The Mystery of the Burning Tongues

Many of the stories read like this:

About 5 years ago I was jogging and fell. … About 5 months later I began to have a really bad taste in my mouth. I went to an ear, nose and throat specialist and he said the Clonidine I was taking for high blood pressure was causing it, so my regular doctor gave me Zoloft [ an antidepressant] to try to handle the stress.

The bad taste turned into a burning that was worse on the right side of my mouth and into my throat… I was diagnosed with acid reflux and took lots of medications. I finally had a tube into my stomach to measure the acidity and it was all negative… I was sent to a neurologist. He gave me Tegratol [an anti-convulsant and a pain syndrome modifier] which made the burning worse. I had an MRI which showed nothing. I was then sent to an oral surgeon. He gave me Elavil (an antidepressant). It didn’t' help. I went to a dermatologist. He said I had an oral Yeast infection and gave me Nystatin [an antifungal].

BMS (Burning Mouth Syndrome) has mystified doctors for years, and so doctors sometimes came up with non-medical explanations for it. For instance, a medical abstract in the Journal of the American Dental Association in 1946 concluded that BMS seems to be primarily a psychogenic syndrome occurring chiefly in menopausal women who suffer from emotional conflict [and] sexual maladjustment." Another, published in the Archives of Neurology and Psychiatry in 1938 states that BMS was due to a frustrated sex life."

The syndrome was partly solved by Dr. Linda Bartoshuk at Yale Medical School and Dr. Miriam Grushka, an associate professor of dentistry at Case Western Reserve University in Cleveland. On rounds, she says, many patients were complaining of BMS, but the doctors did not book follow-up appointments so that the patients would not think something was wrong with them.

Grushka made BMS the subject of her thesis. She discovered a relation between BMS and rheumatoid arthritis and lupus.

Bartoshuk found that anesthesizing the tongue made the bad tastes and mouth pain of BMS go up. This told her that BMS was a 'phantom' in the nervous system. Her hypothesis was that the syndrome was triggered in some way by nerve damage. Somehow, without the ability to taste, the brain was creating a phantom sensation. Normally sensations in the tongue would somewhat suppress the pain, and anesthesia removed that suppression.

Now that Grushka and Bartoshuk understood BMS, what could they do about it? Grushka had heard "a couple of anecdotal reports" of people suffering from BMS who had been given an anticonvulsant drug called Clonazepam for other medical reasons. Coincidentally, the Clonazepam seemed to clear up their oral pain. Grushka then tried it on her own patients. It worked. Now both Grushka and Bartoshuk estimate that up to 70 percent of BMS sufferers will find relief from Clonazepam - as will those experiencing phantom tastes.

The explanations of BMS in the 30's and 40's had a Freudian cast. This led to no progress. When Grushka and Bartoshuk were willing to treat it as a real disease, progress was made. Sometimes the lack of an explanation pushes diagnosticians prematurely into the default explanation of the day, which is often that the disease is "in the patient's head'.