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

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

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?

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

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

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

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

I do not know about lazer treatment,but i have hears of a surgery that a sponge is put in the area where the nerve is,that causes this burn.The nerve rests on the sponge,and you no longer.feel the burn.
No Dr.That i have come across would be willing,and believe me,i have seen many..
Very dangerous, apparently you can suffer a stroke,and many other complications can happen
My heart goes out to all those who suffer..

Hello Maggie, I am glad to hear from you and that the laser seemed to work. I found that it dulled my pain. As time went on it seemed to dull the pain especially at night. The most effective meds for me are klonipin, recommended by Mayo Clinic on line. Before I started taking that, my taste buds were so sensitive I could barely eat brcause the taste was so strong. I now take a klonopin (clonozapam), cymbalta, and ambien since the pain is so bad at night. In addition, my pain management dr. gives. me a shot of Botox every three months. This is approved by the FDA for pain issues. The biggest problem is that he has to hit the right areas around my neck and jaw or I have minimal relief. If you have not been to a pain management Dr. I would see what she or he has to say. It all depends on what nerve has been damaged. Or sometimes it appears out of nowhere. I hope this reaches you as my phone is not allowing me to see my post. Best wishes. Stay strong as there is help out there.

As a 20 plus yr sufferer,I too did homework on gamma knife or sober knife.
All Dr's said the same thing.It could make you worse.They use this procedure on people who have trigeminal neuralgia. They zap the trigeminal nerve and in some cases,it helps.
There is also a surgery that is dangerous.
They go into the part of the brain,where this nerve is,and place a sponge under the nerve,so you no longer feel the burn.
I know a woman who has m.s.they did the surgery on her,it lasted a few years,but came back.
I hope this helped you.
God bless..
Feel free to contact me..