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Ebsteins Anomaly and WPW
Hello…I am 52 and I was diagnosed with Ebsteins Anomaly at age 9 and was not told I also had Wolff Parkinson White syndrome until about 15 years ago. I did not have any real problems with my heart until 2019-2020. I started to have SVTs and was first put on Metaprolol. Then a few months later, I had my first ablation in 2021. That did not take. I was having some major issues with SVTs, to where I was blacking out. I came home from a camping trip and could not get my heart rate down. They thought I was having a heart attack! I didn’t but I ended up having another ablation. I was put on Metaprolol and Propafenone. I have been on this regiment for a few years now. Every once in a while, I do get a blip on my Apple Watch that my heart rate goes up, but I don’t feel it. My anxiety goes up when I see that because I worry about the extra pathways coming back. I was told to wean off of Propafenone from my cardiologist but I am scared. I have been doing fine with these meds and I don’t want to change anything. Has anyone else weaned off of Propafenone? What were some of your side effects, if any? Thank you!
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Why have you kept taking metoprolol and propafenone when you (apparently?) had a second successful ablation? It is usually the case that, about two to four week prior to the Holter monitor assessment, which usually takes place near the 10 week mark after an ablation, you are asked to stop taking any medication for your heart rhythm and speed, although you might need to keep taking a DOAC like apixaban or rivaroxaban to minimize stroke risk.
As for tapering off of, and then stopping any drug, it should only be done in consultation with the person who issued the prescription, and if a protocol is called for, and you follow it, you should be able to stop it...assuming you have no underlying arrhythmia.
As for the odd little 'blip', everyone has those. Everyone. I had a quintuplet run of quick heartbeats just yesterday while at my computer, felt it, it stopped on its own, and that's all there is to it. The previous one was maybe 8 weeks ago or more. Everyone gets PACs, a few each day. Premature atrial contractions.
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3 ReactionsThank you so much for the reassurance. Before I had the second ablation, the SVTs were so bad. I spoke with the cardio and he didn’t seemed too concerned but when I had that camping trip over Memorial Day 2021, that is when all heck broke loose. I do not want to feel like that again! I believe the doc kept me on the meds due to the Ebsteins anomaly. The cardio that was my doc for 15 years retired and I have a new doc now. I am not feeling super confident about him. My other doc was caring and listened to me. With this one, I feel like I am on a conveyor belt. I will find out at my next appt why I am on the meds. I didn’t question it because of the PTSD that happened before.
Thanks for that. PTSD means an underlying anxiety which, all by itself, can set your heart off if your particular arrhythmia is most sensitive in the adrenergic receptors (and that is what a beta blocker like metoprolol is for...as opposed to the calcium channel blockers https://pubmed.ncbi.nlm.nih.gov/19960186/ . When you get tiny or micro-cues about the incident(s) that cause your mind to blip, your heart will soon follow because in seconds it gets a shot of adrenaline, which of course is a muscle stimulant...muscle being what the myocardium is all about!
What I do is to start to google, maybe with a syntax like 'Ebstein's anomaly and treatments' and I'll spend the next day reading PubMed, NIH, Boston Medical Journal...anything google brings up, including on subsequent pages...I NEVER read just what the first page offerings show. There's more even on the third and fourth pages. As I read, I make up a list of 'So what does this mean for me?' questions, or questions I need to pose to the specialist next time I see them. Or, I google that question and see what pops up.
What I'm suggesting, in my often longwinded way, is that self-education often allows us to be more calm when we understand more, and maybe can be a bit more optimistic...or even more involved in what comes next for suggested treatments.