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

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uncbball | @uncbball | Apr 16, 2018

Mine is caused by gastric juices coming up all the way into my mouth and nose. It wore away at larynx and ruined my voice. Protonix and a low inflamatory diet help.

REPLY
1 reply
lauren123 | @lauren123 | Apr 17, 2018
In reply to @uncbball "Mine is caused by gastric juices coming up all the way into my mouth and nose...." + (show)
@uncbball

Mine is caused by gastric juices coming up all the way into my mouth and nose. It wore away at larynx and ruined my voice. Protonix and a low inflamatory diet help.

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What kind of low inflammatory diet? So sorry about your voice.

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Lisa Lucier | @lisalucier | Apr 17, 2018

Hi, @uncuncbball -- interesting about the cause of your BMS and some of the things that helped. I, too, am sorry to hear about your voice.

@lauren123 and I are wondering if you might tell more about the low inflammatory diet you found helpful?

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Lisa Lucier | @lisalucier | Apr 19, 2018
In reply to @duvie "Hello Everyone, About a week or little more Lilbit's mouth has been burning and sore. She..." + (show)
@duvie

Hello Everyone, About a week or little more Lilbit's mouth has been burning and sore. She uses upper dentures but is trying to eat soft foods to give her mouth a chance to heal hopefully. From what I'm reading on here, many have had a burning mouth for over 18 yrs.

Now her mouth seems to be constantly hurting and many times like it's on fire. Since about 1:30 AM she could not lay down long without screaming in pain. Her head has also starting to feel like it's on fire to where she grabs her forehead and yells in pain. It's 8:48 PM CDT and she is in route to the hospital by ambulance. I'll be spending the night at the hospital as I usually do when she is in the "Big House."
Any insight to what may be causing this would be greatly appreciated. Is there anything in particular I should ask the Drs to check on?
This gives me a another chance to educate the medical staff of support groups such as Inspire and Mayo Clinic partnership in regards to "Experts by Experience," Inspire's ability to post in multiple groups, and the great hospital site Mayo Clinic Connect.
Taking advantage of the opportunity with being around other patients and nurses to share knowledge as well as support groups encourages me more.

Errol

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Hi, @destinnana -- glad you got a definitive diagnosis two years ago at Mayo. Also, your observation about stress and its connection with flares is very interesting.

You mentioned you tried to avoid the gabapentin and go a more natural route of treatment. I'm thinking that @sheetrock0131 @lauren123 and @phyllisrn may have some thoughts on that and whether they may have found any that help.

In your search thus far, @destinanana, have you found any remedies like this that are effective for your BMS?

REPLY
destinnana | @destinnana | Apr 19, 2018
In reply to @duvie "Hello Everyone, About a week or little more Lilbit's mouth has been burning and sore. She..." + (show)
@duvie

Hello Everyone, About a week or little more Lilbit's mouth has been burning and sore. She uses upper dentures but is trying to eat soft foods to give her mouth a chance to heal hopefully. From what I'm reading on here, many have had a burning mouth for over 18 yrs.

Now her mouth seems to be constantly hurting and many times like it's on fire. Since about 1:30 AM she could not lay down long without screaming in pain. Her head has also starting to feel like it's on fire to where she grabs her forehead and yells in pain. It's 8:48 PM CDT and she is in route to the hospital by ambulance. I'll be spending the night at the hospital as I usually do when she is in the "Big House."
Any insight to what may be causing this would be greatly appreciated. Is there anything in particular I should ask the Drs to check on?
This gives me a another chance to educate the medical staff of support groups such as Inspire and Mayo Clinic partnership in regards to "Experts by Experience," Inspire's ability to post in multiple groups, and the great hospital site Mayo Clinic Connect.
Taking advantage of the opportunity with being around other patients and nurses to share knowledge as well as support groups encourages me more.

Errol

Jump to this post

There are no tried and true remedies I’ve found other than using CBD oil at night which seems to help me sleep better. It calms me and allows me to rest sounder.

REPLY
Lisa Lucier | @lisalucier | Apr 24, 2018
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.

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Hi, @twentyfour7 -- thank you for your suggestion of lidocaine gel for BMS pain. Wondering how your BMS is doing lately?

REPLY
twentyfour7 | @twentyfour7 | Apr 24, 2018
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

Thank you for thinking about me! I am slogging through the days with the goal of keeping the discomfort tuned out. Like a computer program, it is always running in the background.. ( I call it BMS 3.0)... Anyway, I tried the Claritin as someone suggested, and have not noticed much of a difference yet. The Lidocaine gel is still the only thing that quells the fire, albeit temporarily. I have been wondering if anyone else has dreams about being in pain? Most sites describing BMS say the only relief sufferers experience comes during sleep. That is not the case for me. I often dream I am pulling glass shards of broken Christmas ornaments from my mouth, and upon waking realize the burning has intensified during the night . Despite all this nonsense, I still managed to live a blessed life. This website has become a source of comfort to me, and I am thankful we can share our experiences.

REPLY
phyllisrn | @phyllisrn | Apr 24, 2018
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

When my bms is really acting up I suck on sugar free peppermint candy. It masks the burning. Also I brush my teeth, tongue and roof of my mouth 2-3 times or more during the day. It cures nothing but it helps me to manage it better. I hope you find something to help you.

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CELIA FACHIN | @celiafachin | May 1, 2018

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

REPLY
2 replies
Lisa Lucier | @lisalucier | May 1, 2018
In reply to @celiafachin "I HAVE "BURNING MOUTH SYNDROME. I HAVE HAD IT FOR 6 YEARS WITHOUT ANY REAL RELIEF...." + (show)
@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, @celiafachin -- thanks for your post and sharing some of your story with BMS. I'm sorry your BMS has been so hard and you've hardly had any real relief.

Additionally, just wanted to mention that we discourage the use of ALL CAPS for writing messages, since it is considered shouting in online communication. I'd just recommend turning the all caps off. See the community guidelines here: https://connect.mayoclinic.org/community-guidelines/

I also removed your contact info, just because we want to protect your privacy and don't want you to get any spam.

Wondering how the gabapentin is working so far for your pain?

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