Burning Mouth Syndrome - I've had BMS for seven years. Has anyone had this go away on its own?

The worst part is BMS is so obscure I believe that no one believes me.

I also had burning Tongue for over 7 years. I finally tried a b12 vitamin even though I had my levels checked and was told they were fine. I was at my wits end so I tried it anyway and it has gone away. I hope this helps someone else. I chew the pills and keep them in my mouth as long as I can to absorb them .

I also have and sore tongue and thrush often! but I have been taking probiotics from puritans pride online, and rinse with salt and apple cider vinegar about 1tsp salt, 1Tb vinegar and about 1 cup of water! it helps because it's a natural antifungal. this happens to people who have taken lots of antibiotic's either as a child or adult. mine didn't get really bad until I spent almost 2 months in the hospital fighting to stay alive. I was on double doses of antibiotics. now when the dr gives me antibiotics i always take probiotics which help the balance the good and bad bacteria in your digestive system. hope this helps ladies!

have you had any luck with yourBMS since this post.

I had foot and mouth about 1 month or more and they gave me "magic mouthwash" which helped with that immensely. that cleared up but the burning tongue did not, a friend of mine thinks I should try apple cider vinegar, does it burn when you use it, am going to give it a go. The doctor won't refill my "magic Mouthwash" script unless I come back in and pay another co-pay, which sadly at the time is hard for me to do.

I have been down that road as well with Oral surgeons, Primary Physicians, Dermatologist, amongst others. My ENT found that I had silent acid reflux and it was confirmed when I went to a GI and had an endoscopy. Try Zantac 150 for a week and see if things improve and see a GI doctor. I had numberous tests run from blood tests, to thyroid, to B12, to 3 Oral surgeons, and many others. I'm watching my diet (look up acid reflux and things to avoid online) and stick to it - you will see a slight improvement. Also, don't eat after 6:00 at night to allow 5-6 hours for your food to completely digest at night. You can also do a test of your own to see if you have reflux - stay away from coke completely for a week. After a week swish (don't swallow) coke around in your mouth and see how the pop fizzes alot and spit it out - a bunch of dark stringy stuff will form. Don't drink anymore pop or caffenine beverages or chocolate. Watch diet and stick to it. There is so much more to add to what I am saying if you need to talk. I"m vickie mnis on face book.

Try Valtrex worked for me

Thanks for the response. Just hoping someone would know.
Folic acid is an essential vitamin that is often used to support autoimmune mouth sores. It is used in cancer treatments and has worked for RA and other diseases. Three, four or even five tablets per day can help. If I run out, within a day the mouth, especially the roof of the mouth starts getting very sore. So I take it daily and it definitely helps me.

Wow, that is a new one for me. I have never had the deep cracks or bleeding. Have you tried the Bioteen tooth paste and very gently brush your tongue and last rinse with a little baking soda 1/2 tsp. in warm water 6-8oz. Do the mouth rinse 3-4 times a day. I know it's a pain to do, it but it helps. If you have the bleeding on the tongue, may try a little less baking soda to start out.

Dear Endless P:
Have you heard of Sjogren's Syndrome? Check it out. I am being tested for it currently by a Rheumatologist. I, too, suffered from a fungal infection of the mouth. The Rheum told me that fungal infections can be a symptom of SS. So, just being treated for the infection will only get rid of that, but do nothing for getting to the root of the problem. I have been having BMS symptoms for 3 mo and have had lip biopsy, nuclear salivary test and bloodwork. Am currently waiting for results. Don't know yet if I have BMS or SS. Will check back. Good luck to you!

Thanks for the response. My rheumy doesn't do much anymore as my lungs are failing. We keep me comfortable and the mouth thing comes and goes. At this moment it just started up again. Like within the hour. I happened to be out of folic acid. I think this is a real connection. Been out for a week and symptoms including thrush are back. Have you tried the folic acid? It cannot hurt. My sister uses 5 units. See what helps. When the body is off it is off. I do hope your tests show a benign condition. Auto immune is tricky. :)

It sounds exactly like my symptoms. I was diagnosed with acid reflux. It sounds like you have it by mentioning the fizzy - if you drink pop - the acid is mixing with the pop and almost exploding in your mouth. Just give zantac 150 a try and see a GI doctor. I had silent acid reflux and couldn't even believe I had acid reflux but I did. I am on medicine as well now and my tongue is feeling better but I am only two weeks into taking the meds and watching my diet and what to avoid eating / drinking. Inbox me on face book at vickie mnis and I'd love to talk about this more. I really would like to help anyone that needs it as this was a horrible experience for me and I suffered severely.

I hope your BMS has gone away. I'm new to this and wanted to say that I've had it for months. I tried the Alpha Hydroxy pills suggested by my doctor, with no change. Yes, it's very aggravating. please let me know if yours is gone.
Cheryl

thats how my burning tongue syndrome started.

Please, can someone help me !! I've never had pain like this before !! I've had Burning Tongue Syndrome for about 2 weeks now & I am totally going crazy !!
I've read a lot about BMS being related to being nervous & anxious. That's not really relating to me. That I'm aware of.
I also have burning in my feet, back & ear. Have anyone else had this ?
Any info would be greatly appreciated !!! This pain is BRUTAL !!!
Thanks.

Marylin, So sorry you have this. With your burning pain in multiple places you need to see a neurologist . Dealing with this for over 10 years one thing. I have found out is to really check out the doctor before going to him. Find out if he's very experienced with nerve pain. My tongue used to feel like I was constantly chewing hot jelopenas. After I was into the third year I actually tried to find a doctor that would cut my tongue out. After I was referred to a pain clinic I found a doctor there that was really interested in helping me. He really tried with so many different drugs that I lost track of all them. He brought in a new doctor that had seen this before. She told me she thought my only chance to relieve most of pain was surgery. Then the search for neurosurgeon that had ever done this surgery in Dallas began and that was the beginning of me getting my life back. I was on pain pills for years so don't be afraid to ask doctor for them. They did help a little. Good look and tell me how it goes.

Suzanne MC.
Thanks so much for writing back. I have never felt so bad before !! It is a terrible amount of pain !! You had Surgery for BMS ?? What did they do ?
I am thinking about getting pain meds for it. I also take 500 MG Of Folic Acid.
I have no idea who to go with this. My Dr. tomorrow & hoping he can help !!
I have to try & cope with this !! Do you have a "ringing" in your ears also ? I do & have a terrible headache also.
Did it come on suddenly with you ? I did for me & I cannot remember when it came, but it's a little over 2 weeks & it's getting worse !!!
If you find out anything that cures it or teats it ( other than surgery, for now )
Let me know. I pray that there is a cure for us !!! ( HUGS )

Good luck Marilyn! Let us know how the doctor visit went. I've had BMS for seven years and it's just terrible. I'm now on my 4th week of taking amitripilyne and it has helped. The first week I almost stopped taking it because the side-effects were awful, could barely stay awake during the day, dry mouth, zero sex drive, etc... but I stuck with it because I wanted to see if it was working. I was on 25mg but I've cut all the pills in half and the 12.5mg dosage seems much better. My pain which was at an 8 or 9 is now at a 3 or 4. It's still there but not as bad. I go back to the doctor on Friday and will let you know what he says. I can't stomach the thought of being on pills for the foreseeable future but I also don't want the pain to come back as strong as it was. I feel for all of us. If the outside world knew what we were going through our days with... hang in there.

To Marilyn, you are going to end up with a nuerolgist so I would advice skipping all the in-between doctors. An MRI is needed to rule out a brain tumor and other brain abnormites. For instance they discovered that I had MS and that could be causing the BMS. I didn,t care what caused it I just wanted it to GO AWAY !!! You are at the beginning of all this and the fact that you have other body problems leads me to believe ( and hope ) that they will find the cause of your problems and be able to treat it. One piece
of advice, if they want to do a nerve connecter test say NO??? This test is pure torture.

Thanks so much Suzanne & Jen. I'm about to scream !!! Did either of you have a pain in your bones that you could "pin-point" ??? I have a awful pain in a bone in my neck. It seems to be related to my BMS. But I am in such brutal pain, I really don't know !!
The trip to my Dr. was a waste of time !! I tried taking 75mg of Amitriptyline but it made my mouth so dry ... I will not do that again !!! Yesterday it kinda felt it was getting a bit better, but today is a different story !! It is BRUTAL again !!!
I need someone ( Dr. ) to get some answers, but they all say the same thing, your tongue, gums, teeth look fine !! ( If I hear that once more ) lol
Thank you both for being so helpful. I pray for us all !! There has to be a cure out there !!
Have either of you heard of "Oil of Cloves" ?? I read it was good for a sore mouth & tongue ?? I'm just wondering if it's worth the bother & being let down again !!!
Please take care !!! ( Hugs )

Hi, would either of you ladies want to share e-mail address or facebook, so we could talk privately ? If not, that's fine. I kinda feel like I can't talk openly here.
I am in 1000% brutal pain today ... the suffering has worsened !!
HOLY PAIN !!! :(
Thank you both !!! xx

Marilyn, I would be very happy to share my email or Facebook address but how do we go about doing that without giving it out to everybody???

Humm, good question !! Sorry I didn't think that far ahead, but I am sorry.
I will share my name on facebook. I just won't add anybody other than Suzanne or Jen. I will say here ... others need not apply !! ( Just in case !! )
Facebook me ... Marilyn Stride Hiscock. I will add you both if you'd like.
Thanks, looking forward to some well needed help. Tonight, like every night I feel as if I'm on fire !!!
Thanks so much. xo

Suzanne,
We haven't talked in a long while, this is Shania44. Sounds like your doing much better. Glad to hear that. I'm waiting to see if I can find better insurance with this Obama mess. If I can, I will be going to see a neurologist, if I can find one who knows about BMS. Wish me luck. I'll keep in touch. I have some other news that may be helpful to other suffers. I'll write back tomorrow with the meds an oral surgeon put me on, it is helpful.
One of my family members wants on the comp. I'm getting kicked off
for now. Be back soon with the name of the meds..

Suzanne, I forgot. What was the name of your surgery? If I remember you said it was Microvascular decompression. Is that right? Shania44

Hi Shania44, can you tell me what the Meds are that you are taking ? I can't get a Dr. to listen to me. ( I live in a small Town ) and it hasn't been heard of here. Nobody will listen !!
The type of BMS I have is gone all thru my body.
Did anyone else experience this ??
Thanks, Marilyn xo

Happy to say I don't have BMS ... I had a Pinched Nerve in my face & neck !!!
I am wondering where everyone is & how you are all doing !!
I hope you are all doing well !! Thanks for all of your help, it did help in narrowing down what my problem was !!
Thanks you all & God Bless !!!
Marilyn XOXO

I have suffered with BMS for almost 5 years. The pain is most severe on the back of my tongue, soft palate and my throat. I have been on dozens of prescription drugs, none that helped at all. I am currently taking alpha lipoic acid 600 mg for the past 6 weeks with no relief of symptoms. I am seeing a pain specialist who has tried 4 or 5 different meds, none have done a thing. I am so frustrated and just want some relief. What madness!!

To: Greggc, I can only imagine the pain you are going thru. I had something like it for 7 weeks & I thought I was going crazy with the pain. But I started taking Valium
for my back & the pain went away, so it must have been pinched nerves & spasms. It is better now !!
You have my sympathies because I could not live with pain like that !!!
Keep trying different Meds & I will keep you on my prayers !!!
Take Care & God Bless !!
Marilyn

Hello All... not sure where to post but this is the conversation i have been following. My mouth was injured during a nebulizer treatment, no surgery... irritated, red, bad taste and dry... eventually turned into less burning but now constant bitter taste when im not eating... dentist said all looks fine... what is this bitterness and is that typical?

What is Amitipoline? I have had BMS for 12 years and just found this site. Good to hear what others are doing.

Suzanne mc. I have been suffering with BMS for 6 months, after reading many comments it is discouraging that doctors are unable to help much. Seems like a guessing game. Your comment on 9/5/2013 said you were on Amitipoline. I was wandering if you are still taking it with success or have you found anything else. Hoping to hear some good news. Thanks

I asked my Dr about taking Amtriptoline too. But he said there are. LOTS of side effects. A VERY dry mouth and my mouth is already VERY DRY

I cry every day with this unbearable pain its horrible and you feel so alone - I pray for you - its so hard to be strong for your children I wouldn't wish this upon anyone and am desperate myself for help

I had foot and mouth disease a few months back, and it was no big deal to what I am experiencing right now. I was sure some one had an answer! I think I will buy some ice cream tomorrow and make the best of it! I did note that on the gums, inside (hard palate/frenulum area) I have two "Tories", one bigger than the other, not sure the significance like, if any? Anyway, I too feel the burn is the worst on the back of tongue, but also feel pain when I move tongue out and away from larger Tories it hurts. Lips and face tingle & I have had earache with tinnitus?!
You are real troopers! I guess I will gear up for an difficult trip ahead!

I just started the ALA today @ 600mg along with liquid vit B... I'm hoping this will help. Has it helped you at all?

I also take gabapentin and tramadol for my neck and back pain but the Alpha Lopaic acid is just for my mouth. Maybe all three have been helping. It's not totally gone. I can't really eat anything that is salty spicy etc

On another post someone said they were taking 2400 mg ALA. I have been taking 600 mg/day which helps a bit. How do I know how high I can go?

I took 2000 mg for 4 months and no relief at all. Please let me know if you find something that helps. TY

It's a Potassium/Magnesium deficiency. Trust me, load up on it and it will go away.

I used Alpha Lipoic Acid with no change.

The herb guy here in town had me take ALA

Think you can also get alma in toothpaste NEEM.

Mike.

I added a comment, but I seem to have lost it !!! I am suffering with BMS for 2 weeks !! I'm already taking Amitriptyline 25MG per day.

It's good to know I'm not alone in this as I thought I was !! Not many people have heard of it !! But it is BRUTAL !! I am suffering so bad & no one has any answers for me !!
It came on so suddenly too. I've read that is could be related to anxious & nervous feelings !! I don't know !! I am just in too much pain to think !!
I also have burning in my feet & back. Does anyone else have burning like that ??
Any info is much appreciated ... Thanks x

Hey all... do you have chronic bitter taste with this or just the burning? I burnt my mouth during a nebulizer treatment... the mouth has healed but now have the bitter mouth 24/7... any suggestions... types of drs to see or not see? Supplements or not?

Eating ice chips all day is the only way I get through the day. Going into my 8th year with BMS. They have no idea what causes it, they don't know how to treat it and there is no cure. God Bless you. My pain is so intense, there are times I feel like I'm going to loose my mind. No pain pill will touch it, no relief there. I'm so sorry you have this disease.

Benzo drugs help... I used Ativan. Others have used Xanax, Valium or Klonpin. They work to settle the nerve endings. See a neuro.

Shania read up on an spd block, I'm having one soon, I'm hoping it works as nothing else has it's not permanent but any relief is welcome. It works for some people and not others look it up on you tube. Only just found out about this after 18 months of hell and pain off the pain scale, been to loads of specialist but nobody mentioned this. Anything is worth a go and I am really phobic about hospital procedures I will have to have diazapam before I go and I hope the staff understand my phobia. Will let you know how I get on.

Interesting, back in January I had my teeth extracted and have dentures (what a thrill, NOT), anyway, trying to get used to them, the BMS started about a little over a month ago, seem to come along with a Hand Foot and Mouth issue, I am going to ask my dentist about this, maybe it stems from the dentures. It is painful and frustrating, I am going to try the Apple Cider Vinegar mouth mix and see if that helps at all. the product they gave me for the Hand Foot and Mouth was called "magic mouthwash" it gives me some relief, I just dip a cotton ball in it and dab my tongue at night, seems to relieve some of the pain. It's a little better in morning, but gets progressively worse during the day. Some of these comments have put me in a depressed state, doesn't seem very hopeful, but I'm going to try and stay positive, thanks for all the info.

try the tabaxco sauce in one teaspoon of water... 4-6 drops... keep in mouth for a minute then spit,,, it will feel hot at first then it will calm down your mouth,It has helped me ,,, now I am trying also the hot pepper tablets... I also got this after dental work. I have had it for 15 months and seen 15 profesionals... docs dentists and alternative health providers... I am doing acupuncture also ... 10 sessions at an affordable clinic... one every day... I am feeling good... not healed but better...

Just wanted to say that I admire your attitude regarding your BMS. Although it is a painful and depressing condition you can still say Blessed to be Alive. I hope that you will get some relief soon and will keep you in my prayers.

Tried the aspirin. Didn't work for me. Thank you though.

Shania Dr. Sirios in NYC. He is a DDS and teaches neurology at NYU. He healed a customer of my husband's two times with klonopin and Imipram (a tricyclic anti depressant used for neuropathy). I am titrating up to thirty mg of Imipram right now and already been on klonopin .5 mg),with some relief. Please God it will work for me,too. I weigh about 115# so that is my dosage.

Not sure how to use this site, but Shania, I hope you read this. My BMS pain is off the charts!! No quality of life! Eat ice chips all day and look forward to going to bed! That's my life. Sometimes I feel like I'm not going to be able to take it anymore! I'm in my 6th year with this! You're not alone. Some day we'll be vindicated, like people who had Chronic Fatigue Syndrome 30 years ago. Everybody thought they were nuts, or just hypochondriacs! Now doctors know it's a REAL condition. Hang in there!

Sorry to tell you this. It only gets worse and worse over time. I'm going into my 7th year, They do not know what causes it, how to treat it. I'm told there is no cure. No medications work. I have never had mine leave and come back. Mine has just gotten worse as years go by. I suggest prayer and a lot of it. Walk with Christ and he will help you through your day. God bless you, I pray he will relief you from this awful disease. The pain is so intense, some days I think I'm going to loose my mind.

I have never had a good day since I got this disease. Sure glad you have good days.Take care. Hope you have more and more good days .Mine is 24/7 and has got worse as years go by. Now going into my 7th year. I just ask for prayers for those who understand this horrible disease.

Try oragel paste. ..it numbs and lasts longer. Vitamin b12 and B complex for several weeks helped. My dentist said my tongue had the look of lacking those vitamins... has helped a lot but not totally gone

heay613, Could you tell me please who the doctor is and how to reach him? I need to know what tricyclics were given to help you and your friend. Please help. My doctor will contact your doctor. If you will just give me the information, please.

Yes, please share name of the doctor at NYU and the tricyclic. Clonapin does help me, but it's VERY adictive!

Yes please share. I am in pain 24/7 & it is unbearable !!
TIA

Are you still suffering with this? I am 27 and have only had this 13 weeks so far but have been to many different specialists and a few docs who have no idea what is causing it. I have found that popping a clove in my mouth does really help until I spit it out and then the pain starts up again.

Sorry to report the DDS turned out to be unreliable. I had issues with dryness from meds and despite many emails and calls (he's only in office once a WK), I gave up trying to reach him. He told me he would call twice but did not. Very unprofessional and bad practice. Anyway, he advised me to stop Plaquenil which I did. New rhuem has me back on plaquenil and started pilocarpene today. Though rheumy not sure what is going on he is treating me for Sjogrens.

please , please try clonazepam oral liquid if you can get it. thats if you have not tried it before, i have spent thousands of pounds on this illness and now through a new pain specialist i am getting some relief

I have had burning tongue for quite a few years so I know how everyone feels. I have been reading a lot about aloe vera and burning tongue. I ask my naturopathic doctor about using aloe for this purpose and she told me to drink 1oz aloe vera juice daily to see if it helps. If anyone wants to try it make sure you use organic. Hope this might help someone.

I've stated putting vitamin e on my lips... after three years I am feeling a difference in just a few weeks. I use a vitamin e stick from Walmart

Hi... I have had burning mouth for 16 months and have tried many drugs..alternative diets... and home remedies.
I was reluctant to try Tabasco sauce in a teaspoon of water... it sounded counterintuitive. However I was desperate and so I tried it... 4-6 drops of tabasco in a teaspoon of water. Out it on your mouth and keep in your mouth for up to a minute then spit... it will feel hot... but after a few minutes you may have some relief like I have had. Do it four times a day. I have also gone to Sprouts and bought hot pepper capsules and I have been taking them once a day for four days. I also found a clinic in san diego for acupuncutre and paid for 10 sessions... they are priced reasonably. I read a trial study that had great results with acupuncture taking burning mouth away... completely for some. That is my current regime and I have improved... I have been given all the drugs and they all make me feel terrible and non helped. This is awful and any relief is welcome.