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

@judybl1

I have suffered from this condition for 9 years. I take 0.5 mg of Xanax, which help some. It also causes dry mouth and sometimes trouble speaking. I researched about it when I first got it. I can never find good information and I wondered if anyone has any recent information that might help. I wanted to get in a study but apparently not enough people have it to warrant a study. Please help if you can!

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@judybl1 My suggestion would be to Join the Burning Mouth group on Facebook. They are very active and supportive. There are over 2000 members from all over the world. I have suffered with it now for 9 years also and have it 24/7, it never left🥵
I have been to many different doctors and tried all the meds recommended to no avail. So not taking any meds for it now. I’m 74 now so I do take meds for other health issues. The older I get the harder the burn but having a supportive husband,family and friends makes life bearable.
I’m so sorry you are suffering and hope that one day we will wake up and it will be gone🙏🏻🙏🏻🙏🏻🙏🏻

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The first thing I tried for burning mouth was see my dentist. He had two other patients with the same symptoms so he was aware of it. One patient, it went away on it's own. The other continued to have it.
Second, I went to my primary doctor and he wasn't aware it exists. I printed everything available on the Mayo website before seeing him. He was very interested and agreed it sounded exactly like what I was experiencing.
Third, I went to my neurologist. He believes it is a nerve disorder. Possibly related to a neck surgery I had for a ruptured disc that caused extreme pain in my neck and down my arm. I have fibromyalgia and nerve pain pretty much everywhere. I've had three back surgeries and have legs and feet numbness and burning ever since. The neurologist did not have any treatment to suggest.
I happened onto Xanax by chance. I was leaving for a trip to Australia and my mother was in poor health at the time so I was distressed about leaving her. My husband asked our doctor if he could suggest something so I could relax and enjoy this once in a lifetime trip. He gave me the very low dose of Xanax 0.5 mg. And I realized I felt less burning when on it so he has continued it in spite of my insurance hassling me everytime I get it filled.
I find stress makes the pain worse. Hot or spicy foods, some red wines.
Lately, it has been more severe even with Xanax. Not sure why except maybe stress.
I hope this will explain my journey and hopefully help someone else.
JudyBl

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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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@jshdma

@ristu Never noticed that burning moth syndrome is worse in the cold weather. It is worse in the morning. If anyone wants to do the work, the NIH has a collection of dozens of scientific articles on BMS, It was recommended to me to read them and find a doc who treats it successfully. I have not done that yet.

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Reply to jshdma
I've never noticed cold air making bam worse. Mine is always worse at night and better in the morning. I take medications for fibromyalgia hoping that would help but does not. Have you tried Xanax. If not, do. A little relief at times. Hope you feel better soon.
JudyBl

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@anon83338660

I too have burning mouth for about 1 year. Was finally sent to a dermatologist. She prescribed klonipin as needed and it worked the first pill i took. She is doing lots of blood work to check for vitamin levels. May also do allergy test to see if im allergic to fhe compounds in my gold crows and metal fillings. This is a Mayo clinic recommended treatment.

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I have been on lyrica, gabapendin, colonipen. None help my burning tongue and mouth. I've had my vitamin levels checked and allergy tests. There has to be some cause we all have in common!

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@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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@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/?utm_campaign=search

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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