Support Group

Hi, when I finished my pacemaker interrogation today, I thought of this forum and thought how good it is to have you here supporting each other including myself.

I knew I had been out of rhythm and hoped the report would show this, I was surprised I had 76,000 arrhythmias episodes in 6 months plus an unsustainable rhythm in the middle of the night.

Does this all sound boringly normal? I assume it does. I am booked in for a sleep test. 


76,000 arrhythmias

by AgentX86 - 2020-02-13 08:23:31

Without knowing exactly what the "arrhythmias" were, it's impossible to say. It really makes no sense. That's one in a 200 heartbeats over a six month period is an "arrhythmia". If the "arrhythmia" is a single PVC,  a 0.5% load is nothing to worry about but I don't think a pacemaker could even record PVCs that infrequent. I know mine can't. If they were strings or tachycardia, it would be more worrisome but it would be reported as such. IOW, not enough information.

Also an "unsustainable arrhythmia" is either not a problem because it can't be sustained or you're dead because it couldn't be sustained without killing you. Since you're evidently still here, I'd say you need a _lot_ more information.

A sleep test I probably a good idea, in any case.

An exceedingly high burden of arrhythmia !

by Gemita - 2020-02-13 08:35:35

Hello CMH22567,

Well I wouldn't say this all sounds boringly normal because you seem to be living with arrhythmias most of the time.  76,000 arrhythmia episodes in 6 months would seem to me as though you are either in a permanent arrhythmia or going in and out of an arrhythmia all the time !!  Do you know which arrhythmias have been recorded ??  And does this include the so called benign ectopics like PVCs and PACs ??  The sleep test will be useful because sleep apnea is a leading trigger for many arrhythmias including AF. 

I am an "in and out" arrhythmia sufferer and these constant changes in rhythm and speed can cause heart havoc for me too.  If only my little heart would make up its mind which rhythm and speed it wants to choose, life would be a bit quieter.   

Good luck with the sleep test.  Make sure that you try to get at least 3-4 good hours of sleep during the test, difficult I know with all those sticky patches and wires !

Pacemaker/ICD management

by Keithwhelpley - 2020-02-13 12:07:51

CMH22567, I am going in for a interrogation and discussion about my situation tomorrow. What I have discovered over the past two years that many issues that have been blamed on my heart were actually mediated by the pacemaker itself. I would recommend that you get fully aware of all your diagnosises and the settings on your PM. I learned through very rough times that cardiologists (even EPs)are not very versed on settings, modes or medications. The internet now is a great place to research everything about your condition. It has save my life TWO times. Once regarding the drug I was put on to supress VTs and second to turn off the Rate Response setting that turned out was causing the VTs. 

All our doctors mean well, but the reality is the information they have to stay current on is so overwhelming that it requires patients to be advocates for themselves. My appointment tomorrow is to discuss turning off the PM portion of my ICD to see exactly what my heart wants to do versus what it does under the PM. And then set the PM for the problems that arise. When they are installed, there is the out-of-the-box settings doctors turn on. And once there, it's difficult to get docs to consider changing them.

My guide always is not to throw me heart under the bus. If it is doing things it didn't do before the PM, then question the PM. And the interogator will tell you the device is working fine, and it is, but that says noting about how it is working WITH your heart. Pacemakers are life-savig devices, but they need our critical thinking to work exactly as engineered for exactly the right set of conditions.

Don't hit the panic button yet

by Gotrhythm - 2020-02-13 15:52:58

It sounds like a lot, I'll admit, but at 60bpm how many times does your heart beat in six months? That's 60bpm X 60 min/hr  X 24 hrs X 180 days. Check my math but the number I get is 15,552, 000.  (Our hearts really are doing a lot of work!)

76,000 out of 15.5 million --- Someone smarter than I am can tell you the exact percentage, but rounded up it looks something like 0.005 %.

The question is exactly what kind of arrythmias were being counted. Some, like PVCs,  are a lot more "normal" or benign than others, like VT. As for "unsustainable," I don't know what that is.

Read Kiethwhelpley's comment. Everything he says is right on.


by ROBO Pop - 2020-02-13 17:40:06

Well I'm gonna disagree a bit. If it is your pacemaker causing the issue ,called Pacemaker Mediated Tachycardia (PMT), they would see that on the interrogation and there are several things they can do to resolve it such as increase your base pace rate or turn off rate response. There's some others but no sense going into them at this time.

76,000 does sound a lot but after you've been at this awhile you'll realize gotrhythm is right and it's not such a big deal. What you really need to do is find out from them what exact irregular rhythms you are enjoying and whether they are of concern.

It sounds like they suspect sleep apnea which can be annoying for sure but there are treatments such as a CPAP ( continuous positive air pressure) machine you wear at night.

Hang in, they'll figure it out but be sure to ask more questions

76,000 out of 15.5 million

by AgentX86 - 2020-02-13 23:42:26

is equal to 0.5%, not 0.005% (forgot to multiply by 100%). Still a trivial number if it's single PVCs (probably close to a normal, healthy heart).  If it's strings of VTach, not so trivial.

75,000 / 15,0000,000 =  0.005 * 100%  = 0.5% 


by CMH22567 - 2020-02-14 02:40:39

Thank you so much to everyone who responded, you all had great info to share and I appreciate it. It is so nice to talk to people who get it. xo

Did you get this sorted

by Narelle - 2020-02-14 08:33:25

Hi I know these posts are  back in 2014 but i was just reading through all the posts... Ive had pacemakers for over 45 years now... and recently ive been having runs of AF - usually its just an odd one and i can look up my diary and say oh i was at a wild party that night etc.. LOL...   but this time it was alot in 6 months for me.. im talking 48 not 78000 -  turns out my sensitivity setting was set to high and was picking up a far field, also they have since then discovered noise on an old lead and thats also creating new runs of AF.. so sensitivity has been turned down and it seems to be working - for now..  

So did it turn out to be sleep apnea or something else.  

Cheers Narelle 

PS sorry I just realised the dates recent - sorry Aussie here i was looking at the 14, cause thats where we put the year... 

Some perspective

by Seo - 2020-02-16 00:48:09

Years ago, when I first stsrted seeing a cardiologist, and well before I developed atrial flutter and bradycardia, and had an ablation for the flutter, AND, had a pacemaker implanted, my heart would either skip a beat, or beat prematurely 7% of the time - so that would equate to about 1 million "anomalies" over a 6 month period. My cardiologist just shrugged and said they were no big deal. "Like a muscle twitch,". So, if your arrythmias are single, out of sequence beats, I'd agree with your doc and not worry. My doc has also told me that isolated PVCs or PACs are not a big deal. Good luck getting it sorted out. 


by Gemita - 2020-02-16 02:57:27

There is plenty of literature out there to suggest that the higher the PAC count the higher the risk of developing AF and I do not regard AF as a benign arrhythmia.  Similarly a high burden of PVCs can lead to problems such as PVC induced cardiomyopathy.  

I do wish doctors wouldn’t be so dismissive of the so called benign ectopics not counting for much.  Agreed the odd one here and there everyone has and goes unnoticed but when they are prolonged (begiminal in nature) they can be very difficult to live with and risk triggering other atrial/ventricular tachy arrhythmias.  My begiminal PACs almost always lead to AF and my PVCs have led to NSVT.

I believe it depends on what what seen and duration/speed of the arrhythmia in CMH22567's case.

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