It seems I am not bone idle but genuinely in need of some rate response

Chronotropic Incompetence

by Good Dog - 2024-02-05 07:51:48

Gemita,

I looked in the gallery and found one tracing that I was unable to decipher. In any case, as far as I am concerned, as you always say; it is about how you feel! I am sure you could see from the short table that I posted that my rate is pretty "flat". It is in the 50's almost 70% of the time. Base rate has been there since 1987. I am no athlete, but I am very active. I walk my dogs at a brisk pace for 1 to 2 miles/day. I also often walk to the store and other nearby places of busines around a mile at a time. I sometimes even do a brief run. I shovel snow (we get a lot of that here) and mow my almost 1/2 acre lawn with a big walk behind mower that takes some muscle to handle. I regularly do most of the housework to help-out my wife. I just moved a king size mattress by myself (that made me huff and puff) from one room to another and I am always working around the house. My point is, I do not have RR turned-on and I feel fine. I have always had some concern about my low rate, if no other reason than "wondering" if my body and brain need more oxygenated blood. I don't know what I don't know. As you may recall, a couple years ago I had a technician turn-on my rate response without even asking or notifying me. I noticed it in my interrogation report when they sent it out. First and only time it has been on. Thing is, I thought something was terribly wrong as soon as I arrived home from that clinic visit (prior to receiving the report). My heart was racing like it never had before. I was getting sudden spikes over 130 bpm and had no clue why. I felt terrible. I was angry at the technician that did it, but eventually thought that maybe it may be beneficial if and when properly adjusted. So I asked them to try that. After 3 adjustments I continued to feel bad with the sudden although somewhat smaller spikes in my rate. Finally, the same technician that had turned it on said to me; " well, this is the lowest we can adjust rate response so I am turning it off". He did not ask, he just did it. I guess that after so many years my body simply adjusted to my low rate and I did perfectly fine with it. Although I am still angry at that technician. As you know, I have also been dealing with an EF of 40%. So I'll mention another incident that occurred a few months after the debacle with the rate response; I had a stroke. There was an unusual collection of plaque with a 60% ulcerated blockage on only one-side of my left carotid. That, while all my other ateries were perfectly clean/clear. It really puzzled the Docs. Now there may be zero connection, but I cannot help but wonder if after never using rate response and then suddenly after so many years of consistently low heart rates, those sudden rapid and sustained rates that were sometimes over 130 caused my soft plaque to break loose and collect in that carotid? The surgeon described my plaque as being the consistency of toothpaste. I will never know, but it seems like a plausible explanation to me. Now I know that is unlikely to have anything to do with you, but just thought it is something to consider. Obviously you have had RR on in the past, so your situation is very different. 

Sorry to ramble. My point in all of this though is very simple; I feel fine with my lower rate and my ability to do anything that I want or need. However, admittedly; I do not know what I do not know, but I do not feel that my activity has been restricted or hindered in any way. My rate obviously does/has picked-up on its own occasionaly when necessary.  So again, as you always say, and it is also my opinion; that it is all about how you feel.

I am obviously not qualitied to give advice. So please understand that I am not doing that here. Just trying to relay my experience and provide some support. I sure do not want to confuse the situation any more than it already may be. I am confident you will arrive at a solution that works best for you. Based upn the letter you posted it sure seems that you are getting excellent care. You certainly deserve nothing less!

Sincerely,

Dave

response

by new to pace.... - 2024-02-05 08:10:28

Glad to hear that your Pacemaker clinic did contact you.  With an answer so fast.  

new to pace

I am struggling to post to the gallery

by Gemita - 2024-02-05 08:15:00

Dave, thank you.  I will answer your message later.  I am really struggling this end this morning.  Slept well enough but brain fog is awful.  I will come back to this post and to my attempt to upload to the gallery later.  In the meantime, I send my best wishes to you and thank you so much for your contribution and yours too, New to Pace

Hugs 💕🌸💗

by Lavender - 2024-02-05 09:43:18

I'm sure this new revelation is disconcerting. It's a lot to process and for a gal like you, to research. Given that your tech says not to be concerned and that it might take time to tweak the settings, I would take some comfort there. He does say this, and I have read about Beta blockers and CI-could you consult further with them on the risk/advantage of the b blocker?

 "That isn’t necessarily a problem and may be a result of any rate control medications that you’re taking. "

I guess your cardiologist would prescribe a stress test if they felt it necessary but since you're already diagnosed to have CI, I don't know that having the test would change the recommended course of treatment. I am curious though, if this affects your EF?

Chest Discomfort

by Penguin - 2024-02-05 10:49:25

Gemita,

You asked whether or not you still need an exercise test.

You said that you felt fine but had been experiencing some chest discomfort. I may have missed it, but did you say when this happens - with intense exercise or exertion? with stress? at rest? during everyday activities?  

Would you be happy to wait and see if this goes away now that RR is turned on, and to accept that it was due to CI if it improves?  Alternatively do you think that you may still have a nagging concern that it could be something else?  

This may just be me but I'd ask a couple of questions about the chest pain: 

Are the (AF) episodes that your physiologist refers to on your tracings, the episodes that occur below 170 bpm that don't trigger mode switches?

Do these episodes have any toll on your heart that could cause chest pain? E.g. Do they account for the % VT e.g. is the PM tracking them down to the ventricles?  Could any of this cause chest pain? 

How does the BB help with these lower rate episodes? 

As an aside (not a physiolist question) I hate to say it, but could stress and adrenaline cause chest pain? You've got a lot on right now. 

I hope you get it sorted. 

Good Dog

by Gemita - 2024-02-05 13:21:48

Hi Dave, you have written a powerful account of your experience with Rate Response and you are exactly right, it is all about “how we feel that counts, not those numbers”.  Unfortunately I haven’t been feeling that good lately, so I know there is something going on and I don’t think I can put it down only to stress, although there is a great deal of that going on in my life at the moment too.

You are very much qualified to give advice Dave, personal advice and that counts for a great deal and I am very lucky to have members like you to help me.  So far whatever changes they have made in clinic, have not caused worsening symptoms.  In fact prior to the changes I was having more in the way of rhythm disturbances.  There has been “calm” since they turned RR on, unlike when they previously attempted this, so perhaps the settings are right for me this time.    

You have not rambled.  You always make a great deal of sense.  All I can do is to give RR a good trial run this time to see whether it will help.  

I know for me personally an irregular fast, normal speed or slow speed heart rhythm disturbance is more likely to cause blood flow problems than a “regular” fast heart beat.  I do recall you had a stroke.  I can understand your concern about those sudden higher heart rates and questioning whether the increase in heart rate may have been a contributory factor?  There is no doubt a sluggish circulation, particularly an irregular one, can cause havoc as can a rapid, regular circulation.  I believe it is the sudden changes that can cause the most damage Dave and as you say coming from a sluggish pulse into a faster one would not have been without its own risks. 

Thank you for your support

Lavender

by Gemita - 2024-02-05 14:04:36

Hi Lavender, My risk from AF and high heart rates is higher than my risk from Chronotropic Incompetence (CI), since with CI I have the pacemaker to correct any slow heart beat.  If the beta blocker is causing CI and it is more than possible, there is little I can do because I need the rate control med to protect me from high heart rates.  (I have confirmed Atrial Fibrillation with a rapid ventricular response rate which would be dangerous without a rate control medication).

You are quite right for highlighting that the CI isn't necessarily a problem and may just be the result of the rate control med.  Of course the downside of this is that I cannot stop taking a rate control med because my Atrial Fibrillation would take off, so the outcome is the same.  I need now to treat any chronotropic incompetence.

I knew this could happen which is one of the reasons my doctor recommended a pacemaker.  I have always had bradycardia, so knew I would be in trouble if I took a rate control med for my atrial fibrillation without the protection of a pacemaker.  My EF is still good Lavender (around 50-55%).  

My technician will report my results to my new EP and will tell him about my chest discomfort, so I expect I will be hearing from him.  He is young, active and very caring.  I am extremely lucky to have such a nice team, aren't I.  Hope you are doing okay?

Glad You Are in Good Hands

by SeenBetterDays - 2024-02-05 16:37:02

Hi Gemita

I am so glad you have a caring responsive team looking after you.  You are in a difficult dilemma, having to take medication which slows the heart and simultaneously having to use the rate reponse function on the pacemaker to overcome the chronotropic incompetence.  It's a difficult balancing act.  I really hope that the change to your settings helps you to feel better and also that your chest pain subsides.  I am thinking of you and hoping that you feel an improvement soon. Sending you love and best wishes.

Rebecca

Penguin

by Gemita - 2024-02-05 16:37:59

Hello Penguin, you are challenging me in a nice way.  I am going to make an appointment to speak to my GP in the next few days, although recent repeat general blood tests for a medication review were all okay, except low Vit D.

To answer the easy question first.  No I don’t think this is caused by stress alone, although stress in my life won’t be helping.  I have actually been run down for several weeks now, have had an intermittent sore throat and cough and some chest discomfort.  I do not have Covid, nor a temperature. 

There is no doubt when I am in AF even at a slow pace, I can get chest discomfort which stops immediately on cessation of the arrhythmia, so I know I am not tolerating my disturbances well.  The slower episodes of AF that do not automatically trigger a mode switch can cause just as many symptoms as the faster episodes.  When in AF I lose what they call the atrial kick.  Atrial kick is the increased force generated by the atria during contraction and can account for 20 to 30% of the blood transferred to the left ventricle.  When we lose it, it can reduce cardiac output. 

Are the (AF) episodes that your physiologist refers to on your tracings, the episodes that occur below 170 bpm that don't trigger mode switches?  Yes, there will be runs of AF below 171 bpm included in that graph that won't trigger mode switches and they won't be helping me to exercise.  It has to meet the criteria set (detect rate and minimum duration that the AT must persist above before the mode switches).

Do these episodes have any toll on your heart that could cause chest pain? E.g. Do they account for the % VT e.g. is the PM tracking them down to the ventricles?  Could any of this cause chest pain?   When in AF with ineffective fibrillating atria, blood flow is poor and I lose up to 20-30% of cardiac output.  I definitely feel this loss.  I am very intolerant of any rhythm disturbance and they are certainly a trigger for my chest discomfort, particularly since the irregularity of rhythm passes through the AV node and affects the ventricles. As soon as the arrhythmia stops, my chest pain usually stops.

Beta Blockers actually don’t help with my lower rate episodes of AF or any other arrhythmia. They may in fact increase symptoms by slowing down the heart rate too much, causing worsening ectopics and then worsening arrhythmias.  My Bisoprolol is only good for fast episodes.  They just make my slower rhythms even slower and more irregular.  I certainly need to tap on my device now that I have RR on to speed things up.  Haven't had to try it out yet Penguin, but it is another tool in the cupboard

Rebecca

by Gemita - 2024-02-05 16:58:19

Rebecca, thank you for your warm hearted messages.  Yes having an arrhythmia like AF is certainly challenging and tiring, but it helps to have a wonderful team looking after me, who really listen and want to do their very best for me.  I couldn’t believe how quickly they responded to my message I sent over the weekend.  I wouldn’t get a better service if I went privately.

I send you love and best wishes too Rebecca.  I know you need all the help you can get as well xx

Awesome

by Pacer2019 - 2024-02-05 18:27:02

feedback to receive form tech support! Sounds like you are in good hands

Tap?

by piglet22 - 2024-02-06 04:43:59

Hi Gemita.

What do you mean by *tap on it "?

Have you got some turbo boost available?

Having struggled to do normal exercise for months now, I could do with the afterburner on.

Good to see that you had a fairly comprehensive reply from your team.

You know my views on that subject.

P

Tapping

by Gemita - 2024-02-06 06:24:44

Piglet, don't tell me off, but I often see on these pages if we tap on our devices with RR or another accelerator turned on, we may get a speeding up of our hearts.   Well my RR certainly works in that when I tap gently on my device 10 or more times, it thinks I am active and springs into action.  I can feel my heart rate immediately increasing.

I tried doing this the other night when I started noticing ectopics and the slowing of my heart rate.  For me it is another tool in the cupboard if ectopics wake me at night and I don't want to jump out of bed and start exercising to raise my heart rate.  Lying there and tapping and then trying to sleep again is kinder and more practical wouldn't you say?  I wonder what the downside is?

Pacer2019

by Gemita - 2024-02-06 06:35:01

Yes I do seem to be getting some really decent feedback from my team and always so promptly when I know how busy they are.  I wish all UK members could say the same, but sadly care is far from adequate everywhere.  I hope you are doing okay Pacer2019 although I notice from your posts that you are having to optimise your settings too.  Don't rush this important part of your care.  Your quality of life depends on it

tapping on your pacemaker

by new to pace.... - 2024-02-06 07:13:00

I recall reading on this site that some have written that is not a good idea.  Instead just sit on the side of your bed and swing your arms back and forth,crossing each other.  Sounds like a better way to go.

new to pace

You are correct new to pace

by Gemita - 2024-02-06 15:34:49

it isn't the answer long term and it is never a good idea to manipulate our devices, but the odd pat, I am sure we all do it.  I see you have rate response set ON too.  Has it always been ON and have you ever experienced any difficulties in exercising or getting the Rate Response settings adjusted to suit your level activity?

settings adjusted

by new to pace.... - 2024-02-06 16:02:09

Thanks Gemita for your question.  As far as i know the Rate Response has always been on and never adjusted.  Since am not a great exerciser do not seem to have any problems. 

 Using a finger tip Pulse Oximeter(i know not prefect) occasionally check.  Notice when i move from one location to another can get to nearly 80. Or when having one of my food sensitivity episodes will go a little higher, when coming  off them.  

new to pace

Heart Rate Graph

by Gemita - 2024-02-07 05:08:37

Heart Rate Graph now posted to Gallery as a Screenshot

Good Dog

by piglet22 - 2024-02-07 09:34:23

Interesting read.

Sorry to hear about the carotoid problem.

My neighbour, a plumber, went for a hearing test. By chance, the audiologist noticed a lump in my neighbours neck.

He was referred to the vascular team who discovered a collection of what must have been plaque and removed it.

They gave the removed item to my neighbour and he showed it to me. It was a soft object the size of a garden pea.

He must be the luckiest plumber around.