Words of Wisdom?

[KateyB81]

Hi! I'm 34yo and started getting PVCs after the birth of my first child (in 2009). My cardiac issues have gotten worse after each baby ( I have 3). I've had many bouts of SVT that usually stop quickly, but 4 times I have gone to the ER. I'm on 25mg of a beta blocker which helps with my PVCs a bit but doesn't eliminate them completely. I've also still had STV runs while on this med. My cardiologist is now recommending an ablation which terrifies me- but I am so tired of living in fear about my heart. Any words of wisdom? I'm so grateful to have found this community. Thank you!

[Rachel191272]

Fear of the uncertainty and fear of the way svt and pvc's make you feel is the biggest problem, I absolutely agree. Unless you have experienced it you can't fully understand how disabling it is. I totally get it. I am 43, have svt and have had two ablations. The last ablation led to me needing a permanent pacemaker insertion but unfortunately did not sort my svt. So I have had ongoing problems with svt for which i have had several trials of different meds for (now on dronedarone and bisoprolol) but I also get awful ectopics, pacing has been a huge problem and I've been back and forth 2-3xweek over the last 4 months and currently being paced all of the time despite reasonable underlying conduction and the AV delay has to be v short which brings further problems, but if I'm paced normally then I get fusion with my own conduction. I also have developed another arrhthmia that is utterly unpredictable, comes on at rest and causes me to feel faint. Anyway all of these different possible arrhythmias lead me to feel fear so much of the time that I've been pretty housebound. However, coming on here and reading the posts has shown me that whilst we all have our own stories we are not alone in our hearts leaping around doing odd things and somehow the knowledge that I'm not alone makes me feel a bit better.

In terms of an ablation, it doesn't sound like they've given you a decent trial of medication yet and personally I would always choose to try that first but others may feel that side effects of medication are intolerable and prefer the chance of being cured altogether (a very alluring thought!) . But I feel that it's still worth trying first and only then if you are still suffering to the extent it is affecting your quality of life that is when I would (and did -on both occasions) go for ablation. It may be that upping your beta blocker or adding in something like flecainide will reduce your symptoms significantly.

The other thing that everyone always says and I've always told myself during an episode is that whilst svt feels horrible, it isn't dangerous. I've had svt since I was 13 so I grew up thinking it was normal!! However ectopics and runs of junctional tachycardia or feeling like I have VT due to the pre-syncopal symptoms is what has changed for me and so try as I may I can't convince myself during an episode that I'm going to be ok and I guess this is probably how it feels for you developing svt later on in life. Sorry, rambling on but what I'm trying to say is that often feeling very symptomatic is awful but cardiologists are usually very calm about ectopics and svt because our BP is usually fine (have you checked yours) and because evidence suggests that no harm will usually come to us. Presumably you've tried the various vagal manoeuvres to stop the episodes happening when they come on?

Anyway I'm sure that you will receive plenty of other comments which will hopefully help you come to a decision together with your cardiologist.

Take care and sending my -partially patched up but not quite yet fixed- heart-felt wishes to you,

Rachel

[KateyB81 in reply to Rachel191272]

Thank you so much for your thoughtful response. I've developed severe anxiety and now have panic attacks when I go to the Dr. (I take 2 xanax before I go.) Before they put me on the beta blocker my BP was fine but on the higher end of normal 136/68. I'm not overweight and I'm as active as I can be- but the PVCs happen more when I exercise and that scares me. I want to be able to run again and travel without worrying about where the nearest hospital is and who will be able to help me if my SVT is triggered.

[svtsin30s]

Hi Katey!

I'm so sorry you are dealing with all of this. I know how frustrating and scary it feels. I'm 30, was dx with SVT when I was 22. I also get frequent PVCs. My husband and I want to start having a family, so I had my first ablation this past Feb. That one didn't totally correct my problem, so two weeks ago I had a second one (and the anxiety leading up to it was much worse than the actual procedure both times!). We're the procedures the most fun I've ever had? No. But I'm glad I did them, even if the first one was unsuccessful. Each time, I'm one step closer to being off meds and having a normal heart!

An ablation is not a decision to take lightly, but just remember that for your doctor, this procedure is SUPER routine. It's a very controlled procedure and environment. And both times, I went home the same day!

Whatever decision you make will be the right one for you. Sending healing, calm vibes your way!

[KateyB81 in reply to svtsin30s]

Thank you so much for your encouraging words! I hope this last ablation fixed your problem for good.

[Gill68]

Hi, it was encouraging to read your very honest thoughts and fears. I'm not sure exactly what type of arrhythmia I have but I do know it's down in the right ventricle. I've been on 3 or 4 different beta blockers which were pretty ineffective and about 4 years ago was put on 200mg flecainide acetate daily, which has massively improved my quality of life though I do still have small amounts of ectopics and odd 'runs' of arrhythmia which feels like the heart beat is a needle of a record stuck in a groove (showing my age) And while I'm grateful for the relative normality that provides I can still be thrown into a state of anxiety and monitoring if I get more arrhythmia than what is the new normal. So it never truly leaves you and I've started to wonder how it must feel to not be so acutely aware of your heart and life in fear of the arrhythmia escalating, all the while trying to be an adequately functioning person who works and has a family. Joining this blog has helped me realise I'm far from alone when for years I felt very much so.

[KateyB81 in reply to Gill68]

Thank you for your response! Yes! I am always preoccupied about my heart. My husband always tells me to stop worrying, but if seems like whenever I am actually able to forget about my arrhythmia for a second I get more weird beats and I start obsessing all over again.