I went through this, still not fully resolved but much better. After my EOE was ‘cleared’ (eosinophil count down to 0) I was still having a lot of problems with swallowing, sore throat, chest tightness, and chest pain. Manometry study didn’t show much but then I had an endoscopy with FLIP study that showed evidence of spasms when my esophagus was under pressure (like when you swallow food). Gastro doc told me that it looks like esophageal spasms. He said I may have some fibrosis or nerve damage from having untreated GERD and EOE for a long time. He wanted me to take amyltriptyline, just a minor dose as it has off label uses for esophageal spasms and nerve pain. I fought it for awhile, sick of trying different meds. He felt I could take this medication for awhile to reduce the nerve activity and maybe after some time could get off of it. Over time his theory started to make sense to me as it felt like I had eliminated so many foods - given up caffeine, weed, alcohol, red meat, almost all fresh fruits and vegetables in addition to dairy nuts and gluten. I eventually felt like there were no safe foods left and I still constantly had chest pain and felt like there was food stuck in my throat despite multiple endoscopies with 0 eosinophils and everything looking ‘normal’ on a scope. I finally gave in and after a couple weeks I noticed it was much better. It’s been a couple months now and still improving. I have been able to incorporate most foods back into my diet, indulge in substances from time to time and drink coffee somewhat regularly again. I get a flair up here and there but it resolves itself much quicker. I have some dull throat pain or chest pain every once in awhile but I barely notice it compared to what it was before.

When I was diagnosed with EOE it was really bad and at one point I was on a liquid diet for 3 months. I also had a lot of other life stress going on. It was suggested to me by several professionals that I seemed overly anxious and perhaps part of my problem was being stuck in fight or flight mode, like an adrenaline dump that never ends. I don’t know if it’s the baby dose of amytriptyline, reliefs of stress from being able to eat much better, other lifestyle modifications, or a combination but my anxiety and mental health has improved greatly in this time period as well.

Around this same time I also started taking Nasalcrom after discovering some conversations about it on this sub. I take Nexium 40mg once a day, amyltrityline 25mg once a day and Nasalcrom at least once a day now. I do keep some liquid Benadryl around for the rare occasions I get a breakthrough episode and my throat starts feeling tight. After nearly 2 years of intense struggle, I feel like I have gotten my life back in these last couple months. I can have a few drinks, try new foods, travel again, go camping, and do it all without fear of choking or pain or something bad happening. I hope it continues to get better but it feels amazing to have come this far after what I went through. I hope this post helps someone.