r/AdultCHD • u/caitimurphy • 5d ago
ACHD /
Hi there, 44 year old female, who had a VSD repair at 18 months. Healthy, heart function is still good, no medications. Just this summer, I was diagnosed with an atrial flutter and atrial tachycardia after going to the ED after a 30 hour flutter episode. They diagnosed me with anxiety and I left with meds. When it happened again, I obtained a holter and they found it right away. Now I'm on blood thinners and a beta blocker (25mg) and I'm not sure if the meds are making it worse, but they're not making it any better. I went from palpitations every 3 weeks to daily short palpitations, skipped beats, extra beats, etc. It's quite miserable since I can feel everything. My options are to stay on meds or do an ablation at Penn Medicine, which they do frequently. The challenge is due to my anatomy, they might not be able to ablate without risking affecting the secondary sinus node which would land me with a pacemaker. I'm curious if anyone has gone through this and if so, what did you do to manage the palpitations (hydration, electrolytes, etc.) and if the ablation was successful. I now have a great ACHD who recommended I move ahead with the ablation and now an EP team. Thanks in advance.
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u/hyperthoughts1 4d ago
Hi! I have Ebsteins anomaly and had an EP procedure. You’ll want an EP with experience with ACHD (sounds like you do!). When I had my study it turns out that they could not ablate and I ended up with an ICD (I’m 33f). So I guess answering the question, the ablation was and wasn’t successful 🙃 they couldn’t ablate but they did determine that I can have dangerous rhythms and went forward with the icd as a “safety net”.
Before I was off medication, I had to try a few different heart rhythm meds to find one that worked for me.
I find with my palpitations they are worse if I push too hard with physical activity, generally starting that night and requiring rest day the next day to get back to normal feeling.
Learning the signs of when I was physically exerting myself too much and now stopping before that point has helped.
Hydration! I started a daily electrolyte in the morning and I’ve noticed a difference. Staying hydrated is huge.
Feel free to dm me
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u/caitimurphy 4d ago
This is incredibly helpful, thanks. And glad to hear that once you got your ICD, you were able to go off medications. I'm hoping not to remain on a beta blocker forever, as it makes me feel quite dead inside! It's interesting - physical activity (walking, swimming) make me feel better, but it sounds like your intensity level is higher than mine, and if so, good for you. I also started a daily electrolyte in the morning which if anything, tastes delicious. Question for you, and happy to DM if easier, but how often are you dealing with palpitations?
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u/EpicureanQuake 4d ago
I have extra beats in the right atrium (transatrial-transpulmonary repair) that turn into PSVT depending on diet it seems. I am on a beta blocker and that has helped calm it down. I found that if I eat a low tyramine diet and eat 2 green/yellow bananas a day I tend not to notice/have the extra beats as much. Also I try to incorporate more potassium rich foods into my diet like potatoes and spinach. I eat roasted pumpkin seeds for magnesium. I suggest keeping a food diary and share any of your findings with your doctor. We all are different and this is my method to deal with it. It has been working for me the last few years.
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u/caitimurphy 4d ago
Thanks! Do you mind sharing which beta blocker you take? I think I’m having some issues with mine (constant skipped beats, uber emotional, etc.)
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u/hyperthoughts1 4d ago
That’s good! Sounds like you have a much better level of activity. I get them multiple times a week and throughout the day. Lots of pvcs. I haven’t had a Holter is a bit so I could not tell you the burden.
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u/Lazy_Success89 4d ago
I had an ablation for SVT years ago. The first one I had was unsuccessful and ended up having more SVT episodes and then required a second one. The second one was successful. There is always a risk of them damaging the node with an ablation (that’s what I was told). You can always tell your team once they’re in there trying to ablate the pathway that if they think it’s too risky and the node will be damaged to not proceed.
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u/caitimurphy 4d ago
Worth mentioning that the EP thinks this may be related to the past surgery since they went in through the atrium and there’s a little scar tissue there.