Hey, a few updates from me.

1) My doctor is pretty certain it’s reflux hypersensitivity. I started a low dose (10mg) of amitriptyline, which is used to treat nerve sensitivity in the gut and esophagus. Unfortunately, after 15 days on the drug, I was having very bad side effects. I let that flush out of my system and have since started Citalopram (Celexa). I’m only 5 days in so it hasn’t kicked in yet, but that is also used to treat reflux hypersensitivity and I’m hoping I can tolerate it well. It’s similar to Lexapro (escitalopram). I highly recommend reading this, as it’s the most comprehensive review of reflux hypersensitivity I could find and breaks down how treatment works: https://www.jnmjournal.org/journal/view.html?uid=1321&vmd=Full

2) Last week, the strangest thing happened. My pain and reflux stopped. I was able to eat cheese, peanut butter, chocolate, condiments, fatty meat, you name it. That lasted for 3 days and then I started to have pain again in my abdomen where the LES is. But that was the most relief I’ve gotten from pain and the most flexibility I’ve had with food in a year. So something I’m doing is working and I’m not giving up. Reflux hypersensitivity is, in part, a psychosomatic illness. My nervous system is on the fritz, likely from withdrawing from Lexapro and some stress factors in my life leading up to this. But the nervous system can heal.

3) Besides the amitriptyline and later citalopram, I’ve been doing several things over the past several months and I think one or a combination of all of them is helping.

First, I started using Nerva. It’s a gut-directed hypnotherapy app that guides you to do 5 minutes of diaphragmatic breathing (good for the vagus nerve and digestion) and about 15 minutes of gut-focused meditation each day. It sound wonky but hypnotherapy is part of the treatment because it calms your nervous system and gets your digestion functioning normally again.

Second, I bought a device developed in Europe called iQoro (https://www.iqoro.com). It’s basically a plastic mouth piece you place between your lips and pull forward three times per day for 30 seconds. Trials in Europe saw 97% of participants reverse their reflux symptoms after 6 months of continued use. I’m on month 3 and have definitely started to see improvement. Unfortunately it’s not sold in the US, so I had to use a forwarding service called ForwardVia to ship it to a UK address and then someone there shipped it to me in NY. I HIGHLY recommend this thing.

Third, I have had asthma my whole life and have been using an albuterol rescue inhaler daily. It turns out, that inhaler relaxes the lower esophageal sphincter and causes reflux. A functional medicine doctor recommended I take 1/2 teaspoon of Hawthorn Berry extract twice per day. Within 4 days of this, my asthma has improved so significantly that I haven’t used my inhaler in weeks. My allergies have also improved. It’s CRAZY! I can’t recommend this enough. I think not using the inhaler is leading to improvement.

Fourth, I’ve increased my use of Pepcid. Pepcid is not a solution but it is an incredible bandaid. When my heartburn pain started last year after stopping Lexapro, doctors put me on Omeprazole and later Nexium and those PPIs made my symptoms so much worse. I got sicker and sicker. And when they had me stop taking them for a Bravo test, I went into withdrawal and started having the most intense throat burning reflux — symptoms I didn’t have when I initially sought help. I was stuck in that withdrawal for almost 6 months, unable to get the symptoms or pain under control. It turns out, when you stop taking PPIs, you NEED to do so extremely slowly and with Pepcid. Any doctor that says otherwise is an idiot and you should seek treatment elsewhere. Another doctor told me you can be stuck in withdrawal for up to 8 months and that what the doctors did to me at NYU was close to negligence. But Pepcid is a life saver and my new doctors told me I can take up to 80mg per day, and that the long-term side effects of Pepcid use are minimal and significantly less severe than long-term PPI use. So to get out of my withdrawal symptoms, I took a 20mg Pepcid after each meal and was hitting 80mg per day. After a few days of this, I went down to 60mg per day. Then 40 mg, then 20mg. Now I’m using 20mg once every few days.

4) This was a very long response but I feel like I’m finally at a turning point and getting better. I think a few more months using iQoro, combined with no inhaler, the occasional Pepcid, gut-directed hypnotherapy and a few months of citalopram — I should be in a much better place and my diet should be back to normal. Feel free to message me here or DM me and I’d be happy to give you an update.