Ablations and medications not keeping away afib episodes

Posted by bryalmom @bryalmom, Dec 19, 2021

I've had two ablations in the past year and am currently taking sotalol and eliquis. I am having afib episodes at least monthly and this month have had one each of the past two weeks. During the episodes I feel weak and lightheaded. The episodes used to last 4-6 hours and since I have been on sotalol they are lasting 12 to 25 hours. Fortunately, each time my heart rhythm has converted to sinus rhythm on its own. I am currently feeling like I can't travel or plan anything because I am concerned I will have an afib episode. My hospital has temporary EPs coming in since my regular EP quit. Is there some kind of a research program at Mayo in Rochester that I could apply to be a part of? This continuing fear of episodes is affecting myself and my family.

Interested in more discussions like this? Go to the Heart Rhythm Conditions group.

Hello Bryalmom and welcome to Connect.

My dad was heart patient and during the times he was in the hospital, I could see the Afib rhythms on the monitor. He did have an episode one time at home where he had collapsed on the floor, and then recovered because his pacemaker with a defibrillator fired and reset his heart rhythm. After that, he did have an ablation and that may have been due to a misfire in the ventricles. He had been admitted to the hospital under observation and nothing happened until he was going into the restroom before he was to be discharged, and his heart misfired and the defribillator paddles were used to reset it. I'm not sure if that is relevant to your situation. He had also been on medications for this. He had a heart monitor next to the bed that reported data from his pacemaker and automatically sent it to the doctor's office.

I searched for clinical trials at Mayo for Afib and I found this page with a lot of results. There are specific criteria for qualification for any clinical trial, and if you click on the links for any of these studies, you can find more information.
https://www.mayo.edu/research/clinical-trials/diseases-conditions/atrial-fibrillation/
You can find the Mayo Electrophysiology department at this link. https://www.mayoclinic.org/departments-centers/electrophysiology-laboratory/overview/ovc-20442531

If you wish to seek care at any of the Mayo Clinic campuses, you may use this link. http://mayocl.in/1mtmR63

You may also be interested in joining other members who are talking about atrial fibrillation an heart rhythm disorders.

Ask your questions, share your story, connect and find support here:
https://connect.mayoclinic.org/group/heart-rhythm-conditions/
Here is a Mayo Clinic Q & A about Afib
https://connect.mayoclinic.org/event/video-qa-about-atrial-fibrillation/
If there isn't a clinical trial available to you, would you consider looking for a new specialist at Mayo Rochester?

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I had recurrent a fib episodes several years ago. A few times they converted on their own and one time I had to be cardio converted. My EP suggested that I have a pacemaker inserted. It was the best thing I ever did. The heart does still have episodes of AFib but you never feel it and the pacemaker keeps a normal rhythm because it runs the entire heart. I failed to mention that along with the pacemaker they did an AV node ablation which makes the heart completely dependent on the pacemaker. Of course I also take Xarelto to thin the blood and prevent a stroke. I have had the pacemaker since 2004 and I am soon to have my third new one in 1 1/2 years has the batteries do have a life limit.

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@breathe43

I had recurrent a fib episodes several years ago. A few times they converted on their own and one time I had to be cardio converted. My EP suggested that I have a pacemaker inserted. It was the best thing I ever did. The heart does still have episodes of AFib but you never feel it and the pacemaker keeps a normal rhythm because it runs the entire heart. I failed to mention that along with the pacemaker they did an AV node ablation which makes the heart completely dependent on the pacemaker. Of course I also take Xarelto to thin the blood and prevent a stroke. I have had the pacemaker since 2004 and I am soon to have my third new one in 1 1/2 years has the batteries do have a life limit.

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I am so glad I found your post. I have a icd/ defibrillator and a pacemaker first it was vtach/ v fib. Now it’s afib. My heart rate got so high with the afib that the defibrillator gave me 5 shocks. I went to the hospital the next morning when I got up to go to the bathroom it shocked me another 2 times. I stayed in the hospital for a week and my ep doctor done an ablation for afib. During my 2 week check up he discussed having an av node along with the watchman and adding a 3 lead to the defibrillator. I am so scared and full of anxiety. I would greatly appreciate talking with you

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Good morning. Just went back into sinus rhythm last night after 30 hrs of afib. I totally understand your anxiety. I can go months without an episode and then out of the blue, go into afib with rvr. It really knocks me off my feet. (Have had 3 episodes in 3 months, I get emotional because of how I feel and also the "why" factor. Why is this happening? What did I do? …
I'm on tikosyn (since 2018) and no anticoagulant. Calling my EP today to bring him up to date and see what my next options would be.
Thank you for your post. ❤

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I am permanently in AFIB. I don’t go back into sinus rhythm or rarely do. My heart rate is controlled however below 100 bpm. I can feel it some of the time . I am on a blood thinner and beta blockers . Just wondering if the people who have responded above have their heart rate controlled with AFIB episodes or if anyone else is permanently in AFIB.

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@lmurray03

I am permanently in AFIB. I don’t go back into sinus rhythm or rarely do. My heart rate is controlled however below 100 bpm. I can feel it some of the time . I am on a blood thinner and beta blockers . Just wondering if the people who have responded above have their heart rate controlled with AFIB episodes or if anyone else is permanently in AFIB.

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I am constantly in Afib and was told an ablation will not work for me. I take metoprolol and diltiazem to help with rate control. I had open heart surgery 3 months ago for valve repair and was hoping that would help my Afib but it didn’t. My rate is higher now!!!!

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What do they recommend for you next. I heard there is a procedure called the watchman. What that be an option for you?

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@lmurray03

What do they recommend for you next. I heard there is a procedure called the watchman. What that be an option for you?

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Well, I believe the watchman is to avoid blood clots. I had the appendage of my heart, where the clots form, clamped off during surgery. So I may be able to go off Xarelto. That makes me a little nervous though. I do have an appointment, with an electrophysiologist in May. We will then discuss options for controlling the Afib. This all just reaffirms that when you have good health you have everything!😊

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@breathe43

I had recurrent a fib episodes several years ago. A few times they converted on their own and one time I had to be cardio converted. My EP suggested that I have a pacemaker inserted. It was the best thing I ever did. The heart does still have episodes of AFib but you never feel it and the pacemaker keeps a normal rhythm because it runs the entire heart. I failed to mention that along with the pacemaker they did an AV node ablation which makes the heart completely dependent on the pacemaker. Of course I also take Xarelto to thin the blood and prevent a stroke. I have had the pacemaker since 2004 and I am soon to have my third new one in 1 1/2 years has the batteries do have a life limit.

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I'm an 83-year-old woman who's been dealing with afib since November 2017. I've taken several meds since: diltiazem, sotolol (both worked for months), tikosyn, dofetilide (both proved useless and horribly expensive), and most recently amiodarone. The latter has been useless, too (and high risk for side effects), so my cardiologist took me off it cold turkey I'll probably take metoprolol soon, but I'm getting cynical about all the meds tossed my way hoping something will work. I've been dealing with dizziness and breathlessness for past few years, and it's getting worse. I've had at least 4 cardioversions, and my cardiologist says I am not a good candidate for ablation. I asked him what's next, and he said "exercise." I've been exercising for years, and I'll continue to do it–exercise bike, balance and strengthening exercises, walking–but I do get tired, dizzy, and breathless. Has anyone had similar experiences, and if so, what has helped you, if anything?

I have a friend 3 years older than me who had afib and atrial flutter, treated by several cardioversions and ablations. Nothing worked, so two years ago she had a tiny pacemaker installed IN her heart. Her heart's electrical system depends on it because the doc had to ablate the sinus node (the heart's main switchboard) completely. She has more energy, but she sweats lots when she exerts herself. But she's much improved. I'm almost afraid to ask my doc if this would be for me, as I've been so disappointed with the ultimately ineffective pills and procedures I've had–and I don't want to be disappointed again. In the meantime, I feel I'm a sitting duck for a heart attack. Am wondering if I'll keel over doing exercise! Thoughts/suggestions would be appreciated.

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