Hi

Hi all. Just happened to come across this site, so it's obviously my first time posting. I had no idea there was a support group like this for people with PM's!
The main reason for posting is this; I've had my PM for 2 years now. I have a complete congenital heartblock and have had a slow heart beat all my life. I finally had to get my PM when I ended up in the ER and my heartbeat was below 40. The day after my PM was put in, I felt this tremendous surge of energy. I went on my antibiotics that same day and as soon as those kicked in, the energy was gone. I assumed once I recovered I would find this new energy my Dr. had been telling me about. Thing is, I've had it for 2 years, and I still don't feel like I have anymore energy than I did before I had the PM put in. Some of my symptoms have gone, I now sleep better and have less pressure in my head, but no energy. Is this a similar theme for others? And does anybody have a lot of pain in their left shoulder? I almost feel like I have arthritis coming on...

9 Comments

Short lived burst of energy

by ElectricFrank - 2010-03-22 02:03:35

Any effect from the antibiotics should be long since gone.

Do you have any information on the settings they have programmed into the pacer? It is a good idea to request a copy of the pre and post programming report from your checkups.

A number of us here have experienced the effects of inappropriate settings.

One that I would be suspicious of is the Upper Tracking Limit. This is the maximum HR that the pacer will pace your ventricles at. Most pacers come from the factory with it set to 120bpm. Laying around relaxing after the initial implant would keep your HR below that limit, but as soon as you get active it not only holds your HR down, but creates crazy skipped beats.

Another is a feature called Rate Response which senses body movements and uses it to control your HR. It can be handy if your atrial pacemaker isn't working, but with a simple block it isn't necessary. Where it can cause problems is when it competes with your natural pacemaker.

I had both of these problems early on and had a bit of a bru ha with the doc over my demands that my upper limit be raised to 150 and Rate Response turned off. Once done I felt much better and at 5 years later and near 80 yrs I go Jeeping, hiking, and have a good old time.

These may not be your problem..they aren't magic. It's just an example of what an effect settings can have.

frank

love rate response on

by Hot Heart - 2010-03-22 05:03:36

i kept hearing about all these people with energy and i felt awful, then last oct got my rr turned on, wow i feel great, try it and see

Hi

by Gellia2 - 2010-03-22 08:03:09

I have to agree with Frank. I, too, have a PM for CHB and have had one for 35 years now. When I got my first dual chamber (1982), the settings were preset.
Now they can fix them to suit you much better. My drs have always just left me with factory settings and I had continued to be short of breath until I listened to Frank.

Now I have my rate response turned off and the shortness of breath has dramatically decreased! Next stop, I'm getting my upper rate increased to 150, too. Running up the stairs takes me to 120 and then my rate starts to skip around. A little higher and I think I'll be all set! It's only taken me 25 years to get here!! My drs just all followed one another with the exact same settings and never really all got together to ask me about changes.
If it weren't for Frank, my cardiologist kept telling me he thought it was my valves (EF is great!) and maybe we should consider replacement! NEVER! My valves are just fine and my settings are much better with a few tweaks.

Be sure to tell your dr that you would like your settings reviewed. With a few modifications I'll bet you'll get that energy back.

Best to you and good luck!
Gellia

nodding in agreement

by Tracey_E - 2010-03-22 09:03:09

Ditto what Frank and Gellia said. I also have CCHB and have felt a huge difference after changing my settings. Over the years, I've had my upper limit raised, my rate drop response turned on, rate response turned off, the afib safety thingy turned off. Keep on them when you have it checked, don't settle for not feeling good. Sometimes it takes more than once to get it right so don't give up.

If it's been two years, you might also want to have a physical and a sleep study, don't just assume it's cardiac and pm settings. There is not a direct link that's been proven, but many heart patients seem to turn up with apnea.

And Harley's advice about good sleep and eating habits and working out are spot on. I've battled insomnia for years and being good about my food choices and regular exercise makes a huge difference in my ability to sleep and my energy level. It doesn't matter how healthy our hearts are, if we don't take care of ourselves we're not going to be full of energy.

Ask your dr about the shoulder. Sometimes physical therapy helps. Sometimes they can reposition it when they replace the battery if placement is the problem.

The quest for more energy...

by harley63 - 2010-03-22 09:03:24

Hello and welcome to the club....

You are in the right place for support, encouragement and information... at times it is about stuff other than heart topics and some of us tend to be a tad windy.. so bare with us. This is an awesome group of folks, I feel that you'll feel at home here. 'Nuff on that for now...

Okay... my two cents about the 'energy' that seems to raise this very question you asked... I've had my pacer for just over 3 years and the allusive energy peaks for days on end then like air out of a balloon - poof it's gone. It's been said that I tend to go go go like the Energizer bunny til I fall down.. so basically I use up all my 'energy' and then my body reminds me to recharge! No pun intended! Oh boy.. I've ventured off topic... back to the question... this energy deal.. I think, from my experience, that one must/should get into a routine of proper hydration & eating routine, good sleep habits... like regular sleep time and in bed vs in living room (with no pets to wake you!) and some form of exercise... walking or workout routine.. as that will build endurance and strengthen muscles which in turn increases your energy.

Disclaimer: This is my 'opinion' and by no means should take the place of the recommendations of your Physician.

Again.. welcome and I hope that you will soon find the increased energy you seek. Let us know what works for you.

Zoom...zoom..
Harley63

Rate Response

by ElectricFrank - 2010-03-23 02:03:08

Rate response is intended to be used for conditions like SSS where a reliable natural sinus pace isn't available. In that case turning rate response ON can have a very beneficial result, but only if it is set up right. Since RR senses body movement (some of the new pacers sense breath rate as well) there are a bunch of settings needed to tailor it to our individual bodies. This is beyond the skill of most cardiologists, and should be done by an EP or pacermaker rep. Ideally it is done while you are exercising on a treadmill.

For those of us with conduction blocks it is best to have RR turned off. In theory it shouldn't interfere with our own natural pacer, but that is only true if it is adjusted properly which is almost never.

frank

stress test

by Tracey_E - 2010-03-23 08:03:28

JS, you could easily be getting over 150 or 160 when you exercise and a stress test is the easiest way to see what's going on. They should be able to raise your upper limit. Most of them go to 180, one or two go as high as 220. With CHB, our atrial rates are normal and go up with exercise, but the ventricles only beat when the pm tells it to. If our atrial rate gets higher than the pm can pace, we are out of sync and skipping beats- it doesn't feel good!

Something else that may be happening (stress test will diagnose) is pm's have a safety feature that detects when we're in afib and it puts us in an artificial block to keep our hr from going off the charts. So if your atrial rate is 200 from working out, the pm may suddenly start pacing you at 100 because it thinks you're in afib. They turned this feature off on mine.

If your regular check up is coming up, you might want to make a written list of questions to take with you. I will have a list of things I want to ask but if I don't write it down I'll get there and forget half of it. Good luck getting it straightened out!

Thanks

by jmsconnie - 2010-03-23 12:03:25

Thanks everybody for the great advice already. It's wonderful knowing there are others out there with a similar situation.
As far as I know, my rate is set between 60 and 150 or 160. I can't remember exactly. Even with a high pace, when I start to exercise intensely, my hear starts getting crazy and skipping beats. IDK, maybe I need to have a stress test done or something. Haven't had one of those since I was in high school or college.
We'll see, I have a routine check-up in 2 weeks.
Thanks again everybody.
JS

beta blocker

by Sgood - 2010-03-24 10:03:12

If your dr has put you on a beta blocker (like toporol) it MAY make you feel a little tired. Especially if you already had a low heart rate or blood pressure to start with. But don't under estimate the power of a adequate sleep and plenty of water! You'd be amazed!

You know you're wired when...

Your pacemaker receives radio frequencies.

Member Quotes

I’m healthy as a horse because of the pacemaker.