Anyone with a pacemaker/av node ablation still not feel well?

@fuzzybyrd55
I can emphasize with you. I was going to suggest you talk to your cardiologist about ablations for you AFIB but you have already done that.

What medications are you on? Many medications can help with this. What has your cardiac team suggested as something new to try?

Have you considered if you feel need more answers than getting to consider a second opinion at a major medical institutions that has an outstanding cardiology division like; Mayo, Cleveland Clinic, John Hopkins, etc.

I also struggled with AFIB and RVR for years. Five years ago I, too, had a pacemaker implanted. The title of this discussion indicates that you had an AV Node Ablation - but your text does not say that. Did you have an AV Node Ablation? I had one a year ago, and - while my heart is beating normally (due to the pacemaker), I also am in permanent AFIB. Like you, I had symptoms of AFIB, even though my EP and other physicians said I would not. When I asked my oncologist about some of my symptoms, she immediately contacted my EP who sent me to a different cardiologist than I had been seeing. It turned out that the settings on my pacemaker had to be adjusted! It was such a simple fix, but it made such a difference. So, you may see if you need your pacemaker "tweaked".

In addition, jc76 indicated that meds could be a cause of your symptoms. It is certainly amazing the side effects of some meds! One med I was on was toxic to my lungs, so my extreme shortness of breath was not related to my AFIB, but to the med I was taking. Checking with your cardiologist about your meds is a great suggestion.

Like jc76, I also empathize with you. Good luck finding your answers!

@jc76
Yeah Im considering that. My device clinic tech and doc suggested a crt instead of my current dual chamber, but my ef is currently in the 40s and would have to get sicker to get approved. Im definately considering 2nd options.

@bettycll
I did have the pace and ablate procedure. I was on amiodarone but stopped several years ago due to issues with it..i only take metropolol and a eloquis and entresto. I dont know. Ive had my pacemaker calibrated, checked, re-checked..ive inquired about pacenakee syndrome possibility.

Wow- I have very symptomatic afib and MVP with moderate regurgitation unless in arrhythmia (once) then it’s severe. Not bad enough yet for surgery per local Center of Excellence. I’m taken aback that your valve repair didn’t help. My Left Atrium is now beyond severely enlarged and ability to tolerate activity is very limited. A try at defitolide per the EP since afib started again 4 mos post ablation is on the menu but I keep thinking that without the valve repair it isn’t going to get better. Now started HFpEF🙄. Is your MV now working well? Can I ask, was your LA enlarged? I hate to think of going through an OH repair and have no improvement. Thanks.

@babheart
Yep..i went from moderate to severe pretty quick for mvp. Doc said train already left the station. My afib had been going for about 5 years before i jad the surgery. All my tests now look better as far as atrial size goes but did nothing for the afib and really didnt help with energy and just feeling any better. He said it was 100 the cause of mybafib though. Who knows.

Wow- did you have open heart or minimally invasive repair? It seems like so much to go through and not feel better! 🙏
My shortness of breath lightheadedness and fatigue are really limiting and I’m hoping there’s a way to improve it if not fix it. Next up is dofitilide 🤨

@babheart
I had open heart to fix it. Id had it for years but it suddenly got really bad after i had covid..we think thats what happened anyway. It was making my hf worse so needed to be done irregardless of the afib. Most feel better after the pace and ablate. Im just not one of them. I wont give up tho. Theres something somewhere thatll help..

About 4 months ago, I also had an AV node ablation and a pacemaker.
Still in constant A-fib and at times feel so weak and lightheaded.
Bad reaction to Eliquis (5 mg twice a day) with severe diarrhea to the point that I could not leave the house,
Now, for the past few days, I have begun a new blood thinner, Xarelto. Still waiting to see how I respond to this med.
Cardiologist thinks my pacemaker is doing just fine and will not change settings. See him in a year?
Having AV node ablation and pacemaker was to improve my quality of life, but I don't feel that way yet.
Yes, it is better than being in constant A-fib and wanting to die. Am I expecting too much?
78-year-old female.

@fuzzybyrd55 I am so sorry that the pace and ablate did not help you or rmig. I was 79 when I had the AV Node Ablation because I had been on nearly every med available, including amiodarone (like you) which caused me several issues, including lung fibrosis. I did have a separation in my procedure - had the pacemaker 4 years before the ablation. It took a while for my body to accept the pacemaker, so I was well recovered from that before the ablation and did not have to recover from both procedures at the same time. I truly wish you well and hope that your symptoms improve with time.