Extreme shortness of breath

I have had a pacemaker for since 2015. It served me well for several years. In the last 2 years, I have had increased shortness of breath. This summer I was to the point of hardly functioning with super fatigue and weakened muscles and dizzyness and lack of balance. I also have mild muscular dystrophy. (I was not officially diagnosed until I was 67). I thought the muscular dystrophy was developing quickly and severely. I went in for a scheduled check of my pacemaker and had a different nurse than in the past. My oxygen reading was 95 just before the appointment and that was way down from my normal 99 or 100. I complained as always about my extreme shortness of breath and he told me that a-fib should not cause that. At the end of the session, he said that he turned it down to 60 from 65 since the higher rate was not helping. Then he said that he turned off the sensor which speeds up the heart with exertion because I might not need it. That seemed counterintuative to me but now I feel like my old self with energy, optimism, muscles and good balance. In all my previous research I didn't find anything about this solution. Has anyone else out there had a similar experience?


av block?

by Tracey_E - 2020-07-20 17:11:42

Are you paced for av block? Sometimes with av block the rate response (what they turned off) can compete with what our heart is trying to do on its own. I've never heard of it causing trouble that extreme but if you feel better with it off then who knows! The important thing is you feel good now. Some doctors leave it on just in case we need it, but it can interfere and cause problems. 

With av block, the sinus node works normally, raising and lowering our rate as needed based on oxygen levels. The signal to tell the ventricles when to beat gets blocked, so the pacer's job is to watch the atria and make sure the ventricles stay in sync. So the pacer's main function with av block is to play follow the leader and let our heart set the pace. Rate response is for people whose sinus node got lazy and doesn't go up on exertion like it's supposed to, so the pacer uses motion to determine when we need to go faster. It sounds like your pacer was jumping in when it didn't need to. 

Extreme shortness of breath.

by slbailey - 2020-07-20 17:23:37

Thanks for the feedback. None of my personal research said anything about that particular adjustment. As you said the important thing is that I'm feeling far better.

Extreme shortness of breath

by slbailey - 2020-07-20 18:31:06

I received my pacemaker because I was suffering from bradycardia. I fainted several times on airplanes and my pulse was dropping down into the 30s at night. I've had all kinds of tests in the last two years to try to figure out why I was so short of breath and my heart seems to be basically healthy with no plaque buildup or anything. My cardiologist tried his best to find the reason for my shortness of breath. 


by AgentX86 - 2020-07-20 22:15:30

Bradycardia is a symptom, not a problem.  It can be caused by Sick Sunus Syndrome, Heart Block (of four different forms), or something else, I suppose.  Bradycardia is simply defined as a resting heart rate below 50bpm. 

Tracy's point was that if you have SSS, you may (or not) need rate response.  If your Bradycardia is caused by heart block, you probably don't need and don't want rate response turned on. 

The bottom line: if your heart is capable of raising its rate naturally, rate response can get into a battle with your heart's normal response.  This can cause all sorts of problems.  OTOH, if your heart cannot respond to your body's needs for oxygen, then rate response is a (poor) substitute and probably a good thing.  Pacemakers are all about YMMV.

shortness of breath and relationship with AF

by Gemita - 2020-07-21 05:19:10

Hello slbailey,

I am glad the problem has been resolved, that is what really matters.  

I would like to make a point about AF.  In my humble opinion it can and does cause symptoms of breathlessness for most of us from time to time depending on the speed of the arrhythmia and the length of time we stay in the arrhythmia.  The irregularity of the arrhythmia makes it difficult for me to tolerate and when I first developed AF I also developed my breathlessness, which was quite marked I do recall with minimum exertion.  Like you I have no structural heart problems, only electrical ones.

In regard to your search for an answer I wonder whether the higher heart rate setting of 65 reduced to 60 and then the turning down of the sensor that speeds up the heart with exertion have helped because perhaps in your case a higher heart rate or sudden increase in your heart rate on exertion might have been the trigger for your AF or a worsening of your AF?  I have the opposite problem, a falling heart rate was the trigger for my arrhythmias, including AF.  Just a thought but might be worth thinking about.  


Extreme shortness of breath

by slbailey - 2020-07-21 05:31:09

In my case I think I'm in chronic a-fib for the last several years. That is why I thought the a-fib was causing my extreme shortness of breath. I always felt good after cardio versions just as I do now but they were only temporary as a-fib would resume in about five days. I really appreciate the comments I've been receiving from everyone.



by Gemita - 2020-07-21 06:51:47

When you say you are in chronic AFib, does this mean that you have permanent AF or is it more "persistent" than permanent, in other words, you still have some periods of normal sinus rhythm albeit infrequently?  Have you tried different meds or an ablation, or are you hoping for relief from your symptoms with the pacemaker alone? 

My pacemaker has certainly helped with my symptoms and even in reducing (it seems to me) the length, intensity and frequency of my AFib episodes, although I realise that it cannot stop AFib completely as say an ablation might do.  But a pacemaker is still a tool we can use to help treat our symptoms and I am really glad the new settings are helping you.

The fact that you experienced brief periods of relief from your symptoms  following cardio versions clearly confirms to me that AFib was the likely cause of your symptoms of breathlessness and by chance your new settings, for the moment at least, seem to be addressing this problem effectively.


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I'm 35 and got my pacemaker a little over a year ago. It definitely is not a burden to me. In fact, I have more energy (which my husband enjoys), can do more things with my kids and have weight because of having the energy.