My story: I first noticed frequent PVCs when I was about 20 years old, had my first EKG, Stress Echo, Holter, etc... and everything checked out ok, was told PVCs, even when frequent are totally benign in a structurally normal heart...we've all heard that. The PVCs would wax and wane, sometimes seemingly going all day and night, and sometimes for months, even years, they were gone or at the very least I wouldn't notice them. When I had a particularly bad period, every few years, I would go and get it checked out and would be told PVCs were nearly always benign and my echo would always be normal. The last ten years or so, I've had brief periods of intense PVCs, never lasting for more than a few weeks, then mostly not noticing them unless I paid close attention and then I'd always be able to feel a few, so I chose to not check, and I stopped getting frequent cardio checks because I'd be told every time that they were totally benign and not to worry, no matter what the frequency.
Fast forward to May this year- I've had a crazy stressful year- both parents ill, child ADHD, divorce- kind of a nightmare- and the PVCs came back with a vengeance. Constant, all day and night, bigeminy most of the day, and yet I didn't worry as I've had so many cardiologists check me out and tell me that I was merely anxious. Then in late October, I had a mild lingering cough from a bug so I went to an urgent care clinic and was prescribed Tessalon (benzonatate), which I had a horrific allergic reaction to: bronchospasms, shortness of breath, unbelievable fatigue. I stopped the tessalon, the symptoms totally cleared up, but I decided to see a cardio to check myself out because of all the PVCs and the scary allergic episode. Dr noticed the constant PVCs, gave me EKG, holter, and echo, and shockingly, he discovered a lowered EF and sent me to the hospital for more tests. Had every blood test, cardiac MRI with contrast, everything. So many PVCs there was a "visual estimate" of 30-40% EF but no true calculation. No scarring, no evidence of myocarditis, just totally idiopathic non-ischemic cardiomyopathy.
Saw three cardiologists and they all had the same reaction: beta blocker and ACE inhibitor and we wait and hope the EF gets better. I asked about the PVCs, knowing that they are known to cause cardiomyopathy at high frequency but all three docs doubted I would have enough for that to be a possibility and I had get my hospital records to see I was having 30 PVCs/minute and then my holter results came back at over 60,000/24 hour. I booked an appt with electrophysiologist myself while all the cardiologists (was trying to find one I really liked and trusted) just wanted to up the meds and wait.
EP says 60,000 PVCs with no other cause is almost certainly causing the cardiomyopathy and ablation will very likely cure it. I'm having the ablation in two weeks. They are in one spot, so hopefully it will be successful, and the EP believes I'll be off all meds within a few months and feels quite certain the cardiomyopathy will reverse. I know that with PVC-cardiomyopathy- it's not confirmed until the heart function returns to normal, so fingers crossed for a successful ablation and then the healing.
I know I've seen PVC-induced cardiomyopathy described repeatedly as "rare". I'm not sure if it's considered rare because few people have 25,000 PVCs or more daily, or if many people DO have that many and are fine. I know that none of the doctors I've seen, including doctors with over 30 years experience, have encountered 60,000 PVCs.
Anyway- haven't seen anyone post about PVC-cardiomyopathy in a while. Was curious if anyone else is going through this and also wanted to let everyone know that you should always always question what seems like inadequate care from even the best doctors. I had to seek out this treatment myself, which if is successful, will be curative, and three cardios wanted to drug me for life. Oh, and I'm 38, no other health problems.