Defeating the Dragon-Burning Mouth



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I have been battling a dragon.

It breathed its fiery breath on me in 2006 for four months, disappeared as mysteriously as it came and then re-appeared in May of 2008 and has been my constant companion ever since. It is diffuse burning neuralgia that we finally are calling Burning Mouth Syndrome for lack of any closer diagnosis, since it began in the very back of my throat and palate (unusual for BMS) but has now spread to my tongue (typical in BMS). It may have been caused by dental procedures or a variety of things. We may never know.

There is no official cause and there is no cure, only management of the symptoms.

Through a plethora of specialists, medical tests (I won’t go into detail here because they were just too icky in many cases), vocal therapy, gastroenterology procedures, diagnostic nerve blocks, acupuncture, etc., I kept slogging along, hoping for a cure just around the next corner to no avail. Finally, after a year and a half of constant pain that was only relieved by sleeping or drugs that made me very sleepy, I hit a wall and got very depressed and laid down my sword.

Depression is a sneaky thing. It creeps in slowly and gradually grays out your world.

What do I mean by that?

Nothing makes you truly happy. Your body aches for no particular reason and you just want to retreat from the world. You lose your enthusiasm and your drive and a true appreciation for life. As those of you who know me will attest, that is not me. I am a force of nature in my usual optimism, energy, and enthusiasm and all of that just got sucked away for a while.

I realized how bad it had gotten when I was thinking that just “going away” would not be such a bad idea, but I realized I couldn’t do that to my family and that was what was keeping me hanging on. I called my Doctor and she insisted I come in right away. It was a great idea because she had been researching my case and I had also recently had a blood test to check my B and D vitamins, which can be low in BMS. The B was normal, but the D was very low.

We discussed my family history and she said I might have a gene variant that they have recently discovered which causes your body to incorrectly process folic acid. In fact, it actually blocks the absorption of vitamins that you need for healthy neurotransmission. This made a great deal of sense to me since I suffer from migraines as well. I didn’t really want to take a genetic test, but she said that since the prescription medicine recommended for it is merely L-methylate folate (methylated folic acid), it would not hurt for me to try it and see if my depression was improved. Meanwhile, they would put me on a combination of medicines that have been effective in BMS for some people and ramp me gradually off a med I was on that has a possible depression side effect. I also had to discontinue my multivitamin since it contained regular folic acid. I added a large amount of D3 for a couple of weeks to build the reserves back and now take D3 daily.

About eight days later I woke up and thought, “Wow, I am happier.” I got up and went about my day, realizing that a veil had been lifted; that my energy and enthusiasm had increased and this trend has continued. Two weeks later, I almost feel like I have my life back!

Has the pain gone away? No. I still have intermittent burning pain in the throat area and more often the tingling and burning in my tongue, but the difference is that I am able to handle it so much better. It is not overwhelming me. The fact that the throat pain has become intermittent is hopeful as I increase the dosage to the full amount on the new medicines and I will keep searching and praying for a cure.

If you are feeling like I did, for whatever reason, talk with your doctor. He or she may tell you to talk with a counselor and see if just having someone to talk openly with will do the trick, but if that is not enough, go back to your doctor and discuss depression treatment options. A blood test may reveal things for you as they did for me. Make sure you are getting enough D3 and B complex vitamins because those will help overall.

UPDATE May 2013 – still burning, but handling it:

I finally got the genetic test that revealed I do not have enough copies of the MTHFR mutation to need the Deplin. I will never know why the depression passed (perhaps the feeling that I was doing something about it?), or perhaps the D3 and B12 helped.

In any case, the advice remains the same. If you ever feel this way, contact your doctor and do something proactive. I know how hard it is, but the rewards are immense.

Slay your depression dragon so you can deal with the other challenges in your life with humor and grace…And keep hope in your heart that all things will get better. I do.


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