When was the last time you burned your tongue? Perhaps it was from drinking scalding hot coffee. How it hurts!
Now imagine experiencing that pain every hour of every day. For three long years.
“My doctor tried everything,” remembered a Brockport resident, who prefers to remain anonymous. “He thought maybe I was brushing my tongue too hard, or I was having a reaction to my toothpaste or the medications I was taking. I went off my medications for eight months, switched toothpastes, tried medication to increase my saliva, but absolutely nothing helped.”
Desperate for relief, she went online to see if she could learn anything that might help. “One website suggested I gargle with salt water, another suggested taking certain vitamins and another suggested taking niacin.”
None of those helped and one actually landed her in the emergency room at UR Medicine’s Strong West.
“I broke out in a terrible rash with half dollar size blotches all over me, head to toe,” she said. “Turns out, I was having a severe allergic reaction to the niacin.”
Falling asleep was very difficult, so she frequently took Tylenol PM. There were really-bad days and not-so-bad days, but never good days. The pain, which progressed as the day went on, was mostly on her tongue and just around the inside of her lips.
“It basically just hurt all the time,” she described. “The strange thing about this problem, was that the only time it didn’t hurt was when I ate, so I gained weight. Drinking cold beverages or sucking on ice chips helped, but only very briefly.”
So she kept herself busy to push the extreme discomfort away. “I had to play mental games with myself to take my mind off it,” she said.
One day last summer, she was hurting so badly, that she called her doctor again asking if she could see him. He offered to accelerate her appointment, so he suggested a consult with the nurse practitioner in his office. “The nurse practitioner looked through my chart and recognized how long I had been suffering with this pain,” she recalled. “She said ‘it’s time we refer you to a clinic that specializes in oral medicine.’”
She was referred to Dr. Sharon Elad, an oral medicine specialist with UR Medicine’s Eastman Institute for Oral Health.
“My first appointment with Dr. Elad involved getting her up to speed on my symptoms and everything my family doctor had tried, and then she sent me for blood work,” she said.
Dr. Elad, chair, EIOH Oral Medicine, and clinical chief for Hospital General Dentistry, and a professor of Dentistry at the University of Rochester School of Medicine and Dentistry, diagnosed her with Burning Mouth Syndrome, the term for chronic burning in the mouth without an obvious reason. It may affect the tongue, gums, lips, inside of cheeks, roof of the mouth or widespread areas of the whole mouth.
“Burning Mouth Syndrome is very challenging to diagnose,” explained Dr. Elad, “because it usually doesn’t cause any noticeable physical changes to one’s tongue or mouth. There is no known cause, and the diagnosis is based on the assessment of symptoms and patient’s medical history, physical evaluation, and specific laboratory or imaging studies, to rule out all possible organic causes.”
Dr. Elad gave her a few options for treatment which included a pill, or a compounded medicated oral rinse, twice a day. Since this patient is the type of person who prefers not to take medications if it can be avoided, she chose the rinse.
A month later, she saw some improvement. “By the third appointment, I was 90 percent better,” she said. “Dr. Elad increased the rinse to three times a day, and since then, I’ve been basically pain free. I’m euphoric! Dr. Elad has changed my life. I will be forever grateful! It’s so nice not to be battling this thing all day, every day.”
Every once in a while, she will get a hint of the burning sensation, but as soon as she rinses, it goes away.
Because Burning Mouth Syndrome affects people differently, it’s unknown at this point if she will need to use the rinse indefinitely, or if the symptoms will disappear and she can discontinue using the rinse.
The Oral Medicine clinic at Eastman Institute for Oral Health provides care for numerous patients with Burning Mouth Syndrome, as well as other diseases and conditions impacting the oral cavity, such as infections, ulcers, complications from cancer treatment, canker sores, chronic oral mucosal diseases, salivary gland diseases and many others. For more information, please call 273-3833, or visit www.urmc.rochester.edu/dentistry/patients.
Dr. Elad is published extensively in professional journals and has co-authored multiple book chapters. She is currently the principle investigator of several studies, and is an invited speaker at conferences around the world. Dr. Elad is the head of educational courses for the residents and students at EIOH focusing on Oral Medicine and dental management of medically complex patients. She is among the select few who have been given the Honorary Diplomate Award from the American Board of Oral Medicine.
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