A friend asked the other day how I was doing. Was the burning any better? Had they found any cures?
I assured her that all was the same. I am so grateful for the efficacy of Aimovig in controlling my migraines, but it has, as expected, done nothing for Burning Mouth Syndrome (BMS). The Clonazepam ODT I take twice a day keeps the burning at a level where I can function and only occasionally do I have a flare of a day (or three) where nothing seems to touch the pain level much and staying very hydrated, sleeping and being quiet are the only coping strategies that get me through the day(s).
After we spoke, however, I found myself in a fantasy where I typed the amazing title of a blog post. “Burning Mouth Syndrome Cure is Here!” I was delighted as I daydreamed about a day when we would all descend on our doctors in droves, eager to start the totally fictional therapy that would break us out of the bars of this chronic pain prison. I imagined how gleeful I would be to write that very last post in my “Burning Mouth Journey” as I sent people on to pursue their cure and closed this shop up once and for all.
I even fantasized about what would happen next. Would I keep the blog up so that even people who didn’t find the good news elsewhere would still have somewhere to look? Probably. I would update the BMS-Support Website with a banner and then plan a “coming out” party with all of my friends. Instead of the traditional “coming out,” however, it would be coming out of pain, coming out of the community of chronic pain sufferers, and celebrating for the millions of us who would finally have both an answer and a cure.
Alas, it was only a fantasy.
One to be placed with unicorns coming to frolic outside my highrise window and talking to birds. I would, of course, tell the grackles to get lost! 😀
So, back to reality and a day of working out, lunch with a friend, and spending a bit of time this afternoon scouring the Internet for any new research, findings, or hope to share with my partner in detective work, Dennis Sharpe. He is the guy who answers your questions on the BMS-Support Website, and if you have been helped at all by the site, give him thanks. And if you come across a study that is recruiting or scientific research that applies specifically to Burning Mouth Syndrome, let us know through the site. We may add your find to the information that is there for everyone!
Wishing you a low-pain day and a good week ahead, my friends.