burning mouth syndrome 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

Hi @jshdma,

I moved your message and combined it with this existing discussion. I did this as I thought it would be beneficial for you to connect with the many members who are discussing much of what you are experiencing. Simply click VIEW & REPLY in your email notification to find your post.

How are you managing your symptoms, @jshdma?

REPLY
@jshdma

Burning mouth syndrome is a painful affliction, apparently with no treatment and certainly no cure. Since it is defined as a neuropathy, has anyone ever asked a neurologist about it? I have had it for 4-5 years: restricts eating, deformed my mouth, changed my life and nlo hope of ever improving.

Jump to this post

Welcome to the group!
I think you will find everyone to be very supportive and compassionate.

Liked by seddso

REPLY

@meadowhouse Thank you. My question is: since BMS is known to be a "neuropathy," has anyone ever asked a neurologist for help? The Academy of Neurology posts dozens of articles about BMS, but I do not see any that offers a cure.

REPLY
@jshdma

@meadowhouse Thank you. My question is: since BMS is known to be a "neuropathy," has anyone ever asked a neurologist for help? The Academy of Neurology posts dozens of articles about BMS, but I do not see any that offers a cure.

Jump to this post

I liked your post. So all respond. That is a good idea, but I've never attempted to talk to a neurologist. I've had burning mouth syndrome almost four years now. Also, another idea is to be hypnotized. Another idea is to try amitriptyline. It's an old day antidepressant drug.
The thought is the drug will shut off the neuron transmitter from the throat to the brain and stop the discomfort in the throat. It is taken in a very low dose with virtually no side effects.
Regards,Stu

REPLY
@jshdma

@meadowhouse Thank you. My question is: since BMS is known to be a "neuropathy," has anyone ever asked a neurologist for help? The Academy of Neurology posts dozens of articles about BMS, but I do not see any that offers a cure.

Jump to this post

@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🙏🏻

REPLY
@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

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

REPLY
@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?

REPLY
@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

Jump to this post

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

REPLY
@meadowhouse

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

Jump to this post

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

REPLY
@jshdma

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

Jump to this post

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

REPLY
Please login or register to post a reply.