Burning Mouth Syndrome. I have it very severe.

@judybl1 My suggestion would be to Join the Burning Mouth group on Facebook. They are very active and supportive. There are over 2000 members from all over the world. I have suffered with it now for 9 years also and have it 24/7, it never left🥵
I have been to many different doctors and tried all the meds recommended to no avail. So not taking any meds for it now. I’m 74 now so I do take meds for other health issues. The older I get the harder the burn but having a supportive husband,family and friends makes life bearable.
I’m so sorry you are suffering and hope that one day we will wake up and it will be gone🙏🏻🙏🏻🙏🏻🙏🏻

The first thing I tried for burning mouth was see my dentist. He had two other patients with the same symptoms so he was aware of it. One patient, it went away on it's own. The other continued to have it.
Second, I went to my primary doctor and he wasn't aware it exists. I printed everything available on the Mayo website before seeing him. He was very interested and agreed it sounded exactly like what I was experiencing.
Third, I went to my neurologist. He believes it is a nerve disorder. Possibly related to a neck surgery I had for a ruptured disc that caused extreme pain in my neck and down my arm. I have fibromyalgia and nerve pain pretty much everywhere. I've had three back surgeries and have legs and feet numbness and burning ever since. The neurologist did not have any treatment to suggest.
I happened onto Xanax by chance. I was leaving for a trip to Australia and my mother was in poor health at the time so I was distressed about leaving her. My husband asked our doctor if he could suggest something so I could relax and enjoy this once in a lifetime trip. He gave me the very low dose of Xanax 0.5 mg. And I realized I felt less burning when on it so he has continued it in spite of my insurance hassling me everytime I get it filled.
I find stress makes the pain worse. Hot or spicy foods, some red wines.
Lately, it has been more severe even with Xanax. Not sure why except maybe stress.
I hope this will explain my journey and hopefully help someone else.
JudyBl

Response meadowhouse.
I printed the information from Mayo Clinic and took it with me to my appts. Sometimes if they can't see a problem, they can't treat a problem. Try to get your doctor to try Xanax 0.5 mg. It has helped some but not all the time. Right now I'm on fire! I'm 71 and have had this for 9 yrs.
Good luck to you and God Bless. I hope you will find relief.

Reply to jshdma
I've never noticed cold air making bam worse. Mine is always worse at night and better in the morning. I take medications for fibromyalgia hoping that would help but does not. Have you tried Xanax. If not, do. A little relief at times. Hope you feel better soon.
JudyBl

I have been on lyrica, gabapendin, colonipen. None help my burning tongue and mouth. I've had my vitamin levels checked and allergy tests. There has to be some cause we all have in common!

@judybl1 That's the problem. Research seems to indicate that there are numerous causes of BMS. Having seen top oral pathologists in NYC and Boston, I learned that they have little to offer: certainly no cure and very little effective treatment. One thing I learned was that medical opinion is that this is neurological--that is, the nerves on tongue and other places are severely damaged. They can regenerate, but it takes an extremely long time. Sometimes never.

Hello. That was a very good point on the nerves maybe never regenerating. If you have thrown up violently as I have back in 2016, nerve damage can occur from the stomach acid and pepsin enzyme. I'm sure not many people have thought that throwing up can damaged nerve tissue, but it certainly can if it happens often, or is very violent.Stu

I’m a female 68 years old and I’ve had burning mouth syndrome for several years. It’s all on the side of my tongue. I too went to my PCP then ENT then dentist and finally the neurologist. The neurologist prescribed lamotrigine. 200 mg three times a day. It has been a great help. Then the last time I went to my dentist again. He suggested xylimelt tablets. When it’s especially bad
a tablet and put one on each side of my tongue and let it dissolve. That’s a great help too.

lynschupbach ---- did lamotrigine have side effects? In my experience, It's never been mentioned after researching BMS for years.

Hello @rgpadilla

We do have some discussion groups on this topic. I've copied the links to two of these below. Just click on the links and you can read what other members have posted about BMS.
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-very-severe/
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
If you are comfortable sharing more, how long have you had this problem? Have you had any treatments that have helped?