Post Pacemaker/Pacemaker syndrome

I am 3 mos. post pacemaker and most days feeling miserable.  Symptoms include headache, dizziness/lightheaded, fatigue, sometimes rapid heartbeat.  My electrophysiologists says my numbers are great and he is not listening to my symptoms. I think this must be a pacing problem. I have been reading about Pacemaker syndrome, which includes all of these symptoms.  Has anyone had a similar experience?  I am very discouraged and getting depressed. 


3 Comments

Keep pushing!

by arentas80 - 2020-02-04 21:23:30

Go back to your Cardiologist. See what they say. Just don't give up. If you don't feel well you keep pushing. I was almost at the point of lying to make them believe me. Sometimes it's that extreme but take care of you always. Don't give up hope. Wish you the best!

-A

Same

by CMH22567 - 2020-02-05 01:25:12

Hi, I was the same, especially in the beginning (under one year). I felt like this for 6-9 months. I would feel dizzy, short of breath, fatigue. I had to get a disability parking permit for 6 months because I could not walk more than 60 meters.  It was not until you get a good pacemaker check and they get the setting right that you will feel better. The downside is it could still be heart failure. The upside for me is they changed my minimum beats per hour from 60 to 70. Do what you can when you can. Take care.

Start with the easy answers

by Gotrhythm - 2020-02-06 13:44:17

I have lots more experience than I ever wanted with pacemaker issues. And I  have been diagnosed with pacemaker syndrome.

I don't know if you have it or not. It's actually pretty rare. But here's your problem. The symptoms you mention are vague. I know they don't feel vague to you, but lots of conditions from the flu to carbon monoxide poisoning could be causing you to feel the same things. 

Telling the doctor about these symptoms just doesn't give him enough to go on. Before concluding you have pacemaker syndrome, there are a lot of posssibilities that need to be ruled out first.

Honestly, first of all, I'd wonder if your settings need to be tweaked. When I started down this path I didn't even know I had settings! Did you know? Do you know what your settings are?

It can take a while to get your pacemaker adjusted so that the settings are ideal for you. But it's worth the effort.

Now I'm going to tell you a hard fact. Going in complaining about dizziness. fatigue and light headedness might get sympathy, but it will get no respect, no matter how often you do it.

Before jumping to pacemaker syndrome, the starting place for you is to learn about your pacemaker and your settings. That's what will get respect and make them start listening to you. When you know what your settings are, you can ask about changes that could help. 

Seriously, fifteen minutes with a tech could be the answer. Going from 65 to 70bpm made all the difference in the world to how I felt. 

Your setting solution could be different but it really could be just that easy for you.

 

 

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