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

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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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Hi. So I read your discussion. I've tried everything you have mentioned so far. You might want to try calcium channel blockers. Also, you might want to try hypnotism. 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🙏🏻

Jump to this post

@meadowhouse It has been suggested: go to "pubmed" a government website, enter "burning mouth syndrome." There are found 100s of scientific papers, written by doctors who have treated BMS. I was directed there to find some successful treatments. But it is a big job to read so many long papers. Has anyone tried this?

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@ristu

Hi. So I read your discussion. I've tried everything you have mentioned so far. You might want to try calcium channel blockers. Also, you might want to try hypnotism. Regards stu

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@ristu Thanks for your suggestions. Have you tried Calcium channel blockers and did it help. I am not familiar with this?

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@meadowhouse

@ristu Thanks for your suggestions. Have you tried Calcium channel blockers and did it help. I am not familiar with this?

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

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@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🙏🏻

Jump to this post

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!

Jump to this post

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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