Getting back to normal

While searching for answers I ran across this message from BY EAP 2017-09-28 01:37:13  it's now 2023, and I am curious if she/he ever got back to some sense of normalcy.  I had my implant in October 2018, I feel worse now than I did then with my low heart rate. I actually went in to the clinic for a strep test, and a week later I have a PM for 2nd degree heart block and bradycardia. No history of heart issues prior.  My doctor has made numerous adjustments, but still having palpitations, heart racing with the smallest activity, tiredness, etc  The exact same issues as EAP, hoping there might be some way to contact this person  



Confused = very

by AgentX86 - 2023-07-08 23:49:01

"I had my transplant in October 2018"

Doesn't square with:

"No history of heart issues"


by Lavender - 2023-07-09 01:07:07

You can send a private message to eap. At the top left is a bell shape. Click that and you can compose a private message. Private messages alert a person's email that there's a message awaiting. 

Instead of transplant, I think you meant implant of your original pacemaker. (?)


I think you meant implant

by AgentX86 - 2023-07-09 02:17:51

Ah, I see, said the blind man as he picked up his hammer and saw.

The rest makes sense now.  Pacemakers don't fix arrhythmias or tachycardia (technically an arrhythmia).  They can only deal with Bradycardia.  You have to have these treated separately. I'd suggest getting an EP (electrophysiologist) involved.  An EP is a cardiologist who specializes in electrical issues/rhythm disorders.  He's the electrician for your heart, where the cardiologist is the plumber.

link below gives details of what you found in your searches

by Gemita - 2023-07-09 04:34:07

SMurphy, yes Lavender and AgentX86 are no doubt correct unless you have since had a heart transplant? 

Anyway, copy and paste the link below into your main browser to open and then click on the poster eap which will take you to her Bio details, and then click on send a private message to eap.  I see from the thread she was having some sleep problems (sleep apnea) which would have been a potentially strong trigger for her symptoms.

You say you originally had a Strep infection.  Any infection can cause worsening electrical disturbances.  Presumably it was effectively treated?  I recall when I had Covid, my heart palpitations were worse than ever.  

As AgentX86 says a simple pacemaker (without a defibrillator) cannot stop a fast arrhythmia.  A pacemaker can prevent our heart rate falling below the lower rate limit but cannot stop our hearts from racing unfortunately.  Other treatments like medication (for example a beta blocker) or an ablation may be helpful.  

Do try to contact eap if you think that would help, although I have to say most of us here have experienced this problem and continue to have high heart rate events.  It is all about finding the potential source (not always only pacemaker related) and then treating the cause (?infection, electrolytes, other health problem?)

Yes, I meant implant!

by Smurphy62 - 2023-07-09 08:57:06

Yes, I did mean implant!  Thanks for picking up on that, and also for all of the advice and the links.  I will be following up and looking for answers. I see my heart doctor early fall, this will help me gather information before then. I always feel like such a dummy when I go for my check up. Even though he has tried to make adjustments, it doesn't help. I sometimes wonder if my device needs a recall, or maybe wasn't the best choice for me, or is the new normal? So frustrating. 

EAP isn't the only one. Many Club members have similar histories and issues

by Gotrhythm - 2023-07-09 12:22:23

I well remember how confused and frustrated I felt after I was diagnosed. It took me a while to realise that information about my condition would be given only if I asked a direct question--but of course I knew nothing about arrythmias--I'd never heard of them!--and had no idea what to ask.

As for what the pacemaker did for me. Honestly, I did feel better with the pacemaker, but no where near as good as what I had felt on the good days. It was really depressing to think I was doomed to live with something that kept me feeling half-alive.

Like you, I had no history of heart problems. The reverse in fact. A full cardiac workup showed that my heart was remarkably healthy and strong. "Normal." It just made no sense that suddenly they're saying I had to have a pacemaker--right now! But I've learned that our situation isn't that uncommon among pacemaker recipients. Look at the poll that's being run by Pacemaker Club right now. 36% say they take no medications at all, or no heart medications. Actually, I don't take any.

I was especially disappointed and frustrated to realise that my pacemaker didn't control the palpitations. I thought "well what good is it?" 

I've said all this just to show you you are not alone in what you have experienced and the frustration you feel. I should add that by learning to ask better questions, and give better feed back, I was able to get the pacemaker settings adjusted to where I could feel good, actually good much of the time. Palpitations could be reduced, though not eliminated, and a better understanding of them helped make them more bearable.

You have been given good answers by the others who have responded to you post. Since you have already discovered the archive section, let me suggest you do a search for palpitations. You will see a pattern both in the posts and in the replies.

I hope you can feel better soon, and I believe it's possible that you can.

You know you're wired when...

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Member Quotes

A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.