GERD issues

Sorry this is so long, but I wanted to get everything out there.
At end of December after a heavy meal I woke to indigestion and stomach pain. Began as gnawing in lower stomach then upper and continued daily. Started 10 day course of Prilosec. Had similar issue a few months before and was prescribed Prilosec and it resolved. Prior to that, about 2 years before, I had ended up in ER because in addition to indigestion, I had pain in my upper chest and left arm. No cardiac issues; stress and GERD were diagnosed.
Early January I had a telephone visit with PCP. Some food triggers, worse on empty stomach and upon waking. Not always stomach pain; indigestion with spread to shoulder and arms. Sinus-like pressure in face. Mild cough with indigestion hours after eating. Occasional hot flashes/cold sweat and overall feeling unwell. No appetite. PCP prescribed continue Prilosec; second course if needed.
After 3 weeks, still no better, so saw another doctor in PCP office. He ordered blood work and prescribed sucralfate. At the same time, I was trying to get an appointment with a doctor in the digestive health area, but was told next appointment was 6 weeks out. Finally got a video appointment with a gastroenterologist. No interest in blood work; changed to liquid sucralfate and scheduled an endoscopy for 6 weeks later. Could not tolerate sucralfate so was switched to famotidine 40 mg. 2x day.
Blood work showed high Gamma GT and elevated CO2. Emailed PCP who said since liver enzymes looked good would not normally have checked gamma GT, but would order liver ultrasound if I wanted. I have had liver enzymes show as elevated in past blood work on and off over many years. Liver ultrasound once, but nothing showed as abnormal.
Endoscopy showed small ridge at end of esophagus appeared mildly thickened, so ordered fluoroscopy esophagram. Biopsies of tissues were normal. Esophagram results were normal.
I can go for a month or two with no symptoms, but when they start they continue for many weeks. I have been on famotidine continually since mid-February. I consulted a nutritionist to get some ideas on how to change my eating habits. I wondered if the fatigue was due to lack of protein, etc. One thing she suggested is DGL before each meal and that seems to help with stomach pain.

What bothers me are the symptoms that I don’t see as being typical GERD symptoms:
indigestion pain spreading into shoulders and arms; sinus-like pressure in face and foggy brain; fatigue; hot flashes with quick wave of anxiety; feeling like I need to concentrate to breath, but having no trouble taking a deep breath or exercising; bouts of severe constipation. I have Hashimoto’s thyroiditis, but it is controlled. My latest routine blood work came back fine, including test for Celiac markers. So frustrating that I keep being told my blood work is good — but I’m not feeling “good”. Just don’t know what to do next.

Hello to all with stomach issues. In early 2019 I started having night time issues with my stomach. Early in the morning, 1-3 am I would awaken to pressure in my upper stomach. If I elevated in bed, the symptom would go away. The condition worsened and I consulted doctors and had test of Enteroscopy and Bravo tests. All was good, except scope showed Hiatal Hernia and Bravo showed slight Acid Reflux. Conditon got a little worse so I got a Laparosscope "Wrap" done on my stomach in August 2019. After months of liquid and soft food diets the condition starting getting worse and remains worse now. Bravo tests, and another entroscopy show no acid reflux and no problem in the Esophagus. I has NO problems during the day, only at night when lying down, with elevated bed. Problem still occurs about 10 hours after dinner while sleeping. Pressure starts in the upper stomach, with nausea. Sitting up generally makes it subside, but about once a week it gets bad and effects me the next day for about 5 hours. I have tried PPI medications, and every kind of caulk liquid I could find. Nothing solves this problem. One doc said it could be trapped gas due to the tight "wrap" that was done. Anti gas pills help a little but none alleviate the problem.
Any help would be appreciated.

I have acid reflux for about 8 years, which has been mostly under control with Nexium 20mg/day. But, after carrying very heavy boxes about 6 months ago I had a flareup and since then the reflux is not under control, and includes waking every few hours at night with reflux feelings, which is generally sensed as a burning sensation in my mouth. Increasing Nexium to twice a day didn't seem to help, (I take Tums or Gaviscon for symptoms and haven't had coffee in years).
Had an endoscopy which showed only that I "may have a hiatal hernia" (although I thought he'd see a large one and an open LES). But - after the endoscopy I felt better. But the doctor said the procedure only diagnoses and does not cure and didn't believe me.
I went down to again taking 20 mg Nexium once a day. 24hr Ph test showed only 5 acid/partially acid incidents (done on a day I felt reasonable) and showed I don't have non-acid reflux.
Meanwhile, a few weeks later I again feel constant symptoms, such that all day and night I feel a burning tongue. (two weeks ago I had a large calcium pill which caused me heartburn and I wonder if might have contributed to the flareup recurrence)
Any suggestions as to how to get the GERD back under control as it was before the flareups?

Hello @t98

As one who also suffers from GERD, I certainly understand your discomfort and your need to get some relief. Your symptoms seem to be quite difficult, especially the burning sensation in your mouth.

As you have had this problem for a while, I suppose you are following the recommended GERD eating plan and have your weight under good control as both diet and weight can make GERD symptoms worse. Here is a link from Mayo Clinic's website about GERD and management of symptoms, https://www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940. I also found an article on Mayo's website about medications that can aggravate GERD symptoms. Here is the link to that article, https://www.mayoclinic.org/diseases-conditions/gerd/expert-answers/heartburn-gerd/faq-20058535. I would encourage you to take a look at the list of meds and see if one might be the culprit in aggravating the symptoms.

Have you considered getting a second opinion from another GI specialist? It is always your right to get a second opinion, especially if your current doctor does not seem able to offer you any other strategies for dealing with this problem.

Are there any times during the day (or night) when the symptoms seem worse?

Thank you for your suggestions. I do have experience and watch what I eat (and I'm thin). I also track what affects me but I am frustrated now because I can't seem to find what is causing these symptoms. Symptoms are worse if I eat more at once, and if later at night, but this only happens about once a week and usually I stop eating about 3 hours before sleeping so it doesn't explain my symptoms the rest of the week.

@t98
I do hope that you find an answer. Have you considered a second opinion?

Yes, I have an appointment lined up.

What are your symptoms ?
What is helpful?

I have heartburn, but mostly hard time swallowing . My throat burns.
I have tried PP1 don’t like their side effects or their long time serious problems.
Tried raising the head of the bed. Tried eating lighter. Tried nothing to eat before bedtime .
They put me on H2 blocker but eeems to be getting worse.
Thank you for any help