by Kali’ P. Rourke
I have been suffering with Burning Mouth Syndrome for nearly six and a half years now. Interested in learning more about this mystery disease?
I would tell you to Google “Burning Mouth Syndrome,” but I know what mess would appear. Mayo Clinic does a fairly good overview at http://mayocl.in/1mRRGuu.
I suspect my burning was caused by dental work, but I may never know the cause. Every once in a while, what my Neurologist euphemistically refers to as “the persistence of it” overwhelms me and I have a brief, but intense pity party.
Instead of focusing on the optimistic side of the coin:
It isn’t fatal
At least it isn’t cancer
My family is supportive
There are drugs that help
I have developed decent coping strategies
I occasionally dip into the pessimistic side:
It hurts nearly every day
The drug helps but makes me drowsy and aimless
There is no rhyme or reason to the good days or the bad days
Even on good days, my tongue tingles all of the time
I think, deep down, I am angry
I fear–It. Will. Never. End.
Recently, I got a new medicine from my neurologist. It is used at a fairly low dose to control errant nerve activity and at much higher doses for patients who are dealing with seizures. Under his direction, I ramped up my dosage gradually to see if I could tolerate it. Side effects included possible lowering of blood sodium, drowsiness and suicidal thoughts.
You would think those things would scare me, but with exception of the sodium levels (which we monitored with blood tests), anything I take has those side effects, and more. They are “old hat” to me now.
Our goal in adding this medicine was to calm the misfiring nerves that cause the burning and tingling sensations in my mouth. If we could get the nerves to rest, it may help with the healing and have the added benefit of symptom relief. I could only hope.
Hope is a powerful thing, probably even more powerful than medicines.
Unfortunately this hope did not pan out, and I have added one more unsuccessful medication to my ever-growing list. I am fortunate to have one medicine that does control the pain to an endurable level and I will keep looking.
And every so often, I will pause, indulge in a brief pity party and then move on.
Kali’ is an avid volunteer, a Mentor with Seedling Foundation, and an Impact Austin philanthropist. In her spare time, she does social media for nonprofits, blogs and is also a singer/songwriter!