RBM20 w S-ICD and VTach
48 y/o male here. Thanks for everyone who contributes to this group, I’ve found a lot of info here over time and it’s helpful.
I wanted to share a little of my ongoing saga to see if anyone has anything similar and really just compare notes. My mom passed in 2015 unexpectedly at age 62, we did some genetic testing as part of a university cohort and found she along with many of her family members, including myself have the RBM20 genetic variant. Really never had any issues and have led an active life. Fast forward to right around early 2021 and I started to experience afib. I was under the care of a regular cardio doc and started to see an EP due tot he afib; it wasn’t debilitating for me just annoying when it would happen and my doc implanted a Boston scientific s-icd in late 2021 as some insurance.
My afib persisted and in early 2023 I had an ablation and successfully removed it. Never had any further afib and as of early 2026, my device never went off
Fast forward to mid February 2026, I had an episode of VTach which shocked me twice and successfully controlled the VT. Over the next few weeks, I had two different VT episodes, a total of 6 more shocks. Ended up in the hospital, got put on Amiodarone as a bridge until I could get a VT ablation.
End of April, had the procedure but the doc was unable to find the arrhythmia as it was deep in my heart tissue. Path forward was decided to stay a couple days longer and begin Sotalol, 80mg twice/day + 6.25mg carvedilol (I had been taking carvedilol for a few years at this point as a precautionary measure).
I feel much better off the Amiodarone and generally I feel pretty good. I am two weeks past the failed ablation but seem to be good on the current meds, working out again (easing into things) and I haven’t had any episodes or shocks for almost three months now. I do seem to still have some anxiety, I was given a low dose (25mg) pregabalin which i am still taking twice a day…I’m going to start waning off of this.
The shocks still linger in the back of my head but it’s more mental than anything. It’s been a weird feeling months here but feel like I’m headed in the right direction. Long term I guess one thought is my ICD battery will need replaced within a year and they might possibly change it out to a never device which is more targeted for VT therapies and does have some pacing functions (so in concept it attaches unlike my ICD which doesn’t).
If anyone has RBM20 or anything similar - good or bad w the medicines or anything relatable - appreciate any thoughts. Thank you!