Initial Low HR Setting

Welcome to the club nobody wanted to join

by CyborgMike - 2020-06-26 20:38:28

I have a similar profile, but a different underlying diagnosis (bradycardia and exercise intolerance). My resting HR had dropped to 40 with dips to 25-30 at night when I got my PM. My docs started me at a floor of 50bpm to start with rate response turned off, so it would be closer to what my body was used to. Some docs just drop the device in on the "default settings" of 60bpm (resting average for an adult). I tried a few setting in the hospital before I left. 60 to me felt like I just had a Starbucks Venti Coffee, also. After some settling in, 50 seemed too low, so I comprimised and mine is 55 resting (like watching TV) and drops to 50 while I sleep. You need to work with your EP to tune your settings over the next 2-3 months, expecially if you are a runner. Once you are healthy you can see how "rate response" is working, which is the pacing at the higher end and with activity. That takes a lot more work to get right. Be assertive, but also don't change too much at once. Make small changes, let your body adapt for a while and then decide if you want to make more changes. Your EP is probably hoping that your body adapts to the high resting rate, so they took a more aggressive approach (start high then go low), whereby my EP took a more conservative approach (start low then go higher). Good luck!

Thank you!

by ShanaBer - 2020-06-26 21:24:47

Thanks - I really didn't know what to think. I wish someone had explained this to me initially. I like my EP but getting a response or questions answered has been a real challenge.

Be Assertive

by CyborgMike - 2020-06-26 23:27:51

Unfortunately, there is a lot to understand and EPs and their nurses don't always have the time or the patience to explain it all. In my experience, you have to be assertive, especially when things don't feel exactly right. You might also need to switch EPs if you aren't getting the attention you need. I see you are also in OC. I started out with a group at Mission in South OC, but had my device implanted at Scripps (in La Jolla). I still go back to the EP at Mission, but the support at Scripps is 10X better. They probably do 100X more pacemaker implants annually, so they are much better at tuning and monitoring. I've heard UCLA also has a very good program. If/when everything is working well with your pacemaker it will be invisible. You likely won't set any 10K PRs any time soon, but it really fades away into the background. 

I hear ya'

by AgentX86 - 2020-06-27 00:01:44

My heart rate was in the low 50s during the day, falling through the 40s and then to the 30s with three-second pauses.  Then it got worse.

Because I had an AV ablation at the same time, they had to start my pacemaker out at a minimum heart rate of 80bpm.  Talking about being wired!  It was tough sleeping, at first, too.  The plan was to crank it back to 70bpm after a month, then 60 after another month.  At 70bpm was getting bigeminal PVCs, so they moved it back up to 80bpm, where I am now (50bpm at night).  I'd still rather have it lower but PVCs are the pits.  Don't want to there again!

PM techs are usually the one's doing the tuning.   A good PM tech will make the necessary changes, then tell your EP what he did.  The PM tech will know more about the PM anyway.  The negotiation, at least the first level, is with your device tech.  You'll have a lot more time with the device tech than you ever would with the EP (as it should be).  Study your PM and ask questions.  Decide what you need and read up on how to get there.  Your device tech will help you get where you want to go.

adjustment

by Tracey_E - 2020-06-27 09:49:58

There is an adjustment period, for sure. I went from a rate in the 40's all my life (congenital av block) then it dropped to the 30's. I felt like I'd been mainlining coffee at first but eventually it felt normal.

Sometimes lowering the lower limit will feel better. In my case, that wouldn't have made a difference because with av block my own sinus node is setting the rate, the pacer is making sure the ventricles stay in sync so playing follow the leader rather than setting the pace. So, depending on why you are paced, they may be able to adjust it but I'd give it some time. 

Sleep post pacemaker

by Gotrhythm - 2020-06-27 15:58:16

I just want to add one thing to the comments aboove.

You mentioned  having trouble sleeping becuase your heart is racing.

Most of today's pacemakes have a sleep mode that lowars the resting rate.

Ask your EP lowering your resting rate at night.

It can't hurt to try. After all, they don't know your you are setling in with your pacemaker unless you tell them..

My EP's Response

by ShanaBer - 2020-06-27 19:41:45

I did contact my EP's office, explained what/how I was feeling and tried to get an appt to see him, they were going to see if they could fit me in. When the office called back his response was that he did not feel what I was experiencing was related to the PM (!?!) and that he would see me at my follow up appt in 2 weeks. Honestly not sure how I will manage 2 weeks of feeling like this so will likely call again on Monday and see if I can move the appt up sooner if that is even possible.

Was 60, now 50

by bobjohnson - 2020-06-28 02:24:16

I started at 60 and had the same symptoms as yuo.  The doc turned it down to 50 because I'm pretty fit, though not as fit as you I'm sure) and that feeling went away. I do feel a bit less energetic now and have some faintness at times when working out though. Only three months in so working on it. 

Same

by PacedNRunning - 2020-07-03 06:00:28

I was at 40 at implant. It was too low because it caused me to go into junctional rhythm. So we bummed it to 60! Felt wired. Finally settled on 45. I'm a runner and was use to 40's and 30's at night so 60 was lik caffeine to me. I've been at 50 too and it's about the same as 45, the only difference is I pace more. I hate pacing. :). So I like 45. But my pacemaker is for heart block not Bradycardia so I'm safe to be low at 45. If your symptomatic I wouldn't go below 50. 

Update - After Adjustments

by ShanaBer - 2020-07-13 20:56:52

I had my appointment with the EP, that ended up being an appointment with his Nurse Practioner, this last Friday. The 30 min appointment ended up being over 4 hours and  was exhausting. I did get the PM adjusted. They didn't change the HR but adjusted other settings that had an immediate impact and I felt 100% better. However in the testing it appeared that only one of the leads (to the ventricle) was working properly. The other was intermittent and they were concerned it may have come loose. So off to x-ray I went. While waiting to check in there I had some, what I will say were very disturbing, scary, symptoms where it felt like the PM itself was beating and going to jump out of my chest. You could actually see it moving and it made my entire shoulder and arm move/twitch hard, as well. Needless to say I was freaked out as was the receptionist and she called a nurse for me and 4 came...lol. They wanted to call 911 but I told them it wasn't a heart attack and I really just needed to talk to the EPs office. So they finally got in touch with the NP who told me if I could, to go have the x-ray and then they would decide what to do. If the lead was loose in my heart I would have to go have emergency surgery to remove/re-attach it or if it had just moved and was working erratically they would turn it off and I could have surgery the following week to replace it. The good news when I went back to the EP's office was that the lead was still in the same place it had been after surgery (whew!) but the PM thumping or whatever you want to call it was still continuing intermittently. So they started testing again with different adjustments to see what was going on. One of the techs (I saw 4!) actually found what was causing the weird issue and said what I was feeling was the PM pacing (on the lead that is having the issue) but the output was high, she played with it a bit and could actually make it happen from a little to severe and eventually turned it way down. The atrial lead is still not working all the time but it is enough that it is not necessary to put in a new one right now.
I felt so much better but when I finally got home I was exhausted both physically and mentally and my entire left side, shoulder to waist, front and back, was sore as if I had done a really hard workout. I am also all bruised now at the implant site. I was pretty sore all weekend but managed a 3 mile walk yesterday and another today that felt great.

I won't be going back to the EP's office any longer for adjustments as they have referred me back to my regular cardiologist for that.

My questions now are regarding what should I be concerned about with the atrial lead  working only intermittently? Is this a concern/should I be concerned? What are the implications? I am concerned that it may cause the CLS to not function correctly since from the information I have seen from Biotronik it uses both leads to form the closed loop?