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

@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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@Destinana: Your anguish is understandable. It seems every med, every remedy, every intervention disappoints. I was recently told by a practioner that some cases of BMS might be caused by dental galvanism, and it appeared my situation was one of them. A quick search of the term will result in a dead end — fake science. But I looked into the treatment anyway which was to have all your fillings replaced with nonconductive materials. Very costly if you have a metal-filled mouth, but desperation may ultimately drive BMS sufferers to it. I haven’t gone that route yet.
For the reflux, I read an article that recommended freezing a whole lemon then grating a tablespoon or two of it ( rind included) into boiling water and drinking like tea. Apparently reflux can be caused by not having enough of the right kind of acid in your system. Maybe this could help you. I have tried it, tastes good and doesn’t make anything worse….

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@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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More than a reply is a question to you since you mentioned Jacksonville in Florida. Do they treat BMS patient like in Rochester, Minnesota or Scottsdale Arizona. My wife has been suffering with the Burning Tongue only, 24/7

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@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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I’m not sure what you mean? Be more specific.

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@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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The Mayo Clinic in Scottsdale, Arizona treats patients with BMS, they don't give numbers on how many have been cure. They do not accept government insurance. The Mayo Clinic in Rochester Minnesota treats patients with BMS, they do accept government insurance.
You mentioned that you were diagnosed with BMS at the Mayo Clinic in Jacksonville, Florida, do they treat patients with BMS.

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We’ve had no problem with our BCBS paying in Florida.

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Do they treat BMS in Florida. Is that BCBS Medicare Insurance?
Thank you…

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@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!

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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.

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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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@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?

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@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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@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?

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