Resting rate

How to feel

by Gotrhythm - 2019-08-07 15:13:53

I don't think there are any rules for how one feels when settings are changed.

How you feel is how you feel. Whether you think how you feel is a good way to feel---well, that's really up to you.

Just be aware that there's more to how you feel than how easily you go to sleep. For me, there have always been trade-offs when my base rate was changed.

There's a lot of guess work in settings. Hope this works out well for you. And if it doesn't, well, good news: settings can always be changed back.

Well, I'm Confused.

by Marybird - 2019-08-07 21:17:20

Keith, did your EP say why he felt lowering your pacer threshhold was necessary? Was it to conserve on the pacer battery as he felt pacing you out of a HR in the high 40's, for example, was a waste of battery, or something?

I'm a newbie with this pacemaker business, and a lot to learn, but I wonder what the EP figures the point of a pacemaker is if the lowest rate is set so far below the normal resting rate. Guess it's an individual thing, if your native heart rate hangs out down close to that lower range of 45 and you feel comfortable when resting (or whenever it does that, guess it's ok?? 

I had my first complete device interrogation and adjustment of settings several weeks ago (I got my dual chamber pacemaker 8 weeks ago today), the lower rate had been set to 60, and they determined my atrial pacing rate at 84% (surprised the heck out of me, as my low heart rates in the 30's to low 50' were not  constant, so my own heart rate could still get into the 60's and 70's sometimes, when it felt like it.) I also have atrial tachycardia and the medication for that drives the heartrate even lower, but the pacer keeps it from going too low so I can take enough of the meds to keep the tachy under control. 

My EP turned the lower rate on my pacer from 60 to 55, he said it was so it didn't have to pace unnecessarily to 60 while I was sleeping. He said it would only go to 55 when I was perfectly still, so I wouldn't see it often, and I don't. They discovered that the rate response on the pacer had not been turned on so they did that, and the EP said the pacing rate would be expected to increase with that, but between the lower rate decrease and response to the newly activated rate response, we'll see what happens. I feel better with the rate response on, as the heart rate increases with my activities (and I'm pretty active), and doesn't just hang out in the 60's no matter what I do, as it did before.

I was sleeping very well (as I have been since I got the pacer), but that's also likely due to my being on a combination of meds that controls the tachycardia very well. So I didn't notice much difference in the sleep with the change from 60 to 55. 

I know that when my heart rate drops to around the mid-40's and below, that's when I start getting symptomatic (with activity), ie, light-headedness, difficulty in completing even simple tasks, feeling like I might pass out, and just overall tiredness to the point of exhaustion much of the time. So I wouldn't be happy at all if my lower pacemaker rate was turned down to 45. But you may feel differently, so time will tell on that one. I know my heart rate would drop into the high 30's when I was sleeping sometimes, and maintain a 30-40's rate when I'd wake up around 4 AM and just lay there and contemplate the world's vicissitudes (didn't go back to sleep) till (and sometimes even after) I got up at about 7:30 AM. But just lying there that way I didn't feel bad, in fact it was kind of cozy as I felt sometimes I could just slide into oblivion (I think I freaked out my cardiologist a bit when I described these early morning low heart-rate musings to him).

You'll see how that low pacer setting affects you, depending, I guess, on whether or not your heart rate falls to that lower rate when given a chance. As Got Rhythm said, you can always get that setting turned back up.

Mary

Resting Rate

by Keithwhelpley - 2019-08-08 09:16:44

Marybird, my change to the lower rate had nothing to do with battery life. I had gone to my EP because after 18 months of upper chamber pacing I begain having pacemaker mediated tachycardias (PMT). Wile there are different kinds of PMTs mine seemed to be related to an electrical loop created by the pacemaker itself (undesiraable situation). Luckily my ICD paced me out of danger. I don't know if I mentioned, I have a dual chamber pacer with an ICD.

This is a long story with many turns so please bear with me Mary. As we were going over the data this week from the interrogation that clearly spelled out these frequent VT events, I reminded my EP that originally, my PM was installed becasue of a diagnosis that later was determined to be false -- sick sinus syndrome (SSS). That mistake was revealed during a heart study, which showed I had neither SSS or any heart block.  The original diagnosis four monthls earlier was a mistake any cardiologist could make (I had come to the emergency room with erratic heartrate that didn't subside after four days of observation). The single lead PM was placed by a general cardiologist and I was sent on my way. After recovery, I began getting on my bicycle again although it was hell because of both the PM and the drug they put me on -- Metoprolol. But I passed out and crashed. It was a VT. My PM captured the data.

That led me to the EP who conducted a heart study and performed a supraventricular tachycardia ablatioin. After the procedure, he told me I had neither SSS nor heart block. But because I had experienced at VT, I needed an ICD and had put one in. I expected that and was happy. But the new device also came with a pacemaker. I asked why, since the original diagnosis weren't accurate. All he said was "ask your first doctor." I've learned that doctors are reluctant to question other docs especially if they refer patients to them. 

So here I was with a functioning pacemaker set for 60 bpm and programed to treat SSS, which I didin't have. And that may eplain why, for the whole period of having a PM, it just didn't feel right. There alwasys seemed to be other beats going on in my chest, yet interrogations all showed my PM was functioning properly. UUUGh. Good for IT, I said. But what about my heart?! I finally just shut up and tried to build a new reality.

Then just two weeks ago little VTs started happening. My NEW cardiologist who had no connection to the original one looked at my pacemaker data and said ..... "I like what your intrinsic rate is doing here." My jaw dropped. Finally, someone who loves my heart like I do. We may just turn that PM off, she said. She ordered some plumbing tests (that what she calls her thing. She's a plumber, not an electrician) just to make sure I didn't have some other incompetence that would require the PM. And then she sent me to an EP. And he agreed. Rather than just turning it off, he brought the low rate all the way to 45bpm so that I virtually would never pace in the upper chamber AND it would eliminate the tracking that pacemakers do. He left the ICD completely enabled in case I needed to be paced out of a dangerous rhythm. HOORAY.

Still nervous about the move, but this will begin day 2. The first day I dindn't feel very well. But already today Im feeling pretty awesome. My resting rate likes 50bpm. I already feel my sleep is deeper. But I'm knocking on wood all day long.

So, Mary, this is a long answer to your questions. But the things I am finding out are that each of our situations is unique to us. So you can read others' experience with PMs. And while it may not sound anything like your own, I gives you a sense of the spirit which others deal with it. My spirit is: Don't give up on your heart. It wants to do good. Practice good nutrition because food can heal and always question the things happening to your body. All those months ago, when I went in for erratic heart rates, if they had put me on an IV of magnesium, I would not have a pacemaker or ICD. It was through my own questioning and research that I discovered something the doctors didnt -- my body was near depleated of magnesium. That depletion kills, and its weapon of choice -- ventricualr tachycadias.

Thanks, Keith, for Taking the Time to Explain Things

by Marybird - 2019-08-09 16:21:18

I have to say this world of pacing, ICD monitoring and shocks is so new to me, it's definitely a learning curve and I'm still on the uphill climb.

I think I recall you had earlier posts describing your situation, basically that you'd originally gotten a pacemaker originally during a hospitalization during which they diagnosed you with SSS that later on was proven (during that EP study) not to be the case, but since you had had episodes of ventricular tachycardia your EP( during an ablation for SVT) put in an ICD, one with a pacemaker as well since you had had one before. 

So with that, you got into a pacemaker-mediated tachycardia that's made your life miserable, and your newest cardiologist has turned down the lower rate so low it's likely you won't pace much, hopefully short-circuiting the PMT. 

But the ventricular tachycardia, is that the result of the PMT or did you get into that all by yourself, or do they know at this point?

In any case, hopefully you'll be able to get it resolved as much as possible, and feel better.

Mary

Wow Mary

by Keithwhelpley - 2019-08-09 17:30:09

That is a perfect recitation of this and past posts. I never know if I just sound like a babbling idiot.

In answer to your question, I think they can tell what is causing the PMT through an interrogation. That is why they almost insisted on turning down my atrial pacing. I told them that I would be willing to wait until after tests, but they seemed to know exactly what was happening. I haven't had any PMTs since this was adjusted three days ago. I feel better in one sense. My heart is not racing or too slow. But my lungs suddenly aren't working right. Breathing is a bit off. I'm hoping it's just a matter of them learing to work on their own again.

Strangely, my dietician friend warned me to make sure I"m meeting all my RDAs of the heart minerals. She said that with a pacemaker, you can get sloppy with making sure you get enough because the device is going to send a charge into you that will trigger the beats regardless of whether you have enough magnesium, potassium, salt and calcium. When you get off the pacing, your heart will need all thosse minerals to keep your intrinsic rate smooth and stable. I thought that was good advice and I hadn't even considered it.

More to come, I'm sure.