After nearly eighteen years of this round of Burning Mouth, I usually know what is going on. Mastering the BMS Support Website helps, as well. However, no one should skip checking in regularly with their doctor or neurologist to let them know how they are doing, and, more importantly, to see if there is any new information, medications, or coping strategies they should know about.

Please keep in mind that many images, graphics, etc. on the Internet that show you gnarly looking tongues with cracks and lesions are NOT Burning Mouth. If you have Burning Mouth, there are no visible symptoms. It is one of the things that makes it a challenge to diagnose!

My checkups have gone to an annual schedule since I have had this for so long, and it was great to get a chance to share the physical therapy coping strategy and ask if there was anything new I should try. Unfortunately, it looks like I have tried most meds available, and the ones that worked the best had that pesky head twitch side effect, so I could not continue them.

Have you tried anything lately that worked for you?
I am still getting relief from 1 mg daily of Orally Dissolving Tablet Clonazepam (Klonopin) and staying well hydrated and rested. I find that stress, lack of sleep, or lack of adequate hydration are predictable triggers for me, so I work to avoid them as much as possible.

Year nineteen will start next month for me, and as I told Dr. Thaera in our appointment, “I don’t see an end to this road. I fear I will burn until I die.” He was encouraging and pointed out how much I enjoy my life and family, and that will last just as long. Good advice from a good advocate.

I hope you are finding ways to cope, staying in touch with your medical professionals, and giving yourself grace to do what you need to do to take care of yourself. Alone time, staying quiet, avoiding trigger foods, whatever! It isn’t selfish. It’s self-saving, and the people who love you will understand your needs if you take the time to explain them.