Ablation vs med management?

Has propafenone been tried? Multaq, Sotolol....? I don't know how you'll feel about my advice, nor how my advice will be taken by the good folks who monitor the discussions at Mayo, but on the afibbers.org forum where I am, the two chief moderators both have extensive experience on the subject, and both have been successfully ablated by Dr. Andrea Natale of Austin Cardio in TX. He is well known, travels to several hospitals, mostly out west, and performs ablations and watchman implants almost daily. He was trained by the vaunted Dr. Pierre Jais in France. If you are not averse to travel, and want one of the top 10 electrophysiologists on the planet....

Hello @megansims. I'd like to invite @diane69, @kai, and @danab who have all undergone two ablations.

@megansims - Am I understanding correctly that you have already had two ablations and you are considering a third? Or did I misread that as you are potentially facing your second ablation but your provider wants to try medications first.

If you are comfortable sharing, what sort of side effects have you been experiencing and have you shared them with your provider?

Thank you for the advice! Appreciated greatly!! Multaq, Sotolol are not appropriate for my situation, but we did try Multaq. I will look into an outside EP consult/ablation as well. Thank you!!
As for the ablation, I had one successful ablation in 2021 that lasted a year and a half. The second ablation was attempted but they were unable to induce the rhythm so they recommended medical management. I have mostly CNS side effects (headaches , anxiety/agitation, nausea, dizziness, etc. I have a normal blood pressure that is low, so I have less room to wiggle with the heart meds. I am trying Norpace next but am cautiously skeptical as I have had so many issues. I know the ablation is not risk free, but it would be nice not to spend the rest of my life in meds (I am 48).

Hi @megansims
I know this post is about your heart issues but I read in another post that you were beeing studied because you had high Chromogranin and Serotonin levels. I am in the same situation, all my tests came back clear (gallium ct, endoscope…). Can I ask you if you finally find the cause?

Sorry for my english, I am spanish!

I appreciate your answer, I am really anxious about this, thank you!!

Ask about pulsed field ablation. The latest/newest. Google it. Don’t mess around with drugs for life. I’ve had four ablation procedures, and have taken drugs to control afib. Avoid drugs if you can. Side affects can be a real problem. I took Sotalol, and it had an adverse affect on my breathing, and ability to exercise. Pulsed Field Ablation has a recovery time of three months. After recovery I’m hopeful I will be able to leave all heart drugs behind, August 1st, 2024. So far so good.

Sorry. I am just now seeing this mesaage. No, they have never found a source, although all my results seem to indicate some sort of Neuroendocrine issue. I have learned to relax about it because they just can't find it. They can be as small as a pepper flake. I had a really good doc at Mayo that said they can be so slow growing that I may die of old age before the neuroendocrine issue ever becomes an issue.

How are things going for you? I ended up with a Vasculitis from Verapamil. It was terrible. No more meds.for.me.

I’m alright. However I hate taking Diltiazem, and Flecainide. The two medications are usually giving for at least three months to everyone after the Pulse Field Ablation Procedure. They do it help you remain stable I have my three month doctors appointment tomorrow, and hope I will be removed from both drugs since I have not experienced any afib since the procedure. Please let me know if you have anymore questions. You can email me at: 1151topper@gmail.com

I just read about Vasculitis, and Verapamil. So sorry this happened to you. Hopefully you can be successfully treated. I guess steroids are used as a treatment.