Heart Rate rises very quickly when out walking.

Hi
I am 55 and now 4 weeks post PM implant (Medtronic dual chamber) and am starting to feel more like me again. I had level 3 heartblock and the PM was fitted as an emergency procedure.
I wasn't very fit before the PM was fitted, although I was active before all this kicked off - it's been developing for about 4 months and as I only had 2 hours notice prior to the op, didn't really have too much time to understand what was happening.
I have to say my technicians have been great since - they got me back in as I was feeling awful, put me on the treadmill and tweeked the PM. They have also tried to answer my many and probably stupid (at times) questions.
I'm still struggling to take it all on board though.
I can now go up stairs ok, I can go shopping and do housework ok (oh joy), but when I go for a walk or try a gentle workout (Jane Fonda - don't laugh), my HB goes up very quickly. I had to walk fast today - and my HB went up to about 185, in a flash - I felt rough. I stopped as I was feeling faint, sat down and took my pulse again and it had dropped to about 55 - it then climbed back up to the lower 100s as I was resting.
I am paced 100% in my lower chamber and about 1% in the top chamber. Am I right in thinking the pacemaker exceeded it's setting, and then dropped me to my lowest limit?
If so, are there any dangers associated with this scenario? Could I have a heart attack?
I would be grateful if someone could explain in layman's terms what is happening. I know I'm not particularly fit, but before all this started,I could walk briskly on the flat without my heart feeling as though it were about to burst.
Any help gratefully received.
Cheers Jane

9 Comments

Hi

by Jane21 - 2015-08-20 09:08:29

Hi Marmite and thanks for your response. I don't think my HR dropped because I sat down, I had to sit down, as I felt so rough. Yes my heart beat was slow before my pacemaker was fitted, because I had heart block. I was brachycardic. Prior to becoming ill, I was pretty average - if there is such a thing:-)
This situation happened in the hospital, when the Tech girls were trying to fine tune my PM and I was on the treadmill. They explained why it happened, but I'm not sure it really went in and I can't remember what they said.
I suppose what I need to know is how dangerous is this? Is it okay to carry on and let my HR get so high and how do I prevent it from doing so, should it not be ok.
I suspect it is to do with the settings on the pacemaker and me gradually getting fitter, but could really do with some advice from someone who has experience in this situation.
Cheers Jane

Can you get cardio rehab?

by Theknotguy - 2015-08-21 02:08:32

Post PM implant, I was able to go to cardio rehab. I exercised in a facility that had the medical equipment necessary to take care of an emergency and had trained nurses watching my exercise. If any problems happened, they were there to intervene.

During the time I was in rehab, we had several people who came in, developed problems, and were taken out of the program. I developed afib during the rehab and was marched down to the ER for treatment. Later I was able to successfully complete my rehab.

The high heartbeat response to your exercise may indicate another heart problem. It may just be that you haven't exercised enough and the heart is reacting abnormally. In any case we, on the forum, can't determine if you need to continue exercising at the level you've indicated or if you have a medical problem that needs addressed. In your case, I'd talk with your cardiologist or EP to get an indication of which way to go.

The first few times in rehab were scary. My heart would react to the exercise and I wasn't sure if it was OK to continue. I had the trained nurses there to let me know things were OK. The more rehab, the better the heart responded.

Any exercise is better than none at all. But you want exercise that will help and not hurt.

Hope you can get a solution to your problem.

rate goes up

by Tracey_E - 2015-08-21 03:08:28

First of all, no it's not dangerous and you won't have a heart attack. Our problems are electrical. Heart attack happen when blood flow is restricted to part of the heart and the tissue dies, so it's from plumbing problems not electrical.

It sounds like your techs are really on things! The treadmill is a great tool and so few techs think to use it. It's perfectly normal to take a few tries to get it right. If you don't feel well, don't be shy about asking to be seen again.

First thing you will want to know is when your rate goes up like that, are you paced? Most pacers don't go above 180 so if you are higher than that, it's likely all you and you are not in block at that time. If you are paced when it happens, it could be rate response kicking in inappropriately. If that's the case, it's an easy fix. When it happens, mark the time then call and ask to be seen. They can look in the report and see if you were pacing at the time.

Next thing, is your atrial rate getting higher than the pm can pace the ventricles? That will make you feel bad! It's not dangerous but it will end a workout quickly. If that's the case, they may be able to turn the upper limit up more so it can pace you higher. I got as high as my pm would go (180) but still max out sometimes, so I am on a low dose beta blocker to keep it under control. But that's a last resort, just something to keep in the back of your mind.

The fast drop, yes that is likely the pacer and it can be fixed with settings. When our atria goes too fast, the pm might be fooled into thinking you are in afib, so it does you a favor and puts you in an artificial 2:1 block (2 atrial beats, 1 ventricular beat) which effectively drops your heart rate in half. If you are in afib, this is great. If you are just working out, not so much! If you have no history of afib, they can simply turn this feature off.

This is my own theory, no medical evidence just a lot of personal experience and similar stories from others like us... When we are in block, before we were paced, our atria beat normally but the ventricles never kept up. So, we'd exert, the atria would go faster, the ventricles would still plod along slowly at their own pace (pardon the pun). So the atria go a little faster, but still no response from the ventricles. Now, we are paced so every time the atria beats the pm kicks in and makes the ventricles keep up. I think the atria is so used to working overtime that it goes too fast for a while. My resting rate was high and it jumped quickly on exertion for a full year after I was paced before it settled down. But it did eventually settle down. I didn't have the other problems (that led to the beta blocker) for another 15 years.

Also, in the time between when we first get sick to when we get the pm to when we are up to exercising, it's amazing how quickly we get deconditioned. It's also amazing how quickly it can come back, so don't give up! This is all normal and can take some patience. You have a tech who is on the ball, that's the most important thing. Nothing you've said sounds unusual, much of it is exactly what I went through in the first months I was paced and others have described the same thing. Once your settings are good for you, once you've healed and got your conditioning back, this will all just be a memory and you can stop thinking about the pm all the time and get on with your life.

Thanks

by Jane21 - 2015-08-21 06:08:04

Hi all and many thanks for your responses.
Tracey, so much of what you said sounds familiar.Yes the atrial rate was higher than the PM could pace the ventricles. The fast drop is exactly what you said too.
I had a bit of a turn today and rang the technicians. They got me in straight away and also got the cardiologist up.
A lot of the problem is my lack of fitness and although beta blockers were discussed, we decided to leave that for a while and concentrate on a gentle route back to where I was several years ago.
Another of the problems is I am also asthmatic and according to the cardiologist, asthmatics with pacemakers have similar issues to me.
I'm trying to understand exactly what has happened to me and why. What I forget is I am neither a technician or a Cardiologist. They have trained for years, I can't expect to be up to speed in 5 weeks - but there's a teacher for you :-)
Anyway, many thanks for your help.
Onwards and upwards
Jane x

time

by Tracey_E - 2015-08-22 12:08:36

You have a really excellent team! I love that they are being aggressive about making changes but conservative about meds. As you heal and slowly get back into shape, hopefully the racing will go away.

You will get up to speed! I asked a lot of questions at first, they all quickly learned that it was important to me to understand so now they automatically tell me more than probably a lot of other patients. You are learning more than you think! I found out the hard way that outside of a cardiologist's office, no one knows what's wrong with our hearts. The internist has a vague idea, for other specialists it was an afternoon in med school, so we need to learn to explain it. I am congenital, diagnosed when I was 5, so I've had a few more years than you to learn the lingo. If you have questions or ever want to chat, lemme know.

more questions

by Tracey_E - 2015-08-24 03:08:40

I say you have an excellent team because a LOT of drs will write us off if we don't feel that well after a visit or two, tell us that's the best we can hope for.

If you aren't feeling well, then you are not being a nuisance. Always tell them when things still aren't right. I figure they can get over it if I'm annoying them, I don't let that stop me :)

Electrical problems just happen in most cases, that's why they aren't concerned with finding the cause. It's a fluke, a short circuit. In some cases it's caused by infection, surgery, medication but more often than not, it's just random and happens in an otherwise healthy heart.

I don't know why they'd tell you it will worsen. If you had partial block then it would possibly progress to complete block. It doesn't much matter, you already have the fix.

They use a standard set of settings when they send us home, and yes those are generally more suited to an octogenarian couch potato than someone young, active and otherwise healthy. It's just a starting point, they will make changes as needed. The reason why it can take quite a few tries is they like to make changes in small increments. This way if it's not the best change, it's easier to try something else.

Long term prognosis, well, the reason they don't say much is because we are the first generations to be paced long term so they can't point at a 90 yr old who has been paced for 50 years because 50 years ago the technology was not there. We are the trail blazers! If I'd been born the same year as my mom, I would not have seen my 30th birthday, so I figure I'm already ahead. I'm paced, healthy and active, and coming up on my 50th. I don't plan to slow down any time soon.

Thanks Tracey

by Jane21 - 2015-08-24 06:08:44

Tracey, thanks, that was a great response and really helpful.
I do appreciate it :-) Jxx

Thanks for advice still have a 'but'

by Jane21 - 2015-08-24 07:08:49

Many thanks to all who contributed to my post, I'm sure the advice etc will be useful to others as well, who may have a similar question.
I do still have a but, regarding my aftercare.
Tracey, you said what an excellent team I had and in the main I agree. However, there are aspects to my care I do not think are or were very good.
Initially when diagnosed and prior to the fitting, my condition was explained very poorly to me, my options and prognosis were not discussed properly. In fact the cardiologist just stuck his head round the curtain and said you have heartblock, I'm fitting a pacemaker this morning. Prior to that I had never even heard of heartblock. I accept it was something of an emergency, but in the UK certain procedures have to be followed when consenting a patient and I think mine were sketchy. (There are 2 plastic consultants in my family, so I do have a little help there).
Once fit, I had a short discussion with the cardiologist whilst I was on the trolley and an angiogram was decided. I had to chase this up and get the appointment made. There was no follow up appointment with a cardiologist at all.
The pacemaker technicians saw me on the ward and tweeked the PM and that was it.
When I didn't feel well after a week, infact I felt worse than before the PM was fitted, my GP referred me back to hospital. I had a night in and was told I was ok. Well I would be lying on a bed for 36 hours. I wasn't really listened to and was made to feel like a bit of a timewaster.
Still didn't feel well if I moved much. Not ideal, as it is hard to run your life either from bed or the settee.
I rang the techies and insisted they needed to see me. They found my problem as far as the PM was concerned as soon as they put me on the treadmill. Basically my pulse soared as soon as I became active. So they tweeked my PM again, explaining the standard setting was for a much older person.
Ummm, helloooooo, do I look like a much older person,?couldn't they have seen that before I left hospital the first time.
So my PM was tweeked again and yes I felt better, but was still having issues. So I rang them back and said still not ok. By now I felt very much as though I was being a nuisance. They twiddled around a bit, talking to themselves (I kept hearing things like - it's missing a beat here and putting an extra one in there ) but no one actually talked to me. I had to ask if all was ok and they just said yes. The cardiologist was summoned and I was sent out to wait. I could hear them talking about me (not pleasant when sat in a corridor waiting) and I could hear the voices suddenly dropped, I felt as though I were being discussed in not too kind a light.
The Cardiologist came to see me, said basically all your problems stem from not being fit (I can accept that) and although beta blockers would help, did I want to go down that route. Obviously not, if it could be helped.
I told him I had had difficulty coming to terms with it all, he offered me counselling. I declined, it's just not a thing us Brits do. I will get my head round it all myself. But I do feel if a bit more time and effort had been taken in the first case, to explain and make sure I was okay with it all, then I wouldn't feel how I feel now.
To the medical teams that deal with this, it's routine and just a part of their everyday.
To the patients, it's their life.
I think a lot more time and effort needs to be spent understanding this. Certainly in my part of the UK.
I do accept not all folk will want as much info as I do, or to understand quite so much, but I would have thought the majority do.
Has anyone who has never suffered from total heartblock, let alone heard of it prior to having it, any idea how flipping scary it is, to realise without this little electrical gadget you would be dead - it would seem to me probably not.
Have they any idea how nerve racking it is when you feel rubbish and wonder if you're going to die?
It is hard to know when to ring someone and say I'm not ok. I mean lets face it, it's not as though we have any experience of this beforehand.
No one likes to feel they are being a nuisance, but then I'm not too keen at the thought of snuffing it at 55 either.
How things are handled in the States, may well be different (although we as patients are not), but no effort has been put into why I had total heartblock in the first instance. I mean the cardiologist said it was unusual in a woman of my age - end of conversation. They cure the symptoms, but don't seek to find causes. No real prognosis has been discussed. The technician just said my condition will worsen with age. What condition? I thought the PM fixed that. One hand seems to say nothing wrong with you now, go and lead your life, the other says - don't do that you have a PM fitted. I find that conflict difficult to assess.
There is a reason I have gone into this at length. If I feel this way, then a pound to a penny, others will too - I am hardly that unique. So I thought I'd share my feelings and possibly help someone else.
I did ask the techies if what I was experiencing was common, they said no. I'm not sure I believe them. I am quite a vocal person and don't suffer from white coat syndrome. Others are less confident than me (for that you might read bolshy :-) ) and so might not find it so easy to push and press.
I am going to post this on the noticeboard for others to read, just maybe, someone one will find my thoughts helpful.
Cheers Jx

Taking it all in....

by Zetha - 2015-09-22 12:09:34

Yes I'm also still 'taking it all in' , 2 weeks have passed since pacemaker, hoping to go back to pilates. Will only know when I can start pilates again after 6 week check-up with cardiologist; I am hoping to use weights again for trimming upper arms.
I've had to receive pacemaker for brachycardia but also have tachycardia for which my cardiologist has prescribed a very low dose beta-blocker, which I have been phasing in this last week, have not had many heart palpitations since.... do not know yet what will happen when exercising....have gone for a walk around neighbourhood with my husband, experienced no problem.
Regards
Zetha.

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