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Bill Briggs writes: When Nadia Cwiach speaks, no puffs of smoke emerge with her words. No plumes of flame or popping red embers streak from her lips. Just the faint haze of a Big Apple accent.
But inside Cwiach’s mouth, it’s pure hell: a fiery, scalding sensation coats her tongue, cheeks and day and night. For two years and four months, Cwiach says her entire oral cavity has felt a little like she’s munching on a blazing book of matches while swigging a nice toasty glass of gasoline.
“There are just days where you’re really miserable,” says Cwiach, meaning that some Mondays may feel hotter in there than some Tuesdays. But pretty much every day, it’s a scorcher in there.
Maybe the only soothing thing about Cwiach’s condition is that it has, according to the Mayo Clinic, an official name: Burning Mouth Syndrome. While the Mayo folks are on the case, they can’t figure out the cure – much less the source for the constant internal inferno. By some estimates, it affects about 4 percent of U.S. adults, typically women 50 and older.
According to MayoClinic.com, sufferers are afflicted with a heated, chronic pain that coats their tongue, gums, lips, cheeks, and the roof of their mouth. For some people, the sting increases as the day grows longer. The “primary cause,” the clinic adds, “isn’t known.”
Cwiach, 64, has no family history of the symptoms and received her diagnosis after her doctor, a gastroenterologist, used blood tests and a battery of other exams to rule out every other possible disease, bug or virus.
“They think it’s possibly hormonal, and it strikes mostly postmenopausal women,” said Cwiach, who lives in Stamford, Conn. “So after hearing that, I asked: is there really anything else that women (my age) need?”
From blazing mouths, sarcasm flows.
You’re probably thinking – what about ice cubes or popsicles? She’s tried them. Sucking on those helps “just for that moment.” She’s switched to additive-free toothpastes. She has swished a medicine cabinet full of mouth washes to try to douse the fire. She’s tried eating bland foods. She’s tried eating spicy foods.
“It’s all the same,” she says.
She’s theorized that maybe stress is a factor. But she recently had some tense days at work and the condition didn’t seem to burn any hotter. So Cwiach doesn’t believe her environment is fueling the problem. And her sleeping has not been interrupted.
“When it’s just there and burning, you almost get used to it. You forget about it.”
She’s learned two other bizarre elements about the syndrome. For many people, she says, the condition lasts for about seven years.
And in the final stage, apparently, “it leaves you as abruptly as it comes.”
So she’s looking at 2015, and hoping that’s the coolest year of her life.
Have you ever had a mysterious illness? Tell us about it in the comments.
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My girlfriend gets sick to her stomach every morning and throws up almost every morning has for a year now. We thought it was the migraines she was having as well causing the sickness but the doc put her on meds that stopped the migraines and the morning sickness just keeps happening. If anyone knows why please do share! it's really affecting her quality of life since everymorning is miserable and she hasn't been to work on time in a month, luckily she has fmla because of the migraines so they can't fire her. still It's even hurting our relationship as I lose patience with her and try to gripe her out of the bed by complaining about how the time she is missing is hurting both of us financially. Seriously if theres a doc out there reading this please help!
Has she been tested for food allergies? I had the same problem and it was caused by an allergy to yeast.
Burning mouth syndrome (BMS) is characterized by a burning sensation in the mouth and/or tongue. It is often accompanied by dry mouth and/or a bitter or metallic taste in the mouth. In some cases, this condition may be associated with vitamin B12 deficiency, oral yeast infection (candida albicans), or irritation from dentures (dental prosthetics). The burning sensation may be aggravated by hot, spicy foods but is not caused by them.
i contracted bms after two weeks of taking effexor..an antidepressant. i had no idea what was going on until i went to an oral surgeon. ive had it now for 3 years and it makes you absolutely miserable. i catch myself brushing my teeth nearly every hour and the only tooth paste that doesnt make it worse is arm and hammer. i was told i would probably have it for life. i am extremely allergic to a lot of medications so yes i think it could be allergy related.
the yeast allergy is a good thought and makes sense we'll have to check on that. Thanks alot CASS!
any other ideas out there?
Has her regular Dr. checked for Bulimic tendencies?
I know what bulimia is and thats not the problem. heck she's closer to anorexic she rarely eats any wihtin hours before bed just so theres less coming up in the morning and barely eats enough through the day. I hounded her about the possibility that she doesn't eat enough causing it got her to eat normal portions regularly for a couple months but that didn't help.
Her tongue looks like a problem I had (but I was in my twenties). The pain was so terrible that I couldn't eat, or even drink water. I gargled with aloe juice, and it healed in a few days. It was very similar to Vesicular Stomatitis in horses, and the aloe worked for them also! I hope that she can try the aloe, and it provides her relief. I found the aloe at the pharmacy department in Wal-Mart. GOD bless and good luck!
Laced713:
I had very similar issues, except I wasn't throwing up - just very nauseated and couldn't move from a laying position. Migraines kept me in the dark literally for 3 weeks at a time. Etc, etc, etc. Finally found out from a Neurologist that the meds my Dr gave me were stopping the migraines but causing more to happen later on. Then I found out my hormones were just plain whacked out. Had a hysterectomy (already have 2 kids) and it has changed my life! Those migraines no longer keep me sick and I feel like I did years ago before the problems started!
A lot of things that seems abnormal are caused by stress. I am a 32 year old woman and I thought I was having seizures and/or a stroke and it turned out to be stress! Now that I know what caused it I can control it. The doctor I saw told me that stress can cause you to have serious symptoms, even has cause people to have paralysis!
Check it out and watch the stress levels! You can be consumed by stress even if you don't realize it.
Nancy.Botwin:
Do you mind if I ask what made you think you were perhaps having seizures? I ask because for the past year and a half I've been suffering with uncontrolled movement. I'm up late tonight because I can't lie still in the bed. I've been to a neurolgist and a specialist but they haven't found a reason as to why this is happening so they just tell me I have a "tic disorder". My mom thinks it's possibly stress related. Just wondering if your story has any similarity.
I've had burning mouth syndrome for about a year. I'm 47, diabetic and have chemical allergies. At first only the tip of my tongue was tingling and irritated and over the course of time the whole mouth started to become affected. Now the burning in my mouth has become very painful and I feel like I scalded the whole inside of my mouth with some very hot liquid. My symptoms include pain on the tongue, lips, teeth and gums, cheeks, bottom of the mouth and roof of the mouth and down the throat. There is evidence of blistering, swelling and numbness if the burning gets really bad. The pain and swelling makes it hard to chew, swallow and talk and no amount of cold, warm or hot food or drink changes or helps the pain, in fact some foods or drink make it seem worse. I do believe it is allergy related because the burning is more intense if other allergy symptoms are present, but the burning has never gone away.
Mine was a new allergy to toothpastes. So I switched to a Sodium Lauryl Sulfate FREE toothpaste and it went away. I posted on this below... all those whiteners and stuff made me begin to react...out of nowhere. Try a natural toothpaste without SLS.
Hi, about a year ago I had similar burning of mouth. My Dr. said I had broncitis and I rinsed with a mix of three meds. It took a while but it did go away. . I couldn't eat nor drink even water. It was torture for sure.
I've had "burning tongue" since I was about 5 years old. I have read that it sometimes can be due to a vitamin B deficiency.
I got the same thing in my mouth the burning,redness,small sores, all over my mouth,gums and tongue. I couldn't eat, it hurt terribly then by trial and error I found out it was the antidepressants Zoloft and Celexa, once I stopped taking them it all went away Thank God. It was awful.
i had pityariasis rosea, aka christmas tree disease, apparently 1 in 5 million people get it, unknown why, and 6 months or so later its gone... its red bumps on your torso, itches just a little bit, but otherwise doesn't do anything to ya.
i had pityariasis rosea, too - years ago.... never heard of anyone else who ever had it.
I'm a 39yo male and have had this for two years now. I have not had it checked for fear of embarrassment. I am from Wisconsin but right now live in China since the end of July.
You should all go to a specialist and get checked for head and neck cancer. ANY changes in tase, sensation, ability to taste or swallow, ear pain, and associated neck pain could easily be what is classified as "Head or Neck Cancer"
We see a lot of patients in our practice with this very condition. It is not associated with any physical findings. We spend a lot of time with these patients assuring them that they do not have an infection, are not at risk for developing head and neck cancer/oral cancer, or any such thing. A majority of patients admit to some stress (it could be a major life event or cumulative stress). We never minimize the importance of stress and address it in our discussion. I think the most important role of the health care provider in these patients is to reassure patients that they have nothing physically wrong, but more importantly be disciplined in ruling out any other underlying condition.
It is important to note that patients with Burning Mouth Syndrome will generally not present with any physically obvious pathological findings. If you have open sores or lesions in your mouth, you probably do not have BMS.
While there is no known cure (baffling as it is), many patients do report that their symptoms eventually go away (weeks, months, years in some cases).
I had a gastic by pass 3 yrs ago, about 1 1/2 years ago I began having a burning tongue. My surgeon said it was a symptom of to little vitamin B and D. So now I give myself a Vit B-12 shot monthly and double the recommended dose of Vit D. No more burning tongue. But if I skip either medication it comes right back.
Good answer, makes sense. It always helps to have someone with clinical experience reply.
Oh my goodness. all I can say is i feel so sorry for the sufferers of this disorder. This sounds just awful!
I had suffered from a burning mouth also, the same with tongue, gums, throat, etc. I was able to trace my problem to a sudden type of allergic reaction to toothpaste. All these toothpastes that have whiteners and other stuff over time caused me to begin to react badly.
I now use a Sodium Lauryl Sulfate FREE toothpaste and the burning is gone. Do a trial with a natural ingredient toothpaste and see if it helps you too. I inititially used plain baking soda because I was in such pain, and it worked, so I bought Tom's toothpaste at Whole Foods. Maybe you will be helped also...
Oh, I never had any sores or anything the dentist or doctor could see, so it was just my burning sensation.
I had this burning mouth syndrome about 25 years ago. What was strange was that both my mother and my sister got it shortly after I did; not my toddler daughter whom I kissed exponentially more than the other two and not any other member of our large extended family. It lasted a few weeks for each of us. An ice cold beer was the only relief my sister and I found. So we did what we could.
The University of Washington Medical Center (Dental Division) in Seattle treats Burning Mouth Syndrome with a combination of medications. It does not cure it, but reduces the symptoms dramatically.
The University of Washington Medical Center (Dental Division) treats Burning Mouth Symdrome. They treat around 85 patients a year and do it with a combination of medications. It is not a cure, but rather it reduces the symptoms dramatically. My spouse had it and the treatments works.
I got burning mouth syndrome right after my chemotherapy from breast cancer. It was awful. Worse than the chemo ever thought of being. I am positive it is hormonal.My doctors tried everything they could think of and finally realized that it was definitely hormonal. My doctor treated it with an anti-depressant and it went away completely. Every time I tried going off the anti-depressant it came right back. Chemotherapy takes lots of estrogen out of your body. Also, my breast cancer fed on estrogen so I was taking tamoxifen which also takes estrogen out of your body. Breast cancer patients are treated with anti-depressants for hot flashes because we cannot take estrogen. Thankfully, they served a dual purpose for me and took away the burning mouth as well. I hope this information will help someone else. I honestly didn't feel like I could live with that burning in my mouth full time! I love my doctor for figuring this out for me!
My mother has diabetes, on dialysis, has rheumatide arthritis, and other health conditions, and has been suffering from a sore/burning mouth for the last week & 1/2. She went to a rheumatide arthritis doctor and he prescribed her methotrexate which she is to take 25MG 3 times per day every Saturday (just on Saturdays). She then became sick to her stomach, vomited and mouth became so sore she could barely eat anything, and the sores in the mouth started to bleed. This morning she went to a provider and found out it is most likely due to an allergic reaction to methotrexate. So the provider told her to quit taking the methotrexate and prescribed her nystatin. She went home and rinsed her mouth with the nystatin and also swallowed a little bit as her throat was sore also. As of tonight she is feeling alot better, hopefully it continues. If anyone of you are taking methotrexate, and are having this symptoms please get information regarding what medicines should not be taken with it & side affects. I Will try to update you all on her progress if this site is still available. ***just a little note: I would like to say "Hi" to Hedwig, if it is the Hedwig I know.
I had a problem with a burning tongue for months after I was prescribed an Advair inhaler for a lung infection. I took two courses of an antifungal medication (had to suck on these slightly minty chalk tablets 6 times/day) to treat thrush, but my tongue was never coated and the medicine didn't help. My general physician sent me to a Ear/Nose/Throat specialist after the first round of anti-fungal tablets didn't work. He gave me the 2nd 2 week course of that same medicine, then when that didn't work she ort of "gave up" and logged it up to Burning Tongue Syndrome, offering no solutions. The burning was only only the top of my tongue and was intermittent. I thought it had something to do with eating sugar b/c it seemed worse at those times. It would come and go several times daily, and sucking ice cubes offered some momentary relief. By happenstance I found that chewing Trident White spearmint gum would offer relief and make the burning stop, so I self medicated as-needed with the gum. It persisted for almost a year, on and off, then I moved to another state and the burning went away. I came back to the city where the problem started, and within a week the burning came back, though not as frequently. The gum helped again. Now the problem has all but gone away again, at least for the time being. The only thing that worked was the spearmint gum, but it seems that there is some environmental factor that contributes in my case. Luckily the burning never spread beyond my my tongue, and was manageable with the Trident. I'm just glad that it isn't a daily problem anymore and on the rare occasions I feel a little burn, I can nip it in the bud. My deepest wishes of fortitude and luck to those who have a more extensive and longer-term issue with this horrible discomfort. Try Trident White spearmint, just in case it works for others like it did for me. And no, I do not have any affiliation with Trident; I just know it worked for me when nothing else did.
have been having this sensation of burning tongue for the past couple weeks. went to dr. and they say it can only be either, hormonal, medications, or vit b deficiancy. scary to hear this can last for years
I had this Burning Mouth Syndrome for about 5 years until I had to start taking Klonopin at 2mg a day for another condition. The burning STOPPED. I never thought about it again until a couple of years later when I was being weaned slowly off of the Klonopin. I hit somewhere around .250 and the Burning Mouth returned. My doctor agreed to keep me on the Clonazepam to prevent the HELL that the burning tongue, etc. really is. Someone needs to seriously investigate and research why the Klonopin eliminated my symptoms entirely. I take it to this day strictly to prevent the horrors of my mouth in flames all the time.
My mother had this for nearly a year once, and a few decades later I suffered through it as well. Luckily my father, a dentist, finally recalled hearing something about it from an elderly professor in dental school. The solution was to swish mouth out with a solution of brewer's or baker's yeast and water, repeatedly throughout the day for a few days.
Some measure of relief was afforded instantaneously, complete healing within a week.
As far as he could recall it had something to do with hormone levels, the immune system and exposure to chemicals, especially antibiotics or Sodium Laurel Sulfate.
I just used the yeast in the baker's yeast in the little jar from the grocery store. Worth a try!
Best of luck to all who suffer from this. Hope that you feel better soon!
2 years ago I got a pretty heavy cold; sinus congestion, coughing, stuffy nose. When it finally broke, my sense of smell and taste were gone. I could not smell or taste even the strongest of things. One night I woke up and thought I saw smoke, but cold not smell it. I could not find my gallses for a while, it was pretty terrible. Six months later it all came back over a couple days. I feel sorry for the lady with the hot mouth. Good luck!
I had a similar problem during chemo for breast cancer. I wonder if it could be an allergic reaction to something. Even though I had meds for allergic reaction, my tongue, mouth and throat would swell a bit and my whole tongue felt like I'd burned it pretty good with hot food or drink, even though that was not the case. I don't know...maybe an idea.
General Discussion
Porphyria cutanea tarda (PCT) is a type of porphyria in which affected individuals are sensitive to sunlight. Exposed skin shows abnormalities that range from slight fragility of the skin to persistent scarring and disfiguration. Due to fragility of the skin, minor trauma may induce blister formation. Areas of increased and decreased pigment content may be noted on the skin. Blistering of light exposed skin and increased hair growth are also characteristic.
PCT is caused by a deficiency of the uroporphyrinogen decarboxylase (URO-D) enzyme in the liver. The disorder can be acquired or can be caused by an inherited gene mutation in the UROD gene. The inherited form of PCT is also called familial PCT and follows autosomal dominant inheritance. Many individuals with a UROD gene mutation never experience symptoms of the disease.
PCT becomes active and causes symptoms when triggered by an environmental factor that affects liver cells (hepatocytes). These environmental factors include alcohol, estrogens, hepatitis C, and human immunodeficiency viruses (HIV). Individuals who have disorders that lead to excess iron in tissues such as hemochromatosis also have an increased risk of developing PCT. It is usually necessary for an environmental trigger to be present to cause symptoms of either the acquired or inherited type of PCT.
Drug overdosage to the liver