1. < Skin Health

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

Interested in more discussions like this? Go to the Skin Health Support Group.

sheetrock0131 | @sheetrock0131 | 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.

Jump to this post

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,,,

REPLY
sheetrock0131 | @sheetrock0131 | 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.

Jump to this post

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.

REPLY
Shellb123 | @shellb123 | Apr 13, 2012
In reply to @anon83338660 "I too have burning mouth for about 1 year. Was finally sent to a dermatologist. She..." + (show)
@anon83338660

I too have burning mouth for about 1 year. Was finally sent to a dermatologist. She prescribed klonipin as needed and it worked the first pill i took. She is doing lots of blood work to check for vitamin levels. May also do allergy test to see if im allergic to fhe compounds in my gold crows and metal fillings. This is a Mayo clinic recommended treatment.

Jump to this post

Oh my gosh please BE CAREFUL taking KLONOPIN!!!! I was on two pills in the morning & two pills in the evening for 2 years for BMS & then a Dr. wanted me to get off it because it's not a long term medication & then my whole world got turned upside down! I went to the hospital to get off of it & then for the next year I was mentally & physically gone 🙁 I had been addicted in a way that I wasn't aware of until I tried to stop taking it!!!! That medication is horrible!! It wasn't until I got on Zoloft WITH Neurontin that I started to feel human again & some people have worse stories with Klonopin! STAY AWAY from that stuff!!

REPLY
Shellb123 | @shellb123 | Apr 13, 2012
In reply to @anon83338660 "I too have burning mouth for about 1 year. Was finally sent to a dermatologist. She..." + (show)
@anon83338660

I too have burning mouth for about 1 year. Was finally sent to a dermatologist. She prescribed klonipin as needed and it worked the first pill i took. She is doing lots of blood work to check for vitamin levels. May also do allergy test to see if im allergic to fhe compounds in my gold crows and metal fillings. This is a Mayo clinic recommended treatment.

Jump to this post

Please read my above comment about KLONOPIN!!!!!

REPLY
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.

Jump to this post

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!!!!!

REPLY
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

Jump to this post

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!!!!!

REPLY
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.

Jump to this post

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.

REPLY
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!!! 🙂

REPLY
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...

Jump to this post

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

REPLY
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.

Jump to this post

Yes we all need to support each other!!

REPLY
View MoreView Less
Please sign in or register to post a reply.