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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Profile picture for scentsrnotfun @scentsrnotfun

Hello,
This burning mouth is a life changer and as everyone has said, no medical professionals I have seen, consider it a thing. At best, they shrug their shoulders and say talk to your dentist, check with ENT, etc. I also have multiple chemical and fragrance sensitivity which is also NOT a thing in the medical realm. I get the taste of chemical or fragrance in my mouth PLUS the burning mouth! I try to remember things could be worse and I thank God for things that I DON'T have but venting with others is a support. I am open to a y ideas.

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@scentsrnotfun That's why I am sooo over going back to the doctor for it. The co pays and them looking at me dumb founded is more than I can take anymore. Every doctor/Dentist/ENT/ sends me to someone else and they all have a different opinion. Have you tried over the counter, Alpha Lipoid Acid??? I read they've done studies on people who have BMS and it seems to have worked with more than not. I'm two weeks into it now. Honestly, I am trying everything I can without going to the doctor anymore.

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Profile picture for linda1976 @linda1976

@scentsrnotfun That's why I am sooo over going back to the doctor for it. The co pays and them looking at me dumb founded is more than I can take anymore. Every doctor/Dentist/ENT/ sends me to someone else and they all have a different opinion. Have you tried over the counter, Alpha Lipoid Acid??? I read they've done studies on people who have BMS and it seems to have worked with more than not. I'm two weeks into it now. Honestly, I am trying everything I can without going to the doctor anymore.

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@linda1976
I also have BMS for about 2-3 years now. I take 200-400 mg of Gabapentin daily. Takes the edge off a bit. ENT was no help. I drink Diet Coke and cold tea all day to get some relief.

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Profile picture for linda1976 @linda1976

@dustycat52 Oh wow!!!! Do you have it every day?? I can't imagine having it the rest of my life. 🙁 That is so horrible. I've had it two years and am just about ready to go nuts.

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@linda1976 For the most part I’ve learned how to manage it but I can really go out to eat and feel relaxed afterwards because the food usually causes pain.

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