... without treatment? I had a benign cyst removed from my throat 7 years ago and this triggered my burning tongue syndrome. What hell! I've been to countless dentists, ENTS, oral surgeons, GPs and NONE of them know what to do. I've had my teeth ground-down, capped and night guarded, all to no avail. This site helps me feel I'm not so alone and suffering in silence. I can't stand to think I will live with this the rest of my life. Is it possible for it to just dissappear and resolve on its own? Thanks all
Burning Mouth Syndrome - I've had BMS for seven years. Has anyone had this go away on its own?
Question posted by gonzo jen on 5 Sep 2013
Last updated on 5 May 2024
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
143 Answers Page 4
Summerson40
12 June 2019
So, it turns out I am very anemic and zinc deficient! Both can cause burning mouth syndrome and I am noticing improvement after iron and zinc supplements. I had to tell my doc to test me after I learned about these causes on the Internet-- a little irritated I wasn't tested for these as a routine procedure months ago. I am also drinking diluted apple cider vinegar each morning. When I feel the tongue sores returning, I rinse w a more concentrated ACV mix and it holds it at bay. Now I've started adding more foods back in my diet, eating out again, and talking more. I still get small sores, but it's not nearly as bad as before. Hoping things continue to improve so I don't have to quit my teaching job!
sniatkewi
9 May 2019
I've had this for over a year now. It seems to get worse as the day goes on and it is most painful at night. I take clonazepam for sleep at night , so that could be relieving my pain so it's not so bad in the morning. I don't want to take the clonazepam during the day because it makes me too tired.
Betty E
9 May 2019
Mine gets worse at night too and others say it does for them.
DianeMoran
9 May 2019
Hi, I have been taking clonozopan for 3 years now, have just had my dosage increased to .75 mg per day. seems to be helping somewhat. I have been told to try some XyliMelts for Dry Mouth. these can be obtained on line and are new to the market (apparently) I have some and they stick to your gums and give some relief. Worth a try. The lymphatic massage seems to help as well.
maxhampton
9 May 2019
I'm so glad I found this group,I've had it since mid Feb 2019 and finally figured out that BMS is what I have..its been depressing and made me moody reluctant to talk because its uncomfortable even though I don't have extreme discomfort its relentless, getting worse in the afternoons. I thought at first I had damaged tip of my tongue from teeth grinding at night and thrusting it against my lower front teeth, my lips also felt burnt but dermatologist couldn't find anything wrong ..dentist couldn't find anything wrong, smoothed out top of my lower teeth to help ..I decided to buy a store bought mouth guard at night which I used on my bottom teeth to protect tip of tongue..my lower gums started bothering me which I thought was due to ill fitting night guard..meanwhile I was rinsing my mouth with baking powder..then tried Manuka honey..then salt in warm water..taking a lot of Advil to try and reduce what I thought was inflammation ...
NOTHING WORKED..finally I discovered Burning Mouth Syndrome online... in reading about it they mention acid reflux... well I know I have that and Ive been taking omeprazole for 7 years everyday because I developed Barrets Esophagus from it... here is the kicker... turns out a side effect for some people on Omeprazole is Burning Mouth Syndrome..I stopped taking omeprazole 3 days ago and started on 600mg a day of Alpha Lipoic Acid and extra B-12... I think its actually starting to feel a little better... I will keep you posted
wacky120
8 May 2019
I also found that I had become sensitive to certain things, caffeine and tomatoes. Taken those out of my diet and I have been ok since. I did have a severe case of oral thrush that was caused by large doses of antibiotics after I had a burst appendix. When I had the thrush I think it had travelled down to my Stomach too as I used to get a lot of pain and burning in the middle of my chest. I also think I might have acid reflux so use Gaviscon to help with that. Treated the thrush with prescribed medication, then over the counter meds and Live yoghurt. I am so relieved to be rid of the burning mouth now. I hope you can get better too.
Molly446
8 May 2019
I’ve had this for years. Possibly 10 years. Been down the teeth route, food allergies and eventually realised it was my moisturiser. It’s also aggravated by cornstarch for me. Cornstarch is hidden in so much. The latest I found as ‘glue’ in PG Tips Tea bags. In frozen veg, peas, stops them from sticking together and a lot of this isn’t on the packaging/ingredients.
Most days it’s manageable, annoying but OK. Then four days ago it was awful. So I thought right I am only going to eat stuff that is not mucked about. No processed foods, no tea bags, no dressings, basic meats, cooked fresh veg and I stopped all toiletries products.
Two days on and I am fine. Feeling wonderful. Been out for a big celebratory lunch with my W.I. eaten all sorts, cake, dressings etc, so for me I think it’s driven by toiletries, especially face related products. Did use a deodorant today, so that’s OK. Washed myself with a very simple shower gel, used a sponge and tried to keep it off my hands, washed my hands three times with cold water after my shower until they felt rid of products.
Going to give myself a few days of feeling good and then reintroduce toiletries one at a time and see how I get on.
Molly446
12 June 2019
A eureka moment in the past few days.
My issue is I believe mainly Tea Bags. I have written to several tea companies and they confirm their bags are made from a cornstarch product, not the glue holding them together.
So, no tea bags, back using simple shower gel, ate some crisps that normally I felt I couldn’t, all amazingly good. Eaten out a couple of times, fine, had fish and chips take away, fine. Feel liberated as normally get anxious about eating out.
Molly446
14 July 2019
So a few interesting things, I answered the survey a while back and didn’t know about geographic tongue, having searched about it I decided it was likely I had the beginnings of it in the form of a hard white lump towards the back of my tongue. I have been taking multiple vitamins B, but swapped to vitamin B12 as geographic tongue can be a deficiency of vitamin B12, about a week on and the white lump is no more, and what’s more I seem to be better with the woolly mouth and no more tiny sores in the mouth.
Def have an issue with foods with raising agents, kitkat biscuits, biscuits in general, and tea bag tea still a problem. But on the whole I am much improved.
Molly446
21 Nov 2019
Moving on I was recently given a potential diagnosis of orafacial Granulomatous. what a revelation. So many questions answered. So much physical relief to my mouth.
The problem is based on cinnamon, of which I ate a fair bit, spices and Benzoate.
Having removed those offending items from my daily life my mouth and tongue are amazing. Guys hospital UK has lots of information.
It’s been hard in some areas, toiletries are so hard to find, as well as Benzoate free I wanted SLS free too.
Still early days but the immediate relief has been fantastic. Occasionally I’m still getting it wrong but I am finding it easier to work out what those things might be.
I have been looking for an answer since 2012.
Also joined a few Facebook groups on mouth and facial issues and searched and searched their posts for information too.
Summerson40
4 May 2019
A few more questions for willing participants:
1) Do you find it hard to eat with your burning mouth? (I find that my throat is so dry and inflamed, it hurts to eat and I prefer soft, slippery foods.)
2) Do you find it hard to talk with your burning mouth? (I find myself not saying as much as I want to bc it gets dry and burns more. This is why I may have to quit teaching, bc 6 hours of talking a day is miserable.)
DianeMoran
9 May 2019
Do you find it hard to eat with your burning mouth? (I find that my throat is so dry and inflamed, it hurts to eat and I prefer soft, slippery foods.) -A= no, actually eating is the only thing that alleviates the pain?
2) Do you find it hard to talk with your burning mouth? (I find myself not saying as much as I want to bc it gets dry and burns more. This is why I may have to quit teaching, bc 6 hours of talking a day is miserable.) A= no - not hard to talk, but am becoming more unsociable because of the BMS
Summerson40
4 May 2019
Thank you to everyone who has responded and shared their stories-- after reading every single person's post, I made a list of treatments that worked for a number of people. Hope it saves some people some time! (I only really listed the more natural remedies since I am extremely sensitive to medicine.)
Before I get into my story, I would love if anyone can answer these questions for me:
1) Does your burning tongue "come and go" like flare ups?
2) Do you have a white coating on your tongue?
3) Does your tongue get red?
4) Does anyone get geographic tongue?
5) Did doctors ever mistake your burning tongue for thrush?
6) Has anyone ever been tested for Lyme to see if this is a symptom?
I have had a burning mouth on/off for the last 5 months. It has kept me out of work for weeks at a time, and now I think I am going to have to quit my job as a teacher because I just can't stand the pain of talking for 6 hours a day. I am on my 3rd "episode" of mouth burning and doctors are still stumped. Here is my history:
* Dec: Got white coated tongue, burning mouth, geographic tongue (red lesions on tongue) 5 days after I started a steroid inhaler. Docs assumed it was thrush, so treated it with Nystatin. It seemed to clear after 2 weeks, but my tongue still continued to tingle.
* Jan: Ended up in hospital with pneumonia. Took oral steriods and antibiotics. A week later, the burning tongue, white coat, geographic tongue returned. This time Nystatin didn't work, so tried 100 mg of Diflucan. After a week, that wasn't working, so I went to an ENT and he upped it to 200mg, and after a total of 10 days, things started to turn the corner improve. My tongue slowly died back down to a level 1-2 pain.
* In the meantime, eating since Dec is still unpleasant-- throat is dry and rough. I have to take small bites and take sips of water before I swallow.
* I went back to teaching for about 6 weeks and things got progressively better. Then, out of nowhere, the geographic tongue started to come back, then the white tongue, then the mouth pain. (When I say mouth pain, I mean my palate, gums, tongue, back of throat, etc.) At this point, I went to an infectious disease doctor and he started me on 200mg of Diflucan again. After 2 weeks, no difference-- just getting worse. And I just got a phone call from him today that there is no yeast on my tongue.
* In the meantime, I have been garling 3x a day with diluted apple cider vinegar, cooking my meals in coconut oil, rubbing a TB of coconut oil on my tongue and palate, and swishing/swallowing saccaromyces boulardii (a good yeast probiotic) each night. All of these had research backing their success against thrush, so I just did them all. Things at least haven't gotten worse and have seemed to improve some.
* Another possibility: I was just diagnosed with Alpha Gal, a tick borne illness that makes you allergic to red meat and milk (among other things) and I'm wondering if this could be the cause?
Anyway, seems like if it's not yeast, then the search continues. Here is the list I promised of some solutions that worked for some folks. (I am not a medical professional-- just simply sharing a compiled list!) :
* kombucha-- start slowly with 1/2 a bottle and work up to a full bottle for 1-2 weeks
* drink kefir
* B 12
* R version of Alpha Lipoic Acid-- 1,600mg
* Oregano Oil-- few drops in a few in. of water for a few weeks
* Capsacin (or hot sauce)-- 4 x day
* Toothpaste: EcoDenta Refreshing Oral Care Foam with Mint Oil
Baking Soda toothpaste
* Lymphatic body massage
* Night guard (or even day guard!)
* clonazepam-- disintegrating or liquid
* CBD oil-- spray and other forms
* Check hormone levels
* laser therapy (with head and neck doctor)
* tape mouth closed at night to prevent mouth breathing
* Silent Acid Reflux-- try Pepcid to see if it helps
Blessings of healing to all-- let's continue to help support one another through this painful ailment!
Betty E
4 May 2019
1) Does your burning tongue "come and go" like flare ups?
Yes Sometimes days, weeks or even months apart.
2) Do you have a white coating on your tongue?
Yes
3) Does your tongue get red?
Yes, especially on the sides.
4) Does anyone get geographic tongue?
Yes. Deep grooves on top and sides of tongue.
5) Did doctors ever mistake your burning tongue for thrush?
Yes. Dentist did. It started right after dental work and mostly affects the teeth involved.
6) Has anyone ever been tested for Lyme to see if this is a symptom?
Yes. I was tested for Lyme but not concerning BMS. It was because of joint pain but was negative.
I really think this is related to extensive dental work and/or possibly thrush, or maybe thrush just complicates it. I'm going to post again in the form of a question because I realized I left out some critical information.
Summerson40
4 May 2019
Thank you so much, Betty, for responding! That's helpful to know that a lot of your symptoms are similar to mine. I actually did not have any dental work during the first 2 episodes-- I think they were brought on by all the inhalers I was on (I am naturally sensitive to medicine, and doctors put me on a lot of inhalers in Dec thinking I had asthma, but I really had pneumonia.) However, I did have a very vigorous dental cleaning 2 days before this most recent episode (I've been off inhalers for 3 months)-- so maybe stirred up some bacteria in my mouth??
You mentioned you thought there was a thrush connection. Did you find thrush treatments work for you? I was convinced mine was recurrent thrush, but my most recent test showed no yeast and Diflucan didn't seem to be working.
DianeMoran
9 May 2019
1) Does your burning tongue "come and go" like flare ups? YES - especially with any kind of stress (although the doctor says this is unlikely to be the cause of any flare ups)
2) Do you have a white coating on your tongue? yes
3) Does your tongue get red? yes - and sore- sometimes with red sores - like ulcers - but they are not mouth ulcers.
4) Does anyone get geographic tongue? no
5) Did doctors ever mistake your burning tongue for thrush? no, most doctors told me it was all in my mind until I found a specialist who treats the condition
6) Has anyone ever been tested for Lyme to see if this is a symptom? no
Molly446
12 June 2019
1) Does your burning tongue "come and go" like flare ups?
Yes, in the morning it’s not there, by lunchtime it’s noticeable, by 6_9pm it’s sore, often miserable sore
2) Do you have a white coating on your tongue?
Get a hard white lump in middle of tongue when at worst, docs and dentists don’t have an answer , takes several days to go,
3) Does your tongue get red?
Don’t think so, get sore patches,
4) Does anyone get geographic tongue?
Just googled this, the white lump I get maybe this on a lot smaller scale, one of the pics I saw looked quite like my tongue on occasions but I never suffer it all over the tongue
5) Did doctors ever mistake your burning tongue for thrush?
No
6) Has anyone ever been tested, Lyme
No
Inactive
3 May 2019
Thank you to everyone who has responded and shared their stories-- after reading every single person's post, I made a list of treatments that worked for a number of people. Hope it saves some people some time! (I only really listed the more natural remedies since I am extremely sensitive to medicine.)
Before I get into my story, I would love if anyone can answer these questions for me:
1) Does your burning tongue "come and go" like flare ups?
2) Do you have a white coating on your tongue?
3) Does your tongue get red?
4) Does anyone get geographic tongue?
5) Did doctors ever mistake your burning tongue for thrush?
I have had a burning mouth on/off for the last 5 months. It has kept me out of work for weeks at a time, and now I think I am going to have to quit my job as a teacher because I just can't stand the pain of talking for 6 hours a day. I am on my 3rd "episdode" of mouth burning and doctors are still stumped. Here is my history:
* Dec: Got white coated tongue, burning mouth, geographic tongue (red lesions on tongue) 5 days after I started a steroid inhaler. Docs assumed it was thrush, so treated it with Nystatin. It seemed to clear after 2 weeks, but my tongue still continued to tingle.
* Jan: Ended up in hospital with pneumonia. Took oral steriods and antibiotics. A week later, the burning tongue, white coat, geographic tongue returned. This time Nystatin didn't work, so tried 100 mg of Diflucan. After a week, that wasn't working, so I went to an ENT and he upped it to 200mg, and after a total of 10 days, things started to turn the corner improve. My tongue slowly died back down to a level 1-2 pain.
* In the meantime, eating since Dec is still unpleasant-- throat is dry and rough. I have to take small bites and take sips of water before I swallow.
* I went back to teaching for about 6 weeks and things got progressively better. Then, out of nowhere, the geographic tongue started to come back, then the white tongue, then the mouth pain. (When I say mouth pain, I mean my palate, gums, tongue, back of throat, etc.) At this point, I went to an infectious disease doctor and he started me on 200mg of Diflucan again. After 2 weeks, no difference-- just getting worse. And I just got a phone call from him today that there is no yeast on my tongue.
* In the meantime, I have been garling 3x a day with diluted apple cider vinegar, cooking my meals in coconut oil, rubbing a TB of coconut oil on my tongue and palate, and swishing/swallowing saccaromyces boulardii (a good yeast probiotic) each night. All of these had research backing their success against thrush, so I just did them all. Things at least haven't gotten worse and have seemed to improve some.
* Another possibility: I was just diagnosed with Alpha Gal, a tick borne illness that makes you allergic to red meat and milk (among other things) and I'm wondering if this could be the cause?
Anyway, seems like if it's not yeast, then the search continues. Here is the list I promised of some solutions that worked for some folks. (I am not a medical professional-- just simply sharing a compiled list!) :
* kombucha-- start slowly with 1/2 a bottle and work up to a full bottle for 1-2 weeks
* drink kefir
* B 12
* R version of Alpha Lipoic Acid-- 1,600mg
* Oregano Oil-- few drops in a few in. of water for a few weeks
* Capsacin (or hot sauce)-- 4 x day
* Toothpaste: EcoDenta Refreshing Oral Care Foam with Mint Oil
Baking Soda toothpaste
* Lymphatic body massage
* Night guard (or even day guard!)
* clonazepam-- disintegrating or liquid
* CBD oil-- spray and other forms
* Check hormone levels
* laser therapy (with head and neck doctor)
* tape mouth closed at night to prevent mouth breathing
* Silent Acid Reflux-- try Pepcid to see if it helps
Blessings of healing to all-- let's continue to help support one another through this painful ailment!
Sarah
Fadoush
3 March 2019
2 weeks a go woke up with sore side of tounge and burning that lasted a day or two. Ever since I’ve been noticing burning sensation that travels from side of tongue to tip to the roof of mouth. Would this be BMS? I’m scared it would be ? I’d say burning today is maybe 2/10 in severity ! How sever should burning be ? Thanks
shania44
3 March 2019
Yes it could be. I've had it now for 11 years. It starts of gradually. Do you have a metallic taste in your mouth? I hope you don't have this horrible disease. My pain level stays at a 10. The Only relief I get is if I'm asleep. NO medication works. Use ice chips. It will help. Shania44
Annie from england
9 Dec 2019
Chewing gum helps.
DianeMoran
22 Feb 2019
hi, I have had BMS for almost 8 years now. Currently being treated by specialist with .5mg of clonozopan per day. Seems to be working - BUT VERY VERY SLOWLY. Ive been on it for 2 years. Another trick the doctor said to try was using a few drops of tabasco sauce in a small amount water as a mouth wash twice a day. It helps a little - be interested to hear if anyone else has any luck with this.
mwiggins1009
9 Feb 2019
I take 75 mg Nucynta 3 times per day and Topamax 50 mg once nightly
mwiggins1009
9 Feb 2019
I have had BMS for 6 years, diagnosed by the Mayo Clinic. I have been through all of the hell that everyone else with this awful condition has been through. I saw countless doctors who put me on countless medications that didn’t work. I truly wanted to die rather than live like this.
I moved to Loveland, Colorado due to my husband’s job and established care with a new doctor who was very well versed in BMS. I can tell you that I am currently out of pain-something I thought would never happen. I want to share my medications with everyone so more people can get relief. My doctor put me on Nucynta (an opioid for nerve pain) and Topamax, a medication typically used for migraines. The combination works! Please ask your doctor for it!!!
shania44
9 Feb 2019
How many do you take a day and what MG. ??? Please. I will call my DR. on Monday. I've been fighting this horrible disease going into my 11th year.
Manor girl
6 July 2019
Are you still taking these meds? Has anyone else tried them?
jbrownback
4 Feb 2019
I have had BMS for about 6 years. Mine does go away occasionally, but it always comes back. Sometimes it will got away for several months or just a few days. I too have been to many doctors, with no answers or success.
Demonia
4 Feb 2019
Please, please, please get Braggs Raw Apple Cider Vinegar now! I know how you feel... I had it bad until one night I put Braggs Raw Apple Cider Vinegar on my chips and suddenly it ceased to a very calmer level... now I always have a litre gym bottle beside me and I put one cupful of braggs vinegar in the litre bottle and I drink about 2 bottles per day, the burning mouth syndrome has almost gone... I've always had it since a child but it didn't bother me until it got intolerable a few years ago and now it's back to a manageable level... get the vinegar from Amazon or a health food store... this one thing will help so much!
wacky120
2 Feb 2019
I am just repeating what I said earlier, so apologies if you have already seen that. I have stopped mine by checking to see if anything in my diet made it worse or better. I found that it was really bad when I had tomatoes and caffiene. I took these out of my diet and my burning mouth has gone. I think mine might have been caused by an illness that I had too, I had a burst appendix and noticed it after that. I also found that I am very sensitive to Iodine that they use in CT scanning and caused me to get thrush in my mouth. That was treated with live natural yoghurt to prevent the burning mouth returning. I would say check what you are eating to see if you have become sensitive to something.
sandy75170
1 Feb 2019
I was affected by burning mouth syndrome when I was 21. I dealt with BMS for 2 grueling years. I am 23 now. I thought I would have this condition forever, and I was hopeless until I visited a neurologist. He prescribed me Cymbalta, but my insurance did not cover that medication so I have the generic version of the medication. Before prescribing this medication, he prescribed two other medications that helped me, but the side effects were intolerable. Cymbalta is a lifesaver. I am no longer in pain. I take one 20mg pill a day. I am still in the initial stages of taking the medication, but I hope it continues to work for me, and I hope it works for you too. In addition, I still stay away from salty and spicy foods because it aggravates my tongue. But other than that I am in a much better state of mind than I was when I had burning pain.
With this medication, I do not feel drowsy, and it does not give me intolerable side effects: it does decrease my appetite though. Hopefully, in the future, I do not have to depend on this medication anymore because I hope in the future it goes away in its own. Have a great day.
shania44
8 Feb 2019
How long did it take for the Cymbalta to take affect?
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