer - 2023-04-20 13:19:01

For whatever reason I was losing beats at  128 bpm and the device wasn't capturing it. They repeated it twice. It was putting me back in 2-1 block. I'm not sure what she changed but it isn't doing it anymore . I walked stairs and got up over 140 without issue. My upper limit is at 150 currently so I have no idea why it was doing this. 

Yay👈🏻

by Lavender - 2023-04-20 14:25:04

You gotta a lotta livin' to do. Glad it will be better quality now that you had this adjustment!
 🫸🏻💥🫷🏻

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