No, I was not treated at Mayo. I have been to my local neurologist and he treated with nerve blocks into my occipital nerve, about 5 Kenalog injections. Started and still on Gabapentin (Neurontin) and Epitol (Tegretol).

I've had an MRI, MRA etc ... I'm on the same medications, but they have stopped working. This is normal according to Mayo. My neurologist wanted to have a doctor in his complex do a nerve block procedure, but I read on the Internet that the procedure they wanted to perform was obsolete and would need to be repeated every 3 months if it did work. I'm tired of the pain. I have an appointment at Mayo in November, but I'm afraid they will start all over with the same testing. I want some type of procedure done to permanently address it. Even if it causes some numbness - that has to be better than the pain I have had for the past 9 months.

I hear you, Zane (I didn't know my just prior post was going to you). I just don't want to get back into that 'stopped working' place you mention!!! And your apptmt isn't til November! Huh? How could they have you wait so long? I keep putting it out there that someone is going to find a non-invasive (read that 'no drug' 'no knife') means for healing that which has stricken us. Just a thought in closing: you ever had concussions? or blows to the side of your head? do you have good posture (I don't)? do you have scoliosis (I do mildly, always have)? Thanks! Let's stay in touch!

Hi...just to follow up...the nerve blocks are tender, directly into the occipital nerve. Though it sounds painful it really REALLY is effective! Do not stop those meds either, they are specifically for trigeminal neuritis. I don't want any surgery if possible. My pain started about 6 mos after a car accident. Initially I was treated for about 1 1/2 yrs with periodic nerve blocks and continued the meds as well. Eventually the pain resolved. I also have some scoliosis and have sought pain relief from massage therapists and chiropractors--they really help as well. As far as waiting for appointments--I got lucky and there was a cancellation 5 days after the initial onset of pain this time...I also spoke with the office manager impressing on her the severity of pain I was in...another thought: DO NOT SETTLE FOR A WAIT AND SEE NEUROLOGY OFFICE! Shop around and find someone that can see you in the next couple of days if you are in pain!!

So, jenkob and zane, my name's Lee; live in Florence, OR. And jen, would like to know where to find your doc—just in case I want her/him tomorrow! (and not have to wonder about a guy who claims he can do, and can't etc)

I believe what triggered mine was an incident I had overseas. I felt/heard a 'pop' in the back of my neck and a 'fire' up the back of my head to my forehead. This happened about 7 pm and it only lasted a few seconds. Later - around 3 am I awoke and tried to get out of bed. I had severe balance problems and collapsed on the floor. I was taken to a doctor where he discovered I had extremely high blood pressure as well. After 3 prescriptions and about 5 days I flew home and my family doctor has had me on blood pressure medications ever since. the MRI showed I had a collapsed right vertebral artery, so 10% of my blood flow was affected to areas of the brain that deal with short term memory and balance. I read on the Internet that a collapsed vertebral artery can cause trigeminal neuralgia on the opposite side of the face - exactly where mine is. I saw a specialist in Iowa City - he said I was suffering from 'dementia' - it was all in my head - I was just imagining the pain. What a joke! Then I saw a local neurologist. He spent 5 minutes with me and claimed the collapsed right vertebal could have been that way since birth. Right ... That's when my family doctor got me the referral to Mayo. I'm not imagining the pain! I am an intelligent adult; I serve on city council; I participate in community theatre; I teach a Sunday School class; I have 6 kids, their spouses and 8 grandchildren I interact with on a regular basis. At 56 I have a lapse of short term memory occasionally that I recognize. I think it is because of age and the lack of blood flowing to my brain that controls short term memory.

I did fall off a ladder in August 2011 and smacked the back of my head, but the trigeminal neuralgia started in mid-December.

I do have a question for those on a combination of tegretol & gabepentine. Do you experience slight spasms in your shoulders, elbows, and wrists? I'm taking 200 mg of tegretol 3 times per day and the same with the gabepentine. I recently increased the dose to that level and did not experience these before.

Zane

Yours is a unique situation Lee, I can only say that....it doesn't appear to me to be 'all in your head' or that you are imagining pain. Pain is a real condition! In addition to neurology, there are pain management doctors out there. Not sure if one is close to you or not but you might seek assistance from them. Neurologist--well you could see another and make sure you tell all the details of your situation. Mayo might help--I have never been there but have heard only good things!
I am currently taking Gabapentin 600mg and Epitol (Tegretol) 200mg each of them three times per day.
I would make sure you tell your MD that you are reducing the dose.