burning mouth syndrome 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

@twentyfour7

Hi again, Lauren123, I am so glad to have found this site! You’re right in saying it’s a good place to share information for people with this miserable condition. No one else even faintly understands, not even the doctors I’ve consulted for evaluation and treatment. Most of them say they’ve never heard of it! Eventually we get forced down alternate paths in the hopes of finding something that works. My latest failed attempt was CBD oil— an outrageously expensive and useless product.

In answer to your question, yes, my gums burn all day, every day, but mostly on one side. My tongue is the worst, as it involves the entire thing. Occasionally my nostrils and lips get in on the action as well. I do not have sinus problems , or TMJ or any neuralgia that I know of. I was sorry to read of your multiple maladies. For me, the one odd thing that might be a clue is that I have sneezing jags multiple times per week. Once I start I sneeze anywhere from 20 to 45 times in a row. (Allergy testing was negative.)

So for now, I, as I’m sure you do, forge ahead, thankful to get through each night and hoping for distractions during the day. Try the lidocaine when it is at its most unbearable. I pray God will both comfort and heal you.

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Hello twentyfour7. Sorry I missed this response. I suffered a dental accident in 2004 when an aggressive dental incident occurred. I was getting a routine cleaning when her drill ended up seriously damaging my gum. I immediately changed dentists and was sent to a dental specialist who is able to diagnose oral facial mouth pain that is not generated from the tooth. The damage caused pain along the trigeminal nerve so I was told originally that I have BMS. However, I have also been diagnosed with trigeminal neuralgia which is very similar in pain symptoms. I am happy to hear that you do not have sinus issues, but the sneezing jags are unknown to me. Have you tried Clonazepam? How about Cymbalta? The Clonazepam is especially helpful, since it is sub-lingual. I also use biotene Dry mouth oral rinse. Be sure to try Mild Mint. I find it much more soothing that Gentle Mint. I have to get Mild Mint from Amazon.. I'm very interested to hear if this is helpful. It can be pricey, but there are times when it's my best solution. I even carry a small bottle with me when I travel. Of course, my dentist (a specialist) has never heard of this. I hope some of this helps. I am seeing my PM doctor this week and will see what he says about the lidocaine gel. Take care and thanks!

I am sorry but I’m not sure. I’m not on Medicare yet but getting very close. Our insurance pays well thus far. Mayo diagnosed my BMS but referred me elsewhere for further treatment. I choose to go a more natural route for my pain and not take meds unless I can’t bear it at times. I find that stress clearly makes mine worse.

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

@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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Errol, I'm so sorry to hear about Lilbit and the necessary trip to the hospital. You ask good questions of the community. I hope that @lauren123 @sheetrock0131 @phyllisrnlauren123 and other members with burning mouth syndrome can help you prepare to talk about her symptoms with the doctors and what you should ask them to check on, etc.

Is there anything new or changed recently with Lilbit that may have led to her having a sore, burning mouth?

@colleenyoung I thought it was due to loose fitting upper denture. What is causing it to be worse along with the head burning, I don't know. They did a cat scan and don't know the results yet. She is in trauma now while we are sitting in the ER waiting room with some of her family. There checking on any Living Will that may be on file. Thanks so very much for responding so quickly. Means a lot to me.

Thanks
Errol

@duvie

@colleenyoung I thought it was due to loose fitting upper denture. What is causing it to be worse along with the head burning, I don't know. They did a cat scan and don't know the results yet. She is in trauma now while we are sitting in the ER waiting room with some of her family. There checking on any Living Will that may be on file. Thanks so very much for responding so quickly. Means a lot to me.

Thanks
Errol

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How are you and Lilbet doing today, Errol?

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.

@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’m so sorry for all your misery. I’ve had panic times from the burning and a few mellowed out times with it as well. Since the early 90’s I have had to deal with BMS. I’ve read research on pubmed, which I can link a little later. This researcher has biopsed BMS suffers’ front 2/3 of their tongue
And has found changes in the BMS epithelial cells among other findings. The longer you have it the more the changes damage you have. She has published a paper after many studies and has come up with the findings of it being a neuropathy of the small nerves near/on the trigeminal nerves. I have trigeminal neuralgia and Tmj and BMS all on the same side, my left. So the one thing in common is the trigeminal nerves. The researcher said this knowledge should be combined with pharmaceutical research to give BMS pt some relief. So according to this published researcher our diagnosis is trigeminal neuropathy or something akin to that.

@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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Strength and courage to you, @duvie.

@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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My thoughts are upon your family now. I am so sorry.

@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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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

@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.

@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.

@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.

@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

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