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Nutritional Support for Burning Mouth Syndrome

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Q. Four months ago I woke up with the tip of my tongue burning. My doctor prescribed antifungal drugs, first Diflucan and then Mycelex, which provided no relief.
Now the roof of my mouth is also burning. Do you what causes this or what can be done about it? I have had zero success with prescribed medications.

A. You may want to ask your doctor if you could have "burning mouth syndrome" (BMS). Although this condition is mysterious (no cause or cure have been identified), researchers have noted that it is associated with lower levels of magnesium (Journal of Oral Pathology & Medicine, March, 2009) and vitamin B12 (European Journal of Medical Research, Sept. 28, 2001). Acid-suppressing drugs have been linked to lower levels of vitamin B12 and BMS.

Ask your physician to measure both magnesium and vitamin B12 to see whether your levels are low. If so, perhaps dietary supplements might ease your symptoms.

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I take oral clonopine at night and that seems to help. Have had this on and off for several years.

When I was prescribed excessively high does of vitamin D (prescription dose) for a while it aggravated this for me, so cut back to 2000..

I had never heard of BMS until this newsletter so I looked it up on one of my most valued websites - www.earthclinic.com. In one case, the prescription given to a sufferer actually made it worse [Clotrimazole]. Here is a link to what persons around the world have tried http://www.earthclinic.com/CURES/burning-mouth-syndrome.html

Sometimes medications can cause this. I had to discontinue taking lithium, after 13 years, for this very reason. I suspect that there are other meds that can have the same side effect.

Have you recently started using a new oral product? A few years ago, I had a similar problem with my mouth burning. I realized that it had started when I began using a new, advanced toothpaste. I researched it & discovered others had the same problem with certain ingredients in toothpaste & mouth rinse. As soon as I stopped using the toothpaste, the burning stopped.

I had this problem too. It ruined my life. My BMS is gone now that I eat simple foods and have dropped certain prescribed drugs. For BMS can be caused by medication. Ambien was one which caused mine. I also suspect additives in food that is overly processed. We don't need those chemicals. They only help the food industry and can be detrimental to us.
Judy

I had burning mouth awhile ago. I stopped using my cinnamon mouthwash and it went away the very next day.

Was suffering from burning mouth syndrome and stopped by the CVS Pharmacy. Talked with the Pharmacist who said her grandmother suffered from this. She pointed me to the CVS brand of Antacid Liquid (regular strength) Cooling Mint flavor. A couple times a day I would coat my tongue with it and keep it on for as long as I could. Started noticing relief after a couple days and in a few weeks it was gone. The reason I went with the CVS brand was because there was an ingredient in the name brand that could react with a drug I am taking.

The end of my tongue started burning 2 1/2 years ago, I have taken a lot of different medicines and nothing has helped. Some of the medicines I have tried are
Nystatin, Chloshexidine(Mycelex), Fluconazole(Diflucans),Chloshexine(Gluconate), Sertraline(Zoloft). A Pathologist at a Dental College had me use Biotene tooth paste and mouth wash. He also made me several different stents for my upper teeth.He had me try Cyclobenyoprime(Flexeril), Liidocaine, but not to swallow, disintegrating Clonazepam tablets,and Evoxac. None of these have helped. I went to at least 8 different Dr. trying to find something to help.

One Dr. even had me get a MRI and MRA and do a CAT scan. He thought maybe I had had a mild stroke but nothing showed up. He gave me Cephalexin and Dialant for a week but they didn't help any. He sent me to a Neurologist and he tried Cymbalta that didn't help then on to a Rheumalolgy and he had me try Lyrica. It made my feet swell and didn't help my tongue. I also have tried Voltyaren and tramadol for a low back problem I have had for years. I have even taken a test for Sjogren's Syndrome. Nothing I have taken for the past 2 1/2 years have helped my burning mouth. I also have tried Celebrex . I have never smoked or consumed alcohol. My family Dr. keeps check on my blood work to make sure nothing happens to anything there. I just don't know what else to do.

I started with BMS in March, 2010, and it got progressively worse, despite B-12 shots and numerous visits to my ENT. In June, I was in so much discomfort and pain that I went to my endodontist, as I had two root canals done about five months prior. At the time, he had noticed a piece of a root of an old tooth that was removed in August, 2009. The dentist then said that she was leaving a piece in but that it would NOT be any problem.

The endodontist found that one of the root canal teeth was infected and had to be removed. I then went to an oral surgeon, who removed the tooth and then noticed a wide-spread infection in my jaw, leading back to the piece of tooth that had been left in my mouth by the dentist in 2009. With a pathology report, I found that I had osteomyolitis, a bacterial infection of the bone!

The oral surgeon had to scrape away part of my jaw in order to get the whole infection, and I have been on 1500 mg. of penicillin since that time. Hopefully, this medicine will clear up the infection once and for all. The burning mouth and tongue DISAPPEARED BY THE NEXT DAY. I would urge anyone who had a burning mouth to get a dental checkup, for I would not want anyone to suffer as I did because of the negligence of one dentist who failed to remove ALL of a tooth!

My first experience with intense tongue/mouth burning presented during a period of extreme emotional stress. Started with tip of tongue, progressed to entire tongue and roof of mouth. Prescribed medications did not alleviate the problem. (The burning subsided as the stress subsided.) With a second bout, numbness of half of the upper lip occurred along with burning of the mouth. My dentist suspected teeth clenching/grinding (TMJ), which he believed was causing inflammation of a nerve(s). I was fitted with a bite guard and after a few weeks of adjustments the numbness and burning were gone. I have worn the bite guard every night for several years with no further episodes. Just another possibility to consider with your physician in pursuit of diagnosis and treatment.

I am so glad I found this website and to hear of others who have BMS. I have had it for 1-1/2 years. My palate, tongue, and under the tongue burn all the time. One dentist recommended chewing gum with Xylitol to increase saliva. It only masks the burning. Another dentist suggested giving up coffee & pop, which I did 3 weeks ago - no relief yet. But I decided to stay off of them, anyway. I drink a lot of water and some decaf green tea.

He also said to give up acidic foods like fruit juice, raw veggies, nuts, popcorn, Biotene toothpaste & mouthwash and to try B-12. I just started on the B-12. Since the fall I have lost 40 lbs. and have changed my eating & cooking habits and the raw veggies, nuts, & plain popcorn help me stay on the diet.

I notice more & more that I have to eat bland food because of the BMS. I also have weaned off a lot of medication that I have been taking for diabetes & digestion. I am going to a doctor next week who specializes in BMS. I am going to share all your comments with him. Wish me luck!

My vitamin D was low so my doctor put me on 5000 units a day . After a few weeks I started having BMS and acid reflux . Doctor put me on PPI and is running test for the BMS which gets worse as the day goes on. My vitamin D level is normal now so I'm going to stop taking it to see if these problems get better or go away. Will keep you posted.

+

I have suffered from BMS for the last 5-6 years. My lips, mouth, palate, tongue, throat and esophagus burn as if I have been eating hot peppers. The cause of this discomfort is a reaction to chemicals in some perfume sprays, Crest whitening strips, spray furniture polish, certain sun screens, some lipsticks and other cosmetics, etc.

Food is not a factor. The only thing I can do is avoid a product once I have a reaction. I have taken Benadryl and it helps somewhat, but it makes me very drowsy. I chew gum, take antacids, and suck on ice cubes to mask the symptoms. Usually, the symptoms subside after 5-6 hours but sometimes persist for a day. I'm not sure what else can be done.

Was the BMS Doctor that you saw able to help you? If so, where is he/she located? I have seen the Dr. and Dentist and nothing they have suggested has helped. Thank you

I take oral clonopine, dissolves in your mouth at night and that has helped in my case. mine usually flares up due to stress. and sometimes as a reaction to other meds.

I have been to a dozen or more doctors, dentists and have spoken to professors at dental schools. Now I'm trying the drug Neurotin. I'm miserable since May. Can you please share any info you got from the doctor you went to and his/ her name. I'm ready to give up but I can't, It colors my world. Good luck!

Did PM reply?

I recently have developed burning mouth in pockets and only at night while sleeping. I do take high blood pressure medication, and I have used whitening strips. I also am in menopause and have noticed an increase in frequency when also experiencing hot flashes. The past five days I have developed sores in my lower lip that are so painful, I am unable to sleep soundly.

I am currently without health insurance and am forced to eliminate possible causes (except for the hypertension med) and use home remedies. Any advice is greatly appreciated!

Would the person who has BMS please share the name of their high blood pressure medication name? I have been taking it for just about 2 years, and my burning tongue and mouth problem has been with me for 2 years now. It would be helpful to know if it is lisinopril. Thank you.

I've had BMS for about 6 years. It affects the area of my front 8 and sometimes 12 teeth, and occasionally the rest of my mouth. Not too bad in the morning, and gradually grows worse during the day; about 2 nights a week, I take naproxen or acetaminophen at bed time. Once in a while -- perhaps every 3 months -- I've had the experience that after the first bite of a meal or snack, the BMS completely disappears for a few minutes. It soon returns.

I bring it up with every doctor and dentist I see, and most look at me blankly. (It was my dental hygienist who gave me the name for it, but she hasn't found any other useful info yet.) But a year ago when I saw the surgeon who removed my malignant thyroid 4 years ago for my annual followup, he recommended B6 and B12, which I now take, but without any obvious benefit. A periodontist recommended avoiding all mouthwashes except for Crest All-Health; I used it for a while when it first came out, but now avoid them all. Two years ago, I started using a 50% solution of hydrogen peroxide (that is, drug store peroxide cut with an equal amount of water) every morning, and my BMS is no worse, no better, but my mouth is otherwise happier. I don't use toothpaste a lot. Oddly, occasionally flossing produces a brief sense of relief of BMS.

I take synthroid (since my thyroid was removed) and, for the past year, simvastin, for cholesterol, and a collection of supplements when I think of it, including 4000 units of D3 and 3 fish oil capsules.

Once I had some confidence from my PCP that it was not the precursor for something life threatening, I could live with it. But I find that I have to keep my mind occupied -- radio on to talk shows, things that occupy my intellect. When my mind isn't working, I'm awfully aware of how much my mouth hurts -- and at the same time, grateful that the painful area is relatively finite and concentrated. I can live with it. And if it is the worst thing that happens to me health-wise, I'm very very lucky.

I have upper dentures that don't fit and lower partial is so tight it is so painful I have to keep taking them out. I have horrific bms. I need help desperately as my tongue cheeks hurt terribly.

I took Lisinopril but only stopped it due to dry cough, then I recently took - Losartan (generic for Cozaar) and believe I have BMS based on all the symptoms so I had to stop it.

About 1 1/2 yrs ago I started having symptoms of BMS. I had an extreme amount of stress in my life, (2 immediate family members dying with cancer at the same time) I began to feel completely awful (all over) I was started on Lexapro first, I was already on Norvasc for BP and .5mg xanax for anxiety. Then, after years of insomnia I was then placed on Ambien 10mg for sleep.

The Ambien at first seemed like a miracle drug because I was sleeping for the first time in yrs. After a few weeks or months I can't even remember I was under so much stress. I started to suffer from symptoms of thrush and my tongue was burning. I then got really scared because so much cancer is in my family... I started to get checked out by my General Dr. who ran all kinds of tests, (nothing came back unusual) but he was still very concerned so he then sent me to an oncologist just for a check up. Still all test were good. Thank God!

After both family members passed, I slowly was able to stop the Ambien. I have been off for 2 weeks now and have noticed that the BMS symptoms are better. Soo... I really don't know if the decrease in my stress or stopping the Ambien has made the difference, but I think the true culprit was the Ambien.

I have been on Ambien for about 4 years and have suffered with burning mouth syndrome for about 3 and 1/2 years. I don't know what to do. If I don't take the Ambien I won't sleep. And if I don't sleep, my fibromyalgia gets worse. I have had TMJ disorder for many, many years. I've also had a lot of dental work... no more teeth left... have upper dentures, lower denture that now clicks onto 3 dental implants. I also have a 98 year old mother who has been living with me for over 20 years. I am so stressed that I don't even know where to start. I would love to stop the Ambien but I believe I am totally addicted to it now. Any suggestions would help. I feel so lost and in so much burning pain all the time.

Definitely have your dentures adjusted and see if that works. It may actually be that simple. I pray that this will work for you. I've been suffering for a very long time with bms and still have not found the cause.

I just found this site this evening and I will pray for everyone so that we can all find the cause. I do hope and pray your answer is those dentures. God bless you.

I first wrote July 18th 2010. I just read all the updates and I am startled that so many people have BMS and not a lot of Dr.s know anything about it. I am still bothered with the problem and have not found anything to help.

I was also surprised to see so many people with BMS. The way I'm going about it is one thing at a time. I'm checking out websites and seeing what helped other people and then giving it a try. I stopped ALL vitamins for one month and that didn't work. Then I stopped using denture cleaner for one month; that didn't work. Now I've been taking B-Complex Stress vitamins for nearly a month and this isn't working either. By the end of this week I will begin taking alpha-lipoic acid tablets and see if that works.

Some of these things have cured other people so I've got nothing to lose. You may also want to check out the Mayo Clinic webpage. I pray we all get well SOON!

I have had BMS for almost a year. I have had some relief with twice a week acupuncture in combination with herbal medications used for other postmenopausal type symptoms. But it's still an up-and-down life for me; some pain-free days, some so-so days. Taking Tylenol and a nap seem to help some as well. I have cut out wine and spicy foods to see if that makes a difference.

Hi, I also take Ambien and can't sleep without it. I have horrible burning mouth which seems to be cyclical and migrating. Lots of drugs cause weird side effects.... could be the ambien. ask your dentist for magic mouthwash. that helped me. it has lidocaine with some maalox and one other benign soothing product. Also try ice chips. That helps me, too. good luck. I know how miserable this is.

I also have burning mouth syndrome ... I used a salve for shingles and also had yeast infection and soon after got burning mouth ... I take nystatin but doesn't do any good just tastes good. I am wondering if the salve or the pill for the yeast infection could have started my problem? I think it is an antibiotic ....?

I also have Glossodynia, Burning Mouth Syndrome, BMS for 1.5 years. Still trying to rule out Candida, Nystatin rinse hurts too much because of the alcohol and sugar, Endocronologis prescribed dilucan, had some dental retainers made just to keep tongue from touching teeth, seems to get worse during monthly hormonal cycle and best thing that works for me is the Klonopin and some kind of mouth guards.

I have heard of many people getting through this even after 1 -2 years. Hang in there and don't listen to the Nay-sayers.... K.G.
All things shall pass...

Thanks. I have it sooooooooooooooooooooooooooooooo bad I can't eat anything without it burning. I will look.

I take Nystatin Oral Suspension. It's an RX mixture with Malox (sp?) in it. You think it tastes good????? Yuk! I have had this for about 2 years on my tongue and starting on the roof of my mouth. It is SO bad that there are lines on my tongue and you can see all my taste buds. I can't even drink anything without being in pain. I was told that, because I am a Diabetic and have dry mouth syndrome, that's what caused it and that there is no cure. I found a place in New Zealand that had a, so called cure, and I was getting better. Then, it got worse again and I contacted them and they returned my money. I don't know how I can live like this any longer.

I have to take my Nystatin before and after I eat anything and it really doesn't do much. The only time I am not in pain is when I am sleeping. God, I hope someone finds something to help us all.

I have had burning tongue syndrome for about 3 years now. It is just getting worse as it's starting to go on the roof of my mouth. I am IN SO MUCH PAIN!! I have lines going down my tongue and in those lines you can see my taste buds. They are actually sticking out. They look like little white seeds in my tongue like I planted a garden!!! LOL. Have to laugh, right???

I am told that because I am Diabetic and have dry mouth syndrome, because of that, that is how I got BMS. I get prescribed Nystatin Oral Suspension which is a numbing solution along with, I believe, Maalox. I heard about this from a nurse friend who's mother had it. They have a silly name for it but if you call your pharmacist they will know about it. Not necessarily your Dr.

It just eases the pain. I was told that it will never go away. What a horrible thought! There are times when it is better than others but it is always bad.... the other times it is just nearly unbearable! I even got a drug from a place in New Zealand that said it was a cure. They were pills and I believed that it helped for a couple weeks but then it came back. I wrote them and they returned my money. I was so disappointed.

I can't eat some of my favorite foods anymore. Can't even eat a popsicle anymore. SOMEBODY HELP US HERE! We should start a BMS club. It's nice to talk to someone that knows what you are going through. Good luck to everyone and if anyone has found something that works, please let us know!!! Juli in pain!

I am going into my fifth year with BMS. It happened over nite on vacation. I woke up and thought I had burned my tongue at dinner the nite before. It has only worsened. I have been to several doctors and dentists. Last session was at Tufts which was a waste of my money. To be told that some people get this because they're looking for attention floored me. I'm in the chair in pain and hearing this statement made me begin to cry. Response from doctor: "oh did I touch a nerve?"

None of the remedies worked and after two sessions for $400.00 I decided I didn't need that kind of support. To put someone on antidepressant drugs as a cure-all is ridiculous. I work full time and cannot take these wonder drugs that I will ultimately get addicted to- and why? They don't work. I've just read studies have been done using 600mg a day for 20 days and 200mg. a day following for 10 days of Lipoic Acid - a nutritional supplement. Has anyone out there used this? Does it help?

I don't want to live like this anymore. To be on a beautiful cruise, golfing with my husband, giving presentations to 50+ audiences, watching a movie... the intensity of pain is always there. I am a relatively happy person and upbeat. This is taking its toll. Thanks for listening/reading-sigh nm

I have had BMS for 4 1/2 years. It started with pain at the tip of my tongue and progressed to my tongue and roof of mouth. I have been to many doctors/dentists/naturopaths with no success. The pain has been daily however, the intensity does change. The nights and mornings are fairly good but by mid-afternoon to evening, I just want to cry. I have also been told that I will have this for the rest of my life and I can't imagine how I will manage.

I had burning mouth too. I decided to stop taking ambien and it was gone within five days. I highly recommend stopping medication bc a lot of time that is what causes it.

Dear ALD,

Thank you for your story. Mine is similar. Nearly 3 years now thousands of dollars in MDs and RXs and still no relief. tried everything. How are you doing? Any success yet? So sorry to hear that so many others are suffering with similar pain.

Mine started with what felt like a GERD episode, I was treated for GERD foe more than one year. None of my docs know what to do with me. I have modest relief from generic Neurontin. Helps me to get by. Pain went away totally on low doses of old school antidepressant, but I gained.5 lbs a day. After 15?lb increase I refused to take more. Pain returned immediately.

I have been reading that it my be hormonal? I am 11 post hysterectomy.
Yikes. Any help out there?


BR

I have had BMS for about 8 years now and have tried everything with no relief. Finally, about a month ago I started taking 1000mcg of B12, a Multiple Vit, and a vit B complex pill everyday with great success almost from day one!!! I had no success with the 1000mcg of B12 alone but after a month or so started taking the other two pills with it and it's been like a miracle!! Please try this combination!!

I started having BMS right after Easter. Didn't know what was going on so I went to my Dr.,who gave me a swish, no help then to my Dentist got litocane only about a minutes help and it made my teeth cold, then on to the ER as my mouth was raging with pain, said I had thrush and I received another mouth swish and Tramadol which did nothing either. Sooo went to another Dr. who gave me a different swish still nothing has helped.

Back to my Dr. who recommended a parodontics who after the 2nd visit said he was sorry but couldn't help me, (traveled 110 miles 1 way twice!!) Had an MRI no cysts, now to see a neurologist if I have any income left. My two children have been a God send to me they have searched the internet and found this support group. They have sent info to try Alpha Lipoic Acid 600mg SR 1daily- CoQ-10 200 mg 1 daily--Mega B Stress 1 daily so am starting this today. I also take Laminine in the morning and will increase to 1 in the afternoon. Something here has to be helpful. Best wished to all

Try B 12 and and the other b vitamins and cut down on sugar it helped me. It takes some time but slowly it works. Also if you are taking any thing to lower stomach acid ( purple pill) you will not absorb your vitamins as well as you should. I'm 49 and bms started when I started having stomach problems and having hot flashes, and ended up going to 4 doctors before I was able to find the answer myself from going to many sites and reading a lot. Hang in there it will get better. !!!!!!

@Deb - Since yours started so suddenly, did you change toothpaste or mouthwash or something like that around that time? That was the cause of my burning mouth problems. A new toothpaste. The problem went away once I finally figured it out & stopped using it.

Am so grateful to have found this web site, actually my daughter did, finally finally people who understand the pain this causes and what one might do to be helpful. Any info would be greatly appreciated, tks.

Thank you Denise and J for replying, I have gotten a new toothpaste also along with the other products even started Natural Progesterone Cream on the belly 1 time a day. Tks

I had all of the sudden a bad case of BM and I even was treated with the fungus meds with no relief. After I read all about different home remedies for BM and Thrush I've decided to try Milk of Magnesium and Benadryl 50/50 mouth gargles. The result was immediate, it hurt really bad at first, them my mouth got numbed and the pain went away. I did the rinse 3 times that afternoon and by the evening most of the redness was gone. What happened to me was a change of toothpaste with a combination of some balsamic vinegar I had started to use.

I did continue with the rinses for the next day, bough my herbal toothpaste again and a dry mouth rinse. I am being really careful on what I eat, because those vinaigrettes are to acidic and as we grow old our our body changes. I know at 56 years old lady my Ph has change due to hormonal changes and anything I eat with high acidic affects even my bladder. Good luck. MJ

I have been on this regime and it has helped fractionally. However it's always with me and I'm still experiencing some rough days. Not sure what to think...always worried how long will this last? nm

Started my new regimen two weeks ago and nothing absolutely nothing has helped. Neurologist gave me a prescription for carbamazepine and have not noticed any kind of change what so ever.

I also have this problem but I think mine is down to one of 2 factors, firstly hormones, I started with this when I was pregnant around this time I also had a stuffy nose and struggled to breathe at night, when my baby was born my nose cleared up and it went away, apart from around the time of my period it returned but in a milder form. This week it has come back quite bad, I've got hayfever and my nose is blocked again and a sore throat, also I've been away for a few days and messed up my pill so it could be hormone related or due to my nose. I've also noticed that the more I think about it, the worse it gets, kinda like a circle, because I get more anxious and that makes it worse :(

thanks everyone for your input and stories. I've only had this for about a month. I am a breast cancer survivor, and 1 year out from chemo. I am taking tamoxifen which messes with my hormones and when this all started I was and am having horrible hot flashes. I've tried, chiropractor in case it was a pinched nerve, and I do accupuncture every 2 weeks which actually helps for about 4 days. I'd go more but its $$$.

The b12 with a b complex along with the R Lipoic acid 3 times a day seems to show relief. I just had a blood test to check thyroid levels as I am on Synthroid, and VItD since that was lower last time I checked it in May. I do take 2 5000 iu vitD. if my levels are good after blood test I will lower that. I'm 44, and can not imagine living with this for the rest of my life.

Drs think I'm crazy, but generally speaking if it wasn't in the books when they graduated from med school then they don't believe it exists. I don't need a Dr to tell me its all in my head. If anyone finds the cure all please let us know!

Hi Dezzy
Yesterday I was put on Vit D. The dose is quite high. Started with 2x1000IU last night and took another 2x1000IU this morning. (The recommended dosage was actually higher). Not long after the morning dose I felt the extreme reaction of BMS. Seems to be connected. The vitamin D level while having shown as low, was not abnormally so. I have excess calcium in the blood. I will not stop taking the Vit D, however will lower the intake; my decision. Check out with your doctor, I can understand the prescribing of D for the cancer. Its getting the balance right with chemicals (and vitamins are chemicals); hard to do as one cannot have daily blood tests.

Thanks everyone for sharing your stories, I have BMS for about 2 years now, I have been everywhere from professors to doctors to dentists but no help from any thing .... have been told it's low iron levels or menopause? iron levels fine have bloods checked regularly... as bad as the burning is, the pain is very hard to live with as you all know... there seems to be no light at the end of the tunnel.... glad there is group to talk about this with :)

I was told I have BMS there weeks ago by my Ent, I had a root canal and crown done about two month ago I also take Omeprazole for Gerd. I have burning on my tongue, the roof of my mouth and my lips burns. Nothing has helped me so far this is very frustrating I am only 42 years old in great health. Since this condition defy the Doctors, my only hope is in the great physician JESUS. Thank for all your comments. God bless

I started taking fenofibrate to lower cholesterol and two days later felt like my mouth was on fire. I looked all over the net for side effects such as this and never found any. I have a call in to my doctor and won't take any more until I hear from her - it seems like it could be a trigger. Thanks to all of you who have shared your stories and successes, prayers for healing!

I had BMS for only a few days. It was really painful so I can imagine that it drives you crazy when you have it for years. I read on the internet about rinsing with baking soda. So I did rinse three times a day. Just a teaspoon in some water, rinse for a while. It is now completely gone. I would like to know whether this really works so when others try and have success let me know.

I have recently been put on Klonopin, a sedative, at night, and I immediately had three pain-free weeks. Right now I would say my symptoms are 75% improved since I first started having trouble 18 months ago. I go to acupuncture on bad days and I take herbal supplements for post-menopausal women and lots of vitamin B. I also take anti-inflammatories for other health issues. The Klonopin does not get rid of the swelling but it decreases your nerves sensitivity so you do not feel the burning. Worth a try.

I have had BMS for 12 years and have halitosis non stop. It has literally made my life a living nightmare. I gave up on my doctors dentist and have spent a huge amount of money for nothing. I dont understand why there is no physicians who can help us? I cannot stand the way I am treated by co-workers and feel my job is being threatened. I have stopped going to church and socializing. It is painful and I am embarrassed by my halitosis. I do believe it is stess related and possibly a chemical imbalance. Praying for relief and cure for us all.

Been having BMS and found out what it was from Mayo Clinic website. I can sleep; but it starts in the morning and worsens throughout the day. I get some relief from the baking soda rinsing; started the ALA a few days ago. I take B-12 injections which I started recently. I suspect that using a tooth paste with lauryl sulfate started it; still having BMS just using biotene products. Glad to have found this site; still looking for some help.

I've had BMS for almost a year. Its misery & I spent 2k having the metal taken out of one tooth-no luck. I had thyroid cancer in 04 & endo doc doesn't think it has anything to do with that. My zinc was low & my b2

Can't take the other vitamins. Quit taking the omeprazole for my stomach. Been on it for years & thought maybe that's part of the problem. Using the baking soda rinse, moms mouthwash to numb my mouth just to survive. For now I'm going with the higher dose of vit d to see if it works & cut out all the other stuff. Anyone with any advice I would appreciate. If I were suicidal this would be a reason to end my life but God willing it will pass. Blessings for all of you to get well.

I started with a lot of relfux about 3 months ago. Now mind you I have been on some sort of antacid for 14 years (nexium for the past 4 years) and also had gastric bypass almost 2.5 years ago. I lost 100 lbs and am at a perfect weight now. My bariatric doctor did an upper GI in Sept to rule out ulcer and the results came back great. No ulcer. He did prescribe me carafate for a few weeks and that helped a lot. I haven't taken any for a few weeks since I haven't felt the need. I also was diagnosed with rheumatoid arthritis almost 2 years ago and take weekly methotrexate injections and monthly orencia infusions. I had to be off of those for 2 months because I was on antibiotics for UTI, sinus infection and a lung infection.

Those are all better now so I am back on the injections and infusions. Along with RA I also have sjogrens (good lord you'd think I was a mess. LOL) My mouth gets so horribly dry at times and drives me nuts. I use biotene dry mouth rinse. A few weeks ago, my mouth really started to not only get bone dry but also burning a bit and food has been losing it's taste. My prescription Prevident Sensitive toothpaste that I have used for years has actually been burning my mouth as well as the biotene. My gums hurt when I floss (which I do everyday) and my mouth hurts. I looked in my mouth a few days ago and also noticed my tongue is slightly swollen. The middle part does not have any bumps (taste buds) on it and it's just really smooth. It's sore as well however I don't see any sores in my mouth and keep my mouth very clean.

I see my Rheumatologist in a couple of weeks when I have my infusion again so I will bring it all up to him but I am just curious as to this new symptom. It's interfering with eating and drinking and is becoming more and more painful. I had never heard of burning mouth syndrome and I have what many have shared here. I am wondering if it is connected to an autoimmune disease such as sjogrens syndrome.

My dentist told me to try apple cider vinegar. Use 1 ounce and swish. I try to get lips also as they are as sore as tongue. Then swallow the vinegar. Do this twice a day.

If no improvement, he will have a "compound" made at a local pharmacy including med for thrush and a steroid.

Next would be laser treatment, which kills the cells of sore areas. It's painless, so he says. I hope this is helpful. I know how miserable this can be. Finally, I can look forward to the holidays..even entertain, without worrying about how I will feel.
Good luck to all.
PM

Finally after 17 months I found something that helps this awful condition :)
BMS started a year past June when had teeth whitened by dentist (chemicals in trays).

Things that have given slight/temporary relief are: anti-fungals, magnesium, b vitamins, rehydration (needed salty snacks as well as more liquids).

Finally I have been trying vitamin d supplements. We have little sun here and I work indoors so it seems likely I could be short of vitamin d. It's only warm enough to wear shorts a handful of days a year. Could this explain why BMS always seems to improve on holiday? And now I find out that wearing sunscreen stops vitamin d production - hmmm!

Early days yet but this is what I've found:
Going for a sunbed relieves stinging in mouth for a few hours, then it returns.
1000IU Vitamin D reduces burning for a little while
2000IU Vitamin D reduced burning for maybe a few hours
6000IU Vitamin D (3 x 2000 spread out) relieved burning and also lower leg pain
9000IU relieved symptoms well but gave me mild heat discomfort
Vit D taken without food gives heart discomfort although magnesium spray on chest reduces it.

Problem now is that as the symptoms reduce I forget to take Vit D! Also if I wake in the night chewing my tongue (eeeughhh), 2000IU is enough to reduce symptoms enough for me to sleep again although it takes up to an hour.

I have done my research on taking high levels of vitamin d. If you decide to try this please look it up and start very gradually/ask your doctor.

PEOPLE'S PHARMACY RESPONSE: Please do check with the doctor before taking more than about 3000 or 4000 IU/day. At higher levels (10,000 IU/day), some people might be getting into the toxic range.

I have had bms since June 2012, it's gradually worsened till its presently depressing me. I don't know what caused it, I originally thought it was a gel anti inflammatory for tennis elbow but am wondering if it's toothpaste having read the other posts here. I did start a new toothpaste but not certain of the date if it could be related.
What I do know is that for me a large dose of complex B vitamins, (two of the one a day tablets) daily, works reasonably, if I forget my tongue is so sore I don't know what to do with myself. Sleep is the only answer, it's better in the morning and worsens during the day.

I am 3 years post a hysterectomy for cancer, had chemo and radiotherapy, am on no medicines. I have hot flashes but take no HRT as it could cause cancer to spread in my body if I am unlucky to have some cells lurking.

I am glad to have found this site, hopefully we will all find some relief.

I have BMS and have another thing that has helped -- do not use lip gloss. I have come to realize that my BMS increases greatly in severity after application of gloss or some lipsticks. I am trying to find a gloss that has no lead, mica or other bad ingredients.

Dona
How did you get on with ala?
Regards
Sdp

I've researched and researched. I have a question(s) for everyone if you don't mind to answer.
Have any of you had your gall bladder removed?
Have you had gall stones?
Do you have a sluggish gall bladder?
Do you have a haitel hernia?
Do you have a history of ulcers?

I'm trying to find a common thread among us and an answer before we're all completely insane.

Let's see if we can find just ONE common item. Thanks a bunch.
It use to be Ms gooze now it's Misery gooze.

I have had none of the above problems still looking for help.

My conditions are hypothyroid (I had thyroid cancer in 04, so no thyroid and take levothyroxine to live). When I think back, in 08, I had two teeth pulled and I started having a metallic taste around the part of the tongue next to what I call a bottom canine. I thought it was all the metal in the tooth since it was filled many years ago.

I had a hysterectomy in 1996 and am on HRT (Premarin). I was taking it every other day but now taking it everyday because BMS can be associated with menopause. I am on Omeprazole (Prevacid) and have been for years due to Haietal Hernia and IBS. I am on .5 mg Xanax 3 times a day and have been for 14 years. I take 1 Neurontin every night. The doc wanted me to take 9 Neurontin a day but I couldn't get past 4 and hold my head up.

I have had tons of blood work and my Vit B2 came back -5,simply didn't have any at all. My zinc was low and I was also on Vit D.

The vitamins make me terribly sick at my stomach so 4 weeks ago I thought enough is enough.

I stopped all the vitamins except B2. I have brushed my teeth with baking soda out of the box for 2 months-nice and white teeth but too scared to use toothpaste. I also have read that we are now over fluoridated-can't win!

I'm going to give another week of the B2 and then I'm going to add the Zinc. I'm almost afraid to say this, but, the last two days I've had some relief so I don't know if the B2 is finally increasing in my bloodstream or what. I've also not tried wearing my partial because of the metal but I may try it Tuesday when I go to the doc and see what happens.
I had asked about the gallbladder because I also had it removed during the same time I had the 2 teeth pulled (08). I've read that the quick dumping in from stomach to liver can cause BMS too. So far, there's not been one doctor that has a finite answer.

I suffer with dry eyes, mouth, hair and skin but my thyroid levels are so low that I really don't have many options and can't play around with the thyroid meds. I hope between all of us that we can find ONE answer to this problem. I also have a torn rotator cuff that started during the same time the tongue did so I'm inclined to belief it could be a cranial nerve since one does go to the tongue but I can't get any of the doctors to believe the possibility. I'm not gonna stop until there's an answer or I don't have to live with this but I hope everyone will keep posting any ideas and test results to help each other.

For the sake of sanity you can get a rx mouthwash called "mom's mouthwash". Demand that your doctor/dentist do these things... we pay them and they need to remember they work for us... right???Its a combination of Lidocaine and a few other things to numb your mouth. I couldn't have gotten this far without it to relieve the intense pain.

Ask your pharmacists because it is compounded and if you need a script for it just call your primary care or dentist and have them write one. My label reads like this ALOH/DIPH/MAG/LIDO/SIME Mouthwash 1.1.1.1. which means its one part each. Don't live in total agony if you can at least numb your mouth and it really does help even though some days I have to do it numerous times.

Also you will need 480 ML in order for it to last you a month if you use it every 8 hours/should be two bottles. I use the most scant amount I can to be thrifty so I never run out totally. If you can't get this rx, then mix 1 tsp of childrens cherry benydryl to 1 tsp of mylanta (the mylanta is just for coating) and hold it in your mouth and it will numb too but not as good as the moms mouthwash. Hope this helps someone. I appreciated any help at all. Love to all.

In regards to mouthwash, my doctor prescribed something for me called "oncology mouthwash" and it's to reduce acid in patients getting chemo. It think it helps. The downside is that it has to be refrigerated so you can't take it with you.

Ok, so just over a week on alpha lipoic acid, x2, three times a day, plus four regular complex multi b vitamins (breakfast and at 5pm).

It goes! Muck up the regime and it's back, like today, out with friends and forgot to take it. It will take till tomorrow now for it to feel better, I have forgotten once before.
Will post again in a few weeks my progress.

For just over 2 yrs my mouth has been burning, at times it gets so bad I do not know what to do. I've talked to my Dr. about it and he had no answers. He recommended that I take my antacid medication daily as to every other day as it might be acid reflux causing my burning mouth, no success. It was so bad that I stopped all my meds and supplements, changed all my regular foods, changed toothpaste and lip balm for over 2 weeks (in case that it was an allergy to something I was taking or eating) and no relief. Also tried antihistamine and again no relief.

The only time I would get relief was when I ate olives or swished with the vinegar from the olives, the acid in the vinegar was hard on my teeth. That worked for a while but not now, I have tried regular mouthwash, hydrogen peroxide (diluted), Biotene mouthwash all to no avail. Now my gums are being affected.

I've had blood work done and all is good, my B vitamin levels are all good. I was on high blood pressure medication but no longer need it, also stopped a muscle relaxant now only take it prn, and still no change in my mouth. I can usually tell what kind of day I will have by how early my mouth starts to burn, the earlier it starts the worse the burning will be in the day. I have a night guard as I grind my teeth, no change in the burning of my mouth.

I read that low levels of Zinc might be a cause so I am trying it, just started 2 days ago. Will let you know if any improvement.

I developed BMS approx. two months ago. I've been severely depressed about it. I already am dealing with chronic leg pain for 18 years and with it nausea everyday because of the methadone I take for it. Methadone is a culprit too for BMS. Is anyone taking that or a different narcotic for pain? I have a lot of the same things going on that they say could be a cause for BMS. I am 52 years old in menopause. I also have acid reflux and have been taking prilosec for a long time. I've been depressed practically my entire life. I have been on a lot of different antidepressants for years and years. I too had a dental procedure just prior to the onset of BMS. I also was sick just prior to the onset where I had been given antibiotics for my sickness. And I definitely have nutritional deficiencies from not being able to eat because of the nausea but now I really am having double trouble eating due to the BMS.

I'm trying to narrow it down but as you can see there are already so many reasons as I mentioned above as to why I may have developed this. I understand that many of you have had it for years. I'm so terribly sorry. I can't even imagine that. GOD, please help each and every one of us get rid of this terrible illness that has mystified us all. I pray in dear Jesus'name AMEN.

Approaching 20 days on 6 ala tablets (and 4 complex b vitamins) daily and the past few days have been really good but I have not forgotten them or taken them too late. On Wednesday I need to drop down onto lower dose but I think I am going to stagger it down over a few days. Will post progress next week sometime.

I continue to use baking soda which seems to help when any bouts flare up. I also continue with the alpha lipoic acid when it happens. Grateful for relief; still take B-12 injections.

I have noticed that many on this list have received relief from Mylanta and Malox used in an oral rinse. Since many of the sites I have researched have stated that Magnesium deficiency can aggravate or even be the cause BMS, could it be that the Magnesium hydroxide (Maalox, Mylanta, Diovol) is absorbed directly by the mucosal membranes and thereby helps heal the BMS?

Over the Christmas period I didn't manage to reduce the ALA, as soon as I dropped a tablet it was back with a vengeance. I returned to the full 6 a day dose.
Then I got really bad acid reflux, for about four days I didn't know what to do with myself, I measured acid level in my mouth and it was high. In desperation I stopped all tablets. It has taken about a week and the acid reflux is gone and I would like to say so has the bms, I have a slight taste in my mouth after eating but in comparison to what I have been through I can ignore it.

One thing to note was that my lips had been swelling on the inside, I mentioned this to my husband, he said he can get that from the E45 moisturizing cream we both use if he gets a bit on his lips I started using it last March, not sure if this is a co incidence but I had been using it on my lips as they had been so sore and I had been unable to wear lipstick or a lip balm.

I have gone back to my Olay moisturiser. So for the moment it looks as if the bms is almost gone.

I too have suffered with BMS for going on 7 years now. I have tried most everything the Alpha lipoic acid, the B12, etc etc. When it was very bad about 4 years ago the only thing that seemed to put it into remission was capcasin lozenges that were specially formulated. They were horrible to take, but I was so desperate that I did use them a few times a day for 3 weeks or so.

Now my BMS is bad again, I have almost given up on western medicine and I saw a TCM and got some herbs today, may also try acupuncture. When I was originally trying to get this diagnosed one idiot doctor said just be glad you don't have cancer, I wanted to slap him.

I am female, just turning 50 this week and have made it my resolution to resolve this once and for all. I am in great health, I exercise 4 times per week and watch what I eat. I do take synthroid for my thyroid and have done so for 22 years. So I just don't believe it when doctors say this is related to diabetes etc.

Did you try vitamin b 12 or zinc.?

Yes I have tried Alpha Lipoic Acid, B12, Other B vitamins. I haven't tried zinc, will try that...but I am trying to be patient to not do too many things at once otherwise I won't know what does and doesn't work. My doctor just prescribed gabapentin which is for nerve pain, so I will give that a try if the TCM herbs don't help within the next 30 days or so.

I am back on 1 ALA per day for the past three days, I take it if the cotton wool feeling in my mouth appears, the bms then subsides. Sometimes my mouth has been sore, I had a pea sized hard lump in the middle of my tongue for several days, I googled it and it said it was a canker sore and to take some ibuprofen, which I did and it has almost gone.
The BMS is ok for the moment. I had cancer a couple of years back and I hate the BMS more!

I have been dealing with BMS for almost a year now. I am 52. Have been trying to eliminate things to figure out the culprit, the only drug that I have not eliminated is Ambien.... wondering if that might be part of the problem. Here are some things that have helped me: Since starting on progesterone cream, my condition is much more manageable, still have some bad days... but I feel over-all it has reduced the miserability by about 50%.

I cannot use any toothpaste (not even sensodyne or biotene) whatsoever... if I do, I will pay for it for 2-3 days... I use baking soda only. I have magic mouthwash, only seems to help when it's in my mouth. The spice, cinnamon seems to help sometimes and why, I do not know.... I randomly made cinnamon toast one night and noticed my mouth felt much better, so I put it directly on my tongue... helps sometimes and other times, not so much. I pray that all of you get better and that we find an answer!

Hi Mary! I am responding to your post about burning mouth and tongue. Did you have any pain in the jaw in the area that they found infection? Your scenario sounds like what I may be experiencing. I am struggling to figure out how to stop this it's terrible.

My BMS has gone!

I am almost 99% sure it was E45 Intensive Recovery Cream, I started using it last year, I stopped using it a couple of weeks back and used my old moisturiser and my mouth was fine. Then I ran out and for about three days went back to E45, the BMS started almost immediately. I got a new pack of Olay and so far I have been wonderful, the sores are gone, the dryness, wooly ness etc etc, all gone!
I hope those of you who are looking for answers find an answer to yours soon.
As an addional note I found someone I know whose BMs is triggered by eating potatoes and associated Nightshade family foods.

Forgot to add that I am no longer taking Alpha Liopic Acid.

Please let me know what the specialist recommends.

I I'd be interested in knowing as well.

SIP - What. strength of ALA were you using? I may try that. The other vitamins I'm taking aren't helping yet :-( Does anyone else have any other symptoms with their BMS like extreme tiredness, difficulty concentrating, headaches, and dizziness/nausea?

I am so happy to hear you are feeling better!

I experienced BMS about 4 years after going through menopause, which I understand is very typical. I play a wood wind instrument as well and playing became very painful and difficult to control. At the same time BMS appeared my hot flashes suddenly increased and I began having problems with acne. I concluded that hormones were a factor in this, however my "male" doctor refused to do a hormone level check and insisted that my thyroid levels needed to be checked.

Of course my thyroid was fine. I spoke to my dentist and ENT, as well and they said there was no none cause or cure. So, as I suspected, I was on my own. I have discovered that the herbal supplement- Menopause Support made by NOW has made an incredible difference. For the most part it is under control and the pimples and hot flashes are almost gone. If I stop the supplements it comes back. I also experimented with food allergies and I think wheat seems to bother it also.

Lorraine - I was wondering if you have found anything to help yet? I am taking the same pain medicine as you and I Am seriously considering changing that medication with my doctors help of course. Have you found anything to help yet and/or have you considered changing your pain med to see if it helps?
I Am going to also try the ALA to see if it helps. Will update if anything works. God Bless you all

I've had BMS for several years. It flares and subsides but I haven't been able to figure out what the triggers are. As with most of us mine starts in the afternoon and progresses as the day goes on. By night it's nearly unbearable. I have Lupus and a lot of health problems so this isn't even something I've brought up to my doctor. After reading on the internet that there really isn't anything they can do I didn't feel it was important for her to know. The more symptoms you have the less it seems doctors want to listen. One doctor told me that no one can have so many things wrong with them. That made me feel better. :(

The only thing that relieves my pain is eating. Now that has created another set of problems. I've found that lukewarm foods with no spice or salt help the most. Cherry tomatoes seem to neutralize my saliva so I usually have a bowl of them beside me in the evening when it's the worst. It seems to be a problem with the pH in our mouth and maybe that's why vinegar also helps.

I wish you all the best.

I am only 19 years old and I have already been suffering from this for over a year now. I don't know what to do anymore. Yesterday the pain was so bad that I had to take a vicodin to relieve it. I have been to many doctors, and they all seem to be clueless about my condition. I cannot take the pain anymore, it is making me miserable. I want to just sleep so that I don't have to put myself through it.

Please please someone help if you have any ideas I would really appreciate it. All my blood tests came back fine when the problem first began, and the doctors say they don't see anything physically wrong with it, but that's because it changes how it looks and they see it when it is not bad. I can't live like this anymore.

like the rest of you,I suffered with this for almost 2 years. I've seen local doctors and saw 2 at Brigham and Womens in Boston.They gave me a "compound" mouth rinse and a lip balm. All treatments were topical.

One Saturday I was in such pain, I called my primary for a prescription pain med. He gave me Tramadol. That's a synthetic narcotic. It took almost 4-5 hours for it to work and the relief was minimal.

Two weeks later I called on a Sat. for a refill. Lucky for me another dr. was on call. He listened. I think he may have had my "chart" available. He said "It sounds like you need neurontin. I vaguely remember that because I'm not familiar with that med. He refilled my pain med.

Then Mon morning at 9 my primary office called. They said they had called my pharmacy and I should pick up the neuronton.

That med change my life!! I got it back!! The pain of fibromyalgia is near to unbearable. No more sitting on the sofa and crying, wondering how I will cope with ordinary daily duties. Luckily my husband was so kind and patient!

I called my dentist and the local dermatology drs. who said they don't treat BMS. Told them to try Nuetronton for their pts.
Now I'm on a crusade to run this med by any doctor who will listen. You needn't live in pain. No one should.

Peggy, I'm glad Neurontin worked well for you but for people with a reaction to it it's BAD, really bad! I only took a very low dose for two weeks over a month ago and I'm still recovering from a terrible reaction. Many people have problems with Neurontin so I would be careful about touting it too much. This has been one of the worse months of my life and it's not over yet.

Hello Alice, I'm sorry neuronton didn't work for you. I'm new on this med and was so relieved with the pain relief I wanted to share it with the world!!!

I take 200mg three times a day. I did suffer with dizziness the first few days. Also some drowsiness. But that was just the first couple days.
I also take tramadol 50 mg, three times a day as necessary.

My memory has been compromised. I'm sorry about that, but my husband is so happy to have me pain free
Makes me glad I'm retired.
I hope you find an alternative to neurontin.
Thinking of you... Peg

I'm a retired pharmacist. Please take caution wi anth the Tramado. Although the FDA has not yet deemed it an addictive narcotic, it is very addictive and can cause great problems to get off of. Also, this drug will increase some pain issues & the patient takes more & more not realizing the Tramdol is the cause of the pain.I've suffered with bms for over a year and have not found anything to get rid of it. A lot can do with silent reflux but even treating that has not helped. I will brief you more on the many things I've tried including neurontin when I get to my desktop and not via mobile. Prayers for all of us sufferers-we sure need them.

I thank KG for the support in saying that people have recovered from this. I need the hope because I can't believe that there is no solution to this problem I just can't believe that so many people have this and no doctor can pinpoint it. But here is my story.

I am thinking that about 9 months ago I was eating a LOT of sugar (I mean a whole bag of cookies at a time-don't know why) and was on antibiotics at the same time for a urinary tract infection and I could have flipped my flora. Because that is when the burning tongue started. Who knows.

I too was trying to rule out Candida, but it is the only thing that is still in the running for what is causing this burning in my mouth. For two months I cut out sugar (and I mean fruit, bread, even carrots) thinking this was Candida. EVERY doctor I went to said that I didn't have candida because they couldn't see any evidence of it.

I only had three weeks of Diflucan and that with the no sugar diet almost stopped the burning tongue. But I ran out of diflucan and NO DOCTOR WOULD GIVE ME ANY MORE. And the burning came right back. It also gets worse when I come close to my cycle. It (Diflucan and my no sugar diet) was the ONLY thing that had helped me.

I don't know if long term diflucan is bad for you, or if i even have a fungal infection or candida or yeast or anything. I have been to 10 (count 'em) ten doctors. 3 ENTs, 1 gastroenterologist, 2 homeopaths, 1 OBGYN, 1 Internist, 2 psychotherapists and my Dentist. ALL of them have no idea what would be causing this. I have had a complete blood count that says I am normal in every way. I have had B-12 shots, Taking vitamins on and off because i just can't wrap my mind around what I a trying to accomplish and how.

I do have to say - I really don't eat many sweets anymore and my mouth does not burn the way that it used to BUT it still burns. The tip of my tongue, the front of my lips and the roof of my mouth. I have found that keeping my tongue separated from the roof of my mouth keeps the burning to my tongue (I have a retainer that I use from the time that I had braces)

I am hoping that this helps some one and if anyone has suggestions or God-willing and answer, please let me know. I will keep you posted as well.

Lis and others.

I had a mild case of BMS several years ago and was referred to an oral surgeon who dealt with this issue among other things. ( have you tried various dental specialist? ).

I was prescribed dissolving tablets of clonopine ( or klonpine) and it helped. I take it at night .5 mg. although I did go up higher at one point.

I am going to my dentist shortly - will see what she says and recommends. I can try clonopine but I really want a solution not a bandaid. Right now menthol lozenges work quite well - I just don't want to have to be sucking on them the rest of my life.
Thank you for your suggestions will keep all posted on my condition and what I find out.

:)

I have used a compound mouthrinse for the past couple months...it's clonazepam plus sordid. I rinse twice a day sometime three times for 3minutes. It has relived the burning minimally but any relief is better than none. My pharmacist said he could put another compound together that might help even more. It's. clonazepam 0.25 MG. TROCHE. Basically it's a small caplet that I dissolve in my mouth from one side to the other for three minutes and not eat or drink for a half hour after. I just picked it up today and will keep you folks updated.
I am hopeful, very hopeful. Nancy

I was diagnosed with Parkinson Disease in 2006 & have been taking Carbidopa/Levo (25/100TEV) ever since. About 3 years ago I started to feel like dental floss was stuck between two of my teeth. My dentist was unable to see any sign of it there. Since then I have about 4 places that feels like dental floss is caught in my teeth. My dentist again said that she was unable to see any sign of it. She suggested that it could possibly be Burning Mouth Syndrome.

I have dry mouth from meds that I am taking. My tongue & lips are burning. Has anyone had a similar experience? It is very annoying and very real to me. Please let me know if you have any suggestions. I have an appointment with my primary doctor and also my neurologist next month so am going to try again to get some answers. I was told by a dentist on the web that it could be "phantom" sensation. I'm not ready to buy that idea.
I will be waiting for your responses. Thanks!

The lozenges have helped me more than anything I've tried before. Not. 100% but I would say 60%.. Don't know how long this will last for me and/you but good luck. Any feedback would be greatly appreciated. Of course, my dentist was happy to share the news with his other BMS patients...good pr
Thinking of all of you
Nancy

AliceB
So sorry neurontin didn't work for you. I guess I was so happy to be free of pain that I wanted to share it with everyone!!Well my dose has been increased to 3 caps 3 times a day.

I also take tramadol 3 times a day for pain. As the matter of fact I am due for a dose at 2 and it's 1 now. And I am more than ready!
Every treatment has been an oral med rinse.

Even Brigham and Womens hospital (well respected) in Boston gave me a mouth wash. I can't see how a mouth rinse you spit out can help.

A girl I volunteer with told me she took neurontin for fibromylagia. I guess that's the way for me to go...just find the right dose.
The dr who gave me neurontin just happened to be covering for my primary. I've never met him but I did send him a thank- you card!!
We'll stick together and share our ups and downs.
Peg

My bms has returned since catching a whopper of a cold. Has this happened to anyone? I just stumbled on this site and, I guess, misery loves company cuz I've enjoyed reading everyone's suggestions. Am going to try some of them.

Has anyone tried bio feedback for B.M.S. Also, has Acupuncture helped those few of you who have tried it for B.M. S. Feel free to comment back. I had BMS for about a horrible) year before it was diagnosed by a neurologist after going to every kind of doctor and dentist, most of whom had never heard of the condition. He put me on Neurontin and Clonozepam and they worked, for about 10 years. Six months ago, it came back, as bad as when it first began.

Seems l have become immune to the medication. I am seeing an oral specialist at a dental school, and she feels it has returned because of stress. The only stress I am under is worrying that I am going to have this horrible condition for the rest of my life!

Arlene, Accupuncture did not help me. I did write a couple weeks ago that I'm taking CLONAZEPAM 0.25 mg in troche. Dissolves in mouth less than 2 minutes and relieves the symptoms for several hours. I take 2-3 a day but can take 4 if needed. It is a compound prescription and insurance does not cover. I'd say it has made me 50% better. I'll take whatever I can get. Neurontin never helped my symptoms. How much clonazepam did you take?
nancy

Hello all. So I started experiencing a burning pain in my mouth about 1 week ago. I remember feeling this pain as if I had a drink of boiling hot tea. The sensation is all over my mouth, including tongue, roof of mouth, and lips. I can't eat anything without it being either rough in my mouth or it tasting like metal. My tastebuds feel like they have been wiped out. My mouth is extremely dry.

I went to the doctor and she said it could be from my acid reflux or from Vitamin deficiency since I recently turned vegetarian. She took blood tests and everything came back normal. She said to try omeprazole for 3 months to see if symptoms go away. Reading everyone's posts I'm afraid that acid reflux is not the reason for my BM. I am already taking vitamins on a daily basis and live a very healthy lifestyle. Do you guys have any suggestions as to find out what is causing it? Also, recommendations for toothpastes, since mine BURNS! Thank you!

cymbalta gave me a bad burning mouth when I would eat any thing it got so bad I could not even have cold milk in my mouth. Went off the med. & burning stopped after a couple of days.

I have just got on this blog site & have just been researching BMS as I used to get it off and on very mild cases for a few weeks then it would go away and not reoccur for many months only for the last 3 yrs. I now have a bad case of this since Dec 2012!

I have been researching natural remedies since I do not take prescription drugs as they mask the symptoms. We need to find out a better solution here. It is different for all of us depending in our health, diet, way of life etc... I am an active thin healthy person who has a good diet but some things trigger different reactions from mild to worse and you have to try different things that help you as an individual.

I have found High doses of anything is harmful. And with me Stress is #1 plus you have to drink lots of water to rehydrate. I have heard to stay away from citrus fruits, acid foods, mint, cinnamon, chocolate, sugar eat more of a bland food diet at first. Use Stevia for sugar it's from a plant source. Suck on ice, Eat more Alkaline foods too. Use Aloe Vera from the plant in your mouth, swish with warm water/baking soda mix even drink some. Try inhaling some lavender oil before bed its very calming.

I will try acupuncture next since drs have not helped me yet. Do the B vit s - CoQ10 but make sure it has Ubiqunol in it for better absorption. Don't buy the cheap one. Also I have heard low levels of magnesium, zinc or iron maybe a cause. It's a hundred different things for each one of us. Lets keep each other informed on what the best things to get this under control. Hope this helps some of you out there. Thanks to all

Help! Does anyone else have blisters (not herpes, fever blister, cold sore) but masses on tiny fluid-filled blisters on gums? After suffering for nine months, I was finally diagnosed yesterday with BMS.

I was taking Klonopin, trying to withdraw when it started. I read that Klonopin is a help, so I went back to my usual dose. Much of the pain quickly stopped.

BUT - my mouth is full of blisters and my gums are so swollen that I cannot even speak and be understood. Does anyone know a way to make the blisters and gum swelling go down or away? I need a job but can't work if I can't talk. I'm hoping someone out there has suggestions! Please let me know soon as possible. Thanks.

Hi,
I have had a burning tongue and now burning lips for almost a week now. My tongue has cracks in it and the taste buds seem raised. My tongue seems swollen and it is red. I take a number of anti-depressants including lithium and am post menopausal. I read one post from someone who attributed their BMS to lithium. Can anyone comment?

Cynthia
how much klonopin were you taking? I take .5 at night- the kind that dissolves and want to cut down but wondering if I should given your story.

clonopin has helped in my case so far - several years.

I just joined this blog site. As I have been reading all of these posts it seems to me that stress is #1 factor for me. I used to get it a for a few weeks at a time then it would go away after I would use an oral mouth rinse. Didn't even know what it was back then.

Well since Dec 2012 I have had it worse than ever before with more symptoms. I have always had the metal taste and dry mouth too and never really found out what it was until I started researching it more.

It seems it is different for everyone. I am trying the more natural approach first since I do not take prescription drugs. For this I am trying more vit b complex with C. It could be from deficiencies in vit or minerals. I also find it strange that it has been stated its more prone to menopausal women. Then why are men getting this?

Eat more healthy diet fresh fruits, vegetables etc., stay away from white foods like sugar which is one of the worst inflammatory things you can put in your body. Use stevia a product from a plant or organic coconut palm sugar. There are healthy websites on google out there. If you are sensitive to grains you can try sprouted grains which are healthier.

I found that if I stay away from cinnamon, mint, teas or coffee with caffeine I am better. Also al ohil is not good. Citrus is ok too just not a lot. Pace your self. Eliminate foods that you think worsen your symptoms then reintroduce them one at a time & wait to see if you get worse or better. I was taking a lot of Vit D and cut back and with the complex B vit my mouth has healed better. Other things have helped me are:

Start taking organic aloe Vera juice 1 TB spoon up to 2 when your stomach can handle it then increase a few times a day. Or apply topically on tongue. Eat plain organic yogurt or put some honey or stevia in it to sweeten it more. HYDRATE - Drink a ton of water, exercise,lowers stress levels. Try a good probiotic . Hope you all are getting some relief.

Joane, I take a high dose of Clonazepam. I've had very severe debilitating anxiety since early childhood and nothing else ever helped.
My dose is 3 mg, 3 times a day. (9 mg daily). I was cutting down when this BMS started, but I didn't make the connection. After reading that Clonazepam is one of the very few treatments used by the Mayo Clinic, I went back to my original dosage and the pain decreased dramatically very quickly.

The pain is manageable now that I'm back on full dosage, but the swollen gums and blistering that came with the first pain are just getting worse.

I haven't read of anyone else having this blistering and it makes me wonder whether I have more than one condition. It is very difficult to talk because of the swelling and blistering and I cannot find any mention of it anywhere, so I can't even begin to look for help for it.

If ANYONE has heard of blisters with BMS, please let me know!
Thanks and good luck to all of you.

I have had BMS for about two years. I am determied to beat this. Have not taken any medication. It is very wearing as you all know. I am telling myself I will be fine, do this often through the day, it releases endorphins and makes you feel good and lessens burning. This week I started to rest my tongue in its natural resting place behind my front teeth, concentrating on doing this helps me forget the burning and is making a difference. Before this l was constantly moving it around, probably adding to the problem and never giving my mouth and tongue a rest. Nibble on dates, they are great, almonds, strawberries, yoghurt.

Have done mountains of research on Internet. Have been chewing gum for months but recently gave that up. Read the book The Brian that Changed Itself and am convinced I can mentally get this healed. It is incredible that when you eat you feel normal. I eat my meals slowly and enjoy the feeling of being normal without my tongue burning.

Work hard at being positive, keep really busy, tell yourself you are fine, I firmly believe you can heal yourself of this terrible syndrome. I am working hard at being positive and it's making a huge difference. I cried and felt absolutely lousy for so long. It will not beat me. Try these ideas. Anything is worth a go. Cheers Robbie

I'm the person whose BMS disappeared, gradually, after stopping lithium. In the years since then I've started having problems with anthus ulcers and found that taking 1,000 mg time-release vitamin C makes them go away. Have no idea whether or not that would work for BMS, but I notice that no one has mentioned trying that.

I had the blistering on my lower lip. Soooo painful, and not very attractive. For weeks my bottom lip was so swollen and blistered, I saw my dentist, an oral surgeon and went to a teaching university, whom all said it was BMS, but could offer no treatment.

Finally a second trip to urgent care, tried zinc oxide (found in Desetin Diaper Rash ointment) smeared on my lips for a wk, actually helped clear the swelling and the blisters. By this point I didn't care what it looked liked, and took lots of wise cracks from co-workers telling me it looked like herpes. One doctor even put me on prednisone, which did not help. I have lived with BMS for a yr and a half.

I am in horrific pain more often than not. It was at the time right after my hysterectomy, and the start time of the sleep aide Ambien in which I developed the BMS. I have now stopped the Ambien for 3 days, and still have my burning tongue. I am hoping it works. I am willing to try anything once.

I have had BMS for yr and a half. Been to all types of Drs. and no one can help me beat it. From Magic mouth wash, Iowa mouth wash, and Nystatin swish, none of which have been helpful. I have recently stopped taking Ambien for sleep, as I have seen this could possibly help. I am also on Cymbalta and Gabapentin for fibryomyagia. Can anyone suggest anything? Thanks for any suggestions.

All of you with Burning mouth/Tongue Syndrome. I understand how frustrating this is - I have had this for almost a year. and have been to 10 doctors, all of which know little to nothing about what is happening.

I have a sneaking suspicion that is is candida or a fungus that is in my intestines. I, last year, was eating an enormous amount of sugar and when on you rounds of antibiotics. shortly after that my tongue started to burn. After asking everyone I know and reading a huge amount on the internet (most not helping) but grabbing a few tidbits here and there. I have found relief, somewhat fleeting but I think I might be able to beat this.

This is what I am doing:

I eat no sugar or carbs. (eat lettuce and other greens with fiber - I will needed it) but nothing packaged, no bread, certainly no desert. no pasta, no potatoes, and sorry people - no alcohol. You get the idea. (basically the atkins diet) or the paleo diet.

I am eating tons of plain whole milk yogurt, no fruit, not vanilla. I needed the cultures with the least amount of sugar.

Also (this is gross but I do it) Douche with the same type of yogurt. I have to reach my intestines and I have to get the fungus coming both ways. the Nystatin swish and swallow wont make it into my intestines so it doesn't do much. the burning is in the tongue but it is systemic (coming from your digestive tract and your intestines). Managed to get a doctor to prescribe the nystatin TABLETS 2 every 6 hours (or more if I could) for a month.

Taking good probiotic that come in my health food provider's fridge. I take a lot of that (like 3 pills two times a day-more on the weekends)

I am eating raw coconut!!!!!!!!!!! Love it. and it is an anti fungal. Surround myself with little bags of either no carb or low carb snacks - nothing with added sugar and plenty anti fungal treats, garlic, raw onions, avocado.

Regardless of how this sounds. I am thinking its the only way - I am half a month in. And I feel the burning much less. I will let you know if I beat this but I know ONE THING - I cannot live with this burning.

Your burning mouth might be for a different reason but I notice a difference whenever I go off the diet and eat sugar. My mouth BURNS. I know it is sugar related and Fungus lives off of sugar.

So good luck to all of you. it is not easy to stick to this diet but i had to make up my mind to get rid of this affliction. Oh and I lost 10 lbs. a nice little side effect of doing this.

Good luck ask any questions you want.

Lisa

Blisters with BMS - Can anyone tell me whether they know if tiny fluid-filled blisters in mouth are part of BMS?
Only the blisters are painful now, but terribly painful (day only).
The blisters are behind my front lower teeth.

They are a masses of tiny blisters that break and refill constantly.
The blisters and swelling prevent me from being able to speak by blocking my tongue. I was diagnosed with BMS. but I don't know now whether my symptoms match BMS.
PLEASE, SOMEONE, ANSWER IF YOU HAVE ANY INFO! I am getting desperate.

To Cynthia,

I have never had blisters with the BMS that I have. I think you should see your dentist or another doctor that you might have access to.

Good luck. I hope you find relief.

Cynthia,I agree with lisa. A second opinion here would be a good thing. There are many possible causes of mouth blisters.

I have had second, third, fourth and fifth opinions, my dentist twice, an oral surgeon and the oral specialist at the University of Minnesota, all of which none could offer much of anything. What has worked for me is the zinc oxide on my lip for the swelling, blistering open lip, and stopped the Ambien, and guess what? My lip is much better and am down to just a light numb feeling on the tip of my tongue. The burning has stopped. I will keep you posted.

BMS has put me in debt, and caused me so much pain. Mixing medications can cause many side effects, so I will eliminate one at a time and see what happens. Wondering if I really have fybromyalgia also??? These are terms for illnesses that they can't really diagnose, but are truly real and can affect ones life in so many ways. Just know that we are not all crazy and need pysc docs, find someone who believes that what you say is REAL.

It has been one week without the Ambien, and I am sleeping okay, using Tylenol PM and melatonin. The next medication I will eliminate will be the Cymbalta, and see if it really helps my pain all that much, and because it costs me 200 dollars a month to be on it. Good luck to everyone, and keep the different suggestions coming. It's nice to know that I'm not alone.

I'm another bms sufferer; have had it on and off for years. I'm a healthy 37 year old on no medication and cannot find any of the 'usual' reasons as to why I've been subjected to this horrific condition. It gets me very down and depressed. I've picked up some great tips from this site; thank you, I'm going to try a few. I found rinsing with baking soda 3 times per day helped and my bms disappeared for a few months. But it returned and the baking soda doesn't work any more. I can't think of any particular triggers that bring on a bout. The constant pain is so depressing.

I just thought I would update everyone that I am still BMS free.

However, I have in the last couple of days had a feeling it might be returning.

I had changed my toothpaste and shower cream recently so I have been stopping them one at a time to see if they might be the cause. As yet I don't have any answers.

I am though, now convinced, that my BMS is caused by the use of lotions on my skin and possibly toothpaste.

I am posting this in case it should help those of you who are suffering still as it would never have occurred to me that those products might be the cause of my BMS.

After reading some of the posts of this site I can see the making of a reality show. Everyone gather with their meds, foods, swishes,etc. I'm sure there is an audience for our attempts to rid us of this problem that even some doctors haven't heard of.

For Cynthia I would suggest she ask her doctor to take a culture of the fluid from her blisters. It may be a watery fluid, but could also be a bacteria. A colon probiotic may help, since digestion does begin in the mouth. I take one.

Currently, I am taking Neuronton and tramadol.
Maybe we can meet half-way...say Chicago?!

I almost forgot the most important thing for Cynthia.
I use METRONIDAZOLE 0.75% It's a lip balm that was given to me by a doctor at Brigham and Womens. It's very soothing.
It might be worth trying!

Back in November 2012, my doctor prescribed Vit. D-2 (not D-3) because I had a low level. I have never done this in my life but I misread the dosage and ended up taking too much too soon. As I finished the bottle about 9 days later, I started having symtpoms like I had burned my tongue from drinking something that was too hot. I researched it online and found that this (BMS BTS)is an actual "syndrome" for way too many people. I was terrified I was going to have this for life. I also researched if there was any link in elevated Vitamin D levels in the body and BMS. I remember seeing a little bit about it online but not a definitive answer. After I realized I took too much Vitamin D, I asked my Dr. for a blood test and it went from 23 (I think) to 62 in a real short amount of time. They assured me I had not O.D'd on it. But to me, there was too much coincidence in the timing of taking too much and the start of BMS. Vitamin D from what I understand is a fat soluble vitamin and is stored in the liver if I remember correctly. So, I knew it would take a while for the excess to get out of my system. Over the last 5 months, I would have bad days and better days but never normal days. My mouth was also excessively dry. I use Biotene toothpaste and the mouthwash and I feel that they help. For whatever reason, although I suspect that my vitamin D levels have returned to normal. My symptoms in the last two weeks have almost abated completely. No more burning sensation, but my mouth is still a little dry and I rarely think about it anymore. However, I still don't drink my coffee as hot as I once did and do not use those Listerene breath strips! I know we need Vitamin D - especially as women to help absorb calcium. Looking at all the posts, I feel for everyone here but wanted to share my experience in case it may give someone a "lightbulb" moment. I see a lot of prescription medicine posted that everyone is taking. Also check to see if perhaps you are taking too much Vitamin D. I'll repost if my symptoms return andshare my vitamin D. level when I get it rechecked in the future. Best wishes.

Thank you kvan321, For sharing your information - at this point I don't know what to do but i appreciate everyone who is looking through this and sharing their experience. Honestly kvan321 - I hope your BMS never returns. SO happy someone found relief even if there is no definite answer. We'll find an answer I just know it.

Thank you again.

Thanks to everyone who commented on my question about blisters inside my mouth. Re-reading all the comments, I see that no one else has these blisters.

I must have some other unknown condition and not BMS.. I recently sent a saliva sample to be tested, but no results yet.

My nutritional counselor suggested the saliva test. All my doctor did was say off-handedly, "Never seen anything like it", and sent me away without any suggestions.

I don't know why this isn't being given attention by the medical profession.

I'm having to isolate myself because of the difficulty speaking and can't have the life I had before. Most of my time goes to doing the small tedious time-consuming things that give a few minutes relief.

I wish you all the best and hope with all my heart that there will be help for us.

I have went through BMS for over a year. I tried every vitamin, hormone, pain med and all any of it did was make my stomach sick or cripple me to the point I couldn't get out of bed.

I found a dentist that has helped me more than anyone. I have eliminated all vitamins, hormones and meds except for my synthroid. I have to take synthroid due to thyroid cancer and the removal of my thyroid.
The dentist has removed all metal from my mouth. Fillings and I also now have a partial made of all plastic.

He started me on a regiment of 8oz of real carrot juice (the Lakewood brand in health food stores has the best taste) and I had 1/8 tsp of Ginger Root Juice. You can get the ginger root at any grocery or health food store but if possible ask the health food store to squeeze the juice out for you. It's very hard to get juice from the root but if you can't find anyone with a processor then peel it and squashed it through a strainer. 1/8 tsp is not a lot. I have been doing this regimen every morning for about 2 months and I am almost completely free from BMS.

I no longer take any stomach meds and my stomach does fine. The longer we take stomach meds the more damage it is doing to the Flora in the intestines. Most mouth problems are caused from the gut. If you will pooch your lips in the mirror you will see a great resemblance to the other end of your bottom.

When my BMS started, I had just completed a round of a Z pak. I had also been on Omeprazole for a number of years and Vit D and hormone replacement. Granted I live hypothyroid but this is not the root cause.
Stress does flare up the situation but when you think about it, stress causes stomach issues, ulcers, etc.

Please try eliminating any pill that you do not have to have to live. I have to have synthroid but I can live without the others. Our western medicine is all about giving pills which generally cause us more problems.

I am a veteran and I get my medical care through the VA at no cost for me so I have utilized every specialist available to help with this problem. I don't receive dental care at the VA so I went outside to a dentist. Actually, I went to 3 dentist but the 3rd one was the most honest and concerned. If not for him, I would still be living in agony.

I don't know for sure that the metal partial or the fillings were causing any problem but when you think of having any metal in your mouth you have to be absorbing some effects from it. So again, get all the metal out of your mouth. Get rid of all pills that are not life saving. Drink 8 0z of carrot juice with 1/8 tsp of ginger root every morning and I hope you will find the help that I have gotten. Think about the gut, not the tongue. as for the blisters someone mentioned. I too had tiny blisters that felt like the were popping. Please focus on the problems with the gut and digestive system and stay away from adding more pills on top of pills. I hope this helps, it sure has helped me.

Thank you Gooze,

I have given up on all "treatments". SOmetimes I feel that I have hurt myself with all the anti-fungal pills with still no relief from BMS. I will try your remedy and even if it doesn't help I am grateful you shared your experience. It brings hope. I, too have had MBS for about a year and my story is similar. so here goes - and a I will share my results. Thank you again.

Also I wanted to ask Gooze,

Any other dietary restrictions - I am been mostly sugar free - does that matter? SHould I squeeze my own carrot juice seeing as how I am squeezing min own ginger root? I did get the lakewood carrot juice and have started my regimen today -

Can I still drink my one cup of coffee in the morning or will that hurt the process. And other recommendations would be appreciated.

thank you again.

About five years ago I was put on a medicine called kenalog in orabase form for a harmless condition called geographic tongue. It was a steroid applied directly to the tongue. I immediately developed BMS and I was mad because geographic tongue (white lines on your tongue) come and go and don't cause any pain or harm. It took four years for the pain to subside and none of the medicines I was given seemed to help.

The Pain went down from a 10 to a 2-3. A few weeks ago I went to a different Dentist than my primary and they replaced a filling for me. Since then the pain has gone back up to a 10. It is unbearable. I have spent every day wishing I hadn't gone to that Dentist. The burning is in my mouth, lips, tongue and even throat. My regular dentist replaced their filling but that hasn't helped. I am miserable 24 hours a day. I can't sleep without Ambien and I have lost weight since this started again. I am about to see a Neurologist who will put me through the battery of tests some have described.

to gnr...it's interesting you wrote this because I have been a victim of BMS for 5 years. We recently went on vacation and on top of burning mouth I ended up with thrush. I was put on a couple meds. that relieved that but I knew something more was going on even with the burning mouth. 10+10. I went to see an ENT when we got home after I took the meds. for thrush. He told me I definitely had a problem but not thrush. Now I had geographic tongue.

Of course I never heard of it but after researching it I understood that was what was going on in my mouth (plus burning mouth). He gave me a dental paste as well, (rancid) called triamcinolone acetonide... if you rub it in it ends up acting like grit in your mouth. It felt more like plaster to me and took about an hour to kick in. It has been a week and I must say it did relieve the symptoms and the redness and swelling has gone down. The BMS is alive and well.

I am scheduled to see him again this week and he did say let's take care of the geographic tongue before we try something for the BMS. He also told me he has treated BMS patients in the past and there might be something that will help. I am relaxed and have had a decent weekend with no stress factors or emotional issues and have the BMS big time right now.

I don't want to hear one more person tell me it is in my head and stress triggers this condition and/or patients sometimes come down with this because they are seeking attention. I think I'd tie myself to the RR tracks if I was looking for attention. Trying to keep a sense of humor with all of this! I will keep all posted if anything comes out of this next visit. I feel your pain and any others suffering from this curse.
nancy

Hi everyone, I Am still BMS free.

I have noticed that intensive moisturised shower gell set my mouth off as well.

There is also news today on BBC suggesting pregnant women should be careful about using some moisturising products.

http://www.bbc.co.uk/news/health-22775024

I am not surprised by this, to me it all add up.

I hope those of you still suffering get well soon.

To KVAN321 - I also was taking Vit D3 1000mg every day 7 days a week. Was too much. After I stopped taking this and everything else plus doing a 1 month food journal to check what I was eating and noting what my symptoms were, The Burning stopped, mouth numbness and blisters went away but, and I do still have the dry mouth. I reintroduced things and now know what works and what doesn't to agitate it. Others may have food sensitivities and allergies. Here is what helped me: Plain yoghurt, greek is best - NO sugar products, Good diet, probiotic, lots of fruits, vegetables, unless they react (Avocados work) - No spices like garlic/vinegars/alcohol/coffee/tea with caffeinne- drink decaf if you have to. cinnamon/mint/peppermint etc. I started on this:
Vit B complex 100mg per day - has all the B's in it. A liquid Cal/Mag/Zinc (MRM) and a Calcium capsule MRM brand with zinc/Vit K2/MK-7 in it & also small amount of VD3 but I only take one cap not 3 as I get calcium by eating healthy plus the liquid one. CoQ10 with ubiquinol as that is better than ubiguinone kind. Get liquid to swish around in mouth than swallow I take a capsule CoQ10 also in eve with Ubiquinol amounts up to 400mg with both. Aloe vera gel or liquid everyday, a probiotic with over 16 strains - don't rule out the gut/intestine health. I also drink 1/2 organic lemon to 1 cup warm water in morning it is alkaline and helps your digestive system juices work better. Only if you can tolerate lemon. Whatever I am doing it has been working for me now. Grinding teeth is a sympton of dry mouth and can exagerate the BMS so I wear a night guard from my dentist.Use the Biotine toothpast and rinse. Exercise PLENTY OF WATER!! & Don't stress - I will continue until things change. Good luck to all.

Lisa,
I had a saliva test that showed out-of-control candida. I have only blisters on my gums - the rest of my mouth is OK. I'm on a strict anti-candida diet and a multitude of supplements/natural medicines that are SO expensive, but if this is caused by the candida, I need to do it anyway.
Also - at the beginning (last year) my whole mouth was on fire all the time. I went back to my usual dose of Klonopin and the pain stopped instantly. I use Spry xylotol gum to cover the blisters behind my lower front teeth and this has made it possible to speak coherently again.
Good luck to everyone.

I'm so sorry to hear how many people are suffering from BMS! My husband developed it 6 yrs. ago after having neuromas in his feet and having surgery. He has terrible foot pain and is on Methadone, but has been on several other strong pain medicines over the years. He also has tinnitus. They believe he may have a nervous system problem, since he has several areas which all seem to be tied in with his nervous system.

He has been taking Ambien for years, so it could be a culprit as well. Unfortunately, he takes a lot of medications, and its hard to determine which might have contributed to the problem. His neurologist prescribed 3 medicines that she has found helps most of her patients with BMS. Neurontin, Clonazapam and Cymbalta all seem to calm down the nervous system, but do have side effects which include some memory loss, and sleepiness. The dosage can be adjusted according to what your body can handle.

I believe the Clonazapam helps him the most, and he takes one .25mg tablet in the morning and one at night. It's better if you can take only one at night, to have less sleepiness and memory loss during the day. My heart breaks for you all including my husband, and I pray we will all find some answers soon. Thanks for sharing your experiences!

I'm also searching for relief from burning tongue and think it is the Ambien. The reason that I'm writing to you is because of your other symptoms. I also had MANY symptoms of your symptoms. I saw 8 different doctors all trying to focus on their area, but no one taking a global look. I had a lot of muscle weakness and generally had no strength. I was progressively getting worse. Then, I had mysterious joint and ligament issues. For a while it was adhesive capsulitis of the shoulder. Then it was plantar fasciaitis for my feet. I also had TMJ. I had lower back pain. My left hip would freeze up. They all had different names, but they were all the same... muscles, joints, and ligaments not working together as they should.

I tried all of the nerve medicines... the deadened somewhat but did not fix anything. Sleep is important... which is why I took the Ambien. This had been going on for years. Finally, I saw an immunologist who put it all together. I have something called mitochondrial myopathy. Basically, my cells are not processing nutrients and sugar in a way to get enough energy. This caused muscle atrophy, which eventually caused all of the joint issues. I had a muscle biopsy to diagnose (not fun) but it shows exactly what's going on inside the cells.

I now take 40 supplement pills every day. To try to find the cause of the mito, I had food sensitivity studies done. I am sensitive to beef, wheat, corn, rice, eggs, and dairy. I cut all of these things out (again, not easy), but I slowly got better. I feel like a new woman! I'm exercising again and am starting to get off Ambien. I'm finding that the tongue burns more on the days after I take it. I think that now I'm going to be done with Ambien for good. Hope this helps you.

Hi gnr You mention you had a filling replaced. Did your dentist give you silver (mercury) amalgam or a composite filling? I too have burning mouth and am working toward having my fillings replaced with composite (I have 15). I have many friends whose health has improved remarkably since replacing their fillings. You may be mercury toxic or even allergic according to my research. Acids and heat aggravate the amalgam and increase the release of mercury vapour. Mercury is a poison.

ALA (Alpha Lipoic Acid) is known to be a heavy metal chelator and may be the reason people who dose themselves with it are having relief. I really hope this is my solution! Then I'll need to repair all the damage years of mercury vapour has caused.

Hello all. I've had BMS for three years. What a life-changer. I've lost forty pounds and have trouble talking. Eating and talking are the worst. I had bleeding gums, so brushed my teeth and used mouth wash to get rid of that. It worked but I think all those chemicals destroyed my tongue.

The papillae (hairs on your tongue) are always inflamed and furry on my tongue, especially in the groove down the middle. However my tongue hurts everywhere making it hard to eat or talk. I eat mostly bland soft food and raw veggies at the end to try and clean my tongue a little. Otherwise food gets packed in the papillae and gives me a choking sensation.

My tongue looks and feels horrible. Hard to talk and eat and just hurts constantly. I've gone to lots of dentists and doctors and have tried many prescriptions and cut out many foods. Anyone have any suggestions? I'm 39 year old male and in good health otherwise. Help!

I should have written sooner in regards to my taking Zinc supplements. I have been taking Zinc for 6 months now and I do find it helps with BMS. I noticed a difference within 1 month, it is not completely gone, there are days where I do not have any BMS, and days where it is bad and on the bad days I eat olives and rinse with the olive juice (vinegar) and it usually helps to reduce the burning.

For many of you the vinegar aggravates but for me it helps. I did cut back on the Zinc for about 2 months, I would take 1 every other day and about 3 weeks ago the BMS started to intensify so I am back to 1 Zinc tablet every day and the BMS has eased. I hope this info will help some of you who would prefer more natural treatment for BMS.

I have had BMS since Dec.1212 I am 80 and am Diabetic and take several meds including neurotin, synthroid Januvia , Metformin . So far I have seen my primary Dr. ENT dr and was referred to a Derma. [skin Dr.] I have my doubts about seeing him. My whole mouth is in pain and eating is a nightmare. I drink lots of water and eat very cautiously. I pray for all of us to receive a cure or relief.

I've begun to give up completely. As I said earlier my BMS returned in May after a re-filling of a top back tooth.It had never completely gone away but over a period of five years it had gone down to a tolerable level.Last week I made the mistake of eating the spicy quarter pounder habenero burger at McDonalds and since then my pain has gone back to an unbearable level 24/7.

I am on cymbalta, abilify, valium and an anti-seizure medication that starts with a T that has been shown to treat BMS. I am also on prescription B-12 and Vitamin D supplements.

I'd love to stop taking the Ambien to see if that makes any difference but I don't know how I will sleep without it.

I may start the Alpha-Lipoic-Acid though I only see it in 200MG doses, would I just have to take like 10 pills at once to get the dose people on here speak of or would I have to get a prescription for it?

I have been reading everyone's BMS problems and I have to say be very watchful of lip glosses, lipstick, lip liners, etc. As one of you wrote that a particular face cream was causing the BMS to flare. I have had it for about a decade now and about a year ago I realized that anything on or near my lips caused my mouth to BURN! Face creams can make it into your mouth if it's close enough, so be careful and watchful of this. Experiment with not wearing anything on your lips vs. wearing lipstick, etc. I have always been a lipstick and lipliner fanatic, always reapplying throughout the day and until my best friend starting having this same problem a couple of years ago, I never thought about creams near the mouth and the lip cosmetics! I also have escalations in discomfort when I eat acidic foods, so be mindful of food's acid levels. I hope this helps everyone or at least someone out there!

About a month ago I got BMS, I immediately went online and read everything I could about it. I started taking vitamins and minerals and praying that God would heal it. Very soon all the symptoms disappeared and I was back to normal. But a couple days later, my daughter's tongue started burning and now she has BMS. Has anyone had the experience that this is contagious? Everything I have read says BMS is not contagious. I don't know what to think of this.

2 months ago the tip of my tongue began burning. I went to the doctor (my doctor was on vacation) and she said come back in a month if it doesn't go away; that it could be caused from stress or vitamin deficiency. I was under tremendous stress. Over a month later it was a bit worse. I saw my general doctor and she ran blood tests. Labs were fine. She sent me to an ENT doctor and they swabbed my tongue. She gave me a combo of medicines called Daniel's Cocktail. It included Benedryl, a small amount of an antibiotic and an anti-fungal drug. It worked for a second but then did nothing. My swab results showed Candida. I was so happy there was a REASON for my burning tongue. I returned to see another doctor (my doctor was on vacation...yep, guess doctors need vacations too..lol), and he said we all have yeast on our tongues. He said I have burning tongue, gave me anti-fungal rinse to try (which I'm almost done doing without success), and told me that if that doesn't work (plus 3 Vitamin B12 shots), then he has nothing else to suggest, except read the internet and see what people say. Ahhhhhh! I am beside myself. It's difficult to socialize. The inside of my lips are so dry; they sometimes stick to my gums. I teach and am finding it very difficult to read stories with the children. I am grateful to find this forum and hope we can all find an answer.

Can't believe there are so many people out there with this horrible syndrome, there must be a cure somewhere, but I'm thankful to have found this site and your shared experiences and things to try. My BM only started about 1 week ago. recently had 2 teeth extractions, prior to this I had an inflamed incisive papila almost constant for a few months-anyone else have this? This is the small bump at the back of your two front teeth. My dentist has commented on this inflammation but didn't give any advice. meanwhile had these two teeth out left hand side one top and one at the bottom near the front, both where difficult extractions I grind my teeth in my sleep and had cracked one in half and the other one was a crown removal gums very sore and jaw at the moment to.

I also have TMJD which has been aggravating me now since the extractions. Now I have been left with this BMS pain which starts gradually to get worse as the day gets on-just like most of you. I'm currently trying the ALA and B12. (Only started today, so early days) plus doing the Bicarbonate of Soda rinse, going to do this first thing in the morning and last thing at night. may also try to drink some first thing in the morning and some posts suggest possibly related to stomach acid-so worth trying.

A few of my other teeth hurt off and on similar to tightness or pressure this comes and goes. I wondered if the extractions have brought on the BMS-but some posts I've seen indicate a lot of people have this syndrome now after dental work. I'm hoping either the nerves may settle soon and the BM will go, or the supplements I'm now trying will make a difference. Like I say early days, will keep you posted. so grateful to be ale to share this nightmare with fellow sufferers,Please keep posting your experiences and treatments to try, this is all we have.

I just wanted to comment that the reason why so many people are mentioning Ambien as a possible cause is bc so many people are on Ambien. I have been on Ambien forever and since my BMS just started a few weeks ago, I don't think it has anything to do with it. Also, I take neurontin for something else & it doesn't help with BMS.

Hi I had BMS too, saw all the Specialists but I cured it with eight glasses of water every day it increases your HCl acid and lubricates your vagus nerve don't forget your vitamin D and B 12. ,6 , and, folic acid. Never drink water when eating always before or after meals, lots of fibre to remove bad estrogens. good luck.

I have BTS for several months now. My lips are very dry (inside my mouth). I get a yucky taste plus have tingling on the tongue. Occasionally my tongue and mouth burn. Since before this began, I was feeling more fatigued. I mentioned it to my doctor who checked my thyroid levels. They were normal. The fatigue has continued. It's almost like I feel sick, without being sick. My energy level is not up to par. Has anyone else experienced this with BTS?

Dear FG,

This is exactly what happened to me. I had everything checked, thyroid, hormone levels total blood count, etc. my OBGYN has just gotten me an appointment with the center for infectious disease in my home town (Syracuse) beginning of September. We (her and I) think it is a fungal infection. Some women get thrush while breastfeeding. We think it is like thrush but it is in my intestines. so Diflucan works but as soon as I stop taking it the burning comes right back. It burns worse when I eat anything sweet. Does this sound familiar??

I had your exact same symptoms. Fatigue, sore throat, sick but not sick. Then the burning started. I have been checked for everything else - I will let you and everyone else know if the people at infectious diseases can help me. Not that I can infect other - just that I am infected some how.

Will post results. Best to all of you!

Lisa,
Thanks for responding to my comments.
If you have systemic candida, a diet of protein and veggies, plus strong candida supplements are in order. I went on this diet as well but my doctor thinks the candida is only in my mouth and is prescribing a mix of meds which she said can take months to work. Yeast loves sugar, so I am staying away from all carbs, fruit, and dairy. It's NOT an easy way to eat (I've even lost weight) but if it helps in the long run......
Best of luck Lisa!!!!

I'm afraid to eat so many foods now.I would have thought I'd have learned my lesson about spicy foods but last week I ate a cheddar habanero bagel and the burning is worse than ever. This flare-up has lasted over a week now and I'm really scared. I may try getting off ambien and taking Alpha Lipoic Acid.

Hi everyone,
My BMS came back, it's been a couple of weeks now, I hardly use moisturiser any more which was the original cause, I wondered about potatoes as my dental nurse has BMS and can't eat foods from the nightshade family of foods.
Sure enough, I cut out the potatoes and it more or less went away, it seems to take several days for it to subside completely.
I do not stick to the same shower gel every day, I have two I think don't cause me issue but if I use them continuously the BMS flares slightly. Complex vitamin B worked for me last time I had it and I had cut down on taking it but am going to take it again to see if it helps.

Did the Diflucan work? Was it a fungus in your intestines? Are you free from pain? because this is what I have and I have had it for a year and a half.

thank you

hi have had bms for about 7 months. I recently found out that I have gallstones. has anything helped for you? I just started taking something for acid reflux and so far it has helped a little.

hey everyone,
I am so glad I found this website!! my BMS started when I was 9 months pregnant with my 3rd daughter. I have found some relief. I live in Canada so most of my health care is covered so I have tried a lot of things. 1st off I have hypothyroid, but do not think it is connected. I also found out that I have gallstones. My tongue typically hurts on a scale of 1-10 (10 being the worst) 9/10. But for 3 days now I have been on Ranitidine for acid reflux even though I never really had symptoms of acid refux.

My ENT believes that the acid can come up the back of your throat and burns the nerves of the tongue, which actually fall far back into your throat. I am hoping this is what will cure mine because it's terrible!! I just want t read my girls a bedtime story without pain. Anyone else have something similar and found relief with reflux medications!!

thanks so much!!

I've just scanned this entire site and I have to say this is so frustrating and I certainly don't feel very encouraged by the posts! I've been suffering for over 6 weeks and to see people having this for years is down right depressing! I started with diflucan and no relief. Then I saw my ENT and he said burning mouth syndrome and signs of acid reflux so I'm on meds to stop acid production for my GERD with very little improvement. I've tried avoiding all the acid foods...nothing. I've rinsed my mouth with milk of magnesia, antacid + benedryl, antacids alone... relief for less than an hour.

I've increased my water consumption. So I'm going to quit taking my blood pressure medication starting tomorrow... with my doctor's permission to see if that makes a difference. And I'm going to try that carrot juice and ginger root. Can't hurt! And perhaps add some clonazepam during the day time.

I totally understand how you feel Bcsho. Me too - I have had this for a year and a half. Some things have sort of worked but not enough to get rid of it. Diflucan did work but before I took it I stopped eating all sugar. I mean all- no fruit bread rice, anything with sugar or carbohydrates. (not so easy at first - everything has sugar in it). Then after a week I started taking Diflucan daily. after about 3 days the burning went away. I only had a 7-day prescription so once I stopped the Diflucan the burning came back.

I really don't know what it is - I keep thinking it has something to do with a fungal infection in my intestines. I have been to 12 doctors and none of them seem to think that is it. but they don't know what it is. Very frustrating.

I am going to see another doctor (internist) to see if we can figure this thing out - I will tell him what worked and what hasn't and see if he will work with me. ANYTHING I find out I will post here. I hate that we all have this an nothing can be done about it - I just don't understand.

BTW I think all of this started by taking antibiotics and eating too much sugar. (I was craving sugar at the time and taking antibiotics. (I mean eating a lot of sugar-unreasonable amounts-and I was thin to begin with) So I might have done this to myself. But I think there has to be a way to reverse it.

Anyway will keep you all posted. Good luck and don't lose hope.

Best to you,
lisa

I am very glad I found this site. I have had Burning Mouth for 4 years....I have been on several medications, gabapentine, neurotin, lyrica, just to name a few... Nothing has worked. I have had 3 injections in my face, Naseopalatine Blocks, they did not work either..... My Neurologists took me off all medications as has the Pain Clinic I go to... I only take oxycodone and my pain is 24/7. I keep being referred from one Doctor to another because no one knows what to do with me.... My pain is a 10 EVERY day.... I sleep when I can... actually, I think I finally pass out.... I am so very sorry for anyone diagnosed with this horrific disease.... Lin

I have an update since my first post May 17, 2013. I do still have symptoms that come and go. I was actually feeling really good this week but on Tuesday I ate a snack (peanut butter filled pretzels from Kroger) and I immediately started with symptoms again. I have eaten them before many times with no problems so either a coincidence or a food intolerance. I also wanted to point out that I am trying to track my symptoms to see how they correspond to my cycle (sorry guys - this won't help you) and even though I haven't been able to completely pin point it, there does seem to be a connection to where I am in the month in relation to my cycle and how bad my symptoms are.

I have also researched the three nerve bundles that supply the tongue and what area/function they are responsible for. I suggest doing some research there online for everyone...at the very least - to educate yourself about the mouth/tongue. Continued best wishes for all.

anyone out there with burning mouth syndrome that is also hypothyroid and taking synthroid? I'm starting to think it might be from the pill. If I miss a dose I seem to feel better. The symptoms started shortly after a dosage increase during my pregnancy and has not went away.

I read an article that said to "keep my mouth busy"...chewing gum seems to give me relief. I tried several of the same things you did with no help. I have a lot of chemical allergies/environmental allergies which, it seems, the general consensus is, the result can be BMSoblem and I can tell it's true. When I do the things I know I'm allergic to, eat the wrong thing or get near perfume or whatever I'm allergic to, even the odor my computer gives off when it runs, even though the average person would never notice nor detect but MY body seems to know it and plastics, whether I can smell them or not, bother me terribly. I just started trying Vitamin B12 and Clonazepam and I do think the clonazepam helps some but not as much as some people have said it helps them. Everyone is different I guess. I've had this for about 12-15 years now, I forget, it's been so long and is actually quite debilitating, I'm so miserable.

Any help anyone can suggest would be great. Thank you Karen

10 years ago I suffered with BMS, and I mean I suffered, to the point where it was ruining my life.
This lasted for approximately 18 months. Although it was there every day it was not all day. I would wake up feeling fine, then by mid-afternoon it was horrible. I remember driving home from work with the right side and tip of my tongue burning so badly I wanted to stick my tongue out of the car window (I can laugh now but not then). By 7 or 8 in the evening it subsided and was gone by late evening, thank God. Same thing with very little variation the next day and the next.......

I had a Dr who had no answers, no surprise I knew it was an odd concern. One of the things that saved me was: that even 10 years ago there were millions of people who suffered from this condition. I decided I wasn't insane, this helped a little. I read about drugs (powerful ones like anti seizure drugs) however, these can be life altering drugs which seemed to be ineffective for most people. One thing that kept popping up was the use of "hot peppers", this sounded ridiculous, I had been spending my last year avoiding spicy food.

I still remember waking up on a Sunday morning with my tongue burning, this felt like the end of the world. I could no longer count on having a big portion of the day pain free.
In desperation I drove to the store and brought a jar of hot peppers, went home and chewed on one immediately, pain was gone.
I had to use the peppers maybe 2/3 times over next couple of weeks then a few times over next couple of years.

So I did some research and learned that: hot peppers are the main content in Capsaicin cream. I remembered that when I worked at the hospital this was what we used for amputees who suffer extreme nerve pain at the amputation location.

After I did some more reading on the subject I found a reference to possible nerve damage following dentistry. Prior to the onset of BMS I had some dental work done........ Interesting.
I now use capsaicin (or if I'm out of it cut open a hot pepper and rub on my wrist for carpal tunnel). It works for me, it also works on my arthritic knees.

I just hope I can help someone out there with this horrible problem which is intensified because it's so hard to explain without feeling like a crazy person.

I have had BMS for almost three years. Have had consultations with my practitioner, dentist, referred to a Dr. of Internal medicine and a neurologist ran a MRI with nothing showing up. The burning starts as soon as I get up in the morning and progressing to extreme burning by latter part of the day.

Chewing my meals seems to distract from the burning and I chew gum constantly to keep the gum moist. A couple of weeks ago when chewing gum I pressed the gum on the roof of my mouth with my tongue while sipping on water. It felt better having the roof of the mouth covered with this thin surface of gum, so now once I chew the gum in a workable texture I press it on the roof of the mouth just behind the front top teeth and it gives me some relief. Call me crazy, but it works for me. Willing to try anything at this point.

I take Lysine it speeds up the recovery. I take 1200 MGS a day can take up to 3000 mgs a day.

I've had severe BMS for the past 3 months and just recently was advised by my Doctor to try zinc lozenges for relief of my BMS pain. I immediately went out to my nearest pharmacy and while looking for lozenges discovered a zinc cold remedy spray which I decided to purchase rather than the lozenges. Needless to say, the last thing I want to do is to suck on a lozenge and make the roof of my mouth feel any more raw than it already is!!

I've been using the zinc spray now for several days and am excited to say that it has provided me with amazing relief from the horrible burning sensations. The zinc spray gives me several hours of relief after each use and comes in a small 1 oz bottle which fits easily in any pocket or purse.

For those of you interested in giving the spray a try, The spray can be purchased at most pharmacies under the product name of "Zicam cold remedy oral mist" or at CVS under their own name as "CVS zinc cold remedy oral spray. The spray can typically be found in the cold medicine aisle of the store and costs anywhere from $10 to $14.

Best of Luck and would love to hear if the spray works for you!

Hey everyone, so I have posted on here a few times. I just wanted to share with everyone that my tongue is starting to feel better. It even looks healthier. It turns out my hypothyroid was causing my symptoms. I feel so much better. The pain is now a 2 out of 10 compared to the previous 9. It took me 7 months to get my thyroid levels good after having my daughter and I feel great. Everyone should ask their doctors to test their tsh levels. A lot of my weird symptoms went away in the last few weeks since changing my dose. I am hoping that this will help at least one person because it is not fun having a sore mouth and I hope everyone finds there cure. Good luck!!

Hi,

Sorry to hear that so many others are suffering from Burning Mouth Syndrome. I have had it for about 5 years. It started immediately after having had a bad reaction to a medication. The front half of my tongue feels as if an iron is sitting on it. The strange part is that it is worse if my tongue is "touching" other parts inside my mouth. If I could just hold my tongue away from the other parts of my mouth all day long, it would help, but it's just not possible to do that. You have to close your mouth sometimes and let things touch.

The other weird thing, which I haven't noticed anyone mentioning on this thread, is that WHILE eating or drinking, it does not hurt. Chewing or holding food or water in my mouth is a wonderful release of pain for a couple of seconds. It hurts immediately AFTER, but not during. Which means that I am constantly stuffing food into my mouth because it feels better to do that for a minute or two, and I am drinking something all day long. Needless to say, I have gained weight because of this.

I have tried all natural things to try to relieve the BMS. I haven't tried any prescribed medicines, because I also have Fibromyalgia and have been through the gamut of medicines once and refuse to do it again. So, yes, I have tried the zinc, Alpha Lipoic Acid, Folic Acid, B-12, B Complex, B-6, progesterone cream, and several other supplements that were mentioned above. I take Neurontin for my Fibro, and that doesn't cut the mouth pain at all. I knew before I came to this page that I am stuck with this the rest of my life, but your posts were all very interesting.

Thanks so much to everyone for taking the time to let us know the things that you have tried. The worst thing about this pain is that it is debilitating -- it is so severe it just totally takes away my ability to function and to think. It gets worse as the day goes on, so that by night I am ready to curl up into a fetal position, and tears can come easily if I don't fight them off. I find that the only time my tongue is not hurting me badly is when I am talking -- talking, talking, talking. I believe the reason is because the tongue is not sitting against another part of my mouth when I am talking. So if I am out, and visiting, I am feeling better. But as soon as I am not talking and things are touching again, the pain returns in force.

I just want to wish everyone good luck with the things that you try.

Hi Kathy. Me too - I have had this for a year and a half.

I was able to stop the pain for about a week by NOT EATING ANY CARBOHYDRATES, NO FRUIT, NO SUGAR NO BREAD NO CHIPS ALMOST NOTHING PACKAGED. Totally carb free diet and the burning when away, it was hard but it was a miracle, until I had an english muffin. then the pain came back that night. For women I thing your cycle can affect it because there is sugar in your blood.

Has ANYONE tried not eating sugar? I would be interested to know if this is a common factor in our burning tongues. Please respond if you have had this experience.

Thanks,
Lisa

Hi everyone,
I posted here in May when my bms was at its worst. I started in ALA and Vitamin B. Initially, it helped but after a few weeks, I noticed the burning got worse after taking the tablet. So I stopped. It definitely eased; it's always there but not as bad. However, the last week has been unbearable. It's even there in the morning and progressively gets worse during the day. I started taking ALA again on Sunday but no change yet. It gets me so down. I am 38, on no other medication, can't find any reason for when it's good or bad; it seems to have a mind of it's own. I do find that when I am exercising, I don't notice it, but as soon as I'm finished my run, it's back - I can't keep running forever:-). I just want to get it back to a tolerable level. Why can't modern medicine help us with this awful condition:-(

Regards,
Claire

Hi kvan,

It seems that we are both doing something right in being able to control this thing a little. I watch what I eat very carefully - no carbs at all actually and even then it takes a few days for it to go. But sometimes it flairs up for no reason, except the monthly reason. My theory-I have a fungus infection in my gut and sugar feeds the fungus, no sugar little burning tongue But you can't get rid of the fungus entirely because it can live off the sugar in your blood that is there naturally. But around that time of the month our body produces more blood and more blood=more blood sugar. so it seems to come out of nowhere. but that is my sneaking suspicion. Just thought I would write it to you for what its worth.

If anyone has a comment - I would love to hear it.

thanks Lisa

Hi Claire. I have had BMS since 2007. The only thing that really helped put this into remission for a period of time was taking lozenges made from capcasin, they were horrible to take, but I think what they did is desensitize the tongue and for a few months it was gone.

Of course it's been back now for quite some time. I am currently trying gabapentin which is supposed to help by blocking the nerve pain. I am up to 1800mgs per day and I thought it was helping but now I don't think it is.

I see the doctor again Dec 12th so he may suggest I try increasing the dose again before I give up on this medication. If the gaba ends up not working I think I will take the lozenges again as I feel desperate again to make this stop.

My BMS is like most other peoples, I can't feel it in the morning when I wake up and get progressively worse as the day goes on until I am almost in tears by bedtime. The pain goes away while eating or chewing gum so I do chew alot of gum. When I am tired or stressed the symptoms are always worse.

I have no other health issues except for I am on synthroid for my thyroid. I exercise 4 times per week and each fairly healthy. I haven't tried eliminating all sugar yet as that is easier said than done :) Was also contemplating going gluten free, but I don't think this is food related for me.
Erin

Hi Erin,

Thanks for that; I am going to try the lozenges and let you know how I get on - fingers crossed! Sorry to hear yours is bad again. It's frustrating when something that worked initially eventually wears off. However, it seems that more experts and researchers may be made aware of the condition:
http://www.sciencedaily.com/releases/2013/10/131023100957.htm

In desperation yesterday, I e-mailed Dr. Pinto to see if there is any way of following their research (website or blog); I am willing to try anything! There's no information in Ireland; it seems so rare that anyone I mention it to thinks I'm mad:-)

Regards,
Claire

I would like to know how many of you are affected by pain/soreness in your throat?

Also, for any of you, how does eating/drinking and most importantly gum chewing affect your symptoms?f Particularly, does it cause the pain to just stop?

Does your body orientation matter?

Who is not post-menopausal? And for that matter, not a woman?

Has anyone been treated for a mast cell activation disorder? (It might be worthwhile to have your doctor investigate this possibility.)

Hi Maurice,

I am a woman, premenopausal. I have done everything and the only thing that works for me is not eating any sugar whatsoever. No bread, no potatoes nothing packaged unless it has no carbohydrates. I can have squash and vegetables of the like and after a few days the burning is gone and the pain to a minimum.

Hard to live this way but until someone can figure out what it is this works for me. I just think it effects more women than men but I don't think it is a woman thing. I think mine is a fungal thing and every time I eat sugar I am feeding the fungus - got to figure out a way to get rid of the fungus in my gut. That is all I got. might be totally different for you.

Good luck - I can't believe that we have to live with this and NO DOCTOR can figure it out.

My best to all of you,
Lisa

I took Diflucan to treat a yeast infection and have had burning, bitter, and metallic taste in my mouth for the past 2 months.

Omg this burning is unbelievable ! I'm 45 years old and have had what over 10 doctors tell me is burning mouth ! It's been over a year and it continues I have been on anti fungal meds clozopan changed toothpastes you name it! I've had blood work and 2 MRIs of my head and mouth all negative , after reading some posts I think it might have something to do with fungus in my intestines I have had an endoscopy and don't have reflux I live on numbing paste directly on my tongue !

I cry every day praying this will just go! I'm going in January to a nutritionist which I will try a gluten free diet! My friends and family are sick of me talking about it but to be in constant pain every day is unbearable!! I just want my mouth back, ;(

Hi, I would like to ask you, that if stopping the vitamin d medicine helped bms as my mother is struggling with it. It has been a week that she is having pain in her gums teeth and burning mouth.

I've had BMS since "2005" after taking iron supplements for anemia, once the BMS started I went to sooo many doctor's, my ENT doctor patted me on the back and said it's not life threatening, but I couldn't take that as an answer.. I live in the Boston, Mass area and I went to an oral surgeon who referred me to a doctor @ Brigham and Women's Hospital who checked my tongue and said everything looked good and referred me to another doctor who is more knowledgeable with BMS which I went to and he gave my klonopin .25 milligrams at night, well it worked for me for 8 yrs.. I was 44 when it started w/ tingling, bitter taste and burning in my mouth which was driving me CRAZY... I am know 52 and in menopause and guess what, the BMS started up again on Dec 3rd "2013".

I couldn't believe it after so many years with no symptoms whatsoever with just taking the .25 milligrams of klonopin it came back... I think it's now due to menopause and I went back to my doctor and she prescribed neurotin and .50 of klonopin at night. She mentioned that I could increase the neurotin as I felt necessary to do so. It's been extremely frustrating and difficult since I am at a loss to know why this is happening, my mom and aunt both have it. My mom started after taking antibiotics for a infected salivary gland on the side of her face and she does not take a thing, my aunt has had the burning she said for many, many years and also does not take any meds...

I honestly don't know how they do it. Since I've been on neuortin it's helped, hasn't taken it all away, but I can deal w/what I have. I can deal better w/the bitter taste then I can with the tingling or pinprick sensations that sometimes occur because when that happens it's painful. I'm praying that this goes away and I also am watching what I'm eating... no acid, sugar doesn't bother me nor do carbs. I take a probiotic, prilosec due to gerd, multi vitamin and levothorax for hypothryoid every day on top of the neurotin which I am taking 1 pill 100mg 3x a day. I've been reading everyone's remedy and I'll be trying some of them to see if it helps my BMS. I was so hoping after all these years the medical field would have found out the root cause of this syndrome... but it hasn't happened yet and I'm hoping it happens real soon!

Peggy,
Hi, My name is Maria and I live in the Boston, Mass area. I read your comments on this support page for BMS... I also have bms since "2005" at the age of 44 due to iron supplements for anemia and when this started I went to several doctor's, dentists and there was one doctor at Brigham and Women's who referred me to a dentist in Boston who is very knowledgeable about bms and he gave me klonopin .25 milligrams to take at night before going to bed which I felt wonderful no symptoms whatsoever.. well I am now 52 and going thru menopause and guess what my bms came back.

During the 8 yrs since 2005 I had no symptoms of bms and I could eat everything with no side effects it was great. I even thought I had gotten rid of it. Unfortunately, I didn't and it came back on Dec 3rd "2013". My bms changes from a bitter taste, to burning to tingling which I hate because it's painful. I went to my doctor who prescribed neurotin for me and I am taking 1 pill 3x a day and .50 klonopin at night, she said that I could increase the neuortin if I felt I needed it.

I am still working and trying to not think about it, but it's so difficult and frustrating to deal with this. The neurotin has helped which I'm thankful for it's taken the edge of and if I need to I'll increase it slowly.

It would be great if we could meet at least to talk with someone who knows what we go thru. My mom and aunt also have bms and do not take anything for it... I honestly don't know how they do it. When I'm pulling my hair out of my head. I'm on levothorax for hypothroid, prilosec for gerd, multi-vitamins and a probiotic. One thing I'd like to ask is are you able to eat everything you want without any side effects from the bms?

I've been trying to stay away from acidic foods and caffeine, but I do drink de-caf which doesn't seem to bother me. Oh and to top it of I was just diagnosed with tinnitus... like I don't have enough to deal with tinnitus had to come into it! Hoping to hear from you.

An update on my BMS. I tried the gabapentin for about 2 months, have decided it wasn't helping so stopped it on Dec 17. I decided to try the hot pepper rinse and it works very well. Take 5 or more drops of regular Franks type hot sauce (I have just no name)and stir it into a small amount of water. Rinse and spit it out.

I try to rinse for 1 and half minutes but even just 45 seconds is probably enough. Try to use as much hot sauce as you can stand. Pretty sure I used 15 drops sometimes. I did this for about 1 week straight 4 times per day and my BMS was much better. My BMS was completely gone for a few days which is so amazing! I have stopped the rinse and I have noticed the BMS is coming back a bit so I will start rinsing again today.

Of course the rinse is a bit disgusting and your mouth will burn for 3 minutes or so after you spit it out, but after that I have relief from the constant burning. I believe this works because it somehow desensitizes the tongue at least that is my theory. I would be interested if anyone else is willing to try the hot pepper rinse and report back on their results. Hoping you get relief. Thanks Erin

I thought I was the only one who was suffering from this. At least I know know I'm not the only weirdo that has this. I was blaming it on an antibiotic since it can potentially give a yeast infection... I thought I could've gotten a yeast infection in my mouth. Mine comes and goes but I haven't figured out the trigger. I'm gonna try all these things one at a time and find a cure to this annoying disorder.

Maria.

I also live in the boston area. I had a very mild case of burning mouth symptom years ago but still take clonopin at night for it.

Have you thought about the possibility that the long term side effects on your body of some of the other drugs you take might contribute to this? prilosec, etc.

Hi Joan,

I did think about it and asked my doctor about it.. she doesn't think so since I had no sypmtoms for the past 8 yrs. and still taking the prilosec and other meds w/the clonopin. She thinks it's menopause whose the culprit in starting the bms again. It's just frustrating... I'll try the hot sauce w/water and rinse and see if it helps. I'm not a huge fan of hot things, but if it gives me some relief I'll do it. I've also done a rinse w/baking sode 1/4 teaspoon w/water and rinse that also helps. I can only take one day at a time and I'm still working, so it's hard to do these rinses 3 or 4 times a day while at work.

I have had a burning upper lip since early 2009, following a dental procedure of one root canal, and 4 crowns. I can't remember if it started with the temporaries or the the permanent crowns, but I have been in pain ever since. The only time it subsides is when I am sleeping or eating. (I too have gained weight).

I chew sugarless gum as much as possible. As of now, I wear a plastic cover, (similar to a night guard only thinner), which my (new) dentist made for me. That is the only thing that relieves the pain somewhat. I don't like to wear the guard in public, so I cut thin strips of plastic and put between my teeth and lips. I just know it is the crowns that are burning me, I have even tried coating my crowns with nail polish, which helps a little. Anything to get my teeth away from my lip. I have also taken to using a great deal of Vicks on my lips, which seems to take attention away from the burning on my lip, similar to the Capsaisin effect. I also suck on mint candy, which helps, while it is in my mouth. Things I have tried:
*Allergist, not allergic to anything, although formaldahyde left a red mark for a day or two
*Hot sauce rinses (Tabasco)
*Prescribed rinse from my dentist
*Peppermint oil, which like all other oral treatments only works while in my mouth.
*A coating that my dentist put on, which peeled off right away.

I would have the crowns replaced, but with what? I have no metal in my mouth at all, these are ceramic. Is there such a thing as acrylic crowns? It seems as if plastic is the only thing that helps. How many of you all had dental procedures prior to your BMS? I am 52 and have not had menopause yet, and aside from a few migraines, I am healthy otherwise.

Like many of you I cannot believe more doctors haven't heard of this, my dentist had not heard of it at all but since I have been going there he now has one more patient with it. This is getting really old. Sorry for the book, after 5 years, I had a lot to say.

Hey ST,

So sorry to hear this - I have had your exact symptoms for almost two years. Just wondering... were you on rounds of antibiotics? or take antibiotics just before this happened??? I did. Rounds of antibiotics.

I have posted this before - it isn't very popular but when I said I would try anything to get rid of this - I meant it. The only time I can get the burning under control is by not eating any sugar, None! No bread, no bagels, no donuts, I am careful of vegetables with a high glycemic index, no fruit and of course no sweets.

And I take tons of probiotics. at least 100 Billion strength. I did this for one week and the burning was almost non existent.

But then I ate Christmas cookies and the burning came back the next day and it took a week to get it under control again. I have tested this several times in the last year, for me at least - it is connected to sugar.

Like I said not a popular remedy, I know. I don't know if it will work for anyone else, but it works for me. Now I have to take my findings to any doctor who will listen and see if they can tell me how I can get rid of this for good.

If there is any upside for me - I have learned there is a lot of tasty things I can eat (meat protein of all kinds, fish, eggs, cheese, squashes, just no carbohydrates.

I hope this helps anybody. its awful I agree but I wonder if antibiotic and sugar have anything to do with it?

Lisa

Hi Lisa, no, I was not on any antibiotics at all.I wish I could try that diet, but I know I wouldn't have the discipline to stick to it. I just can't help but think that this is related to the crowns, because when I put something between them and my lip, it reduces the pain but it never really goes away completely. The other possibility is that it could be nerve damage from all of the needles during the dental procedure. Right now I am trying the Alpha Lipoic acid, I have read some articles about it and they say that 90 percent improve after 2 months. I believe the dose is 1000 mg a day. I'll post if it helps at all. I hope there is a cure for all of us soon.

I've been watching posts since I last posted in Oct. My BTS is a little better. Trident fruit flavored gum really helps. I tried Spry but it doesn't last long and doesn't produce enough saliva. I also found Salese fruit flavored lozenges that last over an hour... but they have some mint which is a little irritating for me.

I have noticed that chocolate and coffee do make it worse and I love my coffee. I'm about 30% better than I was in July... at least I can close my teeth at night and talk without sounding funny. What a strange and frustrating syndrome. I tried cutting back on things that dry out my mouth and that helped a little but nothing has completely resolved it. I'm so glad I tried Trident fruit flavored gum... it's been the most helpful.

I started w BMS in Oct. ENT gave me pills to calm nerves in tongue but they only gave me terrible headaches. Met a retired dental hygenist & she told me to stay away from all yeast products & acid foods such as fruits. I did this diet for 2 weeks, lost 6 lbs & my mouth started feeling better. The dr never mentioned to avoid these foods. I just called him to see what he said about this info & he confirmed that I should stay away from these foods.

I am livid that he didn't mention this to me 3 months ago. I was about 70 percent better & started eating bread again & it is back. The hygenist told me I gave to get rid of it all together before I can go back to these foods. I also do not use toothpaste because it burns, I use baking soda or Toms of Maine toothpaste without fluoride. I hope this helps everyone.

I had this burning and my dentist sent me to a specialist. He was so familiar with burning mouth he told me to take a teaspoon of hot sauce mixed with something. I have it again after 20 years and forget who the Doc was, what I mix it with... Again I have this burning sensation and was wondering if anyone has heard of this and what do I mix it with? It helped in 2 days.

Hi everyone. I have had BMS for nearly 3 years now and I have tried almost everything mentioned here. However I was reading about an BMS specialist doctor that recommended his BMS patients a self therapy taking "hot sauce" (including Tabasco). Starting with fairly mild and increasing the amount of tabasco. He said that many of his patients has been helped. At first the symptoms were worse but after some time they experience a long term relief. Kind of a "Treat evil with evil" method... Does anyone here tried this? With what result?

Hello fellow BMSers. What a journey we are on travailing through the pain and insanity of this hideous challenge in search of answers and cure. It would seem while we all experience very similar and familiar burning sensations, there are none the less huge variations in the individual in how these symptoms are made worse, reduced, or altogether alleviated permanently.

There are so many intelligent thinking people out there with this condition, surely through all of our long term observations of self and others, noting the trials and errors and via trying all kind of alternative health modality and supplement, hope we can with ongoing persistence get closer to finding 'a general link' to which 'all' could benefit in either significantly reducing symptoms, or curing BMS altogether.

With respect to the medical fraternity, no doctor or specialist has any idea about this one, and like several health challenges that are without medical interpretation, it is only us living with the condition who can find the way through. Like everyone in search of answers I too have spent 8 years now trying to tame this beast. May I add my own findings at this point which have helped me, and may contribute to your own on ongoing trials, and ultimately to the link we all seek.

FOOD

*Foods high in salicylates intensify burning. (This will require your own investigation and research to discover if salicylates in foods are additional culprit for you.
*Weleda (Sea) Salt Toothpaste natural alternative, (is natural minty) helps alleviate burning
*Milk and all milk products intensify burning
*Soy De Café Coffee if you really need to drink coffee or switch to Roasted Dandelion
*Invest in the best Soy Milk without the additives, oils and unwanted extra's.
*Regular Ceylon Teas intensify burning. Green Tea tolerable, maximum 3 per day
*Many Herbal Teas intolerable and intensify burning
*Honey, Maple Syrup, Jams, all other sugars intensify burning to different degree
*Rice Syrup, alternative to the above.
*Mostly all Fruit aggravates (sugar and salicylate)
*Milk Chocolate, all Dark Chocolate, aggravate
*Alcohol, fizzy drinks, mineral water, aggravate
*Grain, brown, wholemeal, rye, spelt breads aggravate. Plain 'home made' basic white ok.
*Most nuts aggravate, Almonds worst (very high salicylates)
*Packaged breakfast cereals, wheat, corn aggravate. Better quality Rice Bubbles ok.

HEALTH

History Chronic Fatigue/Fibromyalgia 12 years
BMS started 2006, very sick initially, couldn't eat much for nearly 2 years without unbearable symptoms. All trials of pharmaceutical drugs during that time outcome a diabolical worsening of burning. Misdiagnosed at later date whereby gallbladder was removed. Drugs and aesthetic increased the burning to entire body. Burning intensity was so great, thereafter secondary digestive issue ensued resulting acid burnt oesophagus.

Today my symptoms remain moderate on a daily basis, but can increase significantly or blow out when I fall short of not keeping away from known aggravating foods.

8 years is a long time to have to totally withhold from chocolate and sometimes I just want a nice strong cup of regular tea! Hence, getting off track, and I do, like all of you, fed up with it all, and it costs when that happens becoming an ongoing frustrating cycle.

There is so much more I could add, the list is not exhaustible and so many other variation, however hope this addition may be useful to some. And thank you to all who have posted where I have gleaned your own experiments and successes to consider.

Keep at it everyone, don't give up....don't ever, ever, give up!

Jaye

Hi MF. See my post from Dec 29. Yes I think the hot sauce rinse does work. Having said that I stopped and my BMS has really flared up right now. I better take my own advice and start the pepper rinse again. I will do the rinse for the next while and report back on my results. Back in 2007 I had special lozenges made with capcasin which is the same as using hot pepper sauce really and they worked very well, I was in remission for several months.

Someone else has also said just chewing a hot pepper is also effective so tomorrow I will get a jar of those and try that also. I think the important thing is the do the rinse consistently 4 times or so per day for several consecutive days perhaps 2 weeks and don't stop otherwise it doesn't seem to put this into remission which is my goal.

Sorry it never worked for me. I guess after 8 years of this I say if something works keep with it cause it doesn't work for everyone. I've tried every single thing suggested on this site with absolutely no relief which also includes a bunch of good doctors that do not have a grasp of this other than try this drug and that drug.

Here's a good one... starting about a month ago my burning mouth began and runs through the nite and wakes me quite frequently. If nothing else this is teaching us several skills: "grin and bare it", "get over it, already" and "put on a happy face". Sorry to be so negative but I guess it's the only place to vent where real humans really understand our frustrations and our PAIN.
Better days to come=upbeat and positive!

Hi Kelly C, what exactly do you take? Do you continue to take it daily? I have only had this one week following stomach issues which created lots of stress and weight loss. I am desperate! my hubby and I want babies and this is torture. Thank you, KC

To Kelly C.,

How old is your child? where you breastfeeding? it could be thrush. Just something I read. you don't have to answer these questions here I just thought I would point out that it could be thrush and that your gynecologist might be able to help you with it.

lisa

On two years of this burning tongue now with no real relief. I've changed so many things and nothing has taken it away entirely. now, I'm drinking peppermint tea every night. the idea is: peppermints are given to you in restaurants not for clean breath but to help the enzymes in the stomach digest food. I'm using real peppermint tea leaves, no baggies because they have bleach in them. The last doc told me to go gluten free. I'm using organic milk only. Eating 5 banana's a day and star fruit but no citrus fruits. I've done every idea on this site as well as reading books and web searching. I really believe this is gut related but somehow we have to find one common thread among so many of us that are involved with this problem. The doctor's do not have an answer and since they don't, they will move on to another subject. it's going to be up to us to figure out what will get rid of this forever.

I would like to take each of us and do some comparisons to see if I can find one thing that we are all equal in. I have a pharmaceutical background and I am hoping I can figure this out for all of our sanity. I saw mention of a female mentioning her and her husband want to have children. I can't imagine trying to take care of a small child with this problem. I've basically quit doing anything for my husband because its just so exhausting living with this everyday. If you don't mind, please send me a private email with a history of your meds, medical issues, surgeries, dental procedures, age and lifestyle and I will transcribe a list of comparisons to see if we can find one thing in common. Upon my completion, I will post what findings I do come up with without using your names or sex and let's see if we can derive at an answer to save ourselves.
I pray we all can keep our sanity until we find an answer.

To Gooze,

I think it is in my gut too. I think I flipped my flora a year and a half ago (antibiotics and eating a ton of sugar) it's a longer story but I find if I eat NO carbohydrates, no fruit no bread nothing with sugar in it, in about four days I find my symptoms are greatly lessened. but I have been on this diet for a long time symptoms almost gone but nothing to make it go permanently. I think it is a fungus in my gut living of any sugar I eat and when I don't it can live off my blood sugar - I don't know what to take to wipe it out completely.

This is just me - I have tried everything else. I think it is a fungus in my gut. let me know if that sounds like you?

thanks and good luck to all dealing with this affliction.
Lisa

Has anyone tried brain treatments? These include transcranial magnetic stimulation, direct brain stimulation and even a brain implant to stimulate the brain?

Maurice,
Are you in the medical field, have BMS and/or had brain work done for BMS? Sounds a bit drastic/scary to me. Always interested in learning more.

I am still clear of BMS, my second bout was definitely potato based. I have also managed to work out it is Maris Piper potatoes. Our potato seller told me it might be the starch levels. I now eat only King Edwards or similar varieties and try not to eat potatoes when out if the place I am eating in cannot confirm the variety. If I stick to the King Edward types my mouth is fine.

I've started going to an asian doctor for acupuncture and taking herbal tea.. I've had 2 sessions doing the acupuncture and taking the herbal powder for the past 2 weeks-twice a day (nasty stuff tastes like mud).. well it's not making me feel worse, but the bms still feels the same. The acupuncturist said that the mouth is the window to the stomach. She also mentioned that my pulse is low.. I have always had low blood pressure.

I'm giving the acupuncture and herbal tea a shot for at least 2 months to see if it helps w/my bms if it doesn't I'm going to stop it since it's not cheap! I did drop 1 neorotin pill and taking 2 a day w/ALA and I added the Vitamin B Complex w/B12 and I increased the probiotics to 30 billion from 13 and the .50 Klonopin @ night. I can tolerate my bms- it does have a life of it's own and I never know what it's going to be from one day to the next.. trying to not get stressed, but it's difficult when life itself is stressful.

Looking forward to going on vacation in a couple of months and relaxing in the Virgin Islands and drinking a lot of water since I cannot have any wine or any of those cute fruity drinks that I enjoy. I did hear that we need to stay away from foods that have tannins in them and I did find a white wine that is not aged in oak barrels its aged in steel barrels and I bought a bottle it didn't bother my bms or make it worse, but I have the wine once in a while for dinner... at least it's something other than water, decaf tea and decaf coffee for me to drink!

I've also been using some red pepper flakes, I shake some on my hand and put them on my tongue and I drink some water which makes your mouth burn more, but not as much as if you used the tabasco sauce, it does seem to work for me and I can tolerate it better than using the tabasco rinse. I also think anything w/ vanilla in it will make your mouth burn more.. I had yesterday I call them italian waffles they are thin and round and crunchy and I love them.. well, as soon as I had one my mouth started burning, something else to write on my notepad of what not to eat!

I've read the list of comments and one thing is different with me compared to you all. I'm a male, and as far as I can tell you're all women. So, what's up with that! I've had BMS for a year now, and I'm clueless. I've had a colonoscopy, endoscopy, and seen dentists also. I'm 44 yrs old, and I'm on high BP meds, high cholesterol meds, and an occasional xanax. All low doses.

Chewing gum or eating will mask the symptoms, but not for long. This is driving me nuts. I've read, this happens mostly with women during menopause, but not so much in a middle aged male. I also take a boat load of vitamins, supplements, and minerals. NOTHING WORKS!

So, are there any males out there with this? Because i would really like to get rid of this. I did have oral surgery, an implant, put in about 4-5 months before symptoms started. Any suggestions??

Thanks

I just heard a young lady on the radio say she had BMS with blister type sores on her lips and inside mouth, after spending a lot of time and money with her doctor she found out she was allergic to the gum she was chewing. She stopped the gum and the issue was resolved. I believe this issue of BMS is a symptom of a number of things so keep looking for YOUR answer. Our body reacts to things adversely as a red flag, but everyone is different. Good luck!

Alan, what you have is most likely not the same as what many postmenopausal women have. That is probably a specific disease. I am male and while there are similarities between what I have and BMS, the underlying pathology is probably different.

I wonder in your case whether you got an infection during the implant procedure and the pathogen infected a nerve. However, it's interesting that chewing gum switches off your symptoms.

Alan, I believe that my BMS is related to dental work, possibly nerve damage or intolerance of dental materials. I also get relief from chewing gum and eating, I also suck on sugar-free peppermint candy all day. On another note, I posted before that I was trying Alpha Lipoic acid, and I have been taking 1200 mg. since November, I have noticed no change at all. Not sure what to try next.

I have been suffering from what I believe is BMS since November 2013. It isn't nearly as long as many of you, I'm so sorry to hear of all of your discomfort. I haven't read everyone's comments, but I was wondering if anyone has had these symptoms along with acid or bile reflux.

I've been seen by my gastroenterologist, dentist, and general doctor and they all believe it is related to my reflux which I had surgery for almost 3 years ago. I was also diagnosed low in Vitamin B a couple of months before this started. I am praying for an answer.

Hello ALL I've had DRY MOUTH on and off for last 2 years. I had it many years ago for a season.

BUT lately it has gotten worse and now it feels like if I burned my whole tongue. It has been a month with this sensation and I feel so frustrated! I have trouble SPEAKING, I spit alot when I speak.

I went to doctor, he said that he does NOT see any sign of FUNGUS which I thought I had. I have been taking probiotics for weeks but do not see significant results. I will continue taking though.

I have NOT gotten diagnosed but of course it feels like my whole tongue and palette got burned drinking something HOT.

Today I bought Milk of Magnesia to Rinse with it. I bought Biotine mouth wash, toothpaste, and spray which I will start using. I also started juicing a few days ago.

I do know that I've had more stress at work with way more responsibilities but I would have to totally change carriers to stop working.

I've been feeling like the only one in the world with this. I've felt dumb doing to doctors and seen it like a waste of time.

I've done BLOOD tests and everything is fine! I've gotten MRI CT Scan of brain and neck and everything is fine.

I believe with all my all this is temporary, it has a beginning and end. I know God will heal me!! But it feels good talking about it.

Hi Chantel, you asked them to do a tsh test? what dosage did they give you? dosage of what?

Hi NOC77,

I have had a burning mouth for a year and a half and before that a series of sore and dry throat. I feel that my burning mouth began after a round of antibiotics. and it flipped my flora. and I can't seem to flip if back. BUT until I can find out how to correct this I have found something that has helped. Massive probiotics. like 400 billion powder and I don't eat sugar (or fruit or anything high in carbs). If I do this for about four days the burning goes down to almost nothing (until late at night) and I usually go to bed before the pain starts. I know Diflucan can work (for me at least-I can only speak for myself) but I can't get any doctor to prescribe it for me because they don't believe this condition exists.

Again - I don't know for anyone else but I think it is some sort of fungal infection in my intestines and it is very hard to diagnose because we have fungus in our intestines normally. I felt crazy too and I am grateful to find a place at least where I can relate to others who have this condition. I just can't believe there is nothing out there for this condition.

Lisa,

I think that it's fungus in my intestines also. Do you wake up in the morning with a white tongue? I'm going to do a 4-7 day juice fast, and eat clean, after the fast, to see if this works. I think that BMS is linked to sugar, and wheat. Of course this is a guess, but I'm prepared to do anything to get rid of this BMS.

Any, doctor that says it doesn't exist is nuts! Look at all of us, and I know I'm not. I'm going to bio-hack my body, and figure this out. It's not due to vitamin deficiency because I take a boat load of vitamins.

I have heart burn also, but it came on around the same time, so who knows, may be it's linked to that also. However, I take nexium and it does nothing.

It's to the point now, I'm thinking about having the dentist remove this $10,000 tooth implant, I had put in. Just to see if it's the tooth. Man I wish I just had them grind the two good teeth down and put a bridge in. At least then I could rule out dental work.

About the only thing I've ruled out is menopause.

Good luck all, and if anyone cracks the riddle, let us all know ASAP!

To Lisa, I literally feel your pain. but I wanted to mention, be careful about taking too much Vitamin D if you are taking that. My BMS started after accidentally taking too much prescription Vit. D2. "We", meaning the general public, may take all kids of vitamins but if our gut is out of whack, it may not be able to absorb what you are putting in it. "Leaky gut syndrome". I wish you and everyone the best and yes, if anyone figures this thing out, blast the news to the world!

My burning tongue started in July of this year. My tongue was white, it worsened as the day went on, and I had a hard time speaking or closing my mouth to sleep. And it's worse when my core temperature goes up with exercise, a hot bath, or even a hot flash. I saw an ENT who said this can be a chronic condition but saw signs of gastroesophageal reflux and started me on an acid blocker along with a strict diet. I'm also post-menopausal, had a very dry mouth from a blood pressure med change, and considerable stress going on. All potentially contributing factors.

I followed the diet for a month and a half and didn't have much improvement. Chewing Trident orange gum seemed to be my best source of relief with the least amount of mint (mint aggravates GERD).

The white coating is common with burning tongue syndrome but is not yeast. At times I've even had blisters and sometimes my lips even burn.

I had my follow-up visit last week and he told me he had nothing more to offer than going back on the acid blocking med since my esophagus was still red from acid reflux. Only this time he did an am and a pm dose. I actually have had improvement in a week. It may never be perfect, but I'm learning to live with it and the gum is my lifesaver. As long as I can keep my mouth moist, the pain is less.

I've tried Magnesium, Zinc, and a feet/nerve supplement. And I drink a glass of water with a TBSP of organic vinegar which is a base...not an acid. Perhaps over time it will go away. But if not, at least I have some things that keep it from being an overwhelming focus in my life.

I also use a tongue scraper just to purposefully irritate the nerves. A physician told me that if you aggravate sensitive nerves, they become less sensitive. So if you see someone driving down the street, sticking out their tongue in different directions, smile and know they may be trying to desensitize their nerves and who knows... it may be me!

YES to Diane about the cold! Have wondered if that was the trigger. My husband and I went on vacation as a 'treat' following a very stressful year oct, 2013. We both got upper resp infections; I went to ER twice for an associated excruciating eye infection that would not heal and the bms stated up during that whole process.

VACATIONS ARE DANGEROUS! Seriously, unless you've had bms, understanding how horrible it is for us all is about impossible. I have noticed some similarities between the women... postmenopause, anxiety; insomnia for menopause and associated anxiety symptoms; ambien for insomnia; tongue burning as possible result of all the above?? All I know is it MAKES ME CRAZY and then just plain mad when Drs shrug it off.

Cool salt water rinses help... but swish with water after and spit or the salt will raise your bp, brush with baking soda but, again, beware of the salt. The only real reliefs I ever get are from HALLS SUGAR-FREE HONEY LEMON COUGH DROPS and acupuncture. THEY DO NOT PUT NEEDLES IN YOUR TONGUE. It is a surprisingly calming procedure.

All other Drs, dentists, specialists have run tests-including a tongue biopsy... now that was fun-, stabbed at the dark, and gave me many Rx lozenges, rinses, meds and finally admitted defeat. Knowing I'm not alone makes me feel better, although I would never wish this on anyone. I try to be thankful and thank God I have a tongue that helps me eat and speak rather than feel sorry for myself but I hope somebody somewhere in the med field has an 'ah ha' moment and figures this out SOON. What a great day that will be. God bless us all.

Do you rub the cream on your tongue???

Thank you Diane and gw. I can't write anymore than I already have. just wondering if rounds of antibiotic cause a flip in flora that starts this tongue burning thing. DO have my suspicion hat it has nothing to do with the tongue - n=more like the imbalance in the intestine and the result is a burning sensation in the tongue. I am ignored by all doctors too. I feel for all of you - very hard to live with - but you are all not alone.

Thank you,
Lisa

I called my doctor last week and asked if she could prescribe me the oral klonopin which dissolves on the tongue... I was taking the pill .50 mil and I noticed it wasn't working as well as before so I thought since some people use the oral one and it goes right on the tongue and melts that it might be better... well, I've been on it and I take .50 mil @ night before going to bed and it helps my bms, but I also take 2 gabapentin 100 milligrams each daily w/multi-vit, B-complex w/zinc, probiotic, allegra, calcium and my bms is still there, but I can tolerate it and I feel that the oral klonopin helps me better.

I've tried sooo many other vitamins and they don't help at all. At times I take 600 mil of ALA, but after using it for awhile it doesn't help as well as when I started on it. I'm at the point that I have to wrap my head around this that it is going to be w/me and try to deal w/it the best way that I can. I'm in menopause and due to hormones the bms started up again in Dec "2013" when I was bms free for 8 great years.. menopause hits and bms starts up.

Maria
I take just dissolvable klonopine alone for bms and it has worked. but I have a mild case. also take vit D as my D is low. nothing else. maybe some of the other stuff you ARE taking is contributing to it. why not go off your whole list of stuff except for the klonopine and see what happens.

Joan,

I'll take your advice and stop using the gabepentin and the other vitamins and see what happens. I'll start tomorrow. I'll be keeping my fingers crossed.

I think that I know what has been causing my BMS. For me I believe it was a combination of GERD, and stress. I'm starting to get control of my GERD through diet and medication. I work away from home for long periods of time, and it seems that every time I return home, it goes away. I thought it was because of a tooth implant, but I went to the dentist and he's never heard of it, and said that he's 99.98 percent sure it has nothing to do with my implant.

Also, the doctor said that I may have a hypersensitive esophagus, which makes sense, due to the GERD, and stress.

It's funny how NO one I've talked to have never heard of BMS!

Well I'll keep ya all posted on my prognosis. I leave again in about 3 weeks. If it returns while I'm gone. I believe I may have it narrowed down to stress.

Hi everyone. You will have noticed that I have posted on this site a few times. Like all others that have suffered with BMS for quite some time (6 years for me), I kept trying to figure out the cause, of course to no avail. I do know that stress and not getting enough sleep does aggravate the condition.

For those that have never tried the capcasin lozenges I would really encourage you to try them. I had a few left from 2008 in my fridge and decided to try them again. When I used them the last time it was 3 times per day for about 3 weeks to a month. My BMS completely disappeared for quite some time. I only have about 30 lozenges left so I took 2 each day for 14 days. Sure enough, my BMS disappeared for a few days and I felt GREAT. I am very sure that the key in making this disappear for at least a period of time is to desensitize the tongue nerves. I just had my doctor write me another prescription for another 120 lozenges with one refill.

I will get these in the next couple of days and will take 3 times per day for 21 days. I will then stop and let you know the results and I plan to keep better track than I did last time so I can share with you. The lozenges are 0.025% capcasin and 5% lidocain. They are really gross when you first put in your mouth, but if you can endure the first minute then the lidocain numbs the tongue so it isn't so bad.

I guess what I'm saying is trying to figure out the cause is very stressful in itself and results in thinking too much about BMS. Therefore I am focusing on doing what helps me the most in managing this condition. I will provide an update in a couple of weeks. If there were a few other people that would be willing to try the lozenges it would be interesting to see if the BMS is put into "remission" for several people or do they just work for me?

Hi Erin, I will be happy to try anything. Once I get my prescription and try it out I will let you know and everyone else know.

Lisa

Joan,

I took the dissolvable klonopin at night and the next day I didn't take anything to see if I would be ok, but late morning the following day I was starting to feel symptoms of bms (tingling sensation) and I had to take the gabapenten to lessen the symptoms. I noticed I am a bit better since using the klonopin that melts on your tongue w/gabapenten, but not symptom free. I did stop all the other supplements since they weren't helping any, but, I am considering using the capcasin logenzes to see if the bms goes away for awhile.

Hi Joan,

I tried not taking anything the following day to see if the klonopin that dissolves on tongue would be all I need w/out the gabapeten, but by late morning the following day the bms started (tingling sensations) in mouth. I had to take the nerve blocker to lessen the symptoms. I am thinking of using the capcasin lozenges to give them a try during the day and stop the gabapeten. Honestly, the klonopin that melts w/ gabapeten has helped me better, but I still have symptoms.

I have started trying the vinegar and baking soda. I am just swishing it for 30 seconds or so. Looking around, I couldn't find any specific directions as to whether I was supposed to swish it or swallow it. Anybody know?

I just want to say - seems like we are all in this together so why not print out some of these blog posts and take then to your doctors to read? to show them that this is real and they need to get started on finding what is wrong here even if there are many symptoms and reasons why this is affecting so many! Perhaps we can post some of these to other Medical websites too. There must be a way to get medical professionals more involved in this. A few years ago they shook their heads at a disease - Fibromyalgia and Polymyalgia saying "Oh its not real its in your head" to many of my friends and others and now it is a real disease being treated. Everyone with this BMS is not making it up! It is real and It is a shame that perhaps there is no real money making reasons or profits for big pharmaceutical companies to want to even bother. If any Medical Doctors/dentist had this you better bet "THEY" would be doing research or finding out what causes it! It would be a great clinical trial as there would be so many volunteers for this research! We need to get the word out somehow on other sites! If anyone has ideas we should do something! Well thanks for listening - good luck to all.

thank you I really appreciate you writing that I agree with you 100 percent. I will see what I can do to get some information together but I agree with you we're all in this together.

We won't be seeing much in terms of research for BMS because it's neurological and the Big Pharma have all but abandoned research in this area. Part of this is due to the fact research is done on animals. So that means you need animals suffering from burning mouth and how would we even know that a mouse or rat have it even if they could get it. Plus, what works to treat mice and rats for nerve diseases that do mimic human disease often does NOT work in humans. They spend billions and end up with drugs that don't make it through clinical trials and this happens a LOT. Anther part of the reason for these failures is not recognizing that body chemistry varies from person to person, yet the trials are generalized to mask this, though this idea is finally dawning on them (eg., pharmacogenomics).

On top of that, there are other problems. Big Pharma (and the FDA) are still caught up in idea of magic pills, that a single compound will completely solve a given disease. Only rarely do they pursue multi-compound drugs, which are really needed for many conditions.


On top of all this, the research budget in the US is stalled due to the sequester and lack of Congressional action.

Doctors would love to have a better understanding and better treatments but the research infrastructure is making it increasingly difficult. Probably the one exception is cancer research.

The only suggestion I have is to pester your congressperson, the NIH, and the FDA.

Not sure that drinking combination of baking soda and vinegar would be good. Might cause stomach problem or indigestion... let me know if you tried it. I would be leery but who knows. I am all for relieving the horrible symptoms of this disorder, just wish we could find the cause. I know taking all the meds I take is not good. Am thinking maybe the sensory nerve to my tongue is damaged or something... has anyone been to a neurologist for this? Is so, what did she/he say? Maybe it's a structural problem, not related to meds, hormones, stress. When I push on tongue with my finer, the pressure almost stops the pain. But I can't go around with my finger stuck on my tongue! Try applying pressure and let me know if it helps.

I am currently 62, post menopausal and have had BMS for about a month now. I have had my gall bladder removed but that was over 12 years ago. I am still looking and hoping to find something that will make this condition go away.

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