Settings still need tweaking?

Hi there good people, I am new to the group. I had a dual lead PM fitted last October for Tachy/ Brady syndrome, having had cardioversion in March for AF, and so far have had two appts when the the settings were adjusted to make exercise easier. Both times I have found the benefits seem to last 2/3 weeks then I notice exercise ( walking) becomes more challenging again, eg increased shortness of breath, aching legs, getting sweaty. I am wondering if this is normal, I am due a routine PM check in Feb , and am not keen on going earlier, purely because of Covid situation at the moment. I am trying to get match fit in order to teturn to my job as a self employed gardener, perhaps I am being impatient !

Also has anyone else noticed that their heart rate increases when in a car on a bumpy road ?

Apparently this can  be a thing !

 


9 Comments

No, and Yes.

by crustyg - 2021-01-21 10:00:24

Heart rate increase on bumpy roads - very much Yes.  The accelerometer in your PM is detecting the fairly vigorous movements, and feeding it into Rate Response =>HR increases.

Feeling much better after PM settings tweaked, but only lasting for a couple of weeks - No, that's not normal.

Have you dropped back into AF?

AF (atrial fibrillation)?

by Gemita - 2021-01-21 10:26:15

Hello Gardener,

I see you are fairly close to my home town, Charing.  Welcome to the forum.  

What you are experiencing seems to be a bit more than pacemaker settings related.  I also have a pacemaker for tachy/brady syndrome and I also have AF.  A cardioversion is certainly not a cure for AF and I too wonder if you keep slipping back into AF causing your symptoms?

Have you got any home monitoring and can you transmit a report to your clinic?  Alternatively can you see your GP for a check or check your own pulse/BP with a home monitor when you get symptoms.  I also feel my neck pulse to see whether my pulse feels slow or fast, regular or irregular.  AF is an irregular heart rhythm.  If it is AF, you may need additional medication to keep it under control until you next see your Cardiologist/EP.

I still get intermittent AF and it can be cruel when bending in the garden.

Please provide more information about your diagnosis and PM (brand, model etc)

by ar_vin - 2021-01-21 12:48:12

Welcome to the club!

Without critical details about your diagnosis and implanted brand/model etc it's imposible to provide a reasonable response.

If you have a Medtronic PM I have a pretty good guess as to what might be going on based on my past experience. It could also be a similar issue with other PM brands.

But first please do provide some essential details.

Refining PM settings.

by Selwyn - 2021-01-21 13:43:52

I have never found bumpy roads a problem and my Rate Response ( accelerometer) is set to fast onset. This effect must vary with the make of PM. I have been bumped around in the back of Land Rovers on some of the worst roads in the world, and not on roads. 

There is no reason to think that in some way you develop tolerance to the changes in your pacemaker settings. I have never heard of this happening. Either there is benefit or not. There is nothing to suggest that a benefit would be time limited.

I have found the Kardia® device a good investment for telling whether I am having an arrhythmia. Whilst not a device for diagnosis, it will monitor rate and normality. 

Gardeners are in general really fit people.. I do find my pacemaker is not good when I am lifting weights - this causes breathlessness.

Best wishes for regaining your fitness.

 

Settings still need tweaking?

by Gardener58 - 2021-01-21 13:52:34

Many thanks for all of your replies, I shall endeavour to fill in the gaps .

My Device is Medtronic, Vitatron, fitted for bradycardia . Since insertion I have had no AF and I believe I am pacing permanently according to the Physicists at check up. I have a cardio watch made by Withings that syncronises with my phone. It will give  a 30 sec one lead "ECG", I have a nursing background and have had some experience of working in CCU, many moons ago.

I am on a small dose of Bisoprolol 1.25 daily in order to prevent AF, and in the past I have experienced side effectsand wonder if this has a bearing on how I feel.  At a recent phone out patient appt with my cardiologist he said he would rather I continue with Bisoprolol if I could bear it.

PACEMAKER SETTINGS

by Gemita - 2021-01-21 16:04:46

Hello Gardener,

I also have a Medtronic (Ensura DR model) - implanted 2018 - and am also on Bisoprolol low dose 1.25 mg.  At this low dose there should only be minimal symptoms, but some of us are extremely sensitive to beta blockers.  I certainly am.

Sometimes I have a problem getting my heart rate to increase or, as it increases close to my upper tracking rate (130 bpm), I can feel somewhat breathless and uncomfortable.  I believe my upper rate needs to be increased, although with AF my doctors are reluctant to do so.

Hopefully others can help with any potential "setting" changes but you may need to find out what yours are first?  I have asked for access to my pacemaker downloads and you may want to do this too at some stage.  It would help if you could find a good Medtronic technician/EP technician who can help you work through your settings and maybe you could do a stress echo test to work out what your ideal settings should be.  Do you know for instance what:

.  your lower rate is?  Mine is set at 70 bpm

.  your upper tracking rate is?  Mine is, as above, 130 bpm

.  what your pacing mode is?  Mine is AAIR

.  your pacing percentages:  right atrium/right ventricle?  I am pacing almost 100% in the right atrium.

.  whether you have rate response turned on:  Mine is 

.  whether your pacemaker has recorded any high heart rates, or any other events?  (You could ask specifically how many Mode Switches have occurred).  This would indicate whether an event like an atrial tachyarrhythmia has occurred.  I think if you question them fully, you might be surprised to find evidence of a tachyarrhythmia for the period you have been paced, even if only short episodes.  

When you get symptoms, do you always check to see how your pulse feels?  I would do this manually to get an idea of what heart rhythm you might be in.  I can tell when I am in normal sinus rhythm for instance and immediately I lose this steady rhythm.  With tachy/brady syndrome the pacemaker addresses the brady part, but not the tachy part, so it is still possible you are getting episodes of tachycardia from electrical disturbances.

Most EPs/cardiologists are trained for setting the pacemaker for sedentary patients and not for sporting activities, so you may have to work a bit to find someone who can help you with your settings.

Hope things settle for you soon, but please be patient.  There is a lot to learn!  I am still a beginner on pacemaker settings

 

 

Tweaking?

by AgentX86 - 2021-01-21 22:56:18

Maybe but rate response won't do a thing for you while you're gardening.  You have to move, more precisely your torso has to move, to get the "response" out of rate response.  This is why a bumpy road is causing you grief.  Because it is, I think your PM tech has your rate response tuned pretty aggressively.  I don't think this is your problem.

I have very little problem doing pretty much anything, unless I carry a lot of weight or pull something heavy (hand cart, etc.).  My PM has no idea that I need more oxygen than if I were just walking.  That's one of the big limitations of rate response.  I suspect you're in the same position. 

Maybe turning up the resting rate will help but I somehow doubt it.  This might help in the short term but you'll soon get used to it and you'll be back in the same position. This explains why your tuning works for a while, then doesn't.  I'm paced at 80bpm and still have the issue.  When it was first cranked up, I felt great.  It didn't take long before that was the norm.

This isn't a simple problem.  For me, it's just a nuisence but I can see that it's your life.  I think you're going to have to have a long talk with your EP about this.  This is what he's paid for.

Settings still need tweaking?

by Gardener58 - 2021-01-22 08:02:31

Thank you once again for all of your suggestions, I am beginning to realise that getting the settings just right relies to some extent on trial and error. I have checked in with the Cardiology dept at the hospital for advice this morning, they think the likely cause is the rate response setting and I have been given a non urgent appt for 25th Feb which is welcome.

Getting settings right

by Gotrhythm - 2021-01-22 14:19:29

You've put your finger on it.

Figuring out the settings is pure guess work. They start with a kind of one size fits all just to get you started and then refine from there. It's kind of like shoes. You know your size, but the only way to know if a shoe is comfortable is to try it on. Same with settings.

People are very different in how aware they are of their heart, what sensations they will tolerate, how they go about their activities--differences that it would be impossible to predict.

If you have a team that is willing to listen to you and keep tweaking until all the settings work for you, count your blessings. That's as good as it gets.

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