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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lauren123 | @lauren123 | Apr 8, 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

Hello phyllisrn, this is very interesting. I also have trigeminal neuralgia and TMJ all on my right side. If you post the link, I will follow it. My pain is mostly in the lower gum, in a nerve damaged during a routine dental cleaning in 2004. I would really like to hear more of your experience. Thanks for sharing. Lauren

REPLY
2011panc | @2011panc | Apr 9, 2018
In reply to @duvie "Hello @colleenyoung, Lilbit was diagnosed with heart failure and renal failure. I'm not sure of the..." + (show)
@duvie

Hello @colleenyoung, Lilbit was diagnosed with heart failure and renal failure. I'm not sure of the severity. They say she is a very, very sick lady. She has been placed on a vent and heavily sedated due to pulling her IV out along with monitoring wires. At one point shortly after arriving at the ER and her daughter arrived she pulled her hand away from her saying, "Who are you!! After informing her mom who she was she calmed down and was aware of what was going on.

This morning they moved her to ICU and the sedation has been reduced. It was suggested that I go home to get some rest while she was sedated. Took care of Duvie and about to head to the hospital now. Staff is concerned that she may not come off the vent this time.

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@duvie You and Lilbit are in my prayers for peace, understanding and healing according to God's Will. I faced a similar situation with my youngest child a few Christmases ago. Thankfully that child is now better both physically and emotionally than before. These are hard days to go through for you.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Apr 9, 2018
In reply to @duvie "Hello @colleenyoung, Lilbit was diagnosed with heart failure and renal failure. I'm not sure of the..." + (show)
@duvie

Hello @colleenyoung, Lilbit was diagnosed with heart failure and renal failure. I'm not sure of the severity. They say she is a very, very sick lady. She has been placed on a vent and heavily sedated due to pulling her IV out along with monitoring wires. At one point shortly after arriving at the ER and her daughter arrived she pulled her hand away from her saying, "Who are you!! After informing her mom who she was she calmed down and was aware of what was going on.

This morning they moved her to ICU and the sedation has been reduced. It was suggested that I go home to get some rest while she was sedated. Took care of Duvie and about to head to the hospital now. Staff is concerned that she may not come off the vent this time.

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@duvie -- so sorry to hear this. I will be thinking of you both.

REPLY
histamine | @histamine | Apr 14, 2018
In reply to @karvar16 "Anyone here suffer from Burning Mouth Syndrome? Been to dermatologist, ENT and found no relief and..." + (show)
@karvar16

Anyone here suffer from Burning Mouth Syndrome? Been to dermatologist, ENT and found no relief and looking for a doctor who specializes in this. Since it would probably involve multiple visits I am looking for someone in the Twin Cities area.

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I've had bms for a year. Finally found some relief with claritin. Reading said it probably histamine intolerance. Women in menopause can develop it. Allergic to foods and many things. My dr sending me to allergist. Dr seems to think also i have histamine intolerance. Many foods have more than others. Just hope I get a histamine intolerance test. Hope to be better soon.

REPLY
histamine | @histamine | Apr 14, 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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My dr think it is histamine intolerance. Menopausal women sometimes ability to break down histamine it is on food mainly.. I hope to have a histamine intolerance test. My mouth been burning for a year and nose. Took claritin and felt like I could tolerate it. Also quercetin which is a natural antihistamine. But it made me nervous. I'm going to an allergist but may have to go out of state to get help for inability to break down histamine

REPLY
Jamie Olson | @jamienolson | Apr 14, 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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Welcome to Connect, @histamine.

I'm interested in hearing what the allergist says. Keep us updated, please. How long were you experiencing symptoms before you figured out that Claritin worked?

REPLY
phyllisrn | @phyllisrn | Apr 16, 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

Along with bms I have had a period of to much histamine. For a month I was covered in a ugly red itchy rash which sent me to the dermatologist. The one thing I have learned which was mentioned by my primary care dr during this time, is one of the best drugs to take daily for histamine intolerance is over the counter Cimetedine (tagamet) 2 200 mg a day. Just a suggestion for you. The low dose will not hurt you. I buy it otc at Walmart, its pennies a day. Personally I do not believe that histamine and bms are commonalities.

REPLY
phyllisrn | @phyllisrn | Apr 16, 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

https://insights.ovid.com/pubmed?pmid=15911160

REPLY
phyllisrn | @phyllisrn | Apr 16, 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's more on this site OVID about bms, but you have to be a medical specialist to get on the site. I'm hoping this link won't be broken because I have access to it but I don't know exactly what will happen if a nonmember tries to click on it. If you have a broken link then I will copy and paste for you. I do not post very often at all but I read every post from all who post here on Mayo. I've had bms since the early 90's and have studied so much and read about it compulsively. So far the nearest explanation for bms is this trigeminal nerve neuropathy. I wish dr's and drug companies knew about this study, it's better than most of the dr's opinion a pt. with bms will receive. I do not get excited about "cures" for bms because frankly I believe bms sufferers on this thread know more about it than dr's or dentist. We live it 24 hours a day minus sleeping time. Maybe one day someone famous will have it or someone with "money" will have it and it will nudge a researcher to research it thoroughly. I know I sound cynical but the answers for us (currently) do not rest with dr's. I would love for me to be proved wrong. I just do not believe pain meds or benzos should be used for bms. We should all try an antidepressive because bms can be and definitely is a source for depression! (AND DO WE HAVE A REASON TO BE DEPRESSED.) I will say If helps--try it, just keep your expectations low and your hope high. There will be a treatment for us someday.

REPLY
destinnana | @destinnana | Apr 16, 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

I was diagnosed with BMS and central sensitization at Mayo almost 2 years ago. I chose to not take drugs and had rather try natural alternatives. Gabapentin was prescribed in the beginning but after reading all the info on it I chose to not use it. I don’t wanta be one that relies on strong drugs if I can possibly help. Does anyone have anything they can say that’s helped? Natural alternatives? I find that my mouth and throat seem to “fire up worse” when I get stressed. It never stops but it is worse during those times.

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