I don't suffer from BMS but wanted to send you kids some hugs and well wishes..

I have had the burning mouth for about a year now. Can't imagine having it as long as you! Mine is not as bad in the mornings, but by the afternoon, it is killing me. Ice water feels wonderful, and if I miss a dose of my Neurontin....it gets worse!!

I'm the same with Clonazepam.. I tried to cut back to .5mg daily (I'm at .75mg daily now) and the burning came back full force.

Yesterday the pain was through the roof, honestly. Think I 'overdid' it and caused a flare up.

I find that Stride peppermint gum (their b12+b6 gum as well, "Kinetic Mint") eases my BMS tremendously.

I tried to 'pin' the BMS on something for years that triggered it (medications, dental work, allergies, etc) and can't find ANY cause, save for what neuros have told me: Brain stem lesion. Seeing as how I suffer from Trigeminal Neuralgia as well, affecting the nerves into the head/face, it certainly makes sense that MS caused 'wiring' damage, thus the BMS.

I had my vitamin etc levels fully checked, checked for every A/I disease possible, various other blood work/investigation. All came out 'healthy', save for the MS.

Such a frustrating condition to 'guess' it's the MS.. but then again, doctors and neurologists play the 'guessing game' with the McDonald's criteria daily to diagnose MS. So much uncertainty with this disease.

Thank you Sally you're awesome!

I have MS and burning mouth syndrome. I have had burning mouth since 2008. Some days are worse than other's. It starts to take over your life, I am on Rebif for MS. Some day's it is like my whole body is on fire and is going to ignite. I have found that if I eat foods with hydronation , mostly the partially hydrogenated soy or cottonseed oils make it worse. I had upper dental implants put in in 2008 then started to get burning mouth . The doctors do not know how to treat it. I do not do well on clonazepam or klonopin, neourtin. I have to take temazepam to sleep. I rinse my mouth with benadril liquid with some relief. This is a dreadful syndrome and I wish they knew more about it. I have read some people have had it for 20 years. It is nice to have a place where other people can understand. Thank you

Hello bobbieoma54, and welcome to NeuroTalk although I'm sorry for the reason that brought you here.

I have MS and although I've never had the symptoms you mentioned here, I do know some-one who did. Here's a website that explains the condition that you might find useful.

http://www.ninds.nih.gov/disorders/g..._neuralgia.htm

Hi Bobbie. I am so sorry for your BMS and pain, but glad you found us. I hope you and your Doc can find the right Med for your relief.


Please stay and join us.

Nice to 'meet' you bobbieoma54 Sorry to hear that this crappy condition brought you here, but glad you posted. It is comforting to know there's others like us out there. Sorry to hear that you aren't able to take certain medications which are traditionally used to treat the condition. Hopefully you'll have a remission of the burning mouth eventually.

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

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.