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Burning Mouth Syndrome. I have it very severe.

Posted by mygrigio @mygrigio, Aug 5, 2011

I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate

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Shellb123 | @shellb123 | Apr 13, 2012
In reply to @bryleeraye "I am 53 and I have had burning mouth for about a year now. I have..." + (show)
@bryleeraye

I am 53 and I have had burning mouth for about a year now. I have been to dentists, pychiatrist, family doctor and everyone of the docs tell me to see another doc it is so frustrating … I am bipolar and take meds for it but this is a very depressing ailment in itself. All the docs look at you and don’t know what you are talking about, so I do my own researching all the time and I found this site….if anyone has found something that helps PLEASE let me know.

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And I also have been to every Dr. in the world who looks at me like I’m from another planet & tells me to see a different Dr. & you wind up going in circles!!! SO FRUSTRATING!!!!!

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Shellb123 | @shellb123 | Apr 13, 2012
In reply to @nanettehathaway "I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I've seen have never..." + (show)
@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I’ve seen have never heard of it. I am on gabapentin and Lyrica, they are not working. Does anyone know of a specific Dr. who treats this disorder. I am in pain 24 hrs. per day, it is very SEVERE pain. Need help and a support group. HELP, NANETTE

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Please do not use KLONOPIN & disregard any advice to take it! It is a CONTROLLED SUBSTANCE for a reason!! I have used it & almost lost my life!!!! I became mentally & physically disabled after getting off of it! You can’t think or function & people lose their marraiges, jobs etc. please be careful!!!!!!! I would not recommend taking this medication!!!!!

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lauren123 | @lauren123 | Apr 13, 2012
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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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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.

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Shellb123 | @shellb123 | Apr 13, 2012

The Mayo Clinic recommends Alpha Lipoic Acid & Vitamin B which are both harmless 🙂 I take ALA 200 mg. 3x day & Vit B once per day & I believe that they have helped some. Also, all of you who are suffering have you had any surgeries or tooth work? This happened to me after a tonsillectomy & I do believe I may have had some nerve damage?! Also, anxiety is a cause of this & I suffer from that as well; do any of you? The safer route to Klonopin which you’ve heard me suggest to stay away from is Neurontin, I am on 900 mg. 3x day, yes that much! Plus the ALA & Vit B & Zoloft for the anxiety. I also have some good days & some bad days & some inbetween days, the bad days are awful!! This is such a tough disorder to have!!!! Sometimes I find eating something small can change the way my mouth feels or chewing gum. I wish there were Dr.s that were knowledgeable about BMS because those of us who suffer need some guidance & relief! May God Bless you & keep you as pain free as possible!!! 🙂

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1 reply
Shellb123 | @shellb123 | Apr 13, 2012
In reply to @sheetrock0131 "I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri's ct scans.I..." + (show)
@sheetrock0131

I share your pain.Iam an 18yr sufferer.I have been to 3 neurogilists,oral specialists,dentists,had mri’s ct scans.I have been on seziure meds.and many more i can’t even remember.I have been to the best in the Boston area..No to much is known about this condition.I feel for you..I am 62yrs old,just retired and have this to look forward in my golden yrears..This is sad…

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Very sad & just awful!!! So so sorry!!! I wish we had some answers!!

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Shellb123 | @shellb123 | Apr 13, 2012
In reply to @carolaxis "Hi! I´m from Argentina. I got here since I´m investigating on my own over this syndrome...." + (show)
@carolaxis

Hi! I´m from Argentina. I got here since I´m investigating on my own over this syndrome. As I am a teacher I use my voice, and my mouth a lot. I´ve told docs that after each class, my mouth burns a lot, I have to get home, drink water, even ice to calm down the pain, I also notice some stickness in my neck. I try not to speak during afternoon so as to get better. On nights I feel my mouth gets dry, and my lips also. Now I´m waiting for the results on Sjorgen Syndrome. We´ll see. Until now docs have said they see nothing bad in my mouth or troat. I´m pleasead to have found this comunity. Hope we could support each other.

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Yes we all need to support each other!!

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Shellb123 | @shellb123 | Apr 13, 2012
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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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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 🙂

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lexie | @lexie | Apr 13, 2012
In reply to @bryleeraye "I am 53 and I have had burning mouth for about a year now. I have..." + (show)
@bryleeraye

I am 53 and I have had burning mouth for about a year now. I have been to dentists, pychiatrist, family doctor and everyone of the docs tell me to see another doc it is so frustrating … I am bipolar and take meds for it but this is a very depressing ailment in itself. All the docs look at you and don’t know what you are talking about, so I do my own researching all the time and I found this site….if anyone has found something that helps PLEASE let me know.

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I have found a wonderful group on Facebook. They are way ahead of dr’s. I urge everyone to join us and discuss what you are going through. I went to Mayo and was so disappointed at the end of my appt. They do not know anything. Please try FB.

REPLY
1 reply
sheetrock0131 | @sheetrock0131 | Apr 14, 2012
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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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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..

REPLY
sheetrock0131 | @sheetrock0131 | Apr 14, 2012
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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.

Jump to this post

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..

REPLY
lauren123 | @lauren123 | Apr 17, 2012
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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.

Jump to this post

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?

REPLY
sheetrock0131 | @sheetrock0131 | Apr 18, 2012
In reply to @lexie "I am a 55 year old woman who has had this for 13 years. It is..." + (show)
@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.

Jump to this post

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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