Burning Mouth Syndrome. I have it very severe.

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.

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

@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

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

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.

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.