For weeks after I wrote this story in 1999, published in the New Haven Advocate, I’d get dozens of emails from people all over the country afflicted with Burning Mouth Syndrome. They came almost exclusively from women, who experienced unexplained dry, burning sensations, and odd, often metallic flavors on their tongues. They told me they were suffering not only with the symptoms, but from condescending disregard from the largely male medical community. They were thrilled they might finally have the answer, along with the evidence that they weren’t crazy, to show their doctors. Though the Advocate often had a big impact on New Haven policy and politics, nothing I had written felt like it had helped so many individuals.
By then, the Advocate, the alt-weekly I edited for about a decade, had been bought by the Hartford Courant. A few years after the story appeared, the Courant migrated the Advocate‘s web site into the Courant’s domain, and decided not to bother bother with archiving our past content. Just like that the article disappeared.
Twenty-plus years later, you still can’t find a lot of online content about Burning Mouth Syndrome. When I recently found my story in a stack of old papers I decided to bring it back to life.
Many of the stories read like this:
About five years ago I was jogging and fell. I hit my chin and broke my front teeth. I had them capped and my lip stitched up and thought everything was fine. About five months later I began to have a bad taste in my mouth. I went to an ear, nose, and throat specialist.
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. My chest even burned. I was diagnosed with acid reflux and took more meds. I finally had a tube inserted into my stomach to measure the acidity and it was all negative. . . . They did an endoscopy to look at my throat — nothing. I was sent to a neurologist. He gave me Tegratol [an anticonvulsant, anti-neuralgic, 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 anti-fungal]. He eventually sent me to the Mayo Clinic to see Dr. Rogers, who ran many allergy tests which were negative. He said it would end eventually and gave me another antidepressant, Pamelor. Still no help. I went to my gynecologist and she said it may be a hormonal problem since I was 54 at the time. . . . I took all kinds of vitamins, especially in the B family. I was tested for pernicious anemia and it was negative. . . .
When my mouth first started burning, I didn’t think I could endure it. I have found that if I stay really busy I can block it out.
I found Leona from among 20 or so posts on an Internet message board dedicated to victims of Burning Mouth Syndrome. Almost universally, doctors tell patients they have no idea what causes the pain. They make guesses and order tests and prescribe medications, but basically they have no prescription for relief, much less a cure.
Sandra, for example, had a bitter taste on the end of her tongue. She was given Prednisone, a steroid, which didn’t work. She was tested for Lupus and Sjogren’s disease, an arthritis-like affliction of connective tissue. Both were negative. One doctor said her ailments were “all in her head.”
Donna W, from Australia, describes the case of her mother:
My mum went through a very early menopause due to a hysterectomy at age 34 (she’s now aged 54). She’s had a sore burning mouth and throat for the past year, which also at times becomes very dry, leaving her at gagging point for which she chews gum regularly. She gets a terrible taste of acid that cannot be overcome by chewing or sucking anything.
... She takes this disease in her stride and hopes that someone will come up with the magic answer. To date, none of the treatments have been effective and she persists with sucking lozenges designed for fungal infections, which they also said may have been the cause. ...
Then there’s a colleague of mine who woke up one morning and found everything tasted and smelled of lemon. And the friend who had a sore tongue and never got any help from any of the doctors she saw — and her mother who experienced the same symptoms.
These sufferers all have one thing in common: They are women. And until very recently, the male-dominated medical profession never took their complaints seriously.
Authors of medical abstracts from more than 50 years ago believed the pain was from some sort of hysteria — in the classic sense of the word: “from the womb.” One, published in the Journal of the American Dental Association in 1946, concludes 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: “It seems safe to conclude that many women, particularly when suffering from dental, nasal, or pelvic disorder, may complain of a pronouncedly disagreeable taste in the mouth when their sex life is frustrated and void of any pleasure. In this way, acceentuation of this symptom may give an additional symptomatic indication of the rejection of sexual life.”
So leave it to two women to solve the mystery of the burning tongue.
Dr. Linda Bartoshuk and her staff of graduate student researchers occupy a small corner of the second floor of the Brady Building on New Havens Cedar Street, a part of Yale’s medical school campus. I went to her office in early September not as a journalist but as a BMS sufferer. It had been almost two years since I first experienced an extreme dryness and metallic taste on my tongue that wouldn’t go away no matter how much water I drank. I’d heard a chorus of “I don’t knows” from the medical establishment, who had no idea what was causing my problem. They tested me for pernicious anemia, AIDS, and diabetes, which all came out negative. I then spent thousands of dollars on a naturopath, vitamins, and nutritional supplements. I experimented with restrictive diets and developed far-flung, implausible theories about why my mouth felt like a sandbox on a hot Arizona afternoon. I’d never heard of BMS, and all the research I attempted on the Web turned up nothing. l was one of an estimated 2.5 million BMS sufferers in the United States, of which only about 25 percent are men.
Bartoshuk, a taste researcher, greeted me at the door with an aura of friendly energy — a broad smile atop her compact, comfortable frame. She welcomes “patients” (ironically, she’s an experimental psychologist, not a physician) as she would an old friend into her house. The cramped space is cluttered with boxes, papers, and pictures of blue-dyed tongues hanging on the walls. As you pass from one narrow-slotted workspace through another to her office, you’ll pass a few small boxes filled with the latest oddball confections. Though food isn’t permitted in medical labs, Bartoshuk has special dispensation — “It’s a taste lab, after all!” she’ll tell you, and she supplies visitors and scientists in neighboring labs with sweets from the Junk-Food-of-the-Month Club mailings.
Within in an hour, Bartoshuk had figured out the cause of my dry tongue. And, unlike the baffled doctors I had seen, she proved it.
Bartoshuk first became intrigued by BMS because a friend had it, and she simply didn’t believe that the cause was psychological.
Dr. Miriam Grushka, an associate professor of dentistry at Case Western Reserve University in Cleveland, became interested in BMS while studying dentistry in Toronto. On rounds, she says, many patients were complaining of Burning Mouth symptoms — oral pain that includes burning, dryness, soreness, or some sort of altered taste perception known clinically as dysgeusia — and the doctors had no answers.
“We’d see all these Burning Mouth patients,” she says, “and we’d run blood tests. The blood tests would be normal, and the doctors would tell them nothing was wrong with them, to go home and be happy. They [told us] we shouldn’t book follow-up appointments because if we did the [patients] would think that something was wrong with them and that we shouldn’t encourage them in their belief.”
Grushka decided to make BMS the subject of her thesis. She discovered a relationship between BMS and some connective-tissue disorders, including rheumatoid arthritis, Sjogren’s disease, and lupus. It was the first clue that something organic was going on.
She was also the first person to measure taste symptoms and to realize that the strange tastes patients were experiencing — mostly metallic — were important. She knew that Bartoshuk was studying taste — especially a phenomenon of taste phantoms, in which people experienced certain tastes with no apparent organic reason. Bartoshuk had established that taste phantoms were the result of damaged nerves, with the brain creating the sense of taste in much the same way an amputee may still feel her or his former limb. Grushka called Bartoshuk to discuss their work on taste. Neither believed that the phantom taste work was connected to Burning Mouth Syndrome.
At the same time, Bartoshuk was doing basic work on the physical nature of taste. She was working with supertasters (those with a high number of taste buds) to understand the mechanism of how taste sensations are transmitted to the brain. In the process, she discovered that those suffering with BMS were always supertasters, though those who experienced phantom tastes could be people with fewer taste buds, characterized as moderate or even low tasters.
Years later, Bartoshuk experimented with treating mouth pain with candy made from capsaicin — the chemical that gives jalapeños their burn. The theory is that the heat would stimulate some sort of anti-pain response by desensitizing pain receptors. (This works with some patients suffering oral sores.)
In 1995 a Yale law professor came to her lab with a slight burning on the front of his tongue. It wasn’t very serious, Bartoshuk recalls, “but the Yale Health Plan didn’t know what to do about it …. They thought I could use capsaicin to treat his pain and it didn’t work. I gave him a taste test and he had taste damage on the front of his tongue, and he couldn’t taste bitter. So I thought I would test him with anesthesia. I don’t know why I did it. I was using anesthesia to test taste phantoms [by anesthetizing the tongue Bartoshuk had been able to induce taste phantoms], but he didn’t have a taste phantom. I can’t tell you why I did it, I just did it. And his burn doubled.
“The minute his pain went up, I knew [Burning Mouth] was a phantom in the nervous system. It had to be.” Her quick hypothesis: The syndrome was triggered in some way by nerve damage. Somehow, without the ability to taste; his brain was creating a phantom sensation.
“All of a sudden the pieces went click click click and I knew what it was. … suddenly the whole picture just clicked into shape.
“The minute I realized what had happened I called Miriam and I said, ‘I think I know what it is.’ When I told her, she said, ‘Say it again.’ Then she said, ‘Oh my God that’s it,’ and she invited me to Toronto to evaluate her patients. They all had no ability to taste bitter and they were all supertasters. And it was just clear that we were right about it.”
When I went to see Bartoshuk, one of the first things she asked me to do was sit down next to a sink and stick out my tongue. She wasn’t looking for signs of pathological Illness — the doctors had already done that. She was going to test my ability to taste.
One by one she dabbed sweet, salt, sour and bitter extract directly on various taste centers on my tongue and the roof of my mouth with a Q-tip. For each dab I was to record the level of taste on a computerized chart. One by one, I found myself on the low end of the scale. Down at the bottom. Trying to click a mouse just a hair above zero. Except for bitter. I couldn’t taste that at all.
Next, Bartoshuk tested a swab of alcohol on the tip of my tongue. It zinged with top-of-the-chart burn. Way above normal. Ouch.
Bartoshuk then told me she knew what was wrong with my tongue.
She believed, she said, that I was experiencing a form of pain phantom.
She theorized that a series of sinus infections I had before the onset of symptoms — including a month or so of a telltale metallic disgeusia (“metallic taste phantoms are associated with nerve damage,” Bartoshuk later told me) had included a virus that likely had attacked the nerve that ran from the tip of my tongue through my inner ear to the brain. The nerve had rendered my taste buds dysfunctional.
Since I am a supertaster — yes, she checked the number of taste buds on my tongue — my brain was getting a false message from my tongue: pain. Bartoshuk is working on the theory that taste normally inhibits pain from the tongue. When my taste sense was damaged, the pain sensations were no longer inhibited and suddenly appeared. This neat biological trick, she hypothesizes, allows animals to survive — eat — even when experiencing oral pain.
Similar interactions among nerves explain something she calls “the constancy of perception in the event of injury.” That is, the brain has an uncanny ability to compensate for a loss of sensation in the mouth. So, even though I had almost no taste sensation on individual taste bud clusters, I had enough of a signal of taste in my mouth as a whole for my brain to recognize certain tastes and amplify the sensation. I therefore had experienced no perceptible loss of taste.
If indeed I was experiencing a pain phantom, Bartoshuk said, she could prove it. She painted my tongue with an anesthetic; the kind dentists use locally to deaden the gum before injecting Novocain. If the feeling of dehydration I was experiencing was caused by some disease of the tongue itself, then the anesthetic should numb the tongue, and make the discomfort go away. If, however, the problem was a phantom, created by my brain, I’d compensate for the absence of sensation, then the discomfort should increase from the lack of stimuli.
For about three or four minutes I felt like someone had rubbed habañero peppers — one of the hottest chili pepper there is — on the tip of my tongue.
For Grushka and Bartoshuk, one more challenge remained. Now that they understood Burning Mouth Syndrome, what could they do about it?
Grushka had heard “a couple of anecdotal reports” from Massachusetts 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 decided to try Clonazepam in small doses on two patients. “The results were remarkable.”
Yvonne woke up one morning with a burning sensation.
It got to the point where I felt like I had hot peppers in my mouth and it was not going away. It was night and day, affected my gums, tongue, and whole insides of my mouth. None of the doctors I had seen, including specialists, could help me. They didn’t even know what it was. My brother found informationabout Dr. Bartoshuk on the Internet. I called her . . . She told meabout Clonazepam . … I went to an oral surgeon … He’s an older man. “Y’know Yvonne, ” he said, “they used to treat women with Karo syrup for this problem.” I said, “you’ve got to be kidding me.”
He wrote me a prescription for a low-dose of Clonazepam. Within two or three days it was like a gift from God. It slowly eased off. I was taking one tiny pill a day. I took it a for couple of weeks. It has not come back.
Yvonne is a “typical” case — a post-menopausal woman with other co-factors, including viruses and fibromyalgia.
“We don’t have any evidence at present that menopause alone is sufficient to cause BMS in supertasters,” explains Barcoshuk. “You have to have other damage to the seventh nerve [the nerve at the tip of your tongue] as well.”
But menopause is clearly a common factor for most BMS sufferers.
“Menopause acts like a source of damage,” she says, “but it’s probably not the most important one, which is probably why we get pre-menopausal women and men who get this.”
Symptoms can appear up to three years before menopause or until 12 years after, reports Grushka, with the most frequent time of onset two years before to six years after.
“The ability to taste bitter in general is linked to hormones in women,” explains Bartoshuk, “and the reason may be that bitter taste is for poison detection, and you want women when they’re carrying a fetus to be very good detectors of poison. We know that bitter varies with the menstrual cycle; we know that bitter is at its peak early in pregnancy and we know that at menopause [the ability to taste bitter] drops down. The conclusion is that it’s hormonally linked and that the loss after menopause is probably due to the loss of estrogen.”
Bartoshuk, in conjunction with Yale ear specialist Dr. John Kveton, is currently running clinical trials on the effectiveness of Clonazepam in treating BMS. (OK, not all male doctors have shunned Burning Mouth sufferers. In fact, Bartoshuk stresses, since she and Grushka have presented papers on the syndrome, they have found the medical establishment enthusiastic about being able to treat people with BMS.) Bartoshuk spoke excitedly with me about the success of their first patient, whose symptoms went away within 24 hours. Both Grushka and Bartoshuk estimate that up to 70 percent of BMS sufferers will find relief from Clonazepam— as will those experiencing phantom tastes.
Meanwhile, Grushka believes that their work on oral pain is just the beginning of a “revolution” in how we understand the relationship between mouth pain, taste, and nerve function. And she calls Bartoshuk a “genius” for her ability to put together data from different fields — pain study, taste and genetics — to “come out with a model that people in the pain field didn’t come out with.”
Now that they’ve conquered Burning Mouth, Grushka is beginning to apply that knowledge to something dentists refer to as Atypical Odontalgia — tooth pain with no visible organic cause. Though there’s no hard evidence to support it yet, Grushka is concerned that some of the procedures embarked upon by dentists could be having an impact on the nerves in the mouth that may be causing phantom pain. The example of Leona, at the beginning of the story, whose symptoms started when she fell while jogging, might fit neatly into this category.
Within the next 10 years, Grushka believes, “our understanding of the problems in the mouth are going to explode. It’s going to be a revolution. It’s going to be based on this discovery of how the nerves talk to each other… How if you apply damage to one, you affect the other.”
Hopefully, when Bartoshuk, Grushka, and Kveton publish the results of their study, even patients in Wyoming, where Kat P. lives, will not have to endure the following experience:
My symptoms are: Burning Mouth, sometimes full mouth, but most of the time it is just my tongue . … It feels like I have overdosed on hot salsa and salty Dorito chips . …
I had experienced a really bad cold and bad sinus problems. I was given sulfa drugs. I took a reaction to these so I quit. . . . I probably did have an ear infection since every time I get a cold/sinus problem my ears become involved and I usually get an earache.
After this particular cold it was downhill from there. Doctor after doctor.
Troches, creams, mouthwashes, natural toothpaste, baking soda, yogurt, pills, Mycelex Troche [an anti-fungal], liquid Nystatin, Neurontin (anti-epilepsy), tests for Sjogren’s syndrome, lupus, MS, diabetes, sleep apnea. You name it I’ve been there.
Eight to 10 years ago I started having a foul taste in my mouth. I would sniff or blow my nose and it would start and slowly fade out in a couple of hours. It is somewhat of a tintype taste.
The doctors tried things for a short time or had me read a book. Then they would tire of me and refer me to another doctor such as ear, nose, throat, or a dermatologist. Just a professional brushoff.
I’m a female, age 47. I had a hysterectomy three years ago come this April 1999 . … I am, as I said above, going crazy. It is constant. It cannot be seen or found in blood tests or X-rays. I feel like I am a hypochondriac. In the last two years I have slowed down on my exercise program because of the depression. I am on Zoloft.
With Bartoshuk’s permission, I took the liberty of giving Bartoshuk’s phone number to Kat P. If Kat gives Bartoshuk a call, she might feel like Yvonne, who’s now cured of her burning mouth. “Every day,” she told me, “I say a little prayer for that woman for what she’s done.”