Burning mouth syndrome – anyone else have this?

Posted by londonex @londonex, Jan 1 8:39pm

I was diagnosed with burning mouth syndrome (BMS) in 2019 after going to my GP and gastroenterologist with complaints of heartburn and throat soreness. An endoscopy proved no GERD issues and an oral pathologist ended up diagnosing me with BMS. It has been described to me as a neuropathy of the fifth cranial nerve, and the second cranial nerve which, in my case, affects the back of my throat, top of my mouth and occasionally up through my sinuses to cause a raging headache. It comes on with high stress and anxiety, sometimes with hot or cold or spicy foods, and lasts anywhere from one hour to one week.
Really doesn’t respond to any medication. Stress reduction and yoga do help a bit (placebo?) when I put my mind to it but for the most part, BMS is a bothersome undercurrent in my daily life. Just wondering if others are suffering with this as well.
Thank you!

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@diannesmcneill

I really had no idea I was experiencing reflux. Years ago I did have reflux and since then I always slept with my upper body and head elevated and never had any symptoms of reflux. I did not realize there is a silent reflux. My recent test showed gastritis with hyperplasia which is pre-cancer and then the Barrett’s esophagus. Yes I understand Barrett’s can become cancer. Testing did not reveal Barrett’s currently having metaplasia ( precancer). I know I need follow-up with the Barrett’s.

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No I did not have dark stools or volmiting. I just had burning mouth, tongue, and tooth never realizing the inflammation of the Barrett’s on the esophagus was causing the burning. I was totally surprised. I have been sleeping in recliner. The morning after my scope I slept in my recliner and I woke up with bad reflux feeling the crawl up my throat. I acknowledged that was reflux. Can’t really believe how much better I am. When I do get a little burning in my mouth like this morning I chewed a pepsid complete and within minutes the burning was gone.

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@londonex

Thanks so much for sharing your information. Curiosity question – has there been any discussion about Barrett being a precursor for cancer? Is this a major concern on the part of your gastroenterologist? Did you have any clue at all that you were experiencing reflux… Dark stools, Vomiting, etc.? Thanks again.

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I will have to follow up on Barrett’s. My specialist retired and I am hoping to stay on top of the Barrett’s. The new stuff they are doing for Barrett’s May be something I look into. Thankful right now not to have a burning mouth, and tongue most all the time unless a pain pill had stopped the burning for awhile.

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@londonex

Thanks so much for sharing your information. Curiosity question – has there been any discussion about Barrett being a precursor for cancer? Is this a major concern on the part of your gastroenterologist? Did you have any clue at all that you were experiencing reflux… Dark stools, Vomiting, etc.? Thanks again.

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My specialist told me my Barrett’s was serious because it’s precancer. Pre-cancer is serious.

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In reply to @californiazebra "I drink arrowhead" + (show)
@californiazebra

I drink arrowhead

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Dasani bottled water. Our city water is not that great. I pour my water in cup and heat water up in microwave. I am 5’2” and weight 110 lbs. I don’t drink and I don’t smoke. All the above are in my favor.

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Dasani and Aquafina are low pH and make my mouth burn.

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@californiazebra

Dasani and Aquafina are low pH and make my mouth burn.

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I will have to check what bottled water in my location that is not low PH

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I was diagnosed with burning mouth. At first it was suspected to be a facial nerve issue. Took more than 4 years of suffering and treating before am emergency room Doctor suspected reflux although I denied reflux. Testing showed the reflux and Barrett’s. I am taking Prilosec. It’s amazing to me now when my mouth is burning a little how chewing a pepsid complete dissolvable tablet eliminates the mouth burning pretty quickly. I am getting ready to get some Tums to test. Sucralfate liquid taking 4 times a day helped the burning mouth also after about 30 days and nights of taking it.

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@diannesmcneill

I was diagnosed with burning mouth. At first it was suspected to be a facial nerve issue. Took more than 4 years of suffering and treating before am emergency room Doctor suspected reflux although I denied reflux. Testing showed the reflux and Barrett’s. I am taking Prilosec. It’s amazing to me now when my mouth is burning a little how chewing a pepsid complete dissolvable tablet eliminates the mouth burning pretty quickly. I am getting ready to get some Tums to test. Sucralfate liquid taking 4 times a day helped the burning mouth also after about 30 days and nights of taking it.

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I take protonix (PPI) so I'm not sure if I can take pepsid or other meds like that as well. Haven't tried it. I did used to try tums before protonix and it did nothing for my burning. I mostly avoid meds due to side effects and would love to get off protonix as there are a lot of mixed reviews about PPIs. It's healing and has made my red esophagus pink again. I'll ask after my next scope. My brother died at 59 from esophageal cancer (had silent reflux so no symptoms) so I try to be cautious.

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@californiazebra

I take protonix (PPI) so I'm not sure if I can take pepsid or other meds like that as well. Haven't tried it. I did used to try tums before protonix and it did nothing for my burning. I mostly avoid meds due to side effects and would love to get off protonix as there are a lot of mixed reviews about PPIs. It's healing and has made my red esophagus pink again. I'll ask after my next scope. My brother died at 59 from esophageal cancer (had silent reflux so no symptoms) so I try to be cautious.

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How often do you have scopes done? That’s good news if your esophagus is pink again.

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@diannesmcneill

How often do you have scopes done? That’s good news if your esophagus is pink again.

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Protonix is suppose to be the safest PPI. Do you see a specialist?

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