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Burning mouth syndrome – anyone else have this?

Posted by londonex @londonex, Jan 1, 2025

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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have2bowl | @have2bowl | 6 days ago
In reply to @londonex "Thanks for your thoughtful response. In my case, it seems much less about food sensitivity or..." + (show)
Profile picture for londonex @londonex

Thanks for your thoughtful response. In my case, it seems much less about food sensitivity or allergies and much more about emotional status. According to the folks at Harvard and Brigham women’s in Boston, where I am treated, this can afflict individuals after a severe trauma – in my case the suicide of my sister in 2018. Once it has taken hold, it sits in the body and responds to other high levels of stress and emotion that may come along throughout life. I’ve become somewhat accustomed to it and able to deal with it pretty well. The issue with me is that it kicks off anxieties about whether other issues are coming into place such as esophageal comorbidities, etc. So it is a bothersome health anxiety trigger more than anything at this point. Thanks all!

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V

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have2bowl | @have2bowl | 6 days ago
In reply to @londonex "Thanks for your thoughtful response. In my case, it seems much less about food sensitivity or..." + (show)
Profile picture for londonex @londonex

Thanks for your thoughtful response. In my case, it seems much less about food sensitivity or allergies and much more about emotional status. According to the folks at Harvard and Brigham women’s in Boston, where I am treated, this can afflict individuals after a severe trauma – in my case the suicide of my sister in 2018. Once it has taken hold, it sits in the body and responds to other high levels of stress and emotion that may come along throughout life. I’ve become somewhat accustomed to it and able to deal with it pretty well. The issue with me is that it kicks off anxieties about whether other issues are coming into place such as esophageal comorbidities, etc. So it is a bothersome health anxiety trigger more than anything at this point. Thanks all!

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@londonex I have a first appointment next week at Brigham and Women’s. Have they done anything at all to help?

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carisse | @carisse | 5 days ago

I’ve had Burning Mouth Syndrome for over twenty years and the only thing that calms it down is Aloe Vera juice 1 tbsp 2 or 3 a day and it Calms it down and sometimes I even forget I have BMS. It has been a god sent for me…worth a try….please let me know if it helps you

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claremac | @claremac | 5 days ago

I have had BMS for 12 years. It is truly ruining my life. Nothing has worked. I use clonazepam but after a couple of days of use I am deeply sad. When I go to see so called specialist they recommend the same old things that do not work.
I have been reading many medical research studies. I came across a study about BMS and the use of Low Dose Naltrexon. It was intriguing, some study participants claimed a 50% reduction in symptoms. Has anyone heard of or tried LD Naltrexone?

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dbamos1945 | @dbamos1945 | 4 days ago

@claremac: Burning Mouth Syndrome may have many causes to experience flares. I am a NET cancer patient and while researching a possible treatment, a fellow NET patient recommended L-Lysine 1000mg taken orally. It is an amino acid and she reported that it prevented the burning mouth syndrome. She took L-Lysine with each dose of the chemo treatment.
If you check with your doc they may recommend the correct dosage for your circumstances. Hope this helps!
PS: If you have tried L-Lysine, I would love to learn the dosage & what reaction to the symptoms you experienced. Best to you…. Bette

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claremac | @claremac | 4 days ago
In reply to @dbamos1945 "@claremac: Burning Mouth Syndrome may have many causes to experience flares. I am a NET cancer..." + (show)
Profile picture for dbamos1945 @dbamos1945

@claremac: Burning Mouth Syndrome may have many causes to experience flares. I am a NET cancer patient and while researching a possible treatment, a fellow NET patient recommended L-Lysine 1000mg taken orally. It is an amino acid and she reported that it prevented the burning mouth syndrome. She took L-Lysine with each dose of the chemo treatment.
If you check with your doc they may recommend the correct dosage for your circumstances. Hope this helps!
PS: If you have tried L-Lysine, I would love to learn the dosage & what reaction to the symptoms you experienced. Best to you…. Bette

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@dbamos1945
Thank you. I will check it out.

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