Atypical GERD symptoms
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.
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Still feeling really “off”. I’ve decided to try weaning off of famotidine to see if that helps with hot flashes, anxiety, and fogginess. My stomach has been pretty good with DGL and a round of doxycycline (prescribed for tick bite!) Added a probiotic after antibiotics at suggestion of nutritionist. Anyone else had side effects from famotidine?
@baz10 I'm with you on that. .. this one I would not have figured out. No way I could remember how to spell it.. so might write it out once in the post and then abbreviate… or copy and paste. That I can do. 😁
Are you keeping a journal? A journal can help figure out what is going on.
Write down when your symptoms get worse… or better what happened?
Write down everything you ate. … When you ate and any reaction to the meal. Try eat 4-5 meals a day instead of 3 and see if that helps.
Write down your bathroom habits… how often and with bowels if constipation, diarrhea, how often.. urgency.
Record your medication… when you took it and how it made you feel. (It good to go over your medication list with a pharmacist.. they can tell you how far apart you should take medication… some medications need to be spaced apart. They know more about drugs than your doctor and can tell you how you can take them to work best. Include a list of over the counter medications such as supplements.)
Record your blood pressure and weight. Blood pressure is not hard to take at home and the machines do not cost a lot.. I'm sure more than last year though.
Record your sleeping habits.
Record your activity.
Record your pains.
Record how you feel mentally. Are you stressed? Feeling overwhelmed? Sad? Depressed? Happy? Moody? Irritable?
Before talking with your doctor next time…
Write a summary of your journal.
Write down questions to ask… leave space between questions on the paper to write the doctor's answers.
Have a person with you if possible… one that listens well. Have them take the notes of the visit.
I hope you start feeling better soon.
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Thank you! This is really helpful and encouraging. I’ve been keeping a diary but not this detailed. I also have notes everywhere. I need to get everything together before seeing the next doctor
You posted in August about GERD symptoms and I was just wondering how you are doing now. Have you had any relief?
Thanks for asking. Lots of tests which rule things out but don’t give me answers! I’m feeling better tho. I’ve been taking FDGard at my doctors recommendation, along with famotidine. I’ve been here before though and then something sets me off and it’s weeks until I’m feeling ok again. Need to get to the bottom of what sets it off.
I appreciate your update. I'm glad that you are feeling better for the time being. Some relief from those symptoms is a good thing. As I recall, you were thinking of keeping a food/activity journal. If you continue with that, and if you do have another setback you may be able to tell if it is related to a particular food, activity, or some type of stress.
I hope you post an update again. I would appreciate knowing if you find any cause for these symptoms.
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.
Did you have pressure in your upper stomach due to acid reflux and/or heartburn? If it was just pressure, why did they do the wrap or what's called a Nissen Funduplication on you? I have a Nissen Funduplication with a 360 wrap and the wrap has caused so many more complications than I ever had before. It is just out right the worst decision that I have ever made in my life. This sounds like a slipped or failed Nissen, from all of the personal stories that I have read on a Facebook page called Nissen Funduplication Takedown. You would probably get some great answers to your question there, with very similar stories to yours. I had my NF 360 wrap, 5 years ago and I'm finally flying to GA to have it taken down. I have wasted 5 years of my life to this wrap and I finally had enough. Good luck to you!