← Return to Burning Mouth Syndrome. I have it very severe.

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mygrigio (@mygrigio)

Burning Mouth Syndrome. I have it very severe.

Skin Health | Last Active: Aug 31 8:42am | Replies (536)

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@lexie

I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.

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Replies to "I am a 55 year old woman who has had this for 13 years. It is..."

Its awful I’ve been suffering for 8 years 🙁

I forgot to tell you I have already tried a holistic approach. I was told to soak in hot tub with 1 cup bleach.Didn’t help/ I tried bio identical hormones,nope, its not gerd I stopped eating for 4 months just liquids. Please believe me you are wasting your time. I even talked with someone on the internet that said she had all her teeth pulled, and it didn’t help. I believed it is caused by damage to one of the cranial nerves that is responsible for taste.All of you will be in my prayers

Hello lexie and phyllism, I think that there may be different causes and treatments for BMS. After ten years of trying different methods, I find the greatest relief comes from Klonipin and a laser. I don’t think that hormonal testing will help (I had a hysterectomy and there was no change.) Changes in the weather also make a difference as my BMS also involves some arthritis. I have read that women have this condition more often than men.

Hi Lexie,i am a 62 yrold woman who has suffered for 18 yrs.I have done everything,from neurogilists,oral specialists,accupuncture..I have been on more pills than i can count.I have visited the best in Boston,i also have gerd and digestive problems and the Dr thought that was the problem.He put me on 4omeprazoile per day along with clonazepam.It is not the gerd.The omep.did not help the bms.I to would like to know your results..Good luck..

Hi Laure,i have same condition and when there changes in the weather my bms becomes more severe.I am an 18yr sufferer.Gone to more specialists in Boston area,,,

I feel your pain..I have had bms for 18yrs.I am glad i found this sight.I have been the whole route.If you would like to ask me any questions you might think of don’t hesitate.

Hi Sheetrock, it’s good to hear back from someone who understands this condition. Weather changes, sinus conditions, and certain foods all
aggravate the pain in my case.

Whoever said that having your teeth pulled is NOT a good move was definitely correct. I have been told repeatedly that this will worsen the condition because they can’t work with your bite. My best help came from dentists specially trained in facial pain. There is evidence I experienced nerve damage from an aggressive dental procedure, I’ve heard that a significant number of cases start from a dental procedure, or it can be simply genetic.

Yeah I’ve been through the whole route too 🙁 including almost losing my life after trying to get off of Klonopin!!! Nasty medication & controlled for a reason!! I maintain with Neurontin, ALA, Vit B & Zoloft. Dr’s are just clueless…. How are you maintaining & doing?? Its just awful I’m so sorry you have to deal with this too!! Good Luck & God Bless 🙂

Hi Lauren,I am so glad to finally talk to people who have this condition.For 18yrs i have never talked to anyone who knows what i’m going through.I will say you are correct about pulling teeth.An older man in a nursing home was suffering with this condition and they had all his teeth extracted,his burning did not stop/I to have had a lot of dental work done to me in the past.Alot of extractions and i often wonder if that has played a part in my condition.I enjoying talking with you and others,believe me it helps..Sometimes i feel it just might be genetic..Please feel free to keep in touch.We all need one another..

I went to Tufts cranial facial pain clinic in Boston,Ma. I spoke with a surgeon and he told me this comes from a nerve in the brain,he was willing to give me shots to settle it down,but there are risks.I could have permement numbness and my cheek could sag with no feeling as well.After 18yrs i might consider it.I just can’t see myself living another 20yrs(if i do!!!) with this awful condition..I pray for all who suffers from this..

Yes, we do need to communicate, since there seems to be such a lack of understanding in the medical community. It does indeed help to have a support group for this problem. There seems to be a lot of disagreement about causes, diagnosis, treatment options and long term issues. Does anyone get over this problem? Where are the folks who have found successful treatments, or are they dealing with a different condition?

I have been on clonazapam for many years,its temporary.Once it wears off my burn is back.I also burn in throat,and have pain in ear and right side if my head.To be honest with you,somedays i feel like ending it all…

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