Rate setting changes

Hi everyone🙃

I am new here, but I am happy to find you because I need your help to understand something. 
 

My dual chamber pacemaker was implanted almost ten years ago and it has impacted my life in a wonderful way. Actually six months after it was installed, I was hospitalized with severe sepsis of unknown origin, and my pacemaker helped me survive as it took over 100 percent when my blood pressure dropped to 50/25. So I appreciate and value this device. 
 

This is my concern however...

My pacemaker has been set to activate when my heart rate drops below 60bpm and began by activating about 35 percent of the time, and in recent years it has been activating 45 to 50 percent of the time. However, at my last appointment about four months ago, I was informed that the rate was being lowered to not activate until my heart rate drops to 50bpm. When I asked why, I was told that this is what is done as the battery ages to extend battery life. I was somewhat concerned but soon forgot about the whole thing. Until today... 

Over the last couple of months I have been feeling extreme fatigue and have become much less able to handle activity and outings. In fact, I haven't left my house more than two or three times in the last two months. As I care for my 87 year old mother, this is becoming discouraging as I can barely take care of myself and have had to make arrangements for someone else to take her to her numerous treatments and appointments. 

i have actually begun to think that I may need to arrange institutional care for myself and my mother, then this morning it occurred to me that all this worsening fatigue began after my pacemaker was set back from 60 to 50. Has anyone else experienced a dramatic change in energy after have their setting adjusted like this? Please help me understand.🤔


9 Comments

Can a lower base rate cause worsening fatigue? Not just yes but H--- yes!

by Gotrhythm - 2020-01-12 16:28:22

I'm no where near as smart or well-informed as some in the Pacemaker Club, but speaking from my experience, I can tell you, you will not feel well if your base rate is set too low.

In my case "too low" was 65. IO was functioning but I never felt really good. I'd go to exercise class and then sleep in the chair for two hours when I got home. It was hard to stay positive. When it was raised to 70, I felt like a different person. I felt really alive again.

You have been doing well for years with a base rate of 60. But at the same time your heart has been needing more and more support from the pacemaker just to maintaing a heart rate of 60. That's why the percentage paced has increased. I'm not surprised you lack stamina and feel exhausted with a base rate of 50.

A few people who are very fit feel well at 50bpm, but for most of us, staying alive with a heart rate of 50 is possible, but very, very hard. None of your organs, or muscles are getting quite enough fresh blood to function really well.

To lower the base rate because your pacing percentage has INCREASED is false economy of the STUPIDEST kind. If you are pacing more at 60bpm, that's because your heart can't maintain a heart rate of 60!

What they are saying to you is "Because your heart now needs more help, we will give it less help--in the name of preserving battery life." In other words, battery life means more than quality of life.

Here's the thing: Nobody but you can say what your quality of life is. You have to speak up. You have to tell them the setting change isn't working for you. Tell them you cannot live independently and take care or your resonsibilities, with a base rate of 50. If the pacemaker has to be replaced sooner, so be it. 

Go back to the clinic soon. Take an advocate with you. This problem will not get better on its own.

 

Thank you Gotrythmn

by Winter - 2020-01-12 16:50:54

I was thinking they are the experts and I must be crazy to feel that there is a connection between my fatigue and the reduced base rate.... on the other hand, I know that it all got worse after the change in setting... 

Thank you for your comments. Even before I read them, I decided that I have to act on this with the doctor who changed the setting. I will be respectful but insistent.

I appreciate you taking the time to respond to my post and the tone of your words convey a genuine interest in my well-being. Thank you soooooo much!

Lowered Base Heart Rates

by Marybird - 2020-01-12 22:01:31

I'm a newbie with all this pacemaker stuff, but I'm always very surprised when I read of others' pacemaker base rates set to rates of 50 or lower. I always wonder if doing that doesn't defeat the purpose of the pacemaker, and it doesn't surprise me that it would be accompanied by exhaustion, shortness of breath-essentially the symptoms of bradycardia. Maybe there are physiological reasons in some people for setting such low rates, and they do well that way, but just for the purpose of prolonging battery life?????

I've had my pacemaker for 7 months and have had two in office interrogations. The last one showed an atrial pacing rate of 84% and for some reason the rate response had not been turned on (should have been). The EP turned on the rate response and set the lower rate at 55 BPM. He explained that this would prevent me from pacing unecessarily to 60 when I was sleeping, but it wouldn't stay at 55 unless I was perfectly still as the rate response would kick in and pace as needed with activity. He mentioned it was to save some on battery life, though it was hard to tell how much more pacing I would do with the rate response turned on. And it's true, I don't see a rate of 55 very often, though it happens sometimes when I'm resting. The overall effect has made me feel better than before the pacer and the rate response has made a big difference. But I wouldn't want to have that base rate set any lower, say even at 50. 

Winter, it sounds as though you have a clear correlation between the lower rate settings of your pacer and the way you are feeling. Seems it ought to be a no-brainer for your EP to reset those settings to a higher rate-one you can live with! 

Appropriateness of a low minimum heart rate

by crustyg - 2020-01-13 09:32:05

Marybird: I understand your concern about a very low minimum HR - but it's individualised.  For athletic types with an enlarged heart who are used to a resting HR in the 30s, 50bpm is a big increase.  Over-pacing these patients' hearts has two major risks: you force them into hypertension (big heart, lots of blood forced into the aorta with all these extra beats) and they can develop tachycardia-caused cardiomyopathy (but usually with much higher resting rates, 70-80bpm).

So while a resting HR of 50bpm might appear to be making a PM redundant, it can still make perfect sense for some patients.  And there really is nothing boastful about having a low resting HR - you have what you need and make the most of what you've got!

FWIW I'm at 50/165 and am 100% paced.  My PM's reporting system has a pretty histogram of time spent in each decade of HR (50, 60..160bpm).  It's a convenient way to see over- and under-pacing.  I spend 65% of my time in the 50-59bpm range - which looks really lazy and sedentary - and 5% in the 160-169bpm range which is great for cycling up mountains.

In general, you want the lowest BP that you can have without feeling faint when you stand up (risk of stroke from brain bleeding seems to be directly related to BP) and for patients with damaged atria (reduces their ability to produce heart-ANP which tends to lower BP) you want the lowest HR that's appropriate for chosen activities.

HTH.

Some context...

by Winter - 2020-01-13 11:33:06

I am definitely not an athlete and actually required a pacemaker ten years ago when other illnesses affected the functioning of my sinus node with heart rates recorded as low as 34bpm. 
 

Initially I was investigated three times for lymphoma as nodes in all areas of my body, as well as my liver and spleen were all enlarged. I had several biopsies and was finally diagnosed with refractory extra pulmonary sarcoidosis affecting all these organs, my heart, lining of my nose and one eye, scleroderma in my back, forearms, lower legs and feet, one shoulder and my gums, a pre-myeloma blood disorder (IGG Kappa MGUS), IGG4 disease, IBS and sural nerve damage causing neuropathy in my lower legs and feet. 
 

I have been on weekly Methotrexate and biweekly Humira for the past ten years and live in a fairly constant state of pain and fatigue. The fatigue that has overtaken me since the setting change to a reduced rate about four months ago, is truly debilitating. I have decided to take Gotrythm's advice above and press for the rate to be set back up to 60. I just turned 65 years of age and have spent the last decade struggling daily to function and since the pm rate was reduced I am unable to go out (only 2 or 3 times in last two months) and even having a bath or shower requires a rest afterward. Thank you all for your input. Interaction with you on this forum has replaced my, 'I need to give up' with 'I need to speak up for anything that may improve my quality of life.' 🙃😊

Thanks CrustyG

by Marybird - 2020-01-13 21:34:59

Appreciate your explanations of low pacer heart rate settings in people who are athletic and have been used to low heart rates for much of their lives, or who have conditions (such as enlarged hearts, cardiomyopathy) whose conditions would be made worse if their heart rates were maintained with rates that would be elevated for them. It stands to reason, though I never thought about it, too high a heart rate for these people would tend to raise their blood pressures, causing even more problems.

I'm not an athlete either, but I have no ill effects at all at having my base heart rate set at 55. But it doesn't get to that point unless I am at rest, and then it feels comfortable. Even so, I wouldn't want the setting to be any lower than 55. 

 

Winter, sounds as though you have a very full plate, healthwise. Sounds as though you need to tell your cardiac team in no uncertain terms you need that pacer rate raised to where you can function!  I know I would in your shoes. 

Thank you,....

by Winter - 2020-01-13 22:24:04

Genuine interest and support is essential to health care. Thank you for giving me this suport. 

Winter 

Lower than 60bpm resting rate

by AgentX86 - 2020-01-13 23:24:38

There are other reasons for a resting rate of <60bppm.  Often people with SSS or a heart block will have a resting rate, prior to their pacemaker, in the 40s or 50s.  Often they've adapted to these rates and function quite well.  If the rate is raised it bothers them (or worse).  I'm one of those who dispise a high heart rate, though I bought it anyway (80bpm daytime to chase away PVCs).  At least at night my PM backs off to 50bpm so that I can sleep.  The only problems I've had at the 50bpm is that my PVCs occaisionally come back and if i get to the gym really early, I'm a bit more than a little out of gas. 

Thanks AgentX86

by crustyg - 2020-01-14 05:54:01

I know exactly how you feel: I got my resting HR set down to 45bpm - went to early morning Pilates next day, and it felt terrible.  Nothing to drive my HR up, and no blood supply to my leg muscles whilst lying flat on my back.  I was back at my local teaching hospital 60min later, pleading with them to reverse the change and put me back to 50bpm.  Which they kindly did.  Without a PM my resting rate is about 38bpm or so.

And I used the argument of pacing me out of atrial-tachys during exercise to help convince my EP doc allow me a much higher maxHR rate - initially 160, now 165.  And so far, so good.

It's all a compromise!

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