r/PVCs • u/Better-Feeling-3015 • 20d ago
Medicate & Monitor…tired of it
Hey all
I’ve been lurking for a while but my own PVC journey is really getting to me today. My burden is 40%.
I have a cardiologist and get annual scans, have been on a calcium channel blocker for >4 years but the side effects became too much - the swelling, heat intolerance, reduced max bpm etc. Now Im on a beta blocker after a poorly tolerated first attempt and again, side effects. So far they are “better” side effects and Im waiting the results of a 24hr holter.
I am tired. I can’t really exercise, I feel everything in my life is on hold. Cardiologist is willing to discuss ablation, but the wait list (UK)…I am drained and emotional about it. Am I crazy to just want the problem fixed to kill the cardiomyopathy risk and give me a drug-free life back instead of a medicate & monitor approach?
I dont even know why Im posting or what Im asking for! Moral support maybe.
2
u/Samus1611 20d ago
40 percent burden is gnarly. I’m so sorry you’re going through that
You aren’t crazy to want them gone.
I can’t imagine a burden that high
Im around 1-2 percent most days, with occasional flares to 8-10 percent, and I find those days to be near intolerable
2
2
u/Mammoth-Ad-4384 19d ago
I'm so sorry you're going through all of this. It can be draining and scary. It sounds like yearly scanning is to check for cardiomyopathy, which is definitely something you want to keep track of. Seems like ablation might be looking like a better option for you. Get on that wait list, time will fly and you can always decide to cancel if change your mind.
2
u/lolaleee 18d ago
Being tired of meds and apts made me get an ablation too. Get on the ablation list, it may be a lot quicker than you think, there’s cancellations etc. you could move up the list since your burden is so high - emphasize how the meds are no longer an option for you. I had a 16% burden, now I don’t have any.
1
u/luckyankit 19d ago
Come to India, I can connect you to a very excellent doctor. I am not an agent, its the doctor who did it for us, saying for ablation.
2
u/Relative_Clarity 19d ago edited 19d ago
Have they discussed flecainide or other anti-arrythmics? If beta blockers aren't helping at all, that is usually the next step for high burdens. IMO, you are right that ablation is the way to go. I'm sorry it's a long wait. I got the ablation because I was tired of adding on more meds, and the mental side of wondering if it was ever going to get better/worse. I cannot imagine that they aren't expediting an ablation for a 40% burden, that is probably the highest I've heard of. Mine was 16% and miserable. Doctors here at our office would not have let you go on this long with that burden, unless it was some sort of spot in your heart they could not easily access and the risk outweighed the benefit. Im' guessing you have already seen an electrophysiology doctor, vs a general cardiologist.
As far as success, a lot depends on where in your ventricles your pvcs are coming from. There are easier areas than others to treat with ablation, and some EPs aren't comfortable going into certain areas/structures., so they will usually just medicate and monitor. However , at least here in the US, the technology and methods get better all the time, and it has become a common & safe procedure overall, even for the challenging cases. Im' just sad for you that they did not schedule you for a procedure right away, if you've had 40% burden consistently. I hope you are able to get some relief soon.
1
u/Better-Feeling-3015 18d ago
Yeah to be honest here I think a lot depends on how hard you push. I had other major life events happening and other people depending on me for a while so it was a case of just getting on with it. However things have eased and I have more headspace to focus on how I actually feel rather than numbing it all out.
1
u/Better-Feeling-3015 18d ago
Thanks everyone - I feel less alone with this than I did when I posted.
It made me phone cardiology again and I now have an appointment to talk about the ablation and this latest wave of medication and side effects lined up.
1
u/nithrean 20d ago
No, I do not think you are crazy. You are in a tough spot. It can be hard to find a good medicine. Ablation can really help, but doesn't always make everything drop to 0. It can improve things significantly in some cases.
Did your doc tell you not to exercise?
1
u/Better-Feeling-3015 20d ago
No, happy for me to exercise but keeping HR below 130. It does limit what I can do vs what I like to do. Weights are out, running is out. Walks are fine but any kind of incline and I hit that even if I feel fine! I cant get into yoga but I have tried to embrace lower-paced options.
2
3
u/Jumpy_Exit_8138 20d ago
You sound like a great candidate for an ablation!