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

@jshdma

@judybl1 That's the problem. Research seems to indicate that there are numerous causes of BMS. Having seen top oral pathologists in NYC and Boston, I learned that they have little to offer: certainly no cure and very little effective treatment. One thing I learned was that medical opinion is that this is neurological–that is, the nerves on tongue and other places are severely damaged. They can regenerate, but it takes an extremely long time. Sometimes never.

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Hello. That was a very good point on the nerves maybe never regenerating. If you have thrown up violently as I have back in 2016, nerve damage can occur from the stomach acid and pepsin enzyme. I'm sure not many people have thought that throwing up can damaged nerve tissue, but it certainly can if it happens often, or is very violent.Stu

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@judybl1

Response meadowhouse.
I printed the information from Mayo Clinic and took it with me to my appts. Sometimes if they can't see a problem, they can't treat a problem. Try to get your doctor to try Xanax 0.5 mg. It has helped some but not all the time. Right now I'm on fire! I'm 71 and have had this for 9 yrs.
Good luck to you and God Bless. I hope you will find relief.

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I’m a female 68 years old and I’ve had burning mouth syndrome for several years. It’s all on the side of my tongue. I too went to my PCP then ENT then dentist and finally the neurologist. The neurologist prescribed lamotrigine. 200 mg three times a day. It has been a great help. Then the last time I went to my dentist again. He suggested xylimelt tablets. When it’s especially bad
a tablet and put one on each side of my tongue and let it dissolve. That’s a great help too.

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lynschupbach —- did lamotrigine have side effects? In my experience, It's never been mentioned after researching BMS for years.

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@rgpadilla

Question to the Moderators or anyone that knows, I looked for this group but can not find any entries…. will you please help me? Thank you.

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Hello @rgpadilla

We do have some discussion groups on this topic. I've copied the links to two of these below. Just click on the links and you can read what other members have posted about BMS.
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-very-severe/
https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
If you are comfortable sharing more, how long have you had this problem? Have you had any treatments that have helped?

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Question to the Moderators or anyone that knows, I looked for this group but can not find any entries…. will you please help me? Thank you.

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@rgpadilla

Question to the Moderators or anyone that knows, I looked for this group but can not find any entries…. will you please help me? Thank you.

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Hi @rgpadilla, it can sometimes be a challenge to find discussions after you've been away for a bit. Glad you called out for assistance. I've moved your post to the discussion you last participated in called "Burning Mouth Syndrome. Mine is very severe." This is where you've connected with members like @lauren123 @sheetrock0131 @bonitav @judybl1 @twentyfour7 @ristu and others.

You can find discussions about burning mouth syndrome in the Skin Health group https://connect.mayoclinic.org/group/skin-conditions/
As @hopeful33250 mentioned, there is also another discussion here:
– Burning Mouth Syndrome (BMS): Anyone found any relief? https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/

One of the easiest ways to find discussions that you've posted to in the past is to go to your profile and scroll to your post activity.

@rgpadilla, how are you and your wife doing?

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I am Ok. my wife burning tongue is getting worse, chewing Orbit Gum helps sometimes, not always and the nights are the worst. Looking forward to seeing the BMS group in Rochester Minn. hopefully this COVID-19 will abate a little to give us the opportunity to travel. God help us!!!

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@rgpadilla

I am Ok. my wife burning tongue is getting worse, chewing Orbit Gum helps sometimes, not always and the nights are the worst. Looking forward to seeing the BMS group in Rochester Minn. hopefully this COVID-19 will abate a little to give us the opportunity to travel. God help us!!!

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Hello, again @rgpadilla,

I see that your wife has had this problem for a while now. Has she been seen at Mayo before or will this be your first visit?

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It will be the first visit

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Has anyone been told they have burning Mouth Syndrome ?

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@lexonpark

Has anyone been told they have burning Mouth Syndrome ?

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@lexonpark, I've moved your post to this existing discussion called "Burning Mouth Syndrome. Mine is very severe." I did this so you can easily connect with other members like @rgpadilla @lauren123 @sheetrock0131 @bonitav @judybl1 @twentyfour7 @ristu and others who have experiences with burning mouth syndrome.

Discussions about burning mouth syndrome like this one can be found in the Skin Health group https://connect.mayoclinic.org/group/skin-conditions/

Here are some related discussions:
– Burning Mouth Syndrome (BMS): Anyone found any relief? https://connect.mayoclinic.org/discussion/burning-mouth-syndrome-2/
– burning mouth syndrome,or bms https://connect.mayoclinic.org/discussion/burning-mouth-syndromeor-bms/

Lexonpark, have you been diagnosed with burning mouth syndrome recently? How do you manage the pain?

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I am sure I have had this for years. I saw a tongue specialist a few years ago. He reccomended Klonpin, I was already on Klonpin, he just increased the dose. I also go for IVIG treatment. autoimmune deficiency. I spoke with my hematologist (thinking he had patients on chemo who got month sores). He gave me an RX for a mouth treatment. Lidocaine, Bendryl,Nystatin and Mylanta. You have to purchase it from a compound Pharmacy. I have used it 4 times a day for one week. Finally feeling better.

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