Burning Mouth Syndrome and Me

Burning Mouth Cloud

Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?

But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.

The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.

When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.

I am not a doctor and try to make that clear at all times. These are my thoughts, observations, and experiences that you may or may not find useful to you. I will always encourage you to consult with your doctor, take good care of yourself, ask for help when you need it, and communicate with your family and friends so that even if they cannot help, they can try to understand.

Commenters have asked why I don’t personally think vaccination for #COVID is related to burning in the mouth. It may be, but it was not for me and this blog is about my journey. My personal calculation of risk was that even if it caused more pain or a flare, it would be worth it to help to prevent death in an ICU with a ventilator tube down my throat. None of the three doses I have received flared my burning, and so that is what I reported.

Your experience may be different and I respect that, but I will continue to share mine and to encourage anyone with a sudden onset of oral burning (whatever they may suspect as a cause) to see their doctor and rule out the other things that can cause it. Some are very easy to cure, and wouldn’t that be wonderful?

New definitions and diagnosis parameters are in the works right now, and perhaps the future holds a more binary diagnosis tool that could cause this burning to be classified as a disease (CORRECTION: “Disorder”) rather than a syndrome. I will keep asking my Neurologist what he is hearing and will keep my ear to the ground for more research and recent studies that may give us easier paths to diagnosis and treatment and will share that information here. I keep hoping that at some point a truly effective treatment with few side effects will be found, but after fourteen years of burning, I am simply coping.

NOTE: The BMS Support Website has added the Research Paper that discusses the proposed changes in both name and diagnostic criteria. Check it out HERE.

Take care out there and feel free to keep asking questions, but I am not interested in debating vaccines with you, so leave those to your doctor.

Thank you.

7 thoughts on “Burning Mouth Syndrome and Me

  1. Thank you for this most recent blog message to us. Agree 100% that NO ONE knows what is causing our pain. It’s very interesting that the “powers that be” are urging that the word “syndrome” to be changed to “disease.” What will the repercussions of this change be in terms of ??? research??? Time will tell.

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    • Hi Barbara!
      I hope I didn’t confuse you. The discussion between “Syndrome” and “Disease” (Correction: “Disorder”) is ongoing between specialists who are doing research on setting parameters that will hopefully make it easier to get a diagnosis. Again, I AM NOT A DOCTOR! However, I could see a slight advantage to having it classified as a “disorder” that could then attract more research and maybe even support. Syndromes are fuzzy things that are determined by excluding every other possibility, which makes them expensive with all of the testing involved and hard for even specialists to diagnose. It took me a couple of years to get a definitive diagnosis. Stay tuned and let’s see what they come up with. Maybe it will be to our advantage as sufferers.
      Take care,
      Kalí

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  2. Hi Kali,
    Thank you so much for starting this website. I found you after at least 15 doctor’s visits last year. I went to ENT’S, Oral Surgeons, Dentists, Allergist and a Autoimmune disease doctor. The University of Maryland Oral Medicine doctor believes I have BMS. Have you ever come upon information tying BMS with TMJ? Thank you for all you have done for me and many others!!

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    • Tammie,
      I am so sorry you are going through this. It’s often a lonely journey and you are always welcome here.
      So, first of all, really good question. They can be tied together in that they are both neuropathic pain in the maxillofacial area and mouth. TMJ is generally a more structural issue, but to be frank, we don’t know what causes BMS so it may be, too. In BMS, a nerve or group of nerves somewhere have gotten the message to fire and that fire has gone out of control. TMJ was one of the things that got ruled out for me right away.
      TMJ could be a causative agent in irritating the nerves in the oral cavity. Many specialists (ENTs and Periodontists in particular) think that if TMJ could be relieved (and often it can) the burning sensation might stop if that is indeed the cause. I assume you have looked at the treatments for TMJ. Mouth guards, custom appliances and even Botox have given relief to some. If you have TMJ, I would definitely pursue treatment of that and see if relief in that area eventually lets those nerves settle down. One thing that many specialists overlook with TMJ is the possible help that alternative medicine can give. A combination of massage and acupuncture might be very soothing, so maybe that is something to try. Please let me know what you find out, and if you find a treatment that helps you.
      Thanks for dropping in and I hope you find relief soon!
      Kalí

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  3. Maybe take a look at vitamin B6
    There is some documentation regarding the potential adverse effect created by to much vitamin b. I was taking a product called Airborne daily for quite some time which contains high levels. I stopped about five weeks ago and can say that my BMS frequency has diminished significantly. Before, I would know pretty much daily by 10:00 if it was going to be a bad day and more than not, it was. After stopping all vitamin B supplements my symptoms are significantly less severe and less frequent.

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    • Steve,
      It is always a good idea to get your vitamin levels checked when pursuing a diagnosis since B and D levels are often low for BMS sufferers.
      I am a little confused about your Airborne comments, however, since no B vitamins appear in its ingredients list. Emergen-C has several B vitamins in it. Did you mean that instead?
      In any case, everyone has different triggers and if B vitamins are yours, I am glad you discovered it and have reduced your intake. Good luck and let us know if it continues!
      Kalí

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      • Yes I apologize. It was Emergen-C. I believed they were similar products. In any case I no longer take either and the improvements remain.

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