Rate Response set too high?

Hello Fellow Members.  I am 79 years old and have ongoing fatigue issues.  I am 100% paced. I'm pretty sure most of my problems are related to my pacemaker settings.  The rate response was turned on in June and it has not helped.  Lately, today for example, I was going to change the sheets.  After putting on the fitted bottom sheet I had to lay down for about 15 minutes.  My heart rate was 136.  Felt like I was going to collapse if I didn't lay down.  Later, I finished the bedding change and my heart rate was 134.  Again, same feelings.  Is this a sign of a too high setting?  Something else?  My next appointment with my cardiologist and for a pacer check isn't until early December but tomorrow I plan on having that appointment moved up if at all possible. This is scary!  Thanks.

6 Comments

Call your clinic on Monday

by Persephone - 2022-09-18 18:07:21

You shouldn't have to tolerate this without some kind of assurance that your medical team is there for you. Personally, I detest changing the bedding and am thinking about going to a smaller bed - as many as necessary in our household.

Call your clinic

by Good Dog - 2022-09-18 18:24:25

I completely agree. You should contact your clinic and tell them you need the RR adjusted ASAP. I just went through that. After turning-on the RR I started feeling terrible and was suddenly getting arrhythmias for the very first time in years. They tried adjusting it and when the arrhthymias did not go away, they finally turned it off. 

As Persephone said; "you should not have to tolerate this". They can adjust the aggressiveness and/or the max rate. It sounds like it is set too aggressive, but that is something that you and the PM Tech/Doctor need to decide. Your settings should be based upon your activity level as well as how they make you feel. They can be tweaked accordingly.

 

Sincerely,

Dave 

Hope you have received medical advice

by Gemita - 2022-09-20 06:35:06

Benedeni, I am very sorry to hear of your tachycardia and I hope by now you have received medical advice.  To feel close to collapse is a symptom that needs medical assessment as soon as possible.

If you are still struggling for answers, I would politely ask for a holter monitor or Zio patch for 7-10 days or longer, to try to identify the presence of any new or worsening arrhythmia which may be occurring either as a result of changes to your rate response (RR) setting or to any changes in your current heart condition or any other health condition?  Have you had electrolytes checked, are you dehydrated, have you changed your medication, have you seen your general doctor for some recent blood checks?  

I am also getting an increase in my arrhythmias but this was first noticed before my RR setting was switched on in July, so it is hard to know if switching on RR has made my arrhythmias worse.  However, my technician did say that if I noticed any worsening symptoms, I could return to clinic at any time for adjustments or to have RR switched off.  I may well do the latter when I return to clinic, since I haven't noticed any improvements although RR always needs fine tuning to get it right.  

Just reviewed your records and I see you have intermittent Atrial Flutter, so that won't be helping your fatigue or symptoms at all.  This needs discussing with your EP and additional monitoring or checking of your pacemaker AFib/Flutter high heart rate logs or other data to confirm the arrhythmia present, its frequency and duration and whether you will need additional treatment to control your heart rate would be helpful?   

Saw My Cardiologist Yesterday!

by benedeni - 2022-09-20 16:25:33

Thank you all for your responses and helpful information.  It sure helps to be in a group of kindred souls! 

I was so lucky.  I called my cardiologist on Monday and there was a cancellation at 3pm so I gratefully took it.  The St. Jude rep came and did the interrogation and after consulting with my doctor the opinion was that my AFib (not Flutter) was really quite insignificant  and the cause of my issues was pmts (pacemaker mediated tachycardia).  An adjustment was made to my pacemaker programing to prevent the sensing of "retrograde P waves".  All was explained in detail and I took a couple of notes so I knew what to research for when I got home.  At any rate I think I feel much better already and my doctor said she could always turn the Rate Response lower next time if need be.  

So crisis over for now! 

RR Sensitivity & PVC Response

by Penguin - 2022-12-28 15:41:28

I have the same pacemaker as you and when my rate response (the slope) was increased the severity of PMT attacks really increased noticeably. An increase in RR sensitivity is apparently one of the known triggers for PMT along with PVCs.  Undetected atrial arrhythmia are another cause. 

Hope this helps. 

 

Rate Response

by benedeni - 2022-12-28 15:55:08

Thanks, Penguin.  You know before my doctor determined I had PVC induced PMT, I had arrhythmia attacks and I'm thinking you may be on to something about them causing the PMT as well.   Especially since all this happened after my RR was turned on.  I asked my cardiologist this last visit about the RR and she said it was still turned on but I wasn't using it.  Guess that's because the tech from St. Jude (Abbott I guess now) gave me a completely different setting to stop the runaway feedback between my pacemaker and heart.  

All this is way above my grade level and age doesn't help either!  At any rate, thank you for responding and I think you are right about that rate response.  Very best to you.  

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