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mygrigio
@mygrigio

Posts: 1
Joined: Aug 05, 2011

burning mouth syndrome very severe

Posted by @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

REPLY

@celiafachin

I HAVE "BURNING MOUTH SYNDROME. I HAVE HAD IT FOR 6 YEARS WITHOUT ANY REAL RELIEF. I AM CURRENTLY TAKING "GABAPENTIN" TO CONTROL THE PAIN. I WOULD LIKE TO TALK TO SOMEONE WHO HAS THE SAME CONDITION. CELIA

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Hi, @pjperrine — I wanted to add my welcome to Mayo Clinic Connect. Wanted to let you know that I moved your post over to the same thread that @jamienolson mentioned, as you will find many members talking about BMS here and may find it helpful reading some of the past posts.

How is the Gabapentin working for you?

Hello all. I was wondering because I have not seen it on here if anyone can tell me when it first started? Was it after dental work, surgery, illness, or just pops up out of the blue? I have severe GERD but not BMS. I was trying to look for a common factor that all of you had when it first started. No I am not a doctor. I am going to have some major dental work done soon so between the GERD and dental work I am wondering if I should put off having the rest of my teeth pulled?

@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
My burning mouth syndrome started when I got my dentures it is so debilitating. My quality of life has changed horribly. I have lost over 50lbs since this terrible disorder. I could only eat soft foods and became a recluse, never wearing my dentures They only made this horrible monster worse. I was angry all the time I did some research and found that the medication Gabapention has been used to get some relief
But be warned Do you're research and speak with your Dr before using this medication. You can be trading one evil for another. This medication is used for a WIDE variety of disorders. It is addictive and has wicked withdrawal syndromes. But I use an organic toothpaste called Hello Is used for sentivity and pain. I'm on a high dose of gabapention and together with this toothpaste my burning mouth syndrome is very manageable.
Again please speak with your doctor or dentist before starting this medication
I hope you all find peace
I feel all your pain. Trials and tribulations

Hello
My burning mouth syndrome started when I got my dentures it is so debilitating. My quality of life has changed horribly. I have lost over 50lbs since this terrible disorder. I could only eat soft foods and became a recluse, never wearing my dentures They only made this horrible monster worse. I was angry all the time I did some research and found that the medication Gabapention has been used to get some relief
But be warned Do you're research and speak with your Dr before using this medication. You can be trading one evil for another. This medication is used for a WIDE variety of disorders. It is addictive and has wicked withdrawal syndromes. But I use an organic toothpaste called Hello Is used for sentivity and pain. I'm on a high dose of gabapention and together with this toothpaste my burning mouth syndrome is very manageable.
Again please speak with your doctor or dentist before starting this medication
I hope you all find peace
I feel all your pain. Trials and tribulations

@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

Hello
My burning mouth syndrome started when I got my dentures it is so debilitating. My quality of life has changed horribly. I have lost over 50lbs since this terrible disorder. I could only eat soft foods and became a recluse, never wearing my dentures They only made this horrible monster worse. I was angry all the time I did some research and found that the medication Gabapention has been used to get some relief
But be warned Do you're research and speak with your Dr before using this medication. You can be trading one evil for another. This medication is used for a WIDE variety of disorders. It is addictive and has wicked withdrawal syndromes. But I use an organic toothpaste called Hello Is used for sentivity and pain. I'm on a high dose of gabapention and together with this toothpaste my burning mouth syndrome is very manageable.
Again please speak with your doctor or dentist before starting this medication
I hope you all find peace
I feel all your pain. Trials and tribulations

@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

Hello
My burning mouth syndrome started when I got my dentures it is so debilitating. My quality of life has changed horribly. I have lost over 50lbs since this terrible disorder. I could only eat soft foods and became a recluse, never wearing my dentures They only made this horrible monster worse. I was angry all the time I did some research and found that the medication Gabapention has been used to get some relief
But be warned Do you're research and speak with your Dr before using this medication. You can be trading one evil for another. This medication is used for a WIDE variety of disorders. It is addictive and has wicked withdrawal syndromes. But I use an organic toothpaste called Hello Is used for sentivity and pain. I'm on a high dose of gabapention and together with this toothpaste my burning mouth syndrome is very manageable.
Again please speak with your doctor or dentist before starting this medication
I hope you all find peace
I feel all your pain. Trials and tribulations

@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

Jump to this post

Hello
My burning mouth syndrome started when I got my dentures it is so debilitating. My quality of life has changed horribly. I have lost over 50lbs since this terrible disorder. I could only eat soft foods and became a recluse, never wearing my dentures They only made this horrible monster worse. I was angry all the time I did some research and found that the medication Gabapention has been used to get some relief
But be warned Do you're research and speak with your Dr before using this medication. You can be trading one evil for another. This medication is used for a WIDE variety of disorders. It is addictive and has wicked withdrawal syndromes. But I use an organic toothpaste called Hello Is used for sentivity and pain. I'm on a high dose of gabapention and together with this toothpaste my burning mouth syndrome is very manageable.
Again please speak with your doctor or dentist before starting this medication
I hope you all find peace
I feel all your pain. Trials and tribulations

@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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Cholejulie…I wanted to get permanent teeth placed until I heard the price from my dentist. $20,000 dollars. WHAT? No way…So, I decided to go for dentures. I was examined and almost immediately after exam my left upper lip, outside and inside began to swell and hurt. My first impression was to blame the dentist. I thought wow did he use dirty tools on me? But it has been months and I still have the swelling and every once in awhile I will accidently bite that area and omg does it hurt. I cannot walk around with NO teeth. My teeth were falling out. I heard they are calcium and probably react to the RA in a negative way. I DONT KNOW. What next? So by this time next week, I will be going thru the process of having him pull about 4 teeth that are ready to fall out. Also do TWO root canals. I wish I could be put out for this But, I have a heart condition and cannot deal with certain types of Novacan or being put out. My heart starts racing and they would have to quit I will let you all know how it goes. My teeth were perfect up until about 2 yrs ago. I was at that time living in Oregon. Something happened to our water because of low tide and allowing salt into the water. Our well was up the river far enough, or so we thought. Not only did my teeth become affected, but my precious little Yorkie (Missy) got sick and passed away. In order to have clean water all summer, I either bought large bottles of water at the dollar store, or went to the water department and filled up my bottles with the water from the water truck. The town right next to us was not part of our town well, so they were delivering water to us. I am sure it is still going I live in Texas now.

@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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@chloejulie @oregongirl Thank you for answering my question. I have lost all the enamel on my teeth for a while now. Not sure how it happened. Anyway I got my upper teeth pulled when I was in my early twenties because I always had problems with my teeth. No side affects from that. My lower is the problem I am worried about. Now that I have all this other stuff going on at 57yrs old. Besides GERD, which is very bad and I found I cannot take pain meds with anything that has to do with codiene, I am scared to death about the pain I will have since I cannot take nothing like that. The last time I had a tooth pulled on the bottom I hurt for two weeks after they pulled it from pain. I prayed God would take it away. I have 8 left and they need to go. This is so scary and I am so sorry all of you are going through this. I pray God takes your pain away.

You all are wonderful on here trying to help others with this terrible thing. Your suggestions I am sure will help at least one person if not more so know you are helping with everything you write and experience. God Bless all of us.

@rgpadilla

Has anyone, even if it is one, that had gone to either the Mayo Clinic in Phoenix or Rochester for this BMS problem, burning tongue, been cured?
Any one?

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Have you researched the medication Gabapention. Works for me I've had BMS for five years
Very dibilitating Trading one lesser evil for another. I'm on very high dosages. But my mouth feels wonderful I have dentures
That's what started me down this horrible nightmare I lost over fifty pounds I was wearing a size 18 when I first got my dentures. Now I'm in a size 6. I'm 5 ft 8in weigh 140lb Again do your research on this medication it's certainly not for everyone Talk to your Doctor or dentist about it. I also use a lot of honey. You can put it in peppermint tea. Sometimes I just pour it on my tongue and lips. It nutrilizes the burning for a few minutes
Hope this helps
I truly know your pain

@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

Have you researched the medication Gabapention. Works for me I've had BMS for five years
Very dibilitating Trading one lesser evil for another. I'm on very high dosages. But my mouth feels wonderful I have dentures
That's what started me down this horrible nightmare I lost over fifty pounds I was wearing a size 18 when I first got my dentures. Now I'm in a size 6. I'm 5 ft 8in weigh 140lb Again do your research on this medication it's certainly not for everyone Talk to your Doctor or dentist about it. I also use a lot of honey. You can put it in peppermint tea. Sometimes I just pour it on my tongue and lips. It nutrilizes the burning for a few minutes
Hope this helps

@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

Have you researched the medication Gabapention. Works for me I've had BMS for five years
Very dibilitating Trading one lesser evil for another. I'm on very high dosages. But my mouth feels wonderful I have dentures
That's what started me down this horrible nightmare I lost over fifty pounds I was wearing a size 18 when I first got my dentures. Now I'm in a size 6. I'm 5 ft 8in weigh 140lb Again do your research on this medication it's certainly not for everyone Talk to your Doctor or dentist about it. I also use a lot of honey. You can put it in peppermint tea. Sometimes I just pour it on my tongue and lips. It nutrilizes the burning for a few minutes
Hope this helps

@dawn6604

I’m 45 and have had this for almost 4 months. My mouth hurts so bad I can hardly smile. I feel like it doesn’t stop hurting at all!! I wake up hurting worse everyday. My doctor is baffled. I am getting so depressed. I am newly married and can’t even kiss my husband. Any advice would be greatly appreciated.

Jump to this post

Have you researched the medication Gabapention. Works for me I've had BMS for five years
Very dibilitating Trading one lesser evil for another. I'm on very high dosages. But my mouth feels wonderful I have dentures
That's what started me down this horrible nightmare I lost over fifty pounds I was wearing a size 18 when I first got my dentures. Now I'm in a size 6. I'm 5 ft 8in weigh 140lb Again do your research on this medication it's certainly not for everyone Talk to your Doctor or dentist about it. I also use a lot of honey. You can put it in peppermint tea. Sometimes I just pour it on my tongue and lips. It nutrilizes the burning for a few minutes
Hope this helps

@nanettehathaway

I have had neuropathic burning mouth syndrome since Dec. 2010. On gabapentin and Lyrica. Nothing seems to help. Does anyone know a doctors name at Mayo clinic who treats this? Please help. Nanette

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I had taken gabbapentine many years ago.
I've had this condition for many years.I have taken amatriptoline,currently on cymbalta,clonazapan,and a mild dose of oxycodone.
I have been receiving botox shots,which I read had been helping with this horrible condition. It really doesn't help.
My next move is to check out laser.I have been to a hospital in Boston.A oral maxofacial surgeon has been giving me the shots.He recommend laser.I'm going to find a Boston hospital who gives laser.
If you have some time,please Google ,botox for b.m.s.
Also Google, laser for same.
This is a horrible condition.
I've been to most Boston hospitals, and so many meds.it over 18yrs.
I'm mentally drained.
As a psychologist, referred to it as ,the devil in the mouth.
If you need any additional info.please feel free to ask.
I wish you luck with the gabbapentine, but sadly nothing has helped me..
God bless..

@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 read my comments.I've been suffering for 18yrs plus
I'm currently receiving botox shots.Going to try laser.please Google ,botox for b.m.s.
and Google laser treatment.
Boston would be the best place to receive the treatment..
Good luck.
Dr's in Boston ,definitely know all about b.m.s.feel free to contact me anytime..

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