Rate Response

I had my medtronic MRI compatible pacemaker installed mid July 2012 for a diagnosis of sick sinus syndrome. They had my low set at 70 but because I wasn't sleeping they lowered it to 60. I guess they had my rate response feature on until yesterday when they turned it off. I have been complaining to them about extreme fatigue in the afternoons and when they had me walk up and down the hallway my pulse rate was 90 when they turned the rate response feature off to see what happened. They think my heart will pace itself without needing this feature turned on. Does having this on or off have anything to do with my fatigue? I do seem to feel fine today but will see this afternoon if I crash and burn like I have been doing every afternoon and then having to go to bed by 7:30 p.m. I am only 62 and think it is too early to succomb to old age! I work full time, desk work, but would like to have enough energy in the evenings to be able to do something! Thanks for any advice.

7 Comments

Maybe

by IAN MC - 2012-09-27 04:09:05

Hello Mary. Yes it is possible that turning RR off will reduce your fatigue; it certainly did with me!

Having it on unnecessarily is bit like walking at a fast pace all day ,it would tire you.

Other things can cause fatigue of course eg drugs that you may be taking or other medical conditions but I hope in your case switching off RR will be the answer.

If your sinus node works OK you don't need RR but I sometimes wonder if some of us have sinus nodes which have slightly impaired function i.e.the sinus node isn't bad enough to justify RR but isn't quite good enough to give us a totally normal life. Just my theory though !!

Best of luck

Ian

Yes

by ebfox - 2012-09-27 10:09:09

Hi Mary,

Yes, Ian is correct, particularly about how the sinus node degrades over time. It may work fine at times and not so well other times. As we age the "not so well" increases of course.

It will be up to you regarding whether they turn it back on- if you decide to have it turned back on, get them to adjust it so that it increases your rate gradually, not abruptly.

Good luck,

EB

Another thought

by ElectricFrank - 2012-09-28 03:09:42

I forgot to mention BP. Mine can get pretty low when I'm relaxed and inactive. Just before getting out of my easy chair mine was down to 90/53. I'd about figured on going to bed early as tired as I felt. I got up and closed some windows then noticed that I was feeling a lot more chipper. After spending some time working on learning some new software I checked my BP. 122/71. I just have to remember to get up and move around to get the blood going to my brain.

frank

LSS

by ElectricFrank - 2012-09-28 03:09:57

How about a new diagnosis, Lazy Sinus Syndrome? (:

The whole system that controls our HR in response to activity is not a simple thing. This is why a single measurement in the docs office is useless. Add to that the many other reasons why we feel low energy. Periodically I go through a time when I feel wiped out, but even with my own ECG and an exercise bike can't figure it out. I sometimes think it is allergies, or a virus, or...

So it may not even relate to the pacer.

The best way to check your sinus response is to measure your HR after at least 10 minutes of resting. That means no TV, conversations, or alcohol. Now get up and walk briskly around the house or whatever is an active level for you. Check HR again. If your natural pacer (RR off) is working right you should see a lively response to the exertion. I would expect my resting to be down in 60-65 range and the mild exercise rate to maybe hit 90. A real good climb up a hill will peak me out in the 110-130 range depending on something???

But the numbers aren't as important as the response. What's nice about having these numbers is you have something to compare with after changes in settings.

This is what we don't get with 10 minute doc appts.

frank

frank

Thank you

by Good Hearted Mary - 2012-09-28 06:09:59

Thank you very much to all those who commented! I pay so dearly at the doctor's office (or my insurance does) to ask these questions but I never get adequate answers when I am there. At the Alaska Heart Institute where I go they have a main waiting room and then for pacemaker folks they shuffle us off to another smaller waiting room in the back. I must say that I had never met or been around anyone else with a pacemaker until I ended up in that waiting room! Holy cow - there were quite a few of us and I do believe I was the youngest! I feel much better with the rate response feature turned off! I am going to try the experiment mentioned in the above comment from Frank to sit still for 10 minutes and then get up and move around and see what my heart rate is at my own pacing. I know when the RR was on that just walking two doors down the hall at work to the bathroom that my HR jumped up to 130! On my own I don't believe it will go over 90 for mild exertion. I will check it out. I don't take any other medications that could be attributing to the fatigue so I guess it is just, as Ian suggests, RTWSS ...Refuses to work sinus syndrome! ha ha, I like that diagnosis. Cheers to all - it's finally the weekend!

Frank

by IAN MC - 2012-09-28 09:09:34

Apparently sinus node disease is progressive with varying grades as you get older :-

i) SLSS .. slightly lethargic sinus syndrome

ii) LSS .. which has been well described in the literature by yourself

iii) BISS ..Bone Idle sinus syndrome

v) RTWSS ...Refuses to work sinus syndrome

Cheers

Ian





Ian

by ElectricFrank - 2012-09-29 12:09:13

I'll put those designations in my pacemaker file. They should make us both seem more knowledgeable when responding here on the site.

frank

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