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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

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.

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.

Liked by Shellb123

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

Liked by Shellb123

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

Liked by Shellb123

@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.

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Hey how u doin dawn, congradulations on getting married! Hey I was just wondering if u have heard of any treatments or pain releivers for ur condition.. my mother has tha same condition as u do I’m tryng to find someone that may be able to help with any suggestions if u have heard, or are trying something to help with tha pain, please msg me back when u get a chance, thanks I really appreciate it….

Liked by Anonymous

@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.

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I am on gabapentin 300mg 3 times a day. I usually have about 5 good days then a couple of not so good days. The bad days aren’t as bad as they used to be. My lips aren’t as swollen or as purple as they were in the beginning. I sure hope your Mother starts feeling better. Good Luck… LaDawn

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.

Liked by Shellb123

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.

I have had BMS for 8 years after a tonsillectomy and have gone in circles with no relief and most doctors are clueless! 🙁

@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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It’s awful I know 🙁

@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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Its awful I’ve been suffering for 8 years 🙁

@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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I forgot to tell you I have already tried a holistic approach. I was told to soak in hot tub with 1 cup bleach.Didn’t help/ I tried bio identical hormones,nope, its not gerd I stopped eating for 4 months just liquids. Please believe me you are wasting your time. I even talked with someone on the internet that said she had all her teeth pulled, and it didn’t help. I believed it is caused by damage to one of the cranial nerves that is responsible for taste.All of you will be in my prayers

Liked by lauren123

@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.

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Hello, I have had burning mouth for over 10 years. I also take klonipin and it helps quite a bit. How much Klonipin are your taking? I developed BMS after an aggressive dental treatment. I think the allergy test sounds interesting.

@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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Gabapentn and Lyrica did not help. Klonipin is the only drug that gives me relief. Find a dentist who specialized in facial pain and has appropriate training. I was often misdiagnosed as having fibromyalgia.

@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 lexie and phyllism, I think that there may be different causes and treatments for BMS. After ten years of trying different methods, I find the greatest relief comes from Klonipin and a laser. I don’t think that hormonal testing will help (I had a hysterectomy and there was no change.) Changes in the weather also make a difference as my BMS also involves some arthritis. I have read that women have this condition more often than men.

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