Connect
Burning mouth syndrome – anyone else have this?
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!
Like
Helpful
HugInterested in more discussions like this? Go to the Skin Health Support Group.
Connect
@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.
@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.
@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.
-
Like -
Helpful -
Hug
1 ReactionI've been suffering from bms for a year. It's driving me crazy. Most times my whole mouth burns. I'm constantly moving my tongue feeling my teeth and cheeks. I've become so conscious of the movement and hate to go in public.
I had c diff first and the bms started about the same time. With having both these things I was a mess mentally. I've been to many different doctors with no help. I pray to find help and become normal again. I'm a 76 year old female.
-
Like -
Helpful -
Hug
1 Reaction@sanfan First, I wouldn't wish this on anyone. It's miserable and seems to be untreatable. I do know that no spicy foods, or hot foods to the touch of the tongue can be tolerated. And it seems to cause a flare up. I was fitted for a night guard to wear at night. It's calmer in the morning with it, but then again it usually is calmer in the morning. I just started Alpa Lipoid Acid 600 mg. It's over the counter. I have been reading that in studies it has shown about 60% helpful. At this point I will try anything. Let me know if you have tried it and I will let you know if it starts to help.
@kathyacurl I was wondering about Gabapentin. And I went to two ENT's and NO HELP AT ALL. I will drink my diet root beer in the day once and it does help. Also, ice chips help. Everything is short term. But, just getting through the day is our best bet.