I don't care if I have to go to another country for treatment, I'm at wit's end with this burning mouth.
Is there any doctor out there that can treat burning mouth syndrome?
Question posted by Mypurrogative on 10 Aug 2020
Last updated on 4 October 2024 (6 days ago) by Ned32
11 Answers
I had to fly to a different state to see a Specialist who was very knowledgable about BMS.
I went to an OROFACIAL PAIN SPECIALIST (out of State who was excellent). That said there are some ENT's that know about BMS but most I've been to, knew little to nothing. However, Orofacial Pain Specialists are the 'Experts' on this condition if you are seeking a Specialist. I went to 6-9 different Dentists & Dental specialists who ALL told me they had "heard of BMS" but do not treat it. Even my current dentist told me I do not treat BMS - find a Neurologist. I don't live in a large city so options are limited. I drove out of town to larger city to see a Neurologist from "Harvard" and took journal publications on BMS with me to appointment. He flipped through them and told me he has NEVER HEARD OF BMS, and all I needed was a dentist. Additionally he told me "DO NOT make ANY other appointments here unless you have a Neurological disorder!" Talk about your creeps! Ned32
To the person who is going to see someone at the Cleveland Clinic. I went to Johns Hopkins in 2020 and saw every type of doctor on the planet. I then was referred to a neurologist by my family doctor. He was wonderful. He prescribed Carbamazepine 200 mg. tablets, taken twice a day. It really helped me, along with chewing sugarless bubblegum as soon as the burning mouth starts. Good luck to you.
I am just recently diagnosed and have only been suffering for 3 months, but everyone else is saying years? I am not sure how to handle this. I have an ENT appointment at Cleveland Clinic in 4 weeks
I’ve suffered BMS approximately 10 months. Finally had enough! In the far past I’ve had a steroid “burst” or “run” for bronchitis. It’s given over 6 to 7 days. Usually 10 mg prednisone tablets. 1st day you may be prescribed 7 tablets, 2nd day 6 tablets, 3rd day 5 tablets, 4th day 4 etc.
Now as a retired RN with good relationship with primary physician and a very bad back, I was offered a prescription for a steroid run to have in case of painful inflammation of my back.
Thinking of my BMS I asked to try it for this inflammatory condition. I’ve read and continue to learn about living with a body in an inflammatory state. I‘ve come to know about inflammatory and anti inflammatory foods and lifestyles. Good ( kind of fanatical for me) oral care. I have always thought I did well- 6 mo dental cleaning. I did not floss. But there is a whole upper level of self oral care. Will try to shorten this: Dr said yes to steroid run , still 2 days more (so still early intervention)nothing goes in my mouth that burns. Anti inflammatory foods. Orajel kids tooth paste with fluoride. Gentle bubble gum hint of flavor. Absolutely no burning while brushing unlike Crest sensitive or Sensodine(ouch). Plastic bristle toothpicks. (I even lightly brush off the mint) Yes I’ve gone fanatical. Then brush , including tongue , palate sides ,under tongue. Then floss with those plastic handle things. I do it anytime I eat. Tend to eat a bit less. But a Yeh thing. Also vitamin supplements suggested in my reading.
If you’re tired of it…. try it. Still very early for me but zero Burning mouth so far. Will keep you posted.
Hopefully Mexican food and red wine and cerveza in my future.
Kevin Rn
I hope this is effective for you!! I have had BMS for 9 years, and it has been the battle of my life. I’ve tried absolutely everything, too numerous to mention. I was officially diagnosed by Mayo Clinic years ago, but no way to treat it, except mountains (2300mg/day) of Gabapentin. Found a pain clinic here in Colorado who put me on a new nerve pain drug called Nucynta which does not alleviate all the burn, but a big percentage of it.
I have had BMS for 6 years. It mainly affects the tip of my tongue and the left side of my tongue. I feels like I have canker sores, but I don't. My doctor has prescribed gabapentin 300mg -never tried it and amitriptyline 10mg -just today. Not sure if they work yet, as I am someone who doesn't like to take drugs, but the doc says these are commonly prescribed.
I manage it and get relief by combining a 1 to 1 ratio of liquid lidocaine with liquid Benadryl (1/4 cup to 1/4 cup of each in a little plastic container with lid) and swish about 1-2 TBSP every night in my mouth for 3 to 5 minutes then spit it out. I do this at night when the burning is at its worst and that gives me relief before I go to bed at night, which helps me get to sleep. Just do not swallow the mixture because of the liquid lidocaine. Liquid lidocaine is usually carried by pharmacies, but often you need to ask for it behind the counter. I also suck on Cepacol lozenges during the afternoon if it is bothering me then. This helps numb the burning sensation.
I have found very few doctor's who understand this condition. I have a wonderful Nurse Practitioner who has been a God send! Mostly ENT's treat this .Here are a couple of things to consider.. if you take high blood pressure medication, make sure they are not Ace Inhibitors or AR's. They can cause burning mouth. Check if you have silent reflux.. The acids from your stomach can come up into your mouth and cause burning. Most people don't even know they have this. I have switched to a gluten free diet, I take protonix and pepcid for my reflux. I also use clonazepam , 0.5 mg melted on my tongue as needed. I rinse my mouth with water/hydrogen peroxide or water and baking soda... It alleviates the burn. By doing all of these things I have reduced my pain 85%. I hope this helps! If an underlying cause cannot be found, an oral pathologist may be able to help.
I suffered with BMS for over 3 years and have finally found something that worked. Find a VERY GOOD naturopathic doctor. She put me on a gluten free diet and supplements. The drugs are gone and I have my life back. Good luck and I hope this was helpful.
What kind of supplements. Please elaborate
A question, re gluten free diet. Mine started SUDDENLY... OUT IF THE BLUE. Find it hard to believe that I SUDDENLY became gluten intolerant. Did yours start slowly or fast like me. I have had this many years and am not shooting for a cure..just relief. I have a soft upper mouthpiece.Like a bleaching tray... helps a lot. Between that, klonopin 0.5 mg tid, an oral analgesic, from pharmacy and capiscum sugar free candies bought from Albany NY. I manage to get through the day. None a cure, but all bring relief and nice to have them.
She put me on herbs (ginseng and Longan formula also, free and easy wanderer plus - these are golden flower Chinese herbs) and vitamins C, Calcium and Magnesium,D3,and a pancreatic enzyme.
The dosage and types of herbs and vitamins will be determined by your naturopathic doctor. She or he may have other recommendations. My treatment also included acupuncture.
My BMS started out of the blue. I woke up one morning and there it was. I saw over 20 different doctors including the Mayo Clinic. I can not begin to tell you how many different medications I was prescribed. No one ever discussed a gluten free diet that the naturopathic doctor I saw put me on. With the gluten free diet, supplements and acupuncture I have been given my life back. I feel for everyone out there that is struggling with BMS. It is a horrible condition and truly affects the quality of your life.
I have BMS for 5 months already taking 900 mg of gabapentin but nothing help. Can you tell me the name of your neuropathic doctor and where is his office located. I will appreciated.
Thank you.
Hi can you please give the name of your Naturopathic doctor and the location.
I am suffering of BMS for 5 months already and nothing my ENT doctor prescribe me
works I will like to try something else.
I will appreciate your information.
Thank you
I have suffered with BMS for 8 years and tried EVERYTHING I could, slowly going insane. I finally found a doctor who prescribed a new drug called Nusynta, an opioid for nerve pain, and it is life changing. Please ask your doctor for it!
Thank you so much. Finally
a possible idea to help stop the
pain. What type of doctor prescribed an opiate? Where are
you located? This is so encouraging.
I was diagnosed by the Mayo Clinic with a severe case of BMS and put on 2700mg of gabapentin and it didn’t touch the pain. I tried all these drugs mentioned on this thread and hundreds more with no relief. I was suicidal with pain. I moved to Loveland, Colorado & my PCP had a best friend with it so he was well informed. Sent me to pain clinic where they told me to throw out my existing drugs, and put me on Nusynta. I ran to the pharmacy, got the pills, ripped them open and took one. By the time I got home, my pain had gone from an 8 to a 2 in 15 minutes. I cried with relief for 1st time in 8 years. It’s not gone, and never will be, but I have a better quality of life. It’s a brand new drug, so push for it. I’m on 75mg 4 times a day, and a 50mg extended release once a day.
I can’t thank you enough.
Sincerely,
Tony from Cleveland
What is the prescribed dosage amount. Like 10mg, 5mg, etc
I am on 75 mg 4 times per day (immediate release) plus one 50 mg (extended release) once a day
Thank you. I was doing the clonazepam mouth rinse and it helped it subside but none of the prescribed items have taken the pain fully away
Has anyone found a cure for BMS in only 36 and have been battling this for 4 months live in Southern California been too top oral specialist that specializes in BMS. Don’t find that Klonopin worked for me tried it for a month 0.25mg swish and swallow . Trying a mouth guard helps 50%... any suggestions or doctors here in Southern California please advise , thank you
Thank you so much! I just started taking carbamazepine today. I will see how it works. I'll ask my neurologist about Nusynta. Thanks for sharing!!
I can't believe, after almost 4 years, I found a Neurologist who prescribed CARBAMAZEPINE 200 MG, once a day, start about 2 hours when the BMS usually starts. I got my life back!!! He said I can take 1 or 2 pills, but so far I only need 1. It's wonderful, I never thought I would ever see the light of day!! No side effects for me. Hallelujah!!!
Have you tried a mouth rinse with clonazepam? It seemed to help me a bit but not totally. No insurance coverage so it’s 200$ a month or so.
I had a dental bridge and my mouth has not been right since, first was told Dry Mouth Syndrome took all sorts of stuff made it worse, had blood tests tried different toothpastes, then saw an Oral consultant in hospital he said classic symptoms of Burnt Mouth Syndrome, he referred me to Dental Hospital Liverpool they examined me, blood tests, took notes from me, I was diagnosed with Oral Dyseasthesia which is BMS. They said no cure as Nerve Damage, and advised me to see GP to try low dose of anti depressant I don’t think this is the way forward !
In their letter to me it says my Oral Dyseasthesia was initiated by the placement of a dental bridge. I am still trying to combat this daily nightmare writing to people for advice but nobody seems to know. I have permanent numb lips , my palate is awful and mouth too, and tongue is dry, lately it feels like I’ve got lots of salt in my saliva, I would not wish this on anyone. I’ve also put in a complaint to my dentist !
Mine started with a bridge. We believe the dentist severed the trigeminal cranial nerve, which set off the burning. It has been hell on earth so I understand. My pain clinic doctor put me on Nucynta , a new drug developed strictly for nerve pain. It does not take the pain away, but reduces if greatly. Please tell your doctor about it. If gives you a much better life
My BMS started when I had a tooth pulled and a dental implant put in. I just started taking Carbamazepine today. My Neurologist said to take one pill at lunchtime for a week then start taking two around 2 PM, before the onsight of BMS starts. I have to say, it seems as though it's helping. I chew Carefree sugarless bubble gum all day.
Hi there. BMS - there is no cure, it is not even known why it sometimes suddenly happens. Doctors can treat the symptoms, but NO CURE. There are different medications which help, but you need to find the one that helps you. Mine was Amitriptyline. It became my life line literally. To cut a long story short I started taking five x 10 mg Amitriptyline spread over a day, daily. Whatever medication you take, it takes time to get into your system, so be patient. I had BMS for a number of years, when it hit me first, it was unbelievable. What was this burning, scolding, searing, metallic taste, so powerful. It dominated my life.
Do not add different medications together, unless they are meant to be, or you will not know what is working for you. PLEASE do try AMITRIPTYLINE, keep it to five a day, I took one when I woke up, then two afternoon, and two evening. I found mine started to get worse in the afternoon and evening, oh boy. As, I mentioned, give it a chance, take them for at least ten days and fingers crossed. I do not like to say too much, in case I tempt fate, but touch wood. I now take two in the early evening to keep it at bay. It is life destroying and undescribable for some. Unless, you have had it yourself, like us, they do not know or understand how painful it can be. Good luck.
My thoughts are with you. Kind Regards June
Know that you are not alone with this dreadful condition. I did seek out doctors for years & finally figured out for myself & this support group what I had. I want you to know that it did go away. I have been free of this horrid condition for a few years now so there is hope. Sometimes I get a bit of tingling but nothing like the years I suffered with it. Please know
there is hope... Neuropathic mouth pain was my final diagnosis. God bless..
My internist prescribed Amitriptyline, first only 50 mg (one) at bedtime. Then he changed it to two (50 mg) one in AM and one in PM. I can't tell if it's helping me because when the clock hits 2 PM, it's all downhill for me. Biotene helps a little.
Hi June, I have had BMS for three years and been to many Drs. And dentist at UCLA. No relief. I started taking Amitriptyline for a couple of months —-‘25 megs and I throughly it was helping but it is so hard to tell. Now the Dr. said to add 10megs more. I take it once a day. I feel what I eat plays a big part—-salt, spices, Chocolate with nuts!!! But sometimes it seems to be triggered by anything I eat! I was going to stop A. But will keep taking it for awhile longer. Thanks, Carole
Hi, I have been on it for about three months. Can’t tell a big difference yet. I am taking one pill a day 25mgs—- they are going to up it 10 mugs. I pray to God it helps. I know foods and stress triggers it. It is so hard to pin it down? Thanks for your help. Cd
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