Hijacking your comment to share my story and ask for advice.
I have diagnosed EoE, I've had it for my whole life. I'm currently on 80mg omeprazole daily and an elimination diet. This helps a lot but is not a cure. I've also experienced benign heart palpitations for my whole life (confirmed by a cardiologist). For a long time, I've had a hunch that the two were connected.
On days when I have EoE flare-ups, I feel some pain and swelling in my esophagus, as though I have a bad chest cold. Food and liquids tend to linger in my esophagus for longer. Another unusual side effect is that, on days when my EoE flares up, I tend to experience frequent heart palpitations, most commonly right after consuming food or water.
Since the vagus nerve travels through the chest, adjacent to both the heart and the esophagus, I think the mechanism of action is this: the inflammation in my esophagus stimulates the vagus nerve, making a palpitation more likely. This inflammation also causes food and liquid to travel through the esophagus more slowly, which stimulates the vagus nerve further. The combined stimulus from inflammation and food or liquid can irritate the vagus nerve enough to cause heart palpitations.
Obviously I would like to cure both my EoE and palpitations, as they're currently the two biggest detriments to my quality of life. And inflammation due to an overactive immune system is the cause of EoE. So the possibility of reducing immune system inflammation just by stimulating the vagus nerve is very appealing to me.
If anyone reading this has an experience, opinion, research, suggestion, or anything they'd like to share, I'd love to hear it. I'm going to experiment with baking soda and famotidine to reduce inflammation, since I read in the above threads that either of those could work. But if there's some simple hack I can employ to reduce my symptoms (meditation/breathing technique, physical exercise, a stimulation device I can buy, some additional OTC medication I can take, etc), I love to hear it.
You may want to look into dupixent or mometasone for elimination of your EoE symptoms.
My daughter was diagnosed around 2 years old and has been seeing a doctor at Boston Children’s hospital who is involved in EoE research. For a few years now she has been taking a compounded mometasone slurry daily which has kept all her symptoms at bay.
Now that she is 12 she is eligible for dupixent which the doctor has said she has hundreds of patients on who are in total remission.
Thanks for the suggestion. I have an appointment with my GI coming up soon and I'll definitely ask her about those. Dupixent in particular looks very promising!
I'm glad you got your daughter into treatment early. I'm ~30 years old and research and treatments for EoE weren't nearly as good when I was her age, so I wasn't properly diagnosed until my 20s. By that point, just eating normal meals was a struggle and I had to have an esophageal dilation before I finally got onto my current treatment plan. I hope she never has to experience that, it sucks.
Omeprazole and elimination diet work ok for me, but it's not anything close to remission. I can finally eat normally again, but I don't have a comprehensive list of my trigger foods, and I get painful flare-ups if I accidentally eat the wrong thing. I'll gladly give myself injections once per week for the rest of my life if it means no more intermittent chest pain and it lets me eat a normal cake on my birthday again.
I can empathize with how difficult it must have been to get a diagnosis and treatment plan. In my daughters case her symptoms were coughing while eating and vomiting. Most of the doctors we saw at first suggested it was acid reflux and she should be on prilosec, but she continued to get sicker and sicker and we really had no idea what to feed her.
It turns out she is allergic to corn which is unfortunately in almost every manufactured food. We had to do a deep dive into corn and it's derivatives in order to avoid foods that would trigger her. Even things like citric acid can be triggers because of the way it is produced.
She's been doing great for a number of years on the mometasone and we are excited to start dupixent now that she is old enough.
I've been lurking HN for 14 years or so and never made an account but felt compelled after I read your comment because I know how tough EoE can be. Good luck with your treatment!
I haven’t been diagnosed with EoE (and don’t think I have it) but I do think there is a connection between heart palpitations and the digestive system. I have SIBO and will sometimes get them from the trapped gas.
Some would consider this as Roemheld syndrome, which isn’t an official diagnosis but I see it as more of an explanation that your digestive system can cause these symptoms, rather than there being a problem with your heart.
I don’t have any thing else to offer you as I’m not as familiar with EoE but you could look through the related subreddit to see if others have suggestions. Wishing you the best!
Diet mostly, I dropped most added sugars, wheat and drip coffee (french press and cold press are fine for some reason) along with broccoli (random, right?) and industrial breads (something in the rising agents ¯\_(ツ)_/¯ ) and I'm currently mostly fine.
Large amounts of red meat is bad, because it just doesn't digest properly, I might burp in the evening and still taste my lunch sausage...
Metamizole is the only one that helps in the extreme cases (panic attacks), but luckily I don't get those anymore. I think I've had to take a single pill twice in the last 5 years. It's pretty much exactly 15 minutes from swallowing the pill and then all symptoms go away because it forces my diaphragm to relax and thus drop pressure to the vagus nerve.
> drip coffee (french press and cold press are fine for some reason)
That's so wild. If anything, you'd expect it to be the other way around, since French or cold press methods have the bean/grounds touch the water directly and therefore leave more oils in the final product, vs. drip coffee where it goes through a filter.
Have you found any additional solutions, past the standard PPI and diet for acid reflux?
Thanks!