Question about settings

It's been a while since I've posted, now 2 in one day! Another post reminded me of a question that I have had in the back of my mind, so here goes: A lot of people discuss having settings adjusted or "tweeked", usually because initial settings are not quite right or they feel they need a change. Most recently I learned that settings may be different while leads settle in & need to be dialed down later. Well, as far as I know, my setting have been the same since day one (coming up on 2 years ago). Yes, they check periodically, most recently in June this year, but they always say everything looks good. Am I just lucky? Am I not tuned in enough to my own body to feel that something may be not quite right? Is this maybe because I am not 100% paced, but just need to make sure things don't slow down too much? It is set so that I don't go below 60 bpm, which must be OK for me (or is it??). I feel a bit like I drove a car off the lot & never went back for a tune up because I'm really not sure how it SHOULD run. 


7 Comments

I've wondered the same!

by dogtired - 2022-08-15 14:02:55

Although I have NO direct expeience (I don't have a PM yet) , I believe that it largely depends on: type of heart block, your activites and the type of rate response selected..  In my case I have normal sinus rythm but a block in the AV node, the results of my monitoring indicates a sinus rythm of 50-150 which is what the PM will be set at.  Activity monitor will be off.  The pacing will be a straight forward p sense v pace.  Those needing to use rate response will be harder, especially for those involved activities with litte to no movement of the core

 

What a great question

by Gemita - 2022-08-15 14:50:03

TLee, so nice to hear from you.  My own view is that we should always “go by our symptoms” and if they don’t feel quite right, or if we are suddenly unable to perform our usual daily activities, we should speak to our doctors to see whether the pacemaker settings could be adjusted to help overcome our difficulties. 

Generally though if we are feeling reasonably well, our hearts are quiet (this is important to me as an arrhythmia sufferer) and we are able to lead fairly normal lives, why change anything, why try to push for more and better?  You might find yourself in a worse position.

In your case though TLee, you do have a major symptom (tiredness) and this is something that can have many causes.  This is one area where the pacemaker technician or your doctor could possibly help by experimenting with your settings to see whether adjustments might help, perhaps a higher base rate setting, without causing additional symptoms?  It will be trial and error, as with medication, before you know whether settings adjustments might just make a difference and help with tiredness.  I suspect though it is the Metoprolol and your Tikosyn.  

As a matter of fact I have recently had Rate Response turned on for the first time since implant in 2018.  I have to say it has helped me to climb stairs without feeling puffed and to be able to exert myself more.  I go back in early October to see whether my heart rate has responded to the settings given to me, although my improvements would suggest this is the case.

Perhaps your tiredness can be helped by a pacemaker adjustment, but you won’t know unless you discuss this possibility with your doctors.  I would also discuss the possibility of reducing your medication, especially if your Atrial Fibrillation is behaving.  No harm in trying.  You might just find that your tiredness will ease without any settings changes.  

It is important that we all tell our doctors/technicians about any symptoms we have.  Unless they know, they will assume all is well and do nothing other than to tell us the pacemaker is working as it should (which means as it is programmed to work), but is that programming always right for us?  Adjustments may need to be made throughout our lives to take account of any change in our health condition.  I hope you continue to do well

Tired!

by benedeni - 2022-08-15 16:10:34

TLee and Gemita, you hit the mark with this tiredness thing.  Like you, Gemita, I had my Rate Response turned on in May for the first time trying to get a handle on this fatigue issue.  So far I have not noticed any improvement at all.  I see my new Cardiologist tomorrow for the first visit and foremost on my list of questions for him is this very issue.  In my case I also suffer from neuropathy and am not sure if this problem is the cause of my fatigue or if it's a heart-related thing.  All I know for sure is I'll do something, like change the sheets on the bed, and then I'm worn out.  Not sleepy, just plain old worn out.

My former heart doctor stopped my Metoprolol thinking this could be the cause plus she said I really didn't need it.  Made no difference.  

Settings

by AgentX86 - 2022-08-15 21:25:57

The settings that usually have to be changed shortly have implant have to do with the voltage on the leads ("capture ratio").  When the device is implanted they generally turn up the voltage to make sure it's pacing properly. Then as the leads age in and the heart settles down, the voltage needed to trigger a heart beat ("capture voltage") is turned down to maximize battery life. Sometimes, they'll set the rate rather high then adjust it back it down over the next couple of months.

As Gemita points out, most other setting changes are pretty much to make you feel better. Yes, these may change over time and your needs change (amount of exercise, interests, etc.).

A lot depends on your underlying condition

by crustyg - 2022-08-16 08:15:23

I think the folk who have a failed natural pacemaker - the SA-node - which pretty much guarantees that they can't raise their HR properly (if at all) in response to exercise are the ones most vocal about tuning a PM.  It's really important to get the box tuned for each of these individual patient, whilst avoiding over-pacing them (causes a number of problems).  Exactly *how* the PM detects the need for an increased HR is part of the main challenge, along with calibrating the response: does the patient need maxHR to climb a flight of stairs at home, versus swimming/running/dancing/walking around the mall?

For CHB patients with a working SA-node, it *should* be much simpler: all the PM needs to do is detect an electrical activation in the R-atrium and replicate that with a PM-induced pulse down to the ventricles.  There may be some tuning needed to ensure that the PM can handle the maximum HR that the patient can achieve, especially if the ventricles are paced with an apical RV lead.

Then you start getting into the more intricate cases where the AV-node works some of the time, introduces a long delay, can perhaps allow the electrical activation from RV to pass back up into the RA and these patients also need very individual tuning.

Does that make sense?

And then . . .

by Gemita - 2022-08-17 05:19:38

add an irregularly irregular AF rhythm into the mix and you can imagine how difficult it can be to get those settings adjusted perfectly to cover all potential events.  There are times when I think I expect too much from my team.  They have done amazingly well to get me to where I am

It all makes sense

by TLee - 2022-08-17 17:34:30

It does make sense that every one is different in our diagnoses & therefore in our needs. Since the main concern with me is that my medication does not slow my heart rate too much, the main concern is that the pacemaker keeps it from dipping below 60bpm, and anything else is not an issue. I do wonder if there might be something in increasing it a tiny bit, just to give me a bit more oomph. I guess I can add that to the list of possibilities, along with treating sleep apnea & changing beta blockers. I agree, Gemita, that it can be a real puzzle getting to what works best. I learn something every time I ask a question, which is wonderful. Thanks, all! 

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