@susanlcw,
I am new to this site and just came upon your request for names... I'm having the same problem (live in the Buffalo, western NY area and am coming up dry- excuse the pun). I don't care where these specialists may be, I am willing to go where they are. If you're still checking in, I would appreciate your sharing any names you may have received.

Hope you're doing better.

Maggie45

Hi Elaine,my name is Patty.I seldom connect,not because I don't want to,its because I'm in hell everyday.I have no interest in anything.
I'm loaded with info.Someone said it right.
It's damage to cranial nerve..
You would be shocked to read where I've been,and what treatments I've gone through. .
It's hell on earth.
I'm a 20 plus year sufferer.
Live in Boston,and I've been to all the finest hospitals in Boston..
Nothing works.
You can have that nerve killed,but it's not recommended. Your will have no feeling and your cheek will sag.Yout could possibly bit your tounge.I tried a temporary shot,I had to place my food on one side of my cheek,and chew so slow.
Dr said not to do it,that wears thin also.
I was so desperate, 2 friends went to Lourdes,in France,they took me so many bottles of holy water.I poured it on me and in my mouth.
Nothing works.
God bless you. .Feel free to contact me. .

My horrible pain is burning tongue which I have had for 25 years plus. Saw many facial pain Drs. Various places in us n. York. Atlanta, Bethesda, me., cedars sania in Los Angeles rang many tris to Gainesvile, fl.to their facial pain specialists with no help anywhere. I believe this to be nerve problem, and if I wear very thin bite plate the pain is gone immediately. If you were given a night bite guard you know how bite plates work-keeping the jaw apart so no nerv connection. You might try that if you have not. To see if tha would work you can purchase a small on at cvs drugs and see if it gives you relief. They are bulky, but just a test . If it helps your dentist can make you a very small-clear plastic bite guard which you can wear in daytime. Also, if available in your state maybe trying mm
Elaine

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.

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..