Burning Mouth Syndrome. I have it very severe.

I’ve had BMS for over 17 years. Over time it has lessened because I’ve learned to deal with it. But there are days when it’s so bad that I feel like hitting my head against the wall. There are a couple of good groups on Facebook that give a lot of help and suggestions.

I suffered from burning tongue, and not one doctor took me seriously. Did some research and learned that the blasted medication prescribed by the then-neurologist was behind my suffering. Burning tongue and totally dry mouth. Was so difficult to deal with since I was a language teacher in a high school setting, teaching 6 classes per day. Had to have bottled water placed in various areas of my classroom (I did not stand still while I taught, since I enjoyed interacting with the students). Became intensely bad until I insisted that I would no longer take certain medications, went to another neurologist who crated a tapering schedule for me. Still had periodic episodes of burning tongue but so much milder. Hurt nonetheless. Chips of ice was/is so soothing. Used to chew gum but that created issues with my partial so used non-methylated cough drops/lozenges instead. Over time, the condition ameliorated, and presently I experience it mostly when not sufficiently hydrated. I also learned within the past few months that there is a connection with burning mouth syndrome and a lack of certain essential vitamins, I believe it's the B family. I've been on B12 injections monthly (prescribed by a neurologist who was consulted due to my having so many neurological problems), for nearly 9 yrs now. I gather that those injections contributed to my having obtained relief from my painful symptoms.

Hi All,

I am greek living in Greece. I had RSV and was admitted to the AGEA hospital. The best in Greece. and said to be the 5th in Europe. I was put in ICU due to sever body reaction. I was in an induced coma for 5 days and finally removed from machinery and admitted to a room where i underwent 4 weeks of recovery. When I finally started retuning to normal 1/3 of my tongue had a large burn like scab that hurt like hell. The doctors all said it would pass and issued a "magic mouth "wash. After my release my tongue got worse and the hospital refused to admit any wrongdoing and has totally abandoned me. No one knows what is wrong or treatment. It has been 5 months with no help in sight. I am losing weight & my life has totally changed, constant pain and depression. I have seen 5 docs , mouth specialists, all who are ignorant to my malady, My next step it to sue the hospital. FYI the bill was 150K €.

I believe mine is from nerve damage from hard acupressure on the neck…. Upon googling on the AI, ALA is supposedly beneficial. Has anyone had success or improvement with ALA on BMS?

I am being treated for GERD with 3 different medications. I also have BMS and since my GERD symptoms have not improved, I am wondering if in fact my symptoms are all related to BMS. Does anyone else have burning of the tongue, roof of mouth, extended to the throat and sternum region?

Yes! And I have talked to many doctors who have been part of my base of tongue cancer treatments over the last 4 years. None have had any experience with BMS and no one has a cure or effective treatment. I’m on pain medication to help me manage through the day. And that’s all it does it gives me an opportunity to get out of bed. But most days the pain is so bad I want to crawl into bed and never come out. All I drink is water. Foods are bland. It interrupts my food intake and overall quality of life. How can we not have any doctors anywhere in the world that can effectively treat this.

Those of you who say you get used to it must not have it as severe as I do. I can never get used to this.

I’m sorry I don’t have any solutions for you other than to say I empathize.

I’m 74 and I’ve had it for 18 years.

I think mine started with GERD. Generally if I keep it under control my tongue doesn’t burn as much.