Low pulse rate

I posted on here the frustrations in getting the cardio physiologists to accept my readings of 32 BPM with a pacemaker set to a minimum of 60 BPM.

I was feeling really rough when it happened light-headed and dizzy and initially, they said I would have to put up with it.

Not willing to accept that outcome I contacted the GP surgery and pursued it as a referral through them.

Yesterday the cardio people were still saying I was stuck with it, but they would ask one of the consultants.

Today they phone up with an appointment to raise the base rate from 60 to 70 BPM in three days’ time.

It pays to nag.


low pulse rate

by Gemita - 2023-03-07 11:35:01

Piglet, I am glad you have made some progress and hope your increase in base rate will help address your arrhythmias (premature beats?) that can cause symptoms of dizziness and light-headedness when they are prolonged and make it feel as though the heart rate is in the thirties/forties bpm range.  I know this feeling only too well and when I take my blood pressure with a good medical grade monitor, I too am getting some pretty low heart rates at times.  I generally feel my neck pulse too to assess my heart rate and rhythm but I usually know from my symptoms alone what heart rhythm disturbances are present.

However, just like your experience, my team have said that my pacemaker will absolutely not allow my heart rate to drop below my set rate of 70 bpm and that my home monitor is unable to accurately record my heart rate in the presence of an arrhythmia, particularly an irregular one.  I agree with their reasoning to an extent because my monitor sometimes gives an error reading, but clearly I feel my arrhythmias, the pausing, the slowing, as well as the racing, so it all feels very real to me, as though my pacemaker is often not maintaining the lower rate limit of 70 bpm.

Certainly a higher lower rate limit of 70 bpm will help outpace some of your slower beats and make the long pauses seem shorter and help you to feel as though your heart rate is better supported.  There is a lot more that they can try depending on your pacemaker’s stored features.  I have a 2018 Medtronic pacemaker and I don’t have anything fancy like Atrial Rate Stabilization that can help overdrive pace the atrium or ‘‘smooth’’ the atrial rate by pacing after atrial premature beats, preventing short–long sinus pauses.  I do though have Atrial Preference Pacing that does something similar.  Piglet, my advice is to get to know what features your pacemaker has to offer to help manage your arrhythmias.  

Unfortunately, we must accept that our pacemaker alone cannot effectively treat an arrhythmia.  I firmly believe though there is so much that a pacemaker can do to help us to feel less symptomatic and as patients, we need to get this message across to our doctors.  We need to fully test our pacemakers, fully challenge our doctors that our pacemakers can be better adjusted to help with some of our symptoms.  It has been confirmed by long term monitoring that my premature atrial beats have been frequent triggers for my Atrial Fibrillation, so anything I can do to try to reduce premature atrial beats or to stop them from occurring has to be beneficial.

Well done for making progress but it shouldn’t have to be such a fight.  I hope you will notice an improvement in your symptoms.  Please let me know how you get on and I wish you all the very best.


by piglet22 - 2023-03-07 11:59:05

Thanks for that.

Looks like were're in the same neck of the woods (East Sussex).

I have found the whole process from very early symptoms in 2005 a bit of a struggle.

Too much having to persuade and not enough listen to what patient says and better still believe patient.

I was about to start looking for home ECGs if they hadn't relented.

I did another post on here today on how things can go wrong at the end of PM life.

That was an experience in 2016 that I wouldn't want to repeat. All I got from the consultant was "we don't see you very often" and from the sheepish physiologist "we had you on our radar"

Unfortunately, the radar they had was set too high and they effectively let the battery run out.

What it meant was an emergency admission at 7 pm, three hours sleep and a gruelling replacement operation. 111 didn't have a clue as a failed PM isn't something they deal with every day.

Discharged shortly afterwards and got home on the bus.

With two years left on the current PM, I hope I don't have to go through that again.

Yes I see we are not too far from each other

by Gemita - 2023-03-07 12:38:07

Piglet, my experience in a main London Hospital Guy’s & St. Thomas’ has on the whole been a favourable one but it started badly with a cardiologist not believing that I had an atrial tachyarrhythmia (Atrial Fibrillation).  They only noticed “runs” of a high heart rate on initial monitoring (believed to be SVT). 

After suffering multiple episodes of short faints while travelling on the London Underground one day and having to call an ambulance, they finally picked up AF with a rapid ventricular response rate as the cause.  I felt somewhat relieved to have a diagnosis, but concerned at the same time since it was recommended that I start anticoagulation immediately and remain on it for the rest of my life.  

I changed EP/cardiologist immediately and have done quite well with my current team.  My EP has now retired so I have a new and enthusiastic young EP to work with and he is willing to listen to me and to try out some of my ideas, since he knows I have been doing a little bit of research on my Settings.

I am really sorry to hear of your difficulties.  Yes we are not so far away from each other.  Pity you cannot be seen in London, but I agree it is a struggle to get Cardiac staff to listen to us sometimes and to accept that some of us are truly symptomatic and in need of special care and understanding.  I found unless we had a serious arrhythmia, like sustained VT or VF, they don’t regard AF or other atrial tacharrhythmias (and particularly ectopic beats) as being a problem but they can make us feel absolutely awful.  

We have to take the evidence to our doctors sometimes, to keep diary notes (or produce Kardia prints) of when we get difficult symptoms to correlate with any events that may have been recorded by our pacemakers.  At my last check I told my technician to look for Atrial Fibrillation on a particular date and time.  He was able to locate the episode and to report that my pacemaker was not set up sensitively enough to record the total time I spent in AF that particular day, so he reset my sensitivity Setting to give a more accurate reading of the percentage time I spend in AF.  He encouraged me to continue keeping diary records to show him.  Based on my symptoms, they and I will know when the time is right for further AF control/treatment.

I will have a read of your post (comments) on how things can go wrong at the end of battery life.  I have still got that to face, although hopefully with home monitoring and frequent visits to the clinic (and lots of input from me when I get any symptoms) I won’t have to go through such an ordeal.

Well Done for Persevering

by SeenBetterDays - 2023-03-07 15:56:13

It's such a shame that you have had to nag and cajole to get this change in your base rate. Listening to the patient's symptoms and trying out new settings which might help surely shouldn't be too much to ask. I hope this change will help ease your dizziness and make you feel better.  

I'm so sorry you had to go through such a horrible experience at the expiry of your pm, that sounds traumatic. I haven't got to that point yet but would hope that there would be regular checks in the lead up to battery depletion, especially as I am pm dependent. I hope they can reassure you that they will take better care of you next time. It's so important that we can have trust and confidence in our medical team isn't it.                                           

Please let us know how you get on with the change in your settings and well done for your grit and determination in pursuing a solution to your problems.

Raising base rate to 70 bpm, may not resolve 32 bpm problem

by brady - 2023-03-16 19:45:20

I doubted raising the base rate from 60 to 70 will help 32bpm because the cause is not known. The only thing I could think of is the PM is not working correctly. Even if it will resolve the problem, you may still want to know the cause.  If not when you need the PM, it may not be functioning correctly to help you.

If you are having 32bpm, a Holter monitor or an apple watch will be able to catch the occurrence and frequency, but an EKG typically last for a minute may not.


by piglet22 - 2023-03-16 20:12:32

I don't have a lot of confidence in the cardiology department where I attend. I haven't seen a consultant in 18-years.

The idea to raise the rate sounded like a tea break suggestion.

I watched a programme the other night on A&E and there was a chap on there who literally had been saved by his Fitbit. He was in 28 bpm asleep and the Fitbit alarmed. The medics managed to raise his bpm to 40 and he was fitted with a pacemaker the next day.

I do a bit of electronics and I don't think it would be difficult to cobble together an ECG device to ge a crude ECG. I have several oscilloscopes that could easily record hours worth of data. My events tend to happen overnight so when the hospital does an ECG, it all looks normal. You would think they might have offered a Holter monitor or even a loop recorder, but as ever, it's the patient who has to chase it up.

Interestingly, I had a text message from UPS today to say that they will be delivering a parcel to me tomorrow from Medtronics.

I haven't got a clue what it is.

Maybe it's a new pacemaker. I hope it come with instructions.

All the way along, the hospital have done this, sending me a home monitor with absolutely nothing from the hospital to maybe ask how are you getting on with it or similar.

I pity anyone who doesn't have access to text or the internet.and would be oblivious to what is going on. This is UK 21st century NHS

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