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@loribmt

Oh my gosh, @tinatoren, your symptoms sound awful! I just have to ask, did you quit the Prilosec and Pepcid cold turkey? If you’ve been on those for years and just stop there is such a thing as a rebound effect. I took protonix for several years during chemo and had to slowly taper so that I didn’t have acid rebound. I still did have some issues, but it was mitigated with taking OCT antacids to compensate.

My husband also had reservations about using oil of peppermint and the recommendation of FD Gard from his gastroenterologist. But both worked quite well in easing the ‘cramping’ from his Functional Dyspepsia.
https://www.healthline.com/health/benefits-of-peppermint-oil#uses
What did help the most was in the link I posted before. He tried a tricyclic med first but that didn’t have the desired results, so his doctor switched to another anti-anxiety med. He was suspicious too because he felt if that the sphincter was relaxed it would allow more acid to reflux. But that wasn’t the case and it greatly improved his condition. His ulcer healed completely.
Your situation sounds pretty dire. Have you had a recent endoscope to rule out an ulcer?

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Replies to "Oh my gosh, @tinatoren, your symptoms sound awful! I just have to ask, did you quit..."

Yes. I had an endoscopy in January and they couldn't see anything visually wrong. I'm still waiting for biopsy results. I've had 9 endoscopies over some years and only one showed esophagitis grade 1 despite unbelievable pains. I would have cough, reflux, wheezing and burning pain and hunger during the night. I recently came across an article by a doctor called Dr Jamie Koufman that actually talks about that type of reflux. I also found articles on pretty severe irritation of the vagus nerve even from non erosive esophagitis. The theory is that the acid penetrates the mucosa layers all the way to the nerve even though you can't see it. I used to always get better with Prilosec but it took a long time. This december however I had eaten 40mg of Nexium and not gotten better plus I developed the nerve and brain issues. At first I thought it might be the vagus nerve but then I read that my facial tingling must come from brain because the facial nerves are in the skull. At the same time some reflux people swear the have tingling lips?
It's all so strange. Hovever I also feel dizzy and have myoclonus jerks of head when I use my shoulders etc so something is going on in my brain too.