JennKay Posted May 27, 2022 Report Share Posted May 27, 2022 Hi all, I am continuing to struggle with PVCs. I have been taking 10mg propranolol morning and evening, which helps with my other symptoms (adrenaline surges, brain fog, fatigue, sleep) but does absolutely nothing for the PVCs. I am wearing a 2 week Holter which will finish in a few days and I am eager to see my % PVCs per day. Although, I suspect it will be a low total overall burden. Maybe I'll be wrong... Anyway, in the last month the PVC "episodes," as I like to call them, happen in the morning when I wake, late evening right before bed, and sometimes randomly during day. Like right now... I will be in bigeminy, trigeminy, or will have a PVC every 5-10 beats for an hour, then things stop abruptly and they don't bother me for a few hours. Has anyone had a similar experience, where their PVCs typically cluster at certain times of the day? Did you ever figure out a cause and solution? I can't find a trigger for the episodes, but the one thing that is common is that the episodes always start when I am NOT doing anything. When I'm up moving around they usually go away. Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 27, 2022 Report Share Posted May 27, 2022 4 minutes ago, JennKay said: I can't find a trigger for the episodes, but the one thing that is common is that the episodes always start when I am NOT doing anything. When I'm up moving around they usually go away. I do get an uptick in PVC's when i am inactive more so than anywhere else. We have seen them on my stress tests as well. I also would get them noted when i was in Cardio Rehab as well but i know those were alcohol related from the night before Haha. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Alex D. Posted May 27, 2022 Report Share Posted May 27, 2022 Hi, I wore a 24 hour halter and had 22,000 ectopics with a total beat co7nt of 99,000. Like 1 in 4 beats I was going crazy. My cardiologist tried several meds until we hit on Propofanone,, it’s a live saver. I still have a few ectopic beets, but it’s like 10-20 a day. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 27, 2022 Report Share Posted May 27, 2022 1 hour ago, JennKay said: Hi all, I am continuing to struggle with PVCs. I have been taking 10mg propranolol morning and evening, which helps with my other symptoms (adrenaline surges, brain fog, fatigue, sleep) but does absolutely nothing for the PVCs. I am wearing a 2 week Holter which will finish in a few days and I am eager to see my % PVCs per day. Although, I suspect it will be a low total overall burden. Maybe I'll be wrong... Anyway, in the last month the PVC "episodes," as I like to call them, happen in the morning when I wake, late evening right before bed, and sometimes randomly during day. Like right now... I will be in bigeminy, trigeminy, or will have a PVC every 5-10 beats for an hour, then things stop abruptly and they don't bother me for a few hours. Has anyone had a similar experience, where their PVCs typically cluster at certain times of the day? Did you ever figure out a cause and solution? I can't find a trigger for the episodes, but the one thing that is common is that the episodes always start when I am NOT doing anything. When I'm up moving around they usually go away. Mine don’t seem to have a time of day pattern, but I had an average of about 1800 a day if I remember right. I’m on metoprolol at night and acebutolol during the day. The acebutolol seems to help quite a bit. IV fluids help, too. I use taurine to dampen the discomfort as well. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 27, 2022 Report Share Posted May 27, 2022 @JennKay - I used to get a LOT of PVC's whenever I was active or inactive. Metoprolol, propanolol and bistolic did not touch them. The beta blocker that stopped them completely was Carvelidol. Quote Link to comment Share on other sites More sharing options...
JennKay Posted May 27, 2022 Author Report Share Posted May 27, 2022 Thanks all for your responses. @Pistol -- I was thinking it might be worth trying another beta blocker like Carvelidol. I tolerate propranolol much better than metoprolol or atenolol, I almost feel like my "normal" self on propranolol except for the PVCs. It seems like many of us do better with non-selective beta blockers. Maybe the non-selective ones do a better job at balancing things compared to selective betas? It took me months to deal with the side effects of metoprolol. Anyway, I'm thinking my EP will want to see what the Holter shows before making changes. I will ask about Carvelidol, though. I messaged his office this week out of desperation and his PA mentioned we could try flecainide, but I would prefer to try one more beta blocker first. @Alex D. -- That is ridiculous!! Were you offered an ablation? Sounds like you have found something that works for you, which is great 😀 I would love a day where I only have a handful of PVCs. Do you feel pretty good on propofanone otherwise? @MikeO -- You are brave to have a drink! I've given up alcohol and am afraid of what would happen now with my PVCs... Would probably be up all night dealing with them after one glass of wine! Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 27, 2022 Report Share Posted May 27, 2022 @JennKayI can safely confirm alcohol will cause PVC's. All i can say you are better off not tipping a glass. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 27, 2022 Report Share Posted May 27, 2022 I can’t have non-selective ones due to my asthma, so I’ve only tried these two. Acebutolol doesn’t make me tired, and has more anti-arrhythmic properties. I was offered flecainide and an ablation, but I was cautious. Quote Link to comment Share on other sites More sharing options...
JennKay Posted May 28, 2022 Author Report Share Posted May 28, 2022 @RecipeForDisaster - thanks! I will also ask my EP about acebutolol. I didn't realize it had more of those properties. There are so many beta blockers, I guess I will just have to keep trying until one works. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 28, 2022 Report Share Posted May 28, 2022 It was a cardiologist in Boston who suggested I try it. I was hesitant. It’s strange in that it actually seems to make you more alert vs. tired like metoprolol does for me. But yes, there are so many different ones to try. I don’t know if all of them help with ectopics - I don’t think metoprolol did for me. I also had a lot of bigeminy and trigeminy. I seem to get more of those if my HR much under 60. Which would be if I took more of a beta blocker - that’s one thing that prevents me from going higher. Quote Link to comment Share on other sites More sharing options...
JennKay Posted May 28, 2022 Author Report Share Posted May 28, 2022 @RecipeForDisaster -- It looks like acebutolol can stimulate as well as block the beta receptor, so this is probably why it causes more alterness than other betas? And, that is definitely what is happening to me, when my HR drops to about 60ish, this is when the PVCs go bonkers. That is why I thought they were happening more at night before bed, when I am trying to relax and unwind for the day. These episodes also started happening more as I was gaining a bit more energy back and was trying to walk a little farther each day, per the suggestion and encouragement of my EP. The PVC episodes aren't happening when I walk, but a few hours after walking. It doesn't make sense to me! Quote Link to comment Share on other sites More sharing options...
Sushi Posted May 28, 2022 Report Share Posted May 28, 2022 I found that fish oil supplements caused PACs for me. Searching the literature, I found that fish oil can be either antiarrythmic or pro arrhythmic, so this is just another variable to look at. Good luck! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 28, 2022 Report Share Posted May 28, 2022 10 hours ago, JennKay said: @RecipeForDisaster -- It looks like acebutolol can stimulate as well as block the beta receptor, so this is probably why it causes more alterness than other betas? And, that is definitely what is happening to me, when my HR drops to about 60ish, this is when the PVCs go bonkers. That is why I thought they were happening more at night before bed, when I am trying to relax and unwind for the day. These episodes also started happening more as I was gaining a bit more energy back and was trying to walk a little farther each day, per the suggestion and encouragement of my EP. The PVC episodes aren't happening when I walk, but a few hours after walking. It doesn't make sense to me! Yes, that makes sense. So, I take one in the morning and one at night. We are so hard to figure out. During my exercise stress test, the PVCs decreased a lot. When they first hooked me up, I had so many that they immediately referred me to an EP (I had a few cardiologists but not one of those). I have more PVCs after I eat, and I’m careful not to lower my HR too much. I like it between 60-70 or so if I can. Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 30, 2022 Report Share Posted May 30, 2022 Does anyone notice changes in their hearing when you get a rash of PVC's? Quote Link to comment Share on other sites More sharing options...
JennKay Posted May 30, 2022 Author Report Share Posted May 30, 2022 Sometimes I get transient tinnitus when things are acting up. One cardiologist told me parasympathetic activity can cause ringing in the ears. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 30, 2022 Report Share Posted May 30, 2022 I start to lose my hearing when I’m going to pass out, or when I change position these days! Quote Link to comment Share on other sites More sharing options...
JennKay Posted June 8, 2022 Author Report Share Posted June 8, 2022 Alright, just got my Holter monitor results back and am scheduled to chat with the EP next week. This is incredible, look at the pattern of my hourly PVC burden in the attached image. It matches my symptoms EXACTLY. My PVC burden is a lot worse b/w 6pm and 6am. I also had a run of a 4 beat NSVT at 3am, which completely freaks me out. My last Holter also caught a 5 beat run of NSVT. I've been reassured multiple times that it is nothing to worry about b/c my heart is structurally normal, but the fact that it is happening in my sleep at 3am is concerning to me. I was laying down in bed asleep and it was provoked! I've argued multiple times that I think my PVCs are more associated with parasympathetic dominance. I think this is more evidence for that, potentially. I've also read that sympathetically driven PVCs usually calm down at night. Mine clearly do the opposite. Do you all have any other thoughts? I am pretty shocked by this pattern. Hopefully this will finally get someone's attention. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 8, 2022 Report Share Posted June 8, 2022 Well the good thing is In the large majority of cases, idiopathic VT (and VE) is a benign condition. I am sure your cardiologist will work this out for you. We have caught the early (3AM) events with my holters as well but i have for whatever reason have gotten out of them (lack of sexy dreams maybe? Haha) I am pulling for you i am sure you will solve this. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 8, 2022 Report Share Posted June 8, 2022 On 5/27/2022 at 5:54 PM, RecipeForDisaster said: I was offered flecainide and an ablation, but I was cautious. Flecainide and Propofanone are both the same class of antiarrhythmics and have black box warnings (with reason: I just had complete heart block from Flecainide). Beta blockers do not have these warnings. Also, from the cardiac forums I follow, some find that Magnesium Taurate helps a lot with ectopics. Quote Link to comment Share on other sites More sharing options...
JennKay Posted June 8, 2022 Author Report Share Posted June 8, 2022 @MikeO -- I hope we can solve this too!! I'm guessing they may not have seen this type of pattern before. @Sushi -- I've been offered flecainide too, but I really don't want to go in that direction for the reasons you listed. I'm secretly hoping this is something that can be ablated. An ablation scares the crap out of me, but if it would be curative, then I would do it. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 8, 2022 Report Share Posted June 8, 2022 18 minutes ago, JennKay said: I've been offered flecainide too, but I really don't want to go in that direction for the reasons you listed. I'm secretly hoping this is something that can be ablated. An ablation scares the crap out of me, but if it would be curative, then I would do it. Hey, have you seen the thread here about cardioneuroablation? This is cardiac ablation that also ablates the autonomic ganglia in the heart--in other words, your secret hope! I am accepted for an ablation and am trying seeking the details of the protocol used by the EP who is pioneering this procedure. I hope to have it included in my Afib ablation. Quote Link to comment Share on other sites More sharing options...
JennKay Posted June 9, 2022 Author Report Share Posted June 9, 2022 @Sushi -- I did see that thread and was wondering if that was applicable to my situation. I will ask my EP about it at our appointment Monday. I would love it if this is true and would correct things. If I remember correctly, you had been using flecainide for Afib, right? And, your post said you had to stop b/c you developed heart block. You have been a show that your Afib is not sympathetic-driven? And if so, how did you do this? I am beginning to think that my adrenaline symptoms are a reaction to the over activity of my vagus nerve, that is the only way my body can correct itself. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 9, 2022 Report Share Posted June 9, 2022 2 hours ago, JennKay said: did see that thread and was wondering if that was applicable to my situation. I will ask my EP about it at our appointment Monday. I would love it if this is true and would correct things. If I remember correctly, you had been using flecainide for Afib, right? And, your post said you had to stop b/c you developed heart block. You have been a show that your Afib is not sympathetic-driven? And if so, how did you do this? I am beginning to think that my adrenaline symptoms are a reaction to the over activity of my vagus nerve, that is the only way my body can correct itself. Yes, Flecainide gave me complete heart block which can be fatal--luckily I had a pacemaker though, even with it compensating, it was awful! This procedure may be applicable to you, but I doubt if many EPs know about it. The EP who is doing my ablation has done more ablations than anyone else in the US and said that he would ablate the autonomic ganglia (he knows that I have Dysautonomia) but I want to be sure that he is aware of the exact protocol used by the doctor referenced in the cardioneuroablation thread. Autonomic testing showed that my parasympathetic and sympathetic systems are sort of competing to run the show but that the parasympathetic is dominating. So I responded well to Strattera which is a norepinephrine reuptake inhibitor. As I understand it, this would make me a good candidate for cardioneuroablation, though I am not sure I fully understand it. I think that it is quite possible for adrenaline symptoms to arise from the body trying to compensate for an overactive vagus nerve. That is more or less what my autonomic specialist thought was happening with me. Maybe some of us will have good results from this. I choose to be hopeful! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted June 9, 2022 Report Share Posted June 9, 2022 14 hours ago, Sushi said: Flecainide and Propofanone are both the same class of antiarrhythmics and have black box warnings (with reason: I just had complete heart block from Flecainide). Beta blockers do not have these warnings. Also, from the cardiac forums I follow, some find that Magnesium Taurate helps a lot with ectopics. Yeah, I do hesitate with the black box warnings. I take magnesium taurate as well as more taurine. I have tried glycinate and other chelates and salts. I don’t think magnesium helped me. I had a run of V-tach on my last monitor as well as increasing PVCs, bigeminy, etc. They weren’t even worried about that! Acebutolol did help with the PVCs, or at least the feeling. Quote Link to comment Share on other sites More sharing options...
Sushi Posted June 9, 2022 Report Share Posted June 9, 2022 6 hours ago, RecipeForDisaster said: had a run of V-tach on my last monitor as well as increasing PVCs, bigeminy, etc. They weren’t even worried about that! Acebutolol did help with the PVCs, or at least the feeling. Hmmm, are you happy with this EP? Seems like they should be concerned with anything that is causing a negative impact on your life. Finding a good EP can be hard. Quote Link to comment Share on other sites More sharing options...
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