I live on the coast of NC in Swansboro (Onslow County) which is 1 1/2 hours from Wayne County. My son is actually based on Seymour Johnson Airforce Base in Goldsboro. I had MVD at Duke University Hospital. My surgeon was Dr. John Sampson. My TN came back 5 years later so instead on my local neurologist in Jacksonville, I am going to Dr. Sampson. Please keep me posted on the group. I don't think that is too far for me if it was once a month.

I forgot. Have you ever tried a combo of Neurontine and Tegretol? Works great for me. I was in real bad shape until we got the dose right this time but I am basically pain free unless I skip a dose or get run down.

My brother in law has this. He lives in Beulaville, NC & is having a very bad time w/ it right now. Any input would be appreciated.

@melanielaczynski ~ I actually live about 2 minutes from Seymour Johnson. I am seeing Dr. Daniel Poole here in Goldsboro and he did mention a neurosurgeon at Duke but I do not remember his name. Even meeting half way would be awesome. I have to go back to the neuro tomorrow for lab work so I will ask his PA if I put together a letter about TN if she could mail it out or email it to the patients that Dr Poole is treating for this disorder and if they would be interested in meeting once a month and see what happens

@peachiegarret ~ does your brother in law belong to this support group? I just moved to NC about 2 yrs ago so I am not familiar with how close towns are but I will Google Beaulaville and see if that is close to Wayne County. I am planning on attending a seminar in Richmond, VA on May 21 in regards to TN and other facial pains. If you go to www.trigeminalneuralgiava.com ~ the website does give you quite a bit of info about the disorder. I also found that if you Google Trigeminal Neuralgia and click on the mayoclinic website that it had a tremendous amount of info as well.

Beulaville is in Duplin county, about 40 min. from Goldsboro.And he does not belong to this group because he does not have a computer. I am trying to help as much as I can in getting more info for him. Thanks

@peachiegarret ~ once I get things together and talk to my neurologist I will email you all the info I have for the group meeting if you think your brother in law would be interested. There is a book that someone posted awhile ago and I have been going back thru the post to get the title of it but apparently it has alot of info about the disorder and how to cope. I have a friend who is a dentist up in Virginia Beach and he has only diagnosed 1 person since coming to private practice and I emailed him as well because he said that his patient bought him the book. I want to say it's called "Striking Back" but again I am not sure. When I find out I will post. =)

The name of the book is "Striking Back". I haven't read it though but have heard alot about it. As far as the group, Beaulaville is actually half way (distance anyways) from Swansboro & Goldsboro. Maybe if we meet there the first time we can get peachiega's brother-in-law involved. Although I am basically pain free with the meds now, I have alot of experience with TN. I have been living with it for 11 years now and have been through MVD which many people have questions about. The meds are working great but I am on my lunch hour at work right now and have been higher than a kite all day.

Lynwood is having a bad time with shocking pains in face. It will be a month before he can be seen w/his Dr. in Greenville. Could you suggest any Drs. that you have been to?He drives a feed truck for his job & is unable to go to work. Trying to get a medical leave.He is on Tegretol. Was on Neurontin, until he had to be took off,it was taking more& more of it to work.

I go to Dr. John Sampson at Duke Diagnostic Center in Durham, NC. He is actually my Neurosurgeon but his practice supports people with TN and I believe there is also a pain center there. My Neurologist was in Jacksonville, NC. Dr. Clarence Ballenger. He wasn't up on all the new more "permanent" fixes for TN but he did get the meds right for me. Jacksonville is only about 1/2 from Beulaville.

sorry - 1/2 hour from Jacksonville.

@melaniekaczynki ~ I found it (Striking Back) on Amazon.com for $21.50 so when I get some extra $$ ~ may have to order it. It is also available through The Facial Pain Association's website but do not know it off hand (sorry)......1/2 way mark sounds good ~ maybe a park??

@peachiegarret ~ I see Dr Daniel Poole here in Goldsboro. It took me a month to get in as well (I think it's the small towns ~ lol) He did mention the treatment center in the Duke area if worst comes to worst. I really really liked him and his getting to the point and not treating me like I was crazy. He flat out told me that he could not cure me but help me with the pains. He went over all the different options and the pro's and con's of everything which impressed me because most Dr's don't do that nowadays. He took the time to listen to what I was experiencing and answered my questions that I had for him. So when your brother in law sees the neuro make sure he documents all the attacks he is experiencing (like a journal) and make a list of ALL the questions he has for the doctor. Everything that I have researched indicates that there is no current cure except options such as Gamma Knife and MVD surgery.

There is a seminar for the disorder on May 21st in Richmond, VA but again it cost $$ and right now it's pretty tight around my house but would really love to go.