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PVC-induced cardiomyopathy? Anyone else?
Hi everyone-
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.
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.
Thanks for your post. My three year old daughter is having frequent PVC's (48,000+ from her last holter, which amounts to 35% total beats). It's been going on for a year and a half and they tried beta blockers which haven't worked. I too wonder what is her risk for sudden cardiac events or risk of cardiomyopathy. It seems this amount is not something to take lightly. Our cardiology team has been passive about this but we will see an electrophysiology team next week for visit holter and echo. Any questions I should ask? Thanks for sharing your experience.
Very happy for you! I think you hold the record for most number of confirmed PVC's per day. 60K is astronomical. Congratulations on your recovery!
Hi Nick-
I hope your ablation was/is successful! I too had an ablation, and it was successful and my heart function was back to normal after 4 weeks. Hope you're doing well. Please report back.
Mia
I hope your ablation was/is successful! I too had an ablation, and it was successful and my heart function was back to normal after 4 weeks. Hope you're doing well. Please report back.
Mia
Hey: I too have cardiomyopathy that was caused by high PVC. I was 31 and going through a long and drawn out work situation and now lawsuite. Meds started to make me feel water right away as soon as they found one to stop the PVCs. For me it was sotalol 140 mg twice daily. with a couple of months my PVCs were virtually gone. Initially my heart function was below 30% EF. After a 1.5 years on the meds, it has steadily gone up, and my EF is 50%. I was also put on Coversyl and Spirolactine which is a water pill that also strengthens the heart muscle. I am getting an ablation done next week and hopefully it works. I also lost weight and tried to do as much walking everyday and I mean everyday, to strengthen my heart muscle. This worked for with a low salt and healthier diet. I hope this helps someone else recover from this, It was a long road for me.
Nick
Nick
Hey: I too have cardiomyopathy that was caused by high PVC. I was 31 and going through a long and drawn out work situation and now lawsuite. Meds started to make me feel water right away as soon as they found one to stop the PVCs. For me it was sotalol 140 mg twice daily. with a couple of months my PVCs were virtually gone. Initially my heart function was below 30% EF. After a 1.5 years on the meds, it has steadily gone up, and my EF is 50%. I was also put on Coversyl and Spirolactine which is a water pill that also strengthens the heart muscle. I am getting an ablation done next week and hopefully it works. I also lost weight and tried to do as much walking everyday and I mean everyday, to strengthen my heart muscle. This worked for with a low salt and healthier diet. I hope this helps someone else recover from this, It was a long road for me.
Nick
Nick
Hi-
So sorry that you too are suffering from frequent PVCs. They are such a nightmare and it seems like most of the research concerning if they are actually benign are not is relatively new so some doctors really aren't caught up on the new studies. I've also realized there is a huge divide between the traditional "medicine" cardiologists and the surgeons and electrophysiologists who take a more drastic, invasive approach, which can be more risky, of course, but with potentially far bigger gains (like a cure instead of years of meds which may be hard to tolerate).
I wish I had all the reports of my earlier holters, but I remember them for the most part- first one, at 20, was about 11,000, then follow-up holters were 8,000, 5,000, and another at about 12,000. The thing is, these were all more than ten years ago. I was basically told to stop coming back just for PVCs, that I was being over-anxious and a bit of a nuisance. I don't know if, when I had episodes before this year, the frequency was increasing incrementally or not. I do know that when this episode hit in May, it was noticeably much worse than the others because I basically didn't get any respite from them- I woke up with them, they went on all day, and went to sleep with them. The beta blocker I'm on- Coreg, actually does help a little bit, but certainly doesn't control them completely.
The funny thing is, I am so used to the PVCs that I don't experience any symptoms other than the uncomfortable feeling of them, the actual palpitations, which until I found out about the cardiomyopathy had ceased to bother me. "They're benign, stop asking for an EKG!". However, I know that for many, maybe most people, PVCs can be mildly to moderately disabling, even without anything like cardiomyopathy. In my earlier bouts of PVCs, I was so intensely frightened that I voluntarily stopped most vigorous activity, terrified that I would set off a torrent of them. The anxiety definitely made me very tired. I'm doing that again, but I don't actually feel shortness of breath or fatigue, I'm just really scared to do anything and of course, the anxiety has kind of gone to terror level.
Answering your post now. I think you're lucky to be dealing with the PVCs now, before anything happens. And thank you so so much for your kind thoughts. I will update on my progress. I am hopeful, but worried.
So sorry that you too are suffering from frequent PVCs. They are such a nightmare and it seems like most of the research concerning if they are actually benign are not is relatively new so some doctors really aren't caught up on the new studies. I've also realized there is a huge divide between the traditional "medicine" cardiologists and the surgeons and electrophysiologists who take a more drastic, invasive approach, which can be more risky, of course, but with potentially far bigger gains (like a cure instead of years of meds which may be hard to tolerate).
I wish I had all the reports of my earlier holters, but I remember them for the most part- first one, at 20, was about 11,000, then follow-up holters were 8,000, 5,000, and another at about 12,000. The thing is, these were all more than ten years ago. I was basically told to stop coming back just for PVCs, that I was being over-anxious and a bit of a nuisance. I don't know if, when I had episodes before this year, the frequency was increasing incrementally or not. I do know that when this episode hit in May, it was noticeably much worse than the others because I basically didn't get any respite from them- I woke up with them, they went on all day, and went to sleep with them. The beta blocker I'm on- Coreg, actually does help a little bit, but certainly doesn't control them completely.
The funny thing is, I am so used to the PVCs that I don't experience any symptoms other than the uncomfortable feeling of them, the actual palpitations, which until I found out about the cardiomyopathy had ceased to bother me. "They're benign, stop asking for an EKG!". However, I know that for many, maybe most people, PVCs can be mildly to moderately disabling, even without anything like cardiomyopathy. In my earlier bouts of PVCs, I was so intensely frightened that I voluntarily stopped most vigorous activity, terrified that I would set off a torrent of them. The anxiety definitely made me very tired. I'm doing that again, but I don't actually feel shortness of breath or fatigue, I'm just really scared to do anything and of course, the anxiety has kind of gone to terror level.
Answering your post now. I think you're lucky to be dealing with the PVCs now, before anything happens. And thank you so so much for your kind thoughts. I will update on my progress. I am hopeful, but worried.
Oh, and i'm really curious if you have noticed fatigue as a clear symptom of your PVCs and if so; was it always there from the start? Or was there a moment when it really started to kick-in (like, over the 25,0000 a day mark)?
I'm struggling with trying to understand if my fatigue and excersice intolerance are a symptom of the PVCs and therefore will clear up with an ablation, or whether the PVCs and fatigue are both symptoms of some same underlying disorder.
No doctors can answer me that question.. which makes the ablation decision really hard.
I'm struggling with trying to understand if my fatigue and excersice intolerance are a symptom of the PVCs and therefore will clear up with an ablation, or whether the PVCs and fatigue are both symptoms of some same underlying disorder.
No doctors can answer me that question.. which makes the ablation decision really hard.
Hi, thanks for sharing. the topic of PVC induced cardiomyopathy is a big one for me at the moment.. trying to decide whether to get an ablation for 24,000 PVCs daily which seem to be ever-increasing over the months (this episode has been going for 10 months now). It seems low in comparison to what you are going through.. but having watched my count go up and up over the year i wonder if i'm heading to where you're at.
I'm curious, do you have any figures for how your PVCs progressed over the years? What were your earlier 24h holter results? Was it a gradual increase over time or was this latest episode dramatically worse?
From everything i've read it seems that the EF will return to normal after the ablation - and that PVC -induced cardiomyopathy is reversible with the procedure. That is great news! And you are in an excellent position to get the ablation, having unifocal ectopics.
My cardiologists here in Germany say that beta blockers are known to be pretty much useless for these kind of very frequent PVCs (without a clear pathological source). I'm sure there are people who have other experiences - and in particular BBs must help when high blood pressure, or fast heartrate is a contributor or for people that have high anxiety levels that can be calmed with meds. But if none of those factors are what is causing your PVCs than taking BB probably wont help. Especially if the PVCs occur more frequently at low/resting heart rates.
And 60,000 PVCs would almost certainly be causing the low EF and cardiomyopathy - how could they not be??! So i'm pretty appalled that you had doctors telling you to simply take more meds for 60,000 PVCs. Crazy.
My own cardiologist has told me it's my own decision whether to ablate for the 25,000 PVCs.. he says "it wont make you live longer" but that instinctively as a care-giver he also doesnt feel comfortable to say that it's ok to live with such a high burden of ectopics.
I'm not a doctor, so this is obviously just my opinion based on extensive research and talking with various cardiologists and EPs.
I wish you all the best for the operation and please post your experiences back here.
Thanks!
I'm curious, do you have any figures for how your PVCs progressed over the years? What were your earlier 24h holter results? Was it a gradual increase over time or was this latest episode dramatically worse?
From everything i've read it seems that the EF will return to normal after the ablation - and that PVC -induced cardiomyopathy is reversible with the procedure. That is great news! And you are in an excellent position to get the ablation, having unifocal ectopics.
My cardiologists here in Germany say that beta blockers are known to be pretty much useless for these kind of very frequent PVCs (without a clear pathological source). I'm sure there are people who have other experiences - and in particular BBs must help when high blood pressure, or fast heartrate is a contributor or for people that have high anxiety levels that can be calmed with meds. But if none of those factors are what is causing your PVCs than taking BB probably wont help. Especially if the PVCs occur more frequently at low/resting heart rates.
And 60,000 PVCs would almost certainly be causing the low EF and cardiomyopathy - how could they not be??! So i'm pretty appalled that you had doctors telling you to simply take more meds for 60,000 PVCs. Crazy.
My own cardiologist has told me it's my own decision whether to ablate for the 25,000 PVCs.. he says "it wont make you live longer" but that instinctively as a care-giver he also doesnt feel comfortable to say that it's ok to live with such a high burden of ectopics.
I'm not a doctor, so this is obviously just my opinion based on extensive research and talking with various cardiologists and EPs.
I wish you all the best for the operation and please post your experiences back here.
Thanks!
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