uncontrolled GERD with burning sensation on tongue/mouth

Posted by t98 @t98, May 16, 2022

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?

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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?

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@hopeful33250

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?

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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.

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@t98

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.

Jump to this post

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

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@hopeful33250

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

Jump to this post

Yes, I have an appointment lined up.

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@t98

Yes, I have an appointment lined up.

Jump to this post

I'm glad to hear that, @t98. Will you post again and let me know if you have found some answers?

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