NEW SYMPTOM

MY HEART RATE WON'T INCREASE WITH EXERCISE!  Since 2018 I've had a dual lead St. Jude PM for a complete heart block.  My rate response is on and my HR is capped at 120.  My resting pulse used to be 60 but now it's around 80.  I have a lot of irregular beats.  However for the past month or more I've had a problem even with mild exercise.  My heart rate will not increase with exercise.  When for instance I try to walk uphill my chest gets tight and I become breathless.  Checking my HR it is stuck at 80 and will not go up.  I'm breathless frequently just doing household tasks like vacuuming for the same reason.  I think something is going on.  I googled this but couldn't find this problem in someone with a pacemaker.  Any ideas out there about what's happening?  Anyone who has this? I'm 80 but was athletic a lot of my life until recently when I started to have heart problems.   


9 Comments

HR won't increase

by AgentX86 - 2022-07-05 13:00:23

It sounds like two things going on.  First, your heart disease has progressed to where you now have SSS as well as  CHB.  I could be way wrong on this but it explains the chronotropic incompetence. 

The second is that you have Afib.  The irregular pattern and higher heart rate is a dead giveaway for this arrhythmia.  If your heart disease has spread to the SI node, this isn't surprising either. The Afib could be unmasked by Sick Sinus Syndrome or the same fibrosis has caused both.

I suggest that you see your EP or cardiologist (you need an EP) as soon as possible. It's probably not an emergency but I'm sure you feel like crap and is something that needs to be taken care of.

The good news is that if it is CI, your current pacemaker can help.  It won't help Afib but one step at a time.

A-fib

by Swangirl - 2022-07-05 19:24:10

Thanks AgentX for your thoughtful answer.  I've not noticed my heart rate going up much beyond 80.  Are you suggesting that I could have A-fib at a much lower heart rate than most of us consider A-fib?  Or do you think my Atria could be fibrillating and my pulse doesn't show it?  Would a heart monitor be useful at picking up A-fib?  

Afib

by AgentX86 - 2022-07-05 21:26:17

Sure, it's not all that unusual that AF shows a relatively low heart rate.   That's one of the reasons it goes undetected so often. People don't have the more obvious tachycrdia and don't feel their pulse so completely miss it.  The very high heart rates you hear about are what's called "Afib with RVR" or "Afib with Rapid Ventricular Response". 

My AF and AFL, in fact, had low heart rates.  I only knew I was in flutter was that my resting rate instantly (I could see when it had shifted gears on my FitBit) when from 40-50ish BPM to 80BPM.  It took me a few times before I convinced my cardiologist that I knew when I was in flutter.  ER doctors never believed me.  AF is easier because of the irregular heartbeat. It stands out no matter what the rate.

Your heart monitor might pick it up.  Some blood pressure monitors are programmed to detect the irregular heartbeat.  However, a finger is much easier and more reliable.  Just find your pulse with your finger.  If it's even, it's not AF (but still could be flutter).  If it's random it's Afib.

Shortness of breath and chest tightness on exercise

by Selwyn - 2022-07-06 11:21:31

AgentX86 offers good advice. You need a 12 lead ECG to see what is going on. I expect there is the possibility of angina if you have chest tightness and shortness of breath on exercise. Best see a medic.

If the pacemaker is in AMS ( automatic mode switching)  mode due to atrial fibrillation the rate response will be switched off.

If you want to test the rate response function, just tap repeatedly the pacemaker box with a finger at a rate of twice a second and within 30 seconds or so you should get an increase in heart rate.  If not, it is not functioning, in AMS mode, or has not been switched on. 

Just had my rate response switched on

by Gemita - 2022-07-06 12:38:53

Hello Swangirl, just had a pacemaker check and they have turned rate response on for the first time since 2018 since I am having difficulty exercising too.   

I wonder whether your comment saying your base rate used to be 60 bpm and is now mostly 80 bpm might be telling us that you are currently stuck in an arrhythmia or a particular mode.  When certain pacing therapies are used say during an arrhythmia, the base rate is often running 10+ bpm or so higher to help outpace or treat the arrhythmia.  When the arrhythmia stops, then the base rate should revert to the original base rate setting.  I would query why your base rate appears stuck at 80 bpm and maybe ask what arrhythmia programs your pacemaker supports?

Yes at whatever speed, an irregular rhythm like AF or even ectopics, can really mess with my blood flow and cause difficulties exercising and getting my heart rate up, triggering worsening symptoms like chest pain and breathing distress.

You say you are breathless frequently just doing vacuuming.  That feeling of not getting enough air is a typical sign for me at least of being out of normal sinus rhythm.  I am a great believer in monitoring (both treadmill and holter monitoring) to get to the bottom of our difficulties.  The more information we can give our technicians/doctors, the more likely we are to find the cause for our symptoms.  

AgentX86 and Selwyn have already given good advice.  I always feel my pulse in my neck to see if it feels slow, normal or fast.  Then I check whether it is a regular pulse (heart beats coming at steady, regular intervals as opposed to an irregular pulse (heart beats coming at irregular intervals), the latter is often for me a sign of AF or benign ectopics.  An irregular pulse would feel like pausing, slowing, followed by speeding.  Then focus on your chest.  With AF I feel a quivering sensation.  You say you are getting tightness.  I feel tightness and some discomfort, even pain during prolonged arrhythmias.  I had this the other night which did worry me but it mostly stops when the arrhythmia stops.  It was unpleasant though.

You say your heart rate won’t increase with exercise.  This problem can be helped by adjustments to pacemaker settings, but it may be a slow process to find the best settings for you, especially if an arrhythmia is present also.   

If your doctors say, there are no signs of high heart rates or AF from your  pacemaker records, I would still push for holter monitoring (7-10 days) or longer, since this would pick up and record all arrhythmia episodes, (fast, slow, normal speed, irregular and regular arrhythmias, including ectopics). 

Remember pacemakers don’t lie - they respond to how they are programmed.  If your EP technician sets up your pacemaker to ignore an arrhythmia that doesn’t meet the criteria to be recorded or stored in the pacemaker, some arrhythmias could be missed.  Even ectopics when prolonged can cause many of us distressing symptoms. My pacemaker is set to aggressively ignore PACs and PVCs for example, so getting to know what is set up in your pacemaker will be helpful.  By the way I have AF with a rapid ventricular response rate while hubby has AF with a slow ventricular rate, but AF can occur at a normal heart rate too, when it can be asymptomatic.  Good luck and hope you get some answers

Update

by Swangirl - 2022-07-11 15:48:49

I'm searching for a new EP.  The one I have is so impacted and stressed he is not available to help me with my pressing problem, that my heart rate would increase with exertion.  He claims I am "stable".  I did get a copy of the last interrogation and my AF Burden is < 1%.  He wanted me to either take the Eliquis or get the Watchman.  Are any of you on anti-coagulants?  The CHA2Ds2 risk score gives me 2 since I am a woman over 75 and for no other reason--no CVD, no CAD, no HBP, no diabetus. My device is 79% atrial pacing and > 99% ventricle which is expected for heart block.  How would I know if I am in heart failure?  My EF is 60% but I don't think that means much.  Have any of you had the BNP blood test for heart failure and is it reliable?

Thank you so much.  You all have been so helpful and just to talk about this subject feels so supportive.  

Thank you for the update

by Gemita - 2022-07-11 19:27:48

Dear Swangirl, my AF % burden is just slightly more than yours and yes I am on anticoagulation with the same risk factors - over 65 (73 yrs + female).  I do not have any other risk factors either.  It only takes a short run of AF to put us at risk.  I held off for as long as I could but AF is so dangerous.  Because of low body weight (under 60 kg) I am on once daily dose Edoxaban 30 mg, so is husband who is 83.  No side effects at all.  Anticoagulation and rate control are the two most important treatments for AF.

I am 98% atrial paced and only 1% ventricular paced, so very lucky.  How would you know if you were in heart failure?  By your symptoms generally.  Fatigue, fluid retention, shortness of breath, chest pain, worsening arrhythmias.  They start to worry here in the UK (and the States) when our ejection fraction is less than 35%, normal ejection fraction would be around 50-70%.  Your 60% ejection fraction would appear normal, although you could have heart failure with "preserved" ejection fraction. 

Yes I have had several blood tests (troponin + BNP).  I have also had right sided coronary angiogram.  It will be a variety of tests, including echocardiogram, bloods, chest X-ray to confirm heart failure and then heart failure can improve with CRT or medication/lifestyle, or treatment of any underlying infection or health condition or blocked artery.

Try not to imagine the worse Swangirl.  I know we all do, but the reality is often kinder.  I honestly feel that AF or other atrial tachy/brady arrhythmias are causing some of your symptoms.  Like me you are probably super sensitive amd highly symptomatic during an arrhythmia like AF, whatever its speed.

Thank You

by Swangirl - 2022-07-16 02:58:36

I appreciate your help Gemita.  Even if I don't imagine the worst, I am suffering everyday.  Tonight I tried to play pickleball.  Everyone scored on me because I played badly.  It was very hot tonight here in California and dripping sweat and gasping for breath I did my worst for 90 minutes.  I'm not going to put myself through that again but my life is ebbing away and I'm angry.  I have had a terrible time getting medical help for my symptoms.  The Sutter doctors here are stressed to the max and can't do what they are competent to do because there is no time.  I don't like being disabled.  It's hard to embrace disability and make the best of it but many people do and I admire them. Living for them is important desipte their quality of life.  I think we wade into this incrementally not knowing where it ltimately leads. If I could have seen the big picture I might have made very different choices.     

I do understand

by Gemita - 2022-07-17 04:59:43

Dear Swangirl,

I will private message you later today to see if I can help lift your spirits.  Your comment, "I think we wade into this incrementally not knowing where it ultimately leads. If I could have seen the big picture I might have made very different choices" tells me so much about you.  I think many of us feel this way too 

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