Burning Mouth Syndrome. I have it very severe.

I have suffered from bms for over 25 years-no cure. I do find Lyrica helps a little, but better is using a very small, lightweight bite plate during the day. It keeps the jaw slightly apart and keeps nerves from firing burning pain. A dentist can make you a very thin one to try, or cheaper than that go to cvs drugs and bight their lowest priced bite plate and see it it helps. Those from drugstores are big and bulky but give you an idea to see if help comes. Than your dentist can make very thin ones for your

Good luc
Or try mm if in your state

Happy to hear you decided not to have gamma knife.
All Dr's in Boston hospitals will not touch anyone with this condition. It go aggravate the nerve and worsen.Gamma is only for trigeminal nerve problems.I know a woman who had trigeminal neuralgia, and gave her gamma knife.
He took away her pain.
It is not recommended for b.m.s.
Please read any liturature you can get.
I hope you don't change your mind.
I'm surprised your Dr.would consider this treatment.
Believe me,I begged for it,but I know better now,after conferring with many Bostons finest neurologist.

Please fell free to contact me.
I to have been a sufferer for 20 plus years.
I am on cymbalta.Same as lyrica.
God Bless..
This condition is hell on earth,and devastates ones life.

My user name is sheetrock0131

Have had burning tongue for ver25,years everyday the same horrific pain. Lyrica helps, but find that wearing a very thin ,ightweight bite plate during the day keeps the jaw apart just enough to quiet the firing nerves.m takes the pain away instantly. The smaller the better as large ones too bulky, etc.

Also if allowed in your state s great for pain.

Connielaine,
Thank you so much for getting back to me. I will take all the info you shared with me and bring it to my next app't with a new dentist I'm seeing in June who can hopefully help with creating a bite plate as you've described it. I'll also be contacting a Dr. Andres Pinto from Case Western who was recommended to me by a friend in NJ who is a dentist and has heard of him as someone who may also be able and willing to try to help with this. Will let you know how I make out.

Do want to share with you all that I did meet with an hypnotist in Rochester NY who was very empathetic and helpful.. he put me a most restful state of mind and made a CD of the session with me so I could use it as needed- I've done just that and it does bring relief even if not lasting. So important to find people who "get this condition." I find one of the hardest parts is to socialize (over food) with people who even though they say understand, obviously don't. This is something the fellow from Rochester said I need to work on-went out yesterday to share in a graduation party (over food) found I could eat nothing without incurring pain and had a mild meltdown... got back in control and stayed at the party but it was all so difficult being around people who don't understand what you're experiencing even though they are well intendioned.

Have any of you ever gotten together to actually meet each other somewhere? I would love to know if that is a possibility?
Also, I too am having difficulty contacting you all in the most expedient way. That being said would you mind passing this message along to sheetrock0131- as you, she's been so kind in her many responses and sharing of thoughts.

Again, my thoughts and blessings to all of you; so impressed by those of you who have been coping with this for years- just 2 yrs. in myself and it feels like an eternity- the isolation that comes with this is devastating.

Hi,
So happy to hear from you again. I really do not know how to contact anyone via this email.
I have an iPad and not too good with it. I really wish I had your phone number as talking so much better. Is that allowed.
I wanted to mention that I feel no pain when I am eating but must keep, the weight down. I suppose the painless eating is again the idea of keeping jaw apart. Right nowhere I am wearing my lower bite plate. My friend made me a few for upper and a few for lower. I rotate them sometimes.
Please let me know how to reach you, but in the meantime please reconnect with me.
Good luck.

I'm happy to hear from you.
I have no problem giving you my phone number.I just want to be sure it's kept private.
I'll try to contact Mayo clinic,and ask them about the privacy law..

Maggie 45, thank you for the feedback. You are very expressive in your description of this condition. As to eating socially, I understand your situation very well. It does impact social relationships. My daughter's wedding is coming up soon, and I'm very stressed about undergoing all the events, especially the wedding day. I am willing to be contacted by phone by you, but I don't know how the procedure is set up. It does help to have people who are willing to share their experiences, but I've found that it's difficult to find methods that work for all. Thanks.

I'm so happy for your daughter.
Don't put to much thought into it.Sometimes we awfulize about things.
Be positive about the upcoming event.
You will be so preoccupied you won't even notice.
Why don't we try facebook.
I will friend you,and privately we can share phone numbers.
My name is Patty Cataldi,I'm sure that will work..Good luck.
Hope to hear back from you..

@sheetrock0131 and @lauren123, you can use the private message function to exchange phone numbers safely. However, I also encourage you to continue to share here on this forum as the benefit for many is strong and extremely valuable.
So glad you have found support.