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blue_dragon | 2 years ago
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.
jkhn|2 years ago
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.
blue_dragon|2 years ago
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.
cachecrab|2 years ago
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!