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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@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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Hello,
I have read all your posts- very helpful but am finding nothing more current than 2012 postings?? If you are still “there,” I would love to hear from you, I live in the greater Buffalo, NY area & have exhausted all possible avenues of help around here (thought of trying Boston but that doesn’t sound any better )and feel very hopeless and despondent. I have read of success by a London Dr.who uses low level lazer treatments directly in the mouth but can’t find any clinical trials in the US. Know anything about this? I’ve pretty much given up on all meds but do find something called xylimelts (dissolve over time in mouth) give some temporary relief.
Would love to hear from you,

Maggie45

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@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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Hello @maggie45,

Welcome to Connect; I’m so glad you found us.
We do have more current discussions taking place with regard to burning mouth syndrome (BMS); please take a look at this link in Just Want To Talk: http://mayocl.in/2d5g7f5
Feel free to read back through the messages, and tag other members for more information.

Mayo Clinic in Rochester, Minnesota also has a Burning Mouth Syndrome Clinic, http://mayocl.in/2dcrO3F, and although there is no known cure for BMS, Mayo Clinic conducts ongoing research to improve the quality of life for patients with this chronic condition. This other link will take you to current research developments:
http://mayocl.in/2dpAHFy
Have you looked at the Clinical Trials page of the NIH (National Institutes of Health)? Here’s a quick link: http://bit.ly/2k6iWyD

In the meantime, I hope fellow members @connielaine, @sheetrock0131, @ladenole, @mfelton, @iluvkatz, @uncbball, @susanlcw, @jamesmanning60 will join in to with some more insight for you.

@maggie45, what else have you tried to find some relief? Are there any foods you have to avoid?

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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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Hello Shelby, I don’t know if you are still on this site, but I would like to know if you are still having success with Zoloft? I have used A
LA, Vitamin B, and Edluar (Ambien) to sleep, along with Cymbalta. Neurontin upsets my digestive system so I cannot take it. I hope you are doing well.

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@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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I have had BMS since 2004. I went to a dentist who specializes in oral-facial pain. He used a lazer treatment on me and it clearly helped. I purchased a home kit over the internet that the dentist approved so I could use it at home. At first it was very effective, but I am finding it less so as time goes on. I definitely recommend it, especially for people who experience Atypical Burning Mouth Syndrome, characterized by burning, tingling, aching, throbbing, etc. My Pain Med Dr. does not recommend any type of invasive treatments such as Gamma Knife or others which work better for those with the typical symptoms. I hope this helps. Please contact me if you want more information. I don’t know of any studies for lazer treatment for BMS. I would appreciate hearing from others who use lazer treatments

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Sheetrock0131,
I hope you are still on this site; I have read all your postings and they brought tears to my eyes… I can’t believe how long you have lived with this horror. I am 71 and have just been enduring it for the last one and an half years and feel like I am losing my mind. I was especially interested to read about your experience with Boston doctors & hospitals-how disappointing; it was a place I thought for sure if I went to I would find someone who understood this condition. I have come up empty in the Buffalo area where I live-even tried Rochester which is more progressive and all I could find was a social worker certified in hypnosis (of course, my insurance doesn’t cover it) but I am wondering if that is anything you have tried. I am considering it even if I have to pay out of pocket.
Also, have you communicated with Lauren123? She got back to me about a dentist who used lazer treatment on her; apparently worked to some extent. I heard about it from a London Dr. who is using it in the UK with some success, but I can’t find any equivalents here. Is that something you’ve looked into? I would love to hear from you- your posts are so heart-felt- I feel like I already know you.! God Bless..

Maggie45

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@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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Lauren,
Since I am new to this, I don’t know if you already got my reply, but in case not- thank you so much for answering me.
It is the first time I have actually made contact with someone who is dealing with this condition (and I am so impressed by all of you who have certainly been coping longer than I have at just one year and an half- but long enough to feel like I am losing my mind, all hope, not to mention family & friends who just “don’t get it.”)
I was so happy to hear you found a dentist who o.k.ed the lazer treatment. I am on my 5th dentist who is trying but not beyond the SalivaMax approach which I am still waiting to try. If you could please send me the contact information on the lazer kit you got over the internet, I will run it by him.
I hope there are things that I can share with you that may help you as well as others. Do you use Xylimelts? they’re little pads that adhere to your gums and provide saliva relief for a few hours. I use them in the pm (most painful time for me) right up to betime and they do help.
Thank you again for taking the time to reply- I have felt so alone and please know how good it feels to a have a friend “out there.”

P.S. Also, anyone out there for whom this all came after an endoscopy gone wrong.. Dr. foolishly forced an instrument through my esophagus (which turned out to be “torturous”= twisted)- left me with horrific pain swallowing, dry/burning mouth as well as sore throat and ear aches- all chronic 24/7 with intermittent bouts of acute pain. Seen numerous GIs, ENTs, neurologists- all to no avail.

Maggie45

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@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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Maggie,

I’m glad we made contact as you are apparently in the same situation. The lazer kit I use is called TerraQuant. I found it on the internet, and the last time I checked it was still available. It is not inexpensive, but this device has been worth it. I do not know what the SalivaMax approach is nor am I familiar with the Xylimelts. Do they have to be prescribed or can they be purchased?

Have you read my other messages dating back to 2012? They will give you more information. I’m glad to share more information with you if they are not available.

I’m looking forward to hearing more from you, especially about the SalivaMax approach and the Xylimelts.

Thanks for the reply.

lauren123

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@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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Hi Lauren,

So happy to hear from you. Thanks for the info on the kit.

I initially purchased (no prescription necessary) the xylimelts from a pharmacy , Family OTC in Boca Raton, FL.; however, they never got back to me after putting in a 2nd order but I did then locate them on Amazon- an 80 count box cost $17.95 They’re worth it.
My dentist gave me a script for a saliva enhancer called Neutra Sal from a pharmacy in Pa. called Transition- they called me saying there is a manufacturer’s delay on it so they are sending me the SlaviaMax instead– still waiting. Suspect my insurance will not cover it but months ago, I tried something from a pharmacy, Linden Care in Woodbury, NY and they gave me a sample box to try free of charge- it was called Gel Clair- it’s a gel in a small packet that you mix w/2T of water. It gives your mouth a coating that lasts a bit but I found it very nasty tasting & it also bothered my stomach but you may react differently.
I’ve had better luck with something I found locally in a compounding pharmacy; it’s called Rincinol-it’s manufactured in Italy under license of Sinclair Pharmaceuticals, 4 oz. is about $9 but it seems to last me a while if I only take a swig when the burning is especially bad.

Just remember something else I tried- salagen aka pilocarpine-generic and then civemeline (sp?). Both helped generate saliva initially but after a mo. or so my taste turned chalky from them; also at the time I was taking buproprion (wellbutrin) and I learned after the fact that it is contraindicated to be taking those meds while on that particular anti-depressant. Doc who prescribed it & my pharmacy obviously were not paying attention…oh well…

Please let me know how any of these work for you if you try them. Also, if you don’t mind, maybe we could just “chat” now & then- it’s probably obvious that I am over the top with finding others with this condition- so much of my problem has been this terrible sense of isolation and even close family members & friends just don’t get the impact this has on your life. This is such a test for me- my nature is such that I unfortunately tend toward the dark side of things naturally and never mind about seeing the glass half full- some days I can’t even find the glass! I was going to ask if you- or anyone else with this misery has tried hypnosis. My insurance won’t pay for that either but I am considering it…

Before this turns into a book, I’ll say bye for now.
Thank you again for responding and so promptly!

Maggie

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@maggie45

Sheetrock0131,
I hope you are still on this site; I have read all your postings and they brought tears to my eyes… I can’t believe how long you have lived with this horror. I am 71 and have just been enduring it for the last one and an half years and feel like I am losing my mind. I was especially interested to read about your experience with Boston doctors & hospitals-how disappointing; it was a place I thought for sure if I went to I would find someone who understood this condition. I have come up empty in the Buffalo area where I live-even tried Rochester which is more progressive and all I could find was a social worker certified in hypnosis (of course, my insurance doesn’t cover it) but I am wondering if that is anything you have tried. I am considering it even if I have to pay out of pocket.
Also, have you communicated with Lauren123? She got back to me about a dentist who used lazer treatment on her; apparently worked to some extent. I heard about it from a London Dr. who is using it in the UK with some success, but I can’t find any equivalents here. Is that something you’ve looked into? I would love to hear from you- your posts are so heart-felt- I feel like I already know you.! God Bless..

Maggie45

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Hi Maggie,sorry it took so long to answer you.I have never done hipnosis,but I certainly would keep it on the table.What harm could it do.I feel for you,just expierencing it,makes me sad,because it has been a long haul for me.It has ducked all the life out of me.If you would like to reply back,or have any questions, please feel free to ask.God Bless you
.

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@maggie45

Sheetrock0131,
I hope you are still on this site; I have read all your postings and they brought tears to my eyes… I can’t believe how long you have lived with this horror. I am 71 and have just been enduring it for the last one and an half years and feel like I am losing my mind. I was especially interested to read about your experience with Boston doctors & hospitals-how disappointing; it was a place I thought for sure if I went to I would find someone who understood this condition. I have come up empty in the Buffalo area where I live-even tried Rochester which is more progressive and all I could find was a social worker certified in hypnosis (of course, my insurance doesn’t cover it) but I am wondering if that is anything you have tried. I am considering it even if I have to pay out of pocket.
Also, have you communicated with Lauren123? She got back to me about a dentist who used lazer treatment on her; apparently worked to some extent. I heard about it from a London Dr. who is using it in the UK with some success, but I can’t find any equivalents here. Is that something you’ve looked into? I would love to hear from you- your posts are so heart-felt- I feel like I already know you.! God Bless..

Maggie45

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Maggie,i did want to mention,i saw a maxofacial dental surgeon
He numbed my tounge to let me see what it would be like if he killed the nerve .It was not easy.I had to place my food in my mouth,and had no feeling.I could easily bite my tounge off.My face vould sag.He told me to weigh it out.After a while of numb tounge,that would wear thin also.
He was a Dr at the Mass General Hospital.
One of the best in the country..
I hope you have good luck somwhere.
I feel for you.Please keep me updated.I wish you the best.

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Believe me,all you have to do is google bms,you can get all the information you need.There are more than a million people suffering from this horrible condition. I say im suffering hell on earth.

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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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@susanlcw,
I am new to this site and just came upon your request for names… I’m having the same problem (live in the Buffalo, western NY area and am coming up dry- excuse the pun). I don’t care where these specialists may be, I am willing to go where they are. If you’re still checking in, I would appreciate your sharing any names you may have received.

Hope you’re doing better.

Maggie45

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