... without treatment? I had a benign cyst removed from my throat 7 years ago and this triggered my burning tongue syndrome. What hell! I've been to countless dentists, ENTS, oral surgeons, GPs and NONE of them know what to do. I've had my teeth ground-down, capped and night guarded, all to no avail. This site helps me feel I'm not so alone and suffering in silence. I can't stand to think I will live with this the rest of my life. Is it possible for it to just dissappear and resolve on its own? Thanks all
138 Answers
Kitty
6 Sep 2013
Gracious I wish I had an answer for you, then perhaps I'd have one for me too. I guess you have googled all the places and tried all of their recommendations? I have a problem with the roof of my mouth, been to dentists, oral surgeons and ENTs and they tell me there is nothing wrong. I know what you mean about why and when will it go away. I hate to think I have to chew gum the rest of my life to live with this problem. Are you taking any anxiety medications? I'm here if you want to talk. Judy
gonzo jen
6 Sep 2013
Thank you for your kind reply. It almost made me cry. I keep this chronic pain to myself and rarely, rarely bring it up to anyone because it's such a drag, and really, what can anyone do? I started taking amitripolyne (sp?) this week and yesterday started taking the ALA. I had some ALA from an attempt last year to take it, but maybe I didn't take it long enough based on some of the post on this forum I've read. For years I've told myself it's a dental issue, i.e. a sharp filling, tooth, etc. and then I am convinced I thrust my tongue on the left side of my teeth which then makes the burning worse. But after reading all the info on BMS, I'm finally pretty sure that that is what I have. Maybe it is worsened by my tongue fiddling with my teeth, and by my own anxiety... I just don't know. I have had a stressful few years, maybe i should try anxiety meds next. Thanks again to all on this forum!!!
Margiedaniels
12 Nov 2013
I too feel the pain, and keep it to myself. I have had ALL the test and then more from off the grid doctors that say they can help. Not so true. One crazy thing! When I work outside or workout at the gym and I sweat, it will go away. But after an hour or so it is back... go figure. At this time I am on no medication. None of it worked for me. Even the stuff off the internet that you see. They just take your money and go to the bank. I have my (go to list):
ice chips, GUM, sweet red wine, grapes, raisins, real lemonade, frozen juice bar but not the green ones, baking soda in water mouth rinse, and last is the Apple Cider Vinegar(Braggs ,organic, unfiltered). Just like the bottle says. It's really not bad tasting. My taste buds are all messed up anyway... I got it at my regular grocery store for about $3.00. Just know you are not alone out there. Margie
Kristy Samper
14 Nov 2013
The worst part is BMS is so obscure I believe that no one believes me.
Macey louse
21 Jan 2015
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 .
katinak21
7 May 2015
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!
sandraelsie
3 Jun 2016
have you had any luck with yourBMS since this post.
Dana Bean
23 Aug 2016
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.
victoria99999
25 Aug 2016
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.
dynoduck
2 Jan 2017
Try Valtrex worked for me
Jennymis17
30 Sep 2017
Hello. I developed burning mouth syndrome after having a severe case of strep throat. I was on a 10 day cycle of antibiotics and went back to the doctor to be re-tested for strep thinking I still had it. I've had numerous negative strep tests, negative mono tests, oral screenings, etc. My mouth burns continuously all day every day but with more intensity in the evening. I also do not tell many people about this condition because most people would not understand. I was comforted to find this site and to see that there are other people out there that understand what I am going through. I find that ice pops temporarily help and flushing my mouth with diluted mouthwash can often cool down my mouth for a short period of time. Good luck to all dealing with this condition. I thank you all for sharing your thoughts.
lscheffel
30 Oct 2017
Nobody knows how much we have suffered unless you have the painful syndrome. How many times have we been out for dinner and think "ok, what can I eat". It's not just Spicy foods. It can be salty, sweet, tomatoes, salad dressing. It takes all the enjoyment out of dining out or being invited to a neighbor's for coffee. It's 'Hell' and nobody except us understands. I've been told to drink ice water (dah) eat bald foods( who want to live on cream of chicken soup the rest of their lives). I wish more doctors were afflicted with this, maybe they would push for more research or something. I guess Ill just keep searching for answers myself!! km
jayne07
11 Nov 2017
Have anyone had any luck with amytryptyline? I tried it for a few days,but stopped as I felt tired and had trouble concentrating in the day, but am thinking of giving it another try! sometimes the Burning pain goes,then another feeling inside cheek,feels like a tooth rubbing/cutting cheek, (9all looks ok with dentist) any advice appreciated, thanks!
MSyrenne
4 Jun 2018
Please try CBD it is the only thing that has worked for me , it is completely natural no side effects . I take the pills but it is available in sprays and oils , vapes all sorts of different things ... I promise you , you will not regret it ! Maureen
Rgraha47
24 Jun 2018
I'd try the R stabilized alpha lipoic acid and take it 3 times a day. I've been on the standard version 1600 mg a day for almost a month but it contains the S and R version and they claim only the R is used by the body and the S gets in the way. Also large doses of B12 are on my daily regimen now..
Terry370
9 Dec 2019
I eat salty things and it goes away, but can't continue to eat all the time. This BMS is a real bummer.
endlessPred
6 Sep 2013
Sorry to join in however I have developed a sore tongue that hurts and burns whenever I have something fizzy, spicy, cold. Very aggrevating. Been getting worse over time. I frequently get thrush and treating for that makes my tongue go crazy with burning. The tongue has crevices and sometimes bleeds a bit in the very deep ones. Is this anything like what you two suffer from or did I get something new? I seem to get lots of new ailments. When looked at they suggest not enough folic acid, from mouth breathing at night. Oxygen drying out the mouth and cracking the tongue from the concentrator. Lots of ideas but no remedies. What do you think?
Kitty
6 Sep 2013
Did the folic acid help?
gonzo jen
6 Sep 2013
My tongue has never bled and my burning actually goes away when I eat or drink. I'm sorry but I don't know what to think of your ailment, have you tried acupunture?
endlessPred
6 Sep 2013
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.
Margiedaniels
12 Nov 2013
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.
Lulu Belle
26 Aug 2014
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!
endlessPred
6 Sep 2014
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. :)
victoria99999
25 Aug 2016
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.
kelelaann1
11 Feb 2017
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
sandraelsie
2 Mar 2017
thats how my burning tongue syndrome started.
MSyrenne
27 Mar 2018
I THINK the true meaning of BMS is a burning pain with no visible reason ... my doctor says it was mostly likely caused by having all my upper teeth removed all at once about 15 years ago. Right after this happened the burning started, there are no outward signs of this burning , it is always my tongue but spreads to my lips and sometimes gets so severe I wish I could rip my lips off ... having some food or lozenges, even toothpicks helps a little . My doctors have told me the reason these things work, to a degree, is that BMS is caused by nerve damage and when you put something else in your mouth it kind of splits the signal from the nerve and therefore lessens the pain... one message being "there is a "mint" in your mouth" the other message being "your mouth is on fire" ... makes sense when the doctor says it, hope I have explained it well enough.
I have tried probably every anxiety drug there is out there and in 15 years have not tried one that works, all they do is make me sleep and sleep. I do take one ( right now gabapentin) just to keep me from being so depressed over this whole situation . I am sorry I have no upbeat words for this, and give no hope, but maybe SOMEONE out there reading this has found something and will share that information . Thanks!
burningtongue3
20 Nov 2019
I have just read your plight. I also have a crazy looking tongue, it bleeds on the tip and burns after coffee and just gets worse as the day gets long. Few people know of this and can't relate and still even pass the salsa to me! It's definitely a lonely struggle, I've been diagnosed with BMS-have had it for coming up on 3 years in Dec. and hate to say it gets the better of me most of the time.
Terry370
9 Dec 2019
It sounds like you do indeed have BMS. My tongue does the same thing. It has gotten worse over time, I gargle with Hydrogen peroxide and it helps my tongue heal, but my mouth still burns along with my lips. Hope you get relief soon.
Suzanne mc
6 Sep 2013
Gonzo Jen, I have suffered with severe pain for 10years and I think I could write a very long book on this hideous condition. The only thing that has actually helped (not cured) is surgery that took a small amount of my skull. to sever the glossopangneal nerve and part of the vagus nerve. Very difficute to recover. Then I discovered Amitipoline on this site so asked my doctor for it and after 4weeks I had very noticeful relief. I have been on it for about 5 months and have very little pain. I'm wishing you the best of hope and God's help.
gonzo jen
6 Sep 2013
thanks. yes, i could write a very long book too about this weird, unknown syndrome. i feel so utterly alone in my world with it. i know it's affected my relationships and work. but i can't believe you had brain surgery. wow. when you say it took a long time to recover, what do you mean? how long and what was so difficult about it? i've just started amitripoline and ALA... and am keeping my fingers crossed that this helps. does the amitripoline help you more than the surgery did?
Suzanne mc
6 Sep 2013
Ok here goes. First every side effect I had the doc warned me about prior to surgery plus many more that thankfully I didn't have. I decided that I would rather have those than what I was going through now - and one of those side effects was death. I had severe pain on right side in my mouth. On really bad days it went down my neck into my chess . Also it went up from my mouth to my eye. The surgery completely took away the neck and chest pain. It took away the up to my eye pain. In my mouth it took away the upper roof and it took the pain in rest of mouth from a 9 to 2 - 4, the side effects included going deaf in my right ear but it started gradually coming back after 3 months. The worst was I lost the ability to swallow anything but thin liquids and that included cream soup because that wouldn't go down. The doc had me see a speech therapist to teach me to use my tongue again and I finally retained of my the use. Long and difficult but I would do it again . All the good luck and feel free to ask me anything.
Marilyn M
1 Oct 2013
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.
Suzanne mc
1 Oct 2013
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.
Marilyn M
2 Oct 2013
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 )
gonzo jen
2 Oct 2013
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.
Suzanne mc
2 Oct 2013
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.
Marilyn M
4 Oct 2013
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 )
Marilyn M
4 Oct 2013
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
Suzanne mc
4 Oct 2013
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???
Marilyn M
5 Oct 2013
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
shania44
5 Oct 2013
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..
shania44
5 Oct 2013
Suzanne, I forgot. What was the name of your surgery? If I remember you said it was Microvascular decompression. Is that right? Shania44
Marilyn M
6 Oct 2013
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
Marilyn M
4 Nov 2013
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
greggc
6 Nov 2013
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!!
Marilyn M
7 Nov 2013
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
Inactive
25 Nov 2013
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?
lsirowkop
5 Sep 2014
What is Amitipoline? I have had BMS for 12 years and just found this site. Good to hear what others are doing.
Lindy M
3 Nov 2014
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
jgibson6
21 Mar 2015
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
Smith444
12 Jan 2017
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
lam015
11 Mar 2017
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!
jgibson6
6 Sep 2013
Mine isn't totally fine but is better. Roof of my mouth still feels sore and raw. The herb guy here said to use alpha lopaic acid.
Kitty
6 Sep 2013
Does it help you?
greggc
6 Nov 2013
I have been on 600 mg alpha lipoic acid for 6 weeks, absolutely no relief at all
gr8fulamy
29 Jul 2014
I just started the ALA today @ 600mg along with liquid vit B... I'm hoping this will help. Has it helped you at all?
jgibson6
29 Jul 2014
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
lsirowkop
5 Sep 2014
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?
Golddust
11 Sep 2014
I took 2000 mg for 4 months and no relief at all. Please let me know if you find something that helps. TY
Karla9405
14 Apr 2015
It's a Potassium/Magnesium deficiency. Trust me, load up on it and it will go away.
kelelaann1
11 Feb 2017
I used Alpha Lipoic Acid with no change.
Jennymis17
30 Sep 2017
My dentist just recently told me to take this. 600 mg a day. I have not started but it doesn't seem to be working for many. Thank you to all who are sharing your thoughts on this
Rgraha47
24 Jun 2018
Try the R version of Alpha Biopic Acid and B12.
This combo is working for me so far 80% improvement.
Good luck
mwiggins1009
1 Sep 2018
I tried it for over 2 years with no relief
texasnic204
8 Sep 2013
Ugh, this medical problem is so annoying. I've been to the dentist, an ENT and my primary care. The ENT gave up. The dentist prescribed a mouth swish anti depressant that was supposed to reset the nerves. I did it for about 1 week and was so tired and emotional all the time from the side effects, I finally stopped with no improvement. She also gave up saying some people just have it and there is no cure. The primary care doc just gave me elavil to try (it's supposed to help BMS) and after the first night the side effects are I'm depressed, irritable, agitated, and can't seem to keep my eyes opened.
The ENT doc said just about anything you try has worse side effects then the BMS, which I'm about to agree with. I haven't been able to find any stories where people have gotten better. My sister said, "who spends time on the internet when they are healed? It's only the people who are searching for a cure that post online." I think she may have a point. It's just so frustrating feeling like you just ate a pepper or someone just slid sandpaper down your tongue!
gonzo jen
10 Sep 2013
hi texasnic, yes, exactly. i feel like i'm hearing myself in your words. i've had a better past two days than i've had in years (and haven't been needing help)., and it is because of the amitripiline (sp?) i began taking a week ago tomorrow. yesterday, day 5, i was going through my day when i was taken by surprise, that my pain wasn't an 8 or 9, but more a 3 or 4. great news for me. however, like you, i had/have horrible side effects the first few days and still feel off tilt a bit (feel dizzy after bending down), but i promised myself that i'm giving it at least a week. now i've done a week and i'll do one more but i want to start tapering off of them. i've researched them and it seems a lot of people have trouble falling asleep when they stop taking them. i hate that i'm on meds. i've never taken anything regularly like this.
but i'm also considering that maybe i have deep anxieties too, that i can more calmly look at while i'm a bit drugged. would much rather do it all holstically but this relief is a god send for now. i've also started the supplement mentioned above and am doing yoga daily (helps too). good luck to you!
jgibson6
3 Dec 2014
Try amitriptolene AND ALA and dry mouth lozenges... and I also use neosporin at nite before I go to bed... try for.at least 3 months
jgibson6
3 Dec 2014
The herb guy here in town had me take ALA
Michael3551
9 Jul 2017
Think you can also get alma in toothpaste NEEM.
Mike.
junejoan
10 Sep 2013
Hi gonzo jen - Good question - has anyone found their BMS just disappear or has anyone found an answer to this syndrome. As some sufferers have found - amitriptyline does help keep it calm. I take amitriptyline and it helps immensley, although at times, like now my tongue and lips feel like burning chillies, but it really is my only answer at the moment. Unfortunately when my BMS is playing up it also makes me irritable and snappy, I can't help it and prefer just to be on my own. Sweet things helps it go away for a short while but of course no good for the waiste line. I could not go in for any op or teeth ground down, because I really dont think that it will help. Mine just happened out of the blue and to carry on like this I dont like to think about it. The other thing that helps me for a short while, again not really good for the gums, is that I brush my teeth, gums, tongue so hard that they tingle and it outweighs the burning sensations for short while.
We all communicate on this forum hoping that one day there may be an answer to this BMS. All advice and ideas form anyone is appreciated. Are ther any answers to why this has occurred. Good Luck June
gonzo jen
10 Sep 2013
hi june, thanks for your advice and story. i know all too well about candy and gum helping. last summer i had two very, very deep cavities filled because of all the junk i ate trying to mask my BMS. so i've given that method up. the things that make my BMS better are: sleeping, gardening, eating and sex (although i'm much more not-in-the-mood when my mouth is in hell). what a weird and terrible thing this condition is. i want to figure it out or find some common thread. do you think it's anxiety, depression, dental work, hormones or just bad luck? when you hear the saying that your suffering will make you stronger... i feel like i've bucked up enough and would kindly now just like my life back before my BMS... for now at least, the past two days have been better than i've had in a long time. day five of my first 25mg of amitripoline. pain went from 8 or 9 to a 3 or 4, wondering if it will become less than that, i hope.
but i don't want to stay on it for very long... wondering if it will come back as strong if i stop the meds. ? thanks for listening and sharing : )
junejoan
10 Sep 2013
Once again hi gonzo jen. I cannot get your reply msge up in front of me as I type so I will try and remember. Yes sleeping does help and I think it is because all our nerves are at rest. Although you may find that amitriptyline does give you a dry mouth. I must have water with a light hint of fruit juice next to my bed because sometimes my mouth and throat is so dry it often wakes me up, but dont give up on the amitriptyline because at the moment it seems it is the only medication that helps calm this horrible condition, although not all the time. If there is anything that connects this condition or any common denominator I really dont know, as I said it happened completely out of the blue and boy oh boy was it so sudden and painful. Mine started with a very powerful metallic, irony, tinny, burning, singeing, scolding, soreness sensation throughout the mouth, tongue, gums, the whole mouth area and at times at the back of the throat.
I was beside myself and when by myself or with friends (indoors) I had to stuff a tea towel into the whole of my mouth, it took a long time after various visits to doctors etc to be given amitriptyline. I even thought at one time that because it had calmed down so much that it may have gone away so I actually stopped my tablet to test if it had and oh boy did it hit me again. I take 5 x 10mg a day, normally two on awaking, two in the afternoon and one in the evening, if I forget I actually get a warning as my tongue starts with a burning tingle. For me that is no way I can stop these tablets until a cure, some kind of help or other treatment is found. If you find amitriptyline works for you and it may take a couple of weeks it is not worth the pain and discomfort to stop them. As you said and I have mentioned, is there common factor involved. When I went to a meeting Eastmans in london, there was about thirty of us and one thing that stood out, there was only maybe three or four men there and most of us women were over 50. They are researching it but I have been told a few times, it is a big question of why and how this is effecting us. I better finish here or I may go on a bit longer because when you' re concentrating it kind of diminishes for a wee while. Take care and if you hear of any magic potion let me know. June
Marilyn M
1 Oct 2013
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
Inactive
27 Nov 2013
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?
shania44
6 Dec 2014
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.
Jennymis17
4 Dec 2017
Hello Again All, I cant believe I am saying this but after almost 4 months my burning mouth is almost gone. I started taking an anti anxiety medication and within a week I had great relief. Crazy part is that I suffer from anxiety but very rarely take meds to control it because I don’t like to be on daily medication. Through research I’ve learned that BMS can be caused by anxiety and triggered by a sudden/traumatic oral/throat event. Both of which I had this past summer. Turns out that one of the recommended medications for BMS (kolonopin/clonazepam) was the same anxiety medication that I’ve had a prescription for but rarely take. Of all medications... it was the one I had! Anyway, although I don’t want to be on a daily med regiment l have stared taking it every other day and I am almost complete free of the burning mouth/ tongue.
I truly thank God for helping me with this, and I pray it does not return because the thought of living with this condition was so terrifying. I wish all that suffer good luck and talk to your doctor about anxiety meds.. maybe it might help you.
nosls13aa
26 Jul 2014
For me it started six months after my dentist recommended switching to Sensodyne, which does contain SLS (Sodium Lauryl Sulphate). Switching back to my long-time favorite herbal Thera-Neem toothpaste (no SLS) solved the problem within a few days.
Of course I can't be sure if it was SLS or another ingredient in Sensodyne, but I am definitely not going to try another toothpaste for a while now!
shania44
6 Dec 2014
Sounds like you may of had a bad reaction to your toothpaste. No BMS... I'll give your toothpaste a try.. There is no cure for true BMS. Your very blessed.
southernsavage
7 Jun 2017
That does not sound like BMS. You are blessed. I work in the dental field. I brush with coconut oil. Anything that is spicy or has mint sends me through the roof.
madhattersbash
27 Jul 2014
Very interesting... I use Sensodyne (Pronamel). I had BMS for over a month a couple of years ago... two different doctors prescribed Rx products, but neither seemed to make any difference. Finally, if just went away (thank heaven!!),
shania44
9 Nov 2014
You are very lucky. I don't think you had BMS.
AMJ60
4 Aug 2014
I have finally figured out that I have BMS. I think mine came from a long drawn out amount of dental work last year and this year and changing dentists was not the answer.The most recent dentist was I feel the cause as I ended up losing a good tooth that hed crowned and root canaled. I have had blood tests and see oral specialist. My zinc was low so I have been taking zinc for 2 weeks but still not improvement. The specialist suggested a mouth rinse of tabasco sauce as capsicum has been known to relieve.
My tongue is always finding teeth so they are making me a guard or plate to put over teeth that seem to annoy me. I do not want to take antidepressants
so am hoping it does go away.. it worsens at night and gone are the days of enjoying a wine and chewing gum relieves it in day. I have no trouble at night so I do think its a nerve condition. The only relief I get is putting my tongue on roof of mouth and focusing on leaving it there and it settles down.
I get very irritable and just want time out a lot..
when I had the long drawn out dental prob I was using all sorts of chemical rinses and also sensitive tooth paste so whether it triggered it and I noted when tooth came out... my tonge was burning hot.. so not sure if this was connected to it. but before tooth came out I had the sensation between teeth now its pred on tongue . so if anyone similar let me know
shania
12 Oct 2014
I'm sorry. No cure, nothing works. It only gets worse as the years go by. I'm now on my 8th year. No one knows what to do to help me. I'm in so much pain. Nothing touches it. Only God get's me through each moment of the day. I'm so sorry you have this horrible disease, I have no quality of life anymore. The pain has taken everything away from me. I can't even talk anymore. I'm so sorry for you, if you have BMS. I'll add you to my prayers
lkbedwell
8 Feb 2015
My Mom who is 76 has been suffering from this disease for 8 years. She has no quality of life right now and is just existing to get through the pain. I am so sad and frustrated for her. I want her to know she is not alone.
Momatude
17 Feb 2015
Benzo drugs help... I used Ativan. Others have used Xanax, Valium or Klonpin. They work to settle the nerve endings. See a neuro.
sandraelsie
1 Jul 2016
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.
Dana Bean
23 Aug 2016
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.
kelsey01
16 Jul 2017
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...
JBB7951
31 Mar 2018
Have you tried orally disintegrating clonazepam yet? You take it twice a day and let it dissolve in your mouth. My BMS is gone.
RTM21
11 Oct 2014
Hi everyone,
I believe I am in the same boat as everyone in here. Back in January of 2014, I attended a bachelor party and completely lost my voice. I also teach for a living so this was not good. I gradually began to feel a scratchy sensation in my gums and the roof of my mouth whenever speaking (My mouth gets very dry). If I am resting, it's really not an issue. Anyway I thought this was just something to do with a strained voice. When the school year ended, it did not become better. I eventually saw my general practitioner, two ENT's, my dentist, an oral surgeon, and had an endoscopy through a gastroenterologist. Luckily, my vocal cords are fine and well but they did say I may have GERD and prescribed me omeprazole 40 mg. It stopped my acid reflux but did not relieve the symptoms of my mouth. All professionals I saw stated that there were no sores or lesions so there's no infection.
I began to think I was going crazy but I knew something was not right. Anyway, I have it narrowed down to dry mouth or Burning Mouth Syndrome. I just began taking Alpha Lipoic Acid so hopefully that helps. Does anyone have symptoms like mine? I feel a scratchiness in the GUMS BEHIND MY UPPER MOLARS, along the inside gums of my upper teeth, and along the roof of my mouth. I wouldn't say it's a burning but more of a dry scratchiness. Thanks for your help.
WMKC
25 Oct 2014
This is my first birthday with BMS. Blessed to be alive and all. But no one understands "No, not really in the mood to go out and WATCH you all enjoy dinner". Everyone here is right. It's a very lonely & frustrating condition. And none of us can really complain out loud because we ar'nt looking for pitty. We want answers! We smile and bear it. I wish you all well. It shouldn't have taken me 4 visits between 3 doctors JUST for a diagnosis. So please, let's all keep posting & pushing for a cure or we won't get answers. Finding this page of posts made me feel better. Thanks all! :)
shania44
9 Nov 2014
So sorry you have this condition. I have no quality of life left. What are you taking for pain and suffering. No one has any answers. I've had it now going on 7 yeas. May God bless you. Mine only continued to get worse year by year.
Misha6
18 Aug 2015
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.
Misha6
18 Aug 2015
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.
Jancaulf
9 Nov 2014
Have had burning mouth syndrome 2.5 years - tried everything, also two hospitals and no luck
BUT in the last couple of weeks have been using anbesol (has lidocaine ) occasionally, also chew sugar free gum and the thing that has made a BIG improvement is to melt quarter of a disprin (soluble aspirin) on the sore part of my mouth (half the tongue and roof of mouth) 3 or 4 times a day (nowhere near the amount you can use) and after a couple of days it started to feel better - now a week on can't tell you the relief. Good luck, I know how distressing this can be.
shania44
9 Nov 2014
I'm willing to try anything. I have had it going on 7 years now. I have no quality of life left. Mine has continued to get worse year after year. It is at a point now. That I can't even talk. The pain is so intense. The worse pain I have ever encountered, It is in my whole mouth. I don't go anywhere. I can't do anything. For the pain controls my whole life. Yes I've tried lidocaine, magic mouth wash. I now take 10mg/325 of oxycodone. 4 times a day. 2mg.
of zanax 3 times a day. 2 100mg of Trazadone to help me sleep. I also take Baclofen 10 mg. 4 times a day.Clonidine 2 4times a day. Nothing works. I don't mean to sound like you must of had a mild case. Or you were not in pain. But if you were experiencing what I am 24/7 for 7 years. I don't believe an aspirin would give me any relief. But I will try it. I'm glad for you. But I'm not sure if there is anyone in this forum who is experiencing the extent of pain I deal with everyday of my life.
Marilyn M
29 Nov 2014
Thanks, I'm going to try the Aspirin now !!
I'm going crazy in pain today !!! :(
shania44
6 Dec 2014
Tried the aspirin. Didn't work for me. Thank you though.
heav613
11 Feb 2015
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.
JimBe
12 Feb 2015
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!
Cdulitz
26 Oct 2019
I have had this BMS for 2 yrs. tried a lot of thins as well as several Drs. I now have been going to a Dr. at UCLA who put me on a few different drugs and nothing works. She said as a last resort I can try Acupuncture in my mouth and there are two Drs here in Calif that do it——once a week for 6 weeks. I guess that will be next. Has anyone had it and did it help? Don’t expect to ever get rid of it but anything to reduce the pain. Some things that make it horrible: chocolate, of course salt and most spices, acid foods, etc. Chew packs of gum a week—always in my mouth. A Dr told me to use coconut oil at night but doesn’t do much. Tried all kinds of mouth washes, etc. but no relief .
Cdulitz
26 Oct 2019
I have had this BMS for 2 yrs. tried a lot of thins as well as several Drs. I now have been going to a Dr. at UCLA who put me on a few different drugs and nothing works. She said as a last resort I can try Acupuncture in my mouth and there are two Drs here in Calif that do it——once a week for 6 weeks. I guess that will be next. Has anyone had it and did it help? Don’t expect to ever get rid of it but anything to reduce the pain. Some things that make it horrible: chocolate, of course salt and most spices, acid foods, etc. Chew packs of gum a week—always in my mouth. A Dr told me to use coconut oil at night but doesn’t do much. Tried all kinds of mouth washes, etc. but no relief .
jbrownback
16 Nov 2014
I have had BMS for almost 3 years. In May it just stopped for about 3 months. Then one day, it came back. I hate to think I may have this for the rest of my life, but I'm starting to think that is a possibility.
sam13dan
17 Nov 2014
I HAD THE SAME THING HAPPEN. Wow!!!
Marilyn M
29 Nov 2014
I've had BMS ( even tho the doctors say it's not BMS that I have ) I have all the symptoms ) for 15 Months now. It went away for 3 weeks & came back again !!!
I am going thru HELL !!!
Does anyone have any suggestions ???
Marilyn
shania44
6 Dec 2014
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.
Marilyn M
29 Nov 2014
Hi, I just wanted to let you all know that I use Biotene Toothpaste & Mouth Rinse, it helps a bit for a little while. I am in so much pain that even a little relief is good. You may want to try it. I also chew Juicy Fruit Gum & spread it over my tongue. That helps a little too. I drink Ice water all the time & like someone else said, when I'm outside I find it doesn't hurt as much. I have noticed that any spicy food at all kills me !!! The Doctor says it's Damaged Nerve Endings but I don't agree ... BUT I really don't know !! I do know it hurts & I'm lost as to how to get rid of it !! It's been 15 Months now & I really don't know !!! I'm willing to try anything at this point !!!
Thanks for sharing your thoughts & ideas ... it helps to know I'm not alone !!
There are days I don't want to get out of bed because as soon as I get up it starts !! I say ... Mine wakes up about 15 minutes after I do !!! Anyone else find that to ??
Thanks & God bless you all !!
Marilyn
shania44
2 Dec 2014
I sure hope you no longer have this condition. I'm going on my 8th year. I hate to give you bad news. Mine has gotten worse and worse every year. I'm now at the point. I have no quality of life at all. I can hardly speak anymore, due to the pain. When I first had it . It would die down during the night. Start back up in the morning as you said. Now it is 24/7. The only relief I get at all, is walking around my house with ice chips all day. I'm on so much pain medication. But honestly it doesn't work either. May God Bless you, I pray yours has gotten better.
Marilyn M
6 Dec 2014
Yes Shaina44, I still have the BMS. I am having a good day tho, it seems to have settled a bit. I am praying for you all when I pray for relief for myself !
It's no harm to call this " The Curse " !!!
God Bless you all !!
Marilyn
shania44
6 Dec 2014
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.
jgibson6
2 Jul 2016
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
shania44
2 Dec 2014
Now going on my 8th year. No cure, know one knows how to treat it. Sorry, I hate to be the barrier of bad news. But it gets worse year after year. May God Bless and keep you strong. He is the only way I get through the day. Oh an walking around in my house eating ice chips all day long. Take care and I shall add you to my prayers.
heav613
28 Jan 2015
I have found someone cured of burning mouth. Just paid my friends dds $550 for consult and exam. Going to treat me same way as my friend with increasing doses of tricyclics and clonazapim .5 mg. The dds is also a neurologist and teaches at NYU. I am finally hopeful as he helped my friend two times
Friend had BM a few yes ago and it was cured in days. Went off meds and back after years. Dr gave him new rx and cured again!! I wish u all relief as I have had essentially no life and suicidal for a year. Ask a neurologist or dds or someone to give u rx for these drugs. Peace
JimBe
10 Feb 2015
I'm on my 6th year! It's horrible! Almost unbearable! I, too eat ice ALL DAY LONG! It hurts to eat or talk. I feel for everyone who has to endure this. I have tried everything. Nothing works! God bless you!
shania
10 Feb 2015
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.
lsirowkop
11 Feb 2015
Yes, please share name of the doctor at NYU and the tricyclic. Clonapin does help me, but it's VERY adictive!
Marilyn M
22 Feb 2015
Yes please share. I am in pain 24/7 & it is unbearable !!
TIA
Amy-Lou
24 Apr 2015
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.
heav613
25 Apr 2015
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.
sandraelsie
31 Jul 2016
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
TLS1
30 Apr 2017
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.
Bsrbie
2 May 2017
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
kelsey01
16 Jul 2017
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.
debsulkov
20 Aug 2017
Hi Shania--I've read many of your posts. I've had severe mouth pain for 7 months. Feels like I put a handful of nails in my mouth. Or a mouthful of scalding hot coffee and can't spit it out. I heard from 2 doctors, and a dentist -- 3 doctors in 7 visits. They're all quacks. No one had any idea what was going on. "I've never heard of this before." One said Thrush. One said Dry Mouth. I'm on my 4th prescription. Have had 2 "Magic Mouth" prescriptions. No magic whatsoever. I should be a stockholder in Biotene. Biotene Dry Mouth spray isn't bad. I finally went to Johns Hopkins University. My insurance won't cover it. Don't care. I've spent countless hours on the internet researching stuff. The consensus is they don't have a clue what causes it, and there is no cure. Here's the path I'm on with Johns Hopkins. It's appears to be either nerve related or saliva production related.
We're approaching the saliva production first. The doctor prescribed Pilocarpine 5 Mg 3X/day. It will take several weeks to see if it works. I'm having a CT Scan to see if the nerves fit in. With this stuff, all you can do is pray!
nomorewalnuts123
9 Nov 2017
Hello fellow sufferers... how I feel for all of you/us. Mine started about a year ago, after I had a salad with a very spicy-hot dressing. That kicked off a couple of weeks of hell in my mouth after never having had a reaction like that to anything. Ever since then... I have had on and off outbreaks. My theory is that it's the food we are eating. I have to be extraordinarily careful as to what I eat. For me, it feels like "dry mouth" has something to do with the condition. If I eat, say, crackers and they both dry out my mouth and they scrape it up... then I get the pain and burning starting within an hour or two. I have found that I cannot eat walnuts or apples. (They were never a problem before the initial onset after burning my mouth with that spicy-hot dressing) I also cannot eat anything that is even the tiniest bit spicy-hot, it's as if my mouth can no longer tolerate any "heat" at all. So I avoid those types of foods and it's helped.
Also... since my mouth would dry out SO much when I slept at night, I became a "mouth-taper." Yes, you read that right! At night, just before I go to sleep, I use a small section of a band-aide and tape the middle section of my lips together. My goodness it makes me sleep so much better. No more dry mouth at night! I think that is helping my mouth stay less sensitive during the day. I also swish with a tiny bit of coconut oil about 3 times a day to keep the interior tissues of my mouth less dry., and drink lots of water. Bottom line: Dry food with sharp edges (popcorn, chips, toast, etc) I avoid like the plague. Salted food, same thing. Salt is murder on my mouth. Spicy food. Nope, can't do that, either. Anything that scrapes or dries out your mouth, or irritates it, try avoiding. I was shocked at how the acid in apples can irritate, I love them and they are so good for you, but I no longer can eat raw apples. Since I have made these changes, my life has gotten a lot better. And yes, poking around in your mouth with your tongue... yes I have noticed a relationship between "pestering" my mouth with my tongue and an increase in the irritation/pain... so bottom line, the goal to try is not causing physical or chemical irritation to your mouth. Once an outbreak happens, I found it took over a week for it to clear up once I adhered to more careful eating and not irritating the lining in the mouth. Taping my mouth closed at night (try it... you breathe better and your mouth stays moisturized) has also been a real helpful discovery. As for the misery, the depression, the feelings of hopelessness... I know it all well, I still live with the fear of outbreaks, and I pray for everyone on this site that answers are found and people are helped because it is hell. Don't give up in your search. My own theory is that the answer lies with the food that comes in contact with your mouth, and the fact that we are all probably not producing the amount of saliva that we used to... which makes the tissues of the mouth more vulnerable to irritations.
Beth
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