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

@ristu calcium channel blocker is a heart or BP med, I think.

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Hi. Yes it was suggested to try calcium channel blockers. However, I do believe they are for heart issues. Regards Stu

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@meadowhouse

@jshdma Yes, I currently see a Neurologist who is also a pain management doctor. Everything he has recommended so far has not worked(amitriptyline)or
didn’t agree with me and had to stop(Tramadol and Topamax). Since I have had bms for 8 years 24/7 I have tried all the other meds everyone else has mentioned (Gabapentin, Clonazepam, etc. to no avail.
I think I’m going to ask him about B12 shots every month as someone suggested.
Here’s hoping you will find something that helps🙏🏻

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Has anyone noticed that the burning mouth syndrome gets worse with cold weather versus warmer weather? Just today, after having a cold snap for a few days my burning mouth syndrome came back with a vengeance. Stu.

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@ristu

Has anyone noticed that the burning mouth syndrome gets worse with cold weather versus warmer weather? Just today, after having a cold snap for a few days my burning mouth syndrome came back with a vengeance. Stu.

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@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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@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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OK then….Thanks !

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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

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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Hello @judybl1, welcome to Connect. You may notice, I moved your discussion and combine it with an existing discussion titled, "burning mouth syndrome very severe." I did this so all of the members discussing how they live and cope with burning mouth syndrome could see your message and have a chance to chime in and so you have the chance to click VIEW & REPLY to see all the posts already shared by Connect members. The discussion is long, but contains many members sharing their frustrations and how they manage the diagnosis.

@judybl1, other than the xanax, what other things have you tried to manage the symptoms?

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@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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