by Kali’ Rourke
I have begun my 8th year of chronic pain with Burning Mouth Syndrome (BMS) and finally, something is working.
I have Primary BMS. If you have no underlying conditions and things look normal, despite oral burning every day that worsens as the day progresses, but ceases while sleeping, eating or drinking…welcome to our club and our pattern of pain.
If you have the same symptoms, but you also have an underlying disorder, then you may get a Secondary BMS diagnosis. Treatment of your illness may also relieve the BMS.
When you first start burning, you will try anything. I did.
Capsaicin rinses, aloe vera juice, vitamin supplements, etc. with no relief. Compounded estrogen spray in the belief it was hormonal, Lidocaine gel, which tasted foul and merely numbed everything…None of these helped me; not even a little.
Next stop, Specialists; each with their own perspective. They can cloud the issue if you aren’t careful. See your Dentist, Family Doctor, and an ENT to start. They can often diagnose and treat the “horses” of this diffuse neuralgia. Some horses are an incorrect bite, dry mouth, allergies, hormonal imbalance, geographic tongue, and even acid reflux, so see a Gastroenterologist if GERD is suspected.
Often, we end up working with a Neurologist who will rule out the horses of tumors and nerve impingement, and when everything comes back normal, he will begin to look for “zebras.” Zebras are rarer maladies and often syndromes of exclusion. In other words, everything looks fine but you are still in pain, so it must be a Zebra.
What do we do with our Zebra?
In primary BMS, there is no cure and we can only guess at a cause. Hormonal changes, dental procedures, stress and more are suspected, but no one knows for certain.
For those of us who are generally healthy except for this chronic pain, there are few medications that have been shown to be effective.
I tried Neurontin and Klonopin on my neurologist’s orders. Neurontin had too many side effects, and nothing changed when I went off it. It was not helping me.
Klonopin was different. I dissolved the hard tablets in my mouth, swallowing the medicine, and although it had the side effect of drowsiness, it took the edge off my burning and helped me cope.
This summer, my latest Neurologist switched me to Klonopin ODT dissolving wafers and they have been MUCH more effective for me. I put one on my tongue and let it dissolve, holding the liquid in my mouth for at least a minute and swish before swallowing.
I am now out of pain. I still get tingling at times, but about 98% of my day is mine again. My pattern of pain is broken.
If you suffer from BMS, consider discussing this treatment with your Neurologist or Doctor.
For the first time in over 7 years, BMS is not the first thing on my mind every morning. This may be temporary or perhaps it will last, but it is a joy not to burn and I will revel in it for as long as I can.
Kali’ Rourke is a wife, mother, writer, singer/songwriter, avid volunteer, philanthropist and a proud Seedling Mentor. She blogs at Kali’s Musings.