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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

@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?

@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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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.

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

@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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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.

@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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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.

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.

@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.

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?

@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

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?

@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.

@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?

@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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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.

@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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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.

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

@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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