New to a Pacemaker

[Rosie1066]

Hi everyone, I’m new to this and last week I had an express Pacemaker fitted due to TachyBrady Syndrome which was set to a low of 60 bpm. All has been fine and it’s kept at 60 most of the time except for a couple of readings at 58/59 bpm which is fine as the nurse said it could go a low 55 bpm and that would be Ok. But this afternoon I noticed that my HR dropped to 50 bpm for approximately 15 minutes. My question . . . Should I be concerned?

[Rhinos67]

Hi Rosie1066How are you measuring your heart rate and is it totally accurate?

I was fitted with a pacemaker last year due to total heart block following OHS for a replacement aortic valve. I'm 100% paced, which really upset me for a while and still does of I ponder on it.

I wore my running watch all the time afterwards to monitor my heart rate and got myself really anxious as a result.

When I went for a check up at the pacemaker clinic they gave me a wireless monitor for my bedroom and that downloads my readings straight to the clinic. They told me to ignore my watch and to go on how I feel, but they would contact me if they spotted anything concerning from the downloads.

If you are at all worried please ring the Pacemaker clinic and speak to them. I'm not sure if everyone is given a monitor, but you could ask them.

It may also be worth you joining the pacemaker uk Facebook group for more support.

Look after yourself 😊

Joanne

X

[Rosie1066 in reply to Rhinos67]

Thank you. I am also monitoring my HR on my Apple Watch which is where I saw the drop in HR from 60 to 50. I have found it very accurate in the past and even in hospital it was accurate compared to the readings on the heart monitor which I was attached to for two weeks.

[Dollcollector]

My pacemaker is set to 60 too . My pulse does go below but the pacemaker brings it back up again.

[Hylda2]

Mine is set 50-120 as I always slept in 50s. Totally dependent as had av node ablation. I do have bed side monitor

[Lezzers]

How are you measuring your heart rate? If your pacemaker is set to pace you at 60 when your HR goes below this your pacemaker will pace it up again, but that would be within seconds, it certainly shouldn't take 15 mins. If you're using a smart watch for your HR then they're rarely accurate if you have a heart device fitted. Always best to take your HR manually with finger on your wrist.

[Rosie1066 in reply to Lezzers]

Hi Lezzers, thank you. I have worn an Apple Watch now for almost five years now and, I must admit, that without it I would not have realised how bad my TachyBrady was.

I had an aortic valve replacement back in 2008 and ever since I actually hear/feel every heartbeat and can just put a minute timer on a literally count my heartbeats, I don’t need to take pulse through my wrist. I must admit it’s a funny sensation. Drs in hospital last week were amazed and one doctor could actually stand next to me and hear it. So, I do feel when my heart is running slow, even without my watch. For reassurance I’m gonna call this clinic this morning.

[Lezzers in reply to Rosie1066]

Wow, that's amazing. Is that constant? Does that not bother you? It must be quite distracting. Would be interested in knowing what the clinic says, particularly why your watch says your HR was low for 15 minutes as my understanding is that just shouldn't happen. Do you have a home monitor? My husband has an ICD and that paces him at 50 so anytime his HR goes below that it will almost instantly bring it back up to 50. If his HR reaches 128 then his ICD will try & pace it down. These things can be seen on ecg's &/of his home monitor so the clinic always phone him if there's an issue showing up. I have to be honest I don't particularly monitor his HR as he takes the view that his ICD is checking these things for him. Good luck 🤞

[Rosie1066 in reply to Lezzers]

No, hearing every heart beat doesn’t bother me - I’ve got used to it since 2008. It kinda gives me reassurance that I’m still alive!

During my Hospital stay for the pacemaker I kept getting student doctors coming and listening to my heart as I was a bit of a phenomenon. I was approached for my consent first.

[Westie2012]

Hi Rosie , I had my pm as I had tachy brady syndrome and heart pauses , my pm is set to bring my hr up should it drop below 60, I have an Apple Watch too and it is accurate , if I’ve been in hospital on a heart monitor then the numbers are the same occasionallv give or take 1 or 2 beats , if you’re concerned then maybe call the pacing team (or cardiology ) if your local hospital has given you the contact numbers . I was given a sheet with post procedure do’s and dont’s plus a few numbers to ring if I had any concerns . Take care and hope you’re recovering well .

[Lezzers in reply to Westie2012]

Strangely enough even the heart monitors in the hospital read my husband's HR incorrectly. Both the monitors in re-sus & cardiac ward frequently flash red, sound the alarm & read asystole which is so obviously not the case. The dr's can't understand why this happens, they can only assume that his ICD affects the monitors in some way.

[Westie2012 in reply to Lezzers]

Wow that’s strange isn’t it , must be scary with the alarms going off .

[Lezzers in reply to Westie2012]

It was initially scary as it was an emergency situation & he'd already lost consciousness several times! But as it can't possibly be asystole as most of the time he's sitting up talking!! The monitor first starts flashing orange, the alarm goes off and then the machine starts flashing red! Many's the time nurses and drs have come running to find out it's nothing! It's got them totally baffled. At first they thought it might be interference from his mobile phone but after ruling that out they think it's his ICD interfering with the monitor. As it happens so often they turn the sound off on the machine and monitor him from the monitor at the nurses station.

[Rosie1066 in reply to Westie2012]

yes, I can always tell if my heart misses a beat or speeds up momentarily. Which has been very useful . I notice it more when I am sitting down resting but it doesn’t bother me.

[Rosie1066 in reply to Westie2012]

Hi Westie2012, Thank you. Yes, I think I will call them. I wore my Apple Watch to bed last night and my HR was a constant 50 bpm most of the night too. After being told it was set to 60 bpm I’m not whether 50 is correct or not for sleeping.

[Westie2012 in reply to Rosie1066]

Hope you get some answers when you call , my cardiologist told me that my pm constantly records what my heart is doing and the pacing team can look at specific days and times to check your heart rate so they should be able to see what your heart rate was upto .

[Hidden]

Hi, I'm coming up 10years with my PM and I very rarely take my HR.

When I do, it's manually with finger on the wrist or neck as a rule.

I dont bother with electronic gadgets and constant monitoring, I find them more of a hinderence than an aid, and you can end up worrying over something thats actually quite natural.

It may take you time, but, you'll instinctively come to know when something's not right, and have faith that it's doing it's job.

Best Wishes

[buddy2blue]

hi I have a pacemaker. I had my first one fitted in 2001. My base line is set at 80 in the day and 60 at night. I am also in permanent AFIB xxx

[Rosie1066]

UPDATE : Just called the pacing clinic and they have confirmed all OK.

What I wasn’t told was that my resting rate has been set at 50bpm!

Thanks for all your replies.

[Lezzers in reply to Rosie1066]

Great news. Glad it's sorted

[Swalecliffe88]

I am fitted with a pacemaker and defibrillator (CRT-D) I am paced at 55and had it explained to me, if rate falls into 40s then it would start to pace within 45 seconds. I think your mind would be far at rest if you contact your pacing team. I have found them very helpful when mine was first implanted.