What is your sleep rate???

I doubt that the PM is keeping you awake

by crustyg - 2022-01-18 13:04:21

Your initial assumption is that being paced is disturbing your sleep.  I doubt that.  The *mental* aspects of being paced might be more important as a cause of disturbed sleep, as this activates the sympathetic nervous system, which results in a stronger beat of your heart every time there's an activation (whether from a normal SA-node, or your PM).

Shortly after first implantation I too had a lower PM rate of 45BPM, which was too low for me to do any static pose work (Yoga, Pilates) so I had it reverted to 50BPM.  I have an enlarged, athletic heart and lying on my L side, I can easily feel every beat, and am paced 100% of the time.  If I wake from a dream, the beats are powerful, but still at 50BPM (most of the time), and it takes me a while to calm down and get my heart back to a much less powerful beat, and lying on my R side for a while helps with this.

We've had quite a few folk here who need 60-70BPM minimum during the day, but can't sleep at that rate, and some PMs support a lower rate for sleep, often 50BPM.  I am sceptical that there would be any physiological reason to suppose that 45BPM would provide better sleep than 50BPM, with everything else the same. But if you have an autonomic neural disturbance then I think it's likely that chasing a 'normal, physiological' sleeping HR is likely to be fruitless.

PM Sleep Rate

by Marybird - 2022-01-18 13:57:20

My pacemaker's base heart rate is set to 55, with the rate response turned on. I also have sick sinus syndrome, and the EP explained that the 55 setting was so I wouldn't pace unnecessarily while I was sleeping ( doesnt need to be 60), but with any activity at all, the heart rate would be higher, thanks to the rate response setting. I also noticed I felt MUCH better after the rate response was turned on, as my heart rate will increase to accomodate my activities ( except for attempts at heavy exercise, due to the rate control meds I take- metoprolol and diltiazem, to control my tachyarrhythmias, including afib). Those settings have worked well for me for 2.5 years that I have had the pacemaker.

I'm not sure what people are referring to when they say they feel the pacing, my atrial pacing rate is at 94% currently, but I'm not aware of when any pacing. Though thanks to the pulsatile tinnitus I have I can "hear" most heartbeats and so am aware of the strong, steady heartbeats that I think have to be in response to each zap from the pacemaker.,  But I don't feel anything normally. 

What I do note at night, when I am awakened ( from other things, not my heart rate) is the lower heartrate that increases upon movement, sometimes substantially when I flip to my right side ( sometimes over 100 if I check it), but more appropriately with other movement or I get up. 

I'm happy with the 55 set as my lower rate, so to me a rate set as 45 or even 50 seems very low, though I know that will vary depending on the person. In any case, that'd be a discussion with your doctor, perhaps with trial and error, in finding your optimum lower rate. Whatever it happens to be, you most likely won't see it very often, even during sleep, once the rate response on your pacemaker is turned on. At least that has been my experience. 

I like it high !

by Gemita - 2022-01-18 14:22:39

Hello Daisies,

My Base Rate (sleep rate and day time rate) is set at 70 bpm and that suits me just fine.  I can tell it suits me because I am able to sleep for longer periods now than before my pacemaker when my heart rate often dipped to the low 30s/high 20s.  These low heart rates would result in pausing and worsening arrhythmias and I would frequently wake gasping for air.

Many of us say and I certainly do, that what determines a perfect heart rate is to go by “how you feel during your activities and how you feel at rest”.  You say you are not sleeping well. This could be for a variety of reasons, not just heart rate related.  You might suffer from  sleep apnea for instance or other sleep disturbances or you might have other health conditions.  An in hospital sleep study would be a good idea if you haven’t already had one, to see what is happening at night.  

As for the optimum setting for you, it will be very much trial and error with base rate settings and keeping a diary of what might be waking you to determine what setting is right for you.  There is no doubt that for me the first three months following my dual chamber pacemaker implant was a difficult period of adjusting both physically and emotionally.  Perhaps it is the same for you too?

Optimal sleeping heart rate

by AgentX86 - 2022-01-18 15:09:16

This is sorta like:

Reporter: "How long should a man's legs be?"

A. Lincoln: "Long enough to reach the floor."

The answer is somewhere between what works for you and what your EP thinks is good for you. Some negotiation is normal for many of these settings.  Only your EP knows for sure.

My pacemaker is set to 50bpm at night (12:00AM to 6:00AM)  and 80bpm during the day. There is some transition time (best I can guess, 5min - I don't notice). The 50bpm because I was having a hard time sleeping at 80 and 80 because I was having trouble with PVCs after exercise. I'll probably ask for a reduction to 70bpm now that I've had the PM for a few years and the times to 12:00AM and 8:00AM (I'm retired now ;-). The timing for the nighttime rate doesn't really matter much.  I've negotiated a very fast/sensitive rate response so it'll come up 10bpm by just standing up and and walking a few steps. This won't work for everyone but it's a tradeoff (wide day/night difference and very fast RR) that works for me. It would probably drive many, crazy.

sleeping

by new to pace.... - 2022-01-18 21:37:16

i was recently told the reason i was sleeping better is that i now am taking a supplement that has Calcium in it For Osteoprosis. Calcium is suppose to make one sleep better.  Before was waking up every couple of hours than up at 4am est.

  Also if you are not drinking enough water can cause sleeplessness.

new to pace

Interesting Comments

by MinimeJer05 - 2022-01-18 22:07:26

Hello all,

just commenting on all of the feedback and less on the main post as I find this all fascinating. I don't think I have a "sleep setting" turned on. I was simply told that my PM won't let me drop below 60. I generally sleep at 62-70ish, so that's never been a problem. 
 

They did mention something about 160 is my cap, but I don't think it actively tries to lower it at 160?

I noticed immediately after my PM implant that I was jolted awake and it was quite intense -- heart was racing, I felt like I was in a panic and that definitely lessened over time. Now, I find that as I'm falling asleep, I sometimes gasp for air or feel like I'm choking for a second. I underwent both an at-home and in-clinic sleep study and discovered I have moderate to severe sleep apenea. Currently awaiting my CPAP machine, but was just told it might take months. I have no doubts that I will sleep better and feel more rested (less fatigue) once this machine arrives. 
 

It's easy to forget how much is related to getting good sleep and how so many things can ruin it that aren't always heart or PM related. 
 

Jer

Sleep Mode, Base Rate, Etc....

by Marybird - 2022-01-19 16:36:28

Hi Jer,

Just wanted to say I don't have a sleep mode setting on my pacemaker either, it's just the lower base rate ( 55 for me) set by the EP,  he said I'd only see that rate during periods of no activity, like when I was sleeping ( HA, he had no idea what an active sleeper I can be), because with any activity at all the pacemaker rate response would kick in and raise the heart rate to correspond with the activity, and it does. I only see the 55 ( if I check) sometimes when I first wake up, and am more or less half-awake, coasting and not moving, and sometimes when I'm playing couch potato- but not that often as any movement bumps up the HR at least into the low 60's, higher with more activity. 

You probably know this, but your upper rate set at 160 means that your pacemaker will not pace your heart above that rate, if you see a heart rate above that, it's your heart's activity without the pacing. The pacemaker won't, as I understand it, lower your heart rate, ie, won't act to lower your rate to 160 or less. 

If you're suffering from sleep apnea, you will probably ( once you get used to the apparatus on your face), notice a big improvement in the quality of your sleep. My husband (who doesn't have a pacemaker, but he does have asthma) had severe sleep apnea, to the point where he could hardly function during the day. He noticed a huge improvement in his sleep when he got his CPap equipment, that's been years and he still sleeps like a baby all night. He wouldn't go without that equipment now, even hooks it up when he takes a nap ( he can be a nightowl sometimes). It's just too bad you have to wait so long for,the equipment, maybe it won't be as long as they have told you.

Sleep Mode, Base Rate, Etc....

by AgentX86 - 2022-01-20 12:24:00

Mary, are you CI? Rate Response? Many have Bradycardia but have a normal response to exercise.  In this case, the PM only works when resting. Indeed it may be set below the resting rate so it just can't get into the trouble area. As you would exercise, the PM drops out and the heart has a normal response. Just wondering.

I'm wondering if the sleep mode feature only in PMs intended for those who are 100% paced (or maybe dependent). In others, the heart is intended to do its thing without help. A guess?

Last night was the first time the sleep mode bit me.  I had it extended yesterday to 12:00 to 8:00AM but that wasnt the problem, I don't think.  I was up late (not unusual) but went upstairs to get something (after 12:00). At the top, I was winded and a little dizzy.Long ago, I found that RR is useless on stairs so the combination of an very low sleep rate and RR wasn't good.

Thanks for all the feedback :)

by Daisies - 2022-01-20 13:56:59

It has made me feel so much better to hear your experiences and learn that my sleep rate is actually lower or the same as what others with this pacemaker function have. 

I slept better the past couple of nights and have decided against asking for it to be lowered, especially after also polling autonomically intact, unpaced people and discovering that even women much fitter than me rarely have sub-50bpm sleeping heart rates. I guess I am just not used to having a pulse!

50bpm is also a bit rubbish if you need to get out of bed for a wee!

I am also very much looking forward to having the CLS mode activated at my follow up next month, as 60bpm has massively improved my quality of life for sitting, but still doesn't allow me to stand without severe presyncope (although I can still recumbent bike and run as my circulation improves naturally during vigorous exercise).

xxx

For Sure I'm CI

by Marybird - 2022-01-20 14:06:07

Though I imagine it's at least partially due to the medications I take to keep my heart rate/tachyarrthymias and hypertension under control under control ( metoprolol and diltiazem).

For a couple years before I got the pacemaker, my heart rate would go into the low 40's, and even high 30's at rest ( or even when I paused in an activity), but it was getting to where it would only go up into the low 50's with any activity I was doing- that's not great when you're trying to do yard work, housework, etc., or wow wow wow up into the low 60's with a vigorous walk, then back into the 40's with a pause. I generally felt lightheaded, mildly short of breath, and just tired- also immensely frustrated as I thought this must be due to the ravages of old age so my new normal. I blamed the medication ( no diltiazem, just metoprolol at that point), but cutting back on it didn't change the bradycardia, but the tachycardias increased when I did that. It was interesting that both the cardiologist and the EP I saw  agreed that while the medication might be contributing to the bradycardia/CI, it was also due to an underlying sinus dysfunction problem I had, so not entirely due to the medication.,

The rate response on my pacemaker was turned off for the first 6 weeks after I got it, with the base rate set to the default of 60. I felt better, (and atrial pacing at 84% even without the rate response) but a bit disappointed that it didn't seem to improve things much with activity.,When I had my 6 week checkup with the EP, he, along with the St. Jude pacer rep, adjusted the settings, including turning on the rate response mode and setting the base rate to 55. He said I needed the rate response on, and told me that would improve things. 

And it sure did. I noticed an improvement in the way I felt right away, as my heart rate began to respond to my activity levels. I don't keep constant check on my heart rate anymore ( figuring it is where it should be, though I can "hear" it through the pulsatile tinnitis) I note that my heart rate now goes to the 70's and 80's with the same household activities where it would only go to the low 50's before the PM, and I have lots more energy. The yard work or other vigorous activity will take it to perhaps 100, but I generally can't the heart rate up above that, though it may go to 110, at least briefly, when I exercise. 

That's a different matter, I'm afraid. I've had hard to control tachycardia for a number of years, though the metoprolol  has always done a great job at keeping it under control, albeit withbreakthroughs sometimes but I've never worried about those. About a year ago my pacemaker remote monitoring reports started showing short runs of afib, so they increased the metoprolol ( in two steps) to a fairly hefty 150 mg/day, along with an equally hefty amount-360 mg/ diltiazem. That seems to have helped, though I think the meds make me the Queen of CI as far as the heart rate goes with exercise and vigorous activity. 100-110 seems to be it, and unfortunately trying to get higher than that will often bring about an episode of afib- then it'll go to 130-140, but we don't want that.  So I do the best I can. 

But my upper PM rate is rather low as those things go, it's set at 120. They lowered it from 130 at my 6 week post PM checkup, so as not to overlap with the tachycardia alert at 140 they have set on my PM. 

The PA I saw at the cardiologist's office explained it all to me, after I commented that I could never get my heart rate up to a "target" range of 130 when I exercised. His response was "it's not supposed to go that high, we don't want it to go that high" and described the process/setup as "boxing in" the heart rate between the low rate with the PM andthe high rate with the meds. He said to go with duration in lieu of intensity with the exercise. So I have, with short breaks as needed. And I now understand that there will be no adjustments in the sensitivity of the rate responses to get my heart rate to 130 with exercise as I had happy thoughts they might do at my request, once upon a time. 

All in all, it seems that the rate response on my PM makes a big difference in my everyday activities, I see the improvement in my heart rate and feel much better. I don't know that there is a "sleep mode" on my PM- never mentioned, but the EP had set the lower rate to 55 for sleeping purposes, and explained that the rate response would kick in to adjust the heart rate for the activities. 

There are a few tradeoffs with the rate response- which with me involve some tachycardia, sometimes, when I flip over in bed ( esp.to the right side), ride on bumpy roads for any length of time, or rock in a rocking chair. But it's a small tradeoff for the good it does for me. 

wee!

by AgentX86 - 2022-01-21 00:37:33

With a nghttime/sleep rate of 50bpm, getting up at night isn't a problem.  I've had my RR set so it'll be at 60bpm soon enough.  That's a lot lower than my normal 80bpm but still works for me.  RR doesn't work worth a damn for stairs or heavy work (e.g. lifting or pushing  wheelbarrow) even in normal circumstances.  With a 50bpm HR, a broken-as-designed accelerometer-based RR really doesn't work well.  Climbing stairs after 11:00PM is an unusual occurance so I'll put up with it.