I read the description of this, and being someone who suffers from Trigeminal Neuralgia, and knows the 'pain pattern' of TN, I will point out that my burning mouth syndrome is entirely different than this description of Glossopharyngeal Neuralgia.

This is like, type 1 attacks of sudden and stabbing TN pain, only not in the cranial nerve that runs down the face, cheek, ear, neck, rather the nerve 'network' servicing the mouth.

With that in mind, my burning mouth syndrome is much more like "Atypical Trigeminal Neuralgia", in that I'm bilaterally affected, and the burning doesn't stop, except for some mornings when I first wake up and have an hour or so of relief (mild pain) before the pain really starts to return, reaching a crescendo around suppertime/in the early evening. It's there day in, day out, without 'remission'. There's always a degree of pain with my burning mouth syndrome, ever since it began in 2007.

Interesting read, and I can't fathom what Glossopharyngeal Neuralgia must feel like, knowing how dreadfully painful Trigeminal Neuralgia is.

Hi , Thank you for your reply it has been awhile since I have been on this forum. I am still suffering from my burning mouth. It does help to read other posts and to know I am not alone. People without bms and doctors do not understand how debilitating this illness is, sometimes it is all I can think of when it is at its worst. I will try anything to stop the burning I have been taking neruontin it does not stop the burning but helps to fall asleep. I do not eat alot of different foods I stay with the same food all the time which gets boring I love chocolate but it makes the burning so bad also the hydogenated foods which everything good has in it. I have been on my Rebiff for 2 years and has not helped with burning mouth. Maybe someday they will find an answer

Chocolate also irritates mine. Chewing mint gum (peppermint specifically) helps to ease mine. Odd!

Low dose Clonazepam (Klonopin) is the only medication I've tried thus far that's helped to keep the dreadful pain under control for the most part. I hope you too can find a solution for the condition.

Nice to hear from you again, however I am sorry to hear you're still suffering from this too.

BMS is one of the things I DONT have! amazing!

I am so sorry that you have suffered with this for so long. I have watched you go from frustrated and painful to confident and able to take control with careful choices and constant care. you have grown so much.

I am sorry you continue to struggle, but so proud of you for continuing to dig for answers. ((hugs))

I'm so glad you don't have this Dej, it's horrible. Tough to get into remission from my understanding as well. If it even does go into remission... which can take on average 7 years (!).

I appreciate your kind words and encouragement. While it is frustrating, it's wonderful to connect with others who have MS and BMS. (Not wonderful that others have BMS - as I wouldn't wish this condition on my worst enemy - but I believe anyone with BMS will agree that we all begin our search to find others who also have this condition as it's often so misunderstood, and it's total relief to find others who also have it.)

(((((Hugs))))))

Laura

I know this is an old post, but I was re-reading it....and all of a sudden realized that I take Clonazepam at the same time as I take my Neurontin, so maybe it has been the Clonazepam that helps all along. (I take 1.5mg daily .5mg 3x a day) But many days I only take two doses.

I wouldn't be surprised daisy.girl, have you noticed a remarkable decrease in the pain associated with your BMS, or has yours disappeared entirely?

Mine hasn't gone away completely, but some days I really do notice it's barely there, others I have to chew gum as the burning does come through in the background a bit. At 1 mg daily, or 1.5 mg daily, you're most likely getting a good amount to benefit the BMS (reduce the pain of).

Definitely cool if you've found relief from it!

I wish it would disappear entirely!! I hate this feeling, and I think it gives me chronic bad breath!

Mine is better in the morning and worse in early evening. and yes, there are some days that it is much better, and I can go through the early part of the day and it is barely there.

I am so glad to hear that yours is somewhat under control....I know you have really suffered with this.