I was listed for a box change with an ERI of > 12 months at my last check in November. 

I've felt fine since and felt I had plenty of time, but today after an exercise class I've been hit by a feeling of something not being quite right. I'm not dizzy or breathless but feel a bit compromised, particularly when resting / sitting down. It improves if I move around. 

The ERI was <30 months 6 months ago and <60 months 12 months before that, so it's definitely going down pretty fast.  Could this be EOL and how quickly should i expect to be seen if it is? 

Grateful for any replies. 




two things

by dwelch - 2019-12-02 15:40:14

I have been told to not trust the estimate until it says weeks/months.

Second I have had two or three go into the safety mode or whatever.  Easy to tell just check your pulse should be locked at say 65bpm independent of exercise.  should get real tired real quick asserting yourself, not make it up a flight of stairs without a break, etc.   depends on you though as to how fast it hits you.   always measure a full minute dont cheat.  

If it doesnt slow down at rest and speed up when active then its probably in the last few month period, plenty of time to schedule a replacement.  If it is tracking then its not there yet.

When in doubt call the doc and get an interrogation and/or use the at home box if you have one.

Thank you !

by Marmite - 2019-12-02 16:39:28

Thank you v.much for the reply DWelch. 

My PM is set to 60bpm as the lowest rate and my pulse was taken just after exercising and it was well above 60bpm. Based on what you're saying that sounds OK.  

Two hours later I just sank and felt pretty terrible when sat at home on the sofa.  My pulse felt slow and I felt quite compromised. I've rested and have just taken my BP and HR and it's 74 bpm but with much higher BP than usual.  My dx is SSS and I'm roughly 70 % a.paced, so I assume that this must be my own heart working independently.  It's not locked at the lower rate set as far as I can tell and I assume this would only happen if I was totally PM dependent no? 

I'm in the UK and other than A&E (emergencies) there's not much to be done until the morning...and to be fair I'm not sure it's that urgent.  I don't have a home box so can't tell whether it's still tracking either.  

In the UK they tend to schedule a box change from 12 months prior to EOL, but I was told at my last check that the device might expire before Xmas.  Still a bit worried tbh, but feeling better after a long rest. 




by Tracey_E - 2019-12-03 13:30:57

If it's gone from ERI to EOL, it will keep you safe and not let your rate drop below the minimum, but the extra bells and whistles get turned off and it's no longer going higher than that so if you pace a lot you may not feel too good until it's replaced. Take it easy until you figure out what's up. 

Those numbers are just an estimate. I've had it say 6-12 months for well over a year, I've had it say 6-12 months then switch modes 2 months later. Like dwelch, I'm on my 5th. If your rate isn't going up, that's a pretty solid indication it's switched modes. 

Thanks Again

by Marmite - 2019-12-04 03:37:41

Thanks TraceyE,

Yes, I suspect that a switch from ERI to EOL may be what has happened, and perhaps rate response is now switched off? I definitely feel compromised but not drastically. 

I rang the clinic and they said that notes on file showed that I;m scheduled for a box change but no date arranged yet and the lady I spoke to said that they don't seem to be in any rush, although at my last clinic visit they told me that I'd need the box change before Xmas....doesn't make sense to me.

My HR isn't falling below 60bpm as you say. I have an appointment with the pacing clinic in a couple of weeks. How long does EOL last? 

On the positive side my own heart seems to be achieving HRs in the 60s-80's.  Not sure how?



by Tracey_E - 2019-12-04 09:41:34

If you are in EOL rate response is probably turned off.

EOL lasts about 3 months.


by Marmite - 2019-12-04 14:58:38

I'd better take it easy then.  Have rung the clinic and waiting for call back. Thanks for the advice. 


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