Settings compatible with exercise

been there, done that

by Tracey_E - 2016-07-25 08:43:20

I could have written that :) 

When you were going along fast then suddenly dropping, that was a safety feature designed to help with afib kicking in. It sees the atria going too fast, decides it's afib and suddenly starts pacing 2:1 instead of 1:1. In afib, that's helpful. When working out, not so much, because suddenly it's waiting 2 atrial beats to pace ventricular once. If you have no history of afib, they can turn this off. Easy fix. 

Second thing going on is the upper limit. Theoretically our atria beat normally with av block, all we need is the pacer to kick in and keep the ventricles in sync. The pacer can only pace up to the upper limit so whatever the atria is doing, the pacer can't go faster than it's set to go. They often start this at 120-130, which you found out pretty quickly is not enough for someone young and active. It sounds like they turned it up to 160. Different pacers have different max upper limits, ask what yours is. Most of them only go to 180, which means they won't set it higher than 170-175 so that's as high as you'll be able to get. A very few go to 220. When we work out, it's best to stay about 10 bpm under wherever we are set. When we hit the upper limit, the atria is going faster than the ventricles so the heart is out of sync which feels awful and can end a work out quickly. 

When mine was at 170, I tried to stay under 160. This got to be a problem because sometimes I got SVT (super ventricular tachycardia, when the atria suddenly shoots up higher), so I'd spend half my workout waiting for my rate to come down under 160. I eventually took a low dose beta blocker to keep my rate down. When I got a new one in Feb, they gave me one with a max rate of 220, and set my upper limit at 190 so I stopped taking the beta blocker. I don't get over 170 very often, but that extra bit makes a difference for me.

fyi, if you hit the upper limit when working out, put your arms on top of your head and breath in slowly through the nose, out through the mouth. This expands the rib cage so you can get more oxygen in and bring the rate down faster. However, it's best not to push it until you get the settings sorted out! It's normal to take a few tries to get it right because they like to make changes in small increments. If they don't seem to be able to find the sweet spot, ask to get on a treadmill so they can watch and adjust. This can save multiple trips back. That's how we figured out I had the SVT and knew that no amount of adjusting was going to fix it becasuse sometimse I went faster than the pacer was capable of keeping up.

One last thing, ask if rate response is turned on. This is a feature for people with sinus issues, when the atria doesn't respond well to activity so the pacer kicks in with atrial pacing. Sometimes they leave it on thinking it won't be needed, however sometimes it can compete with our sinus node (which works normally with av block) and cause issues. So, if it's on, you might feel better with it off. 

Know that this is perfectly normal! They send us home with a good guess, then once we heal and are up to being active again, they adjust as needed. 

Thank you!!

by Kcambridge - 2016-07-25 11:54:54

TraceyE, thank you! That was such a helpful response. Exactly the kind of explanation I needed, and thank you for the tip about what to do if I max out - it's an awful, scary feeling, but I will try what you suggest next time.

In fact, my pacemaker's set to a max rate of 190 (I think it's capable of up to 220), and so I will ask about the other settings you are suggesting like rate response and that afib safety feature.

Thanks again for giving me some hope, and have a lovely day!

any time :)

by Tracey_E - 2016-07-25 13:04:31

Good luck!!! AV block is one of the easier problems to fix so there's no reason not to expect to get back to 100%. Most doctors don't have a lot of active patients and no two of us are alike so it's normal to  experiment a bit. If you have a doctor who's listening and responsive, that's your best weapon. 

If you are set to 190, then the max is most likely 220, kudos to your doctor for choosing well. I don't think any out there have limits other than 150, 180 and 220. 

One last thing, just to muddy the waters :)  I have rr on. Most with av block do better with it off or don't notice a difference, but sometimes my rate doesn't go up enough on its own so turns out I do better with a little kick from rr. So, turning it off was just a suggestion that works for a lot of people, but not necessarily everyone. Keep an open mind as they experiment.

Good luck!!!!!! Let me know how it goes. 

Fixed it!

by Kcambridge - 2016-08-25 18:20:07

Hi TraceyE,

Just wanted to say than you for the advice and encouragement. A week ago, I finally got in for a stress test. After three rounds of running on the treadmill and subsequent adjustments, the EP team was finally able to get my pacemaker set so that I could safely get my heart rate up to 184 before going into 2:1 block. I'm now able to run, and even (if you can believe it) dragged myself through a Sprint Triathlon last weekend. I'm feeling so much better, and I am so grateful for the encouragement that you and everyone else on this forum has provided!

Take care,

Kate