mike h,

I feel like we have very similar stories and I felt just like you did, like I was going to die. I'll post my story on here its kinda long but basically its how i got to find out that i had TN & we seem to have similar stories in that it was taking forever to get diagnosed ...

If your like me it took three years to finally be diagnosed and begin some form of a treatment (that didn't work until I gave in to do the brain surgery)... Here's a bit more about my story & the long adventure I went out to figure out what was wrong with me:

In the fall of 2008 is when I first started to feel any kind of pain & that pain was to me "tooth pain." I started taking ibuprofen & putting orajel on my teeth when the pain would come on & ofcourse I thought it was solving my problems. This all continued on for a year until October of 2009 when I had the worst pain I had ever felt. At this time I was a college student and was at my part time job having what was one of the worst attacks I ever felt. The next morning I finally decided to make a dentist appointment at some place I had never been because I was away at college. Needless to say the dentist looked at me like I was crazy and kept telling me nothing was wrong with my teeth.. I had no cavity but could potentially need a root canal because of a teeth dying. He recommended I continue taking ibuprofen and then go see this specialist to have my teeth drilled. After talking to my dad he thought that was a little extreme since my pain had stopped & thankfully I listened to his advice and did not go to this specialist.

December of 2009 rolled around & the pain was still there. It was a come and go kind of pain and something I had learned to live with. Most people who live with TN would probably think I'm crazy to still have not continued my search for the answer to this but the problem with my TN diagnosis was also that I lived 2 hours away from home during the school year & also six hours away from home in the summer because I worked at a beach then. So as I was home for Christmas break my mom & sister insisted I go see my PCP about this finally & I did. Needless to say it left me empty and even more upset about my pain ... He insisted that my pain was being caused by my sinuses and I needed to be taking Claritin-D & using a nose spray everyday; desperate, I went along and tried this with no results.
March of 2010 I went back to my PCP over my spring break and explained how his last diagnosis obviously was not right. So we went on to the next thing & that was grinding of my teeth. Hundreds of dollars later wasted on mouth guards & moldings of mouth guards that would cause me even more attacks I was still in pain.

From May 2010-August of 2010 I chose to live with my parents back in my hometown for the summer before I returned once again to college. This was my least painful time of my life where I had minimal attacks if any (which I now came to find out was probably a remission session I was in ).

In September of 2010 TN came back with a vengeance & worse then ever. Once again to the PCP I went, but this was not before I had tried to diagnosis myself with what was going on.. I felt around my tooth area to find that my jaw was cracking and slipping so I thought maybe I had TMJ.. The PCP agreed and decided I needed to be seen by an oral surgeon. During this time my PCP put me on an arthritis medicine to help with the inflammation before my appointment which once again had no effect on me. Finally my oral surgeon appointment was coming up and the night before I left school to head home for the appointment my sorority sister who is also a nursing student came running up to me telling me she finally knew what was wrong with me. She explained how she had to find a neurological disorder for her class & came across TN which fit all of my symptoms. I just couldn't believe it & couldn't stop obsessing the whole night over the fact that every description I read described me.
The next day I went to my oral surgeon appointment, which I must say was the worst experience and day of my life because of the doctor. We went into the room and he asked me to explain what was going on & I said I do not have TMJ I have TN & he started laughing at me.. I obviously started crying because my pain was so bad that at this point I hadn't slept or ate because of attacks. He does his exam and finally agrees with me & tells me I need to go get a head CT done of my brain to check for MS & a tumor. He tells me I need to get a referral from my PCP for a neurologist and he will help me.

The neurologist appointment was on October 29 or 30 of 2010 and in between these two appointments I was in the ER because of my pain level. Once in the ER I had another ******* doctor try to tell me I did not have TN.

I was finally diagnosed with TN at that neurologist appointment and immediately started in a seizure medicine.

(((Sorry thats so long its just a blog post i wrote for another website)))


Your very lucky that the tegretol is taking away 99% of your pain because none of the 3 medicines I used worked for me. I am only 22 years old and just graduated college so to me this felt like the end of the world, but once you learn to get your pain under control trust me its not. I unfortunately was unable to control my pain and had to get the MVD surgery and am now 7 weeks post op and pain free! I am not sure where you live but if you are unhappy with your care I highly recommend Dr. Raymond Sekula who is a neurosurgeon at Allegheny General Hospital here in Pittsburgh.

As for an answer for what causes this Dr. Sekula explained that TN could be caused with older age because of a vein possibly drooping (kind of how skin does with old age) and starting to rub on the trigeminal nerve. I'm not sure if you are older or if that even helps but i hope it gave you a little relief to know that you are not alone & with the proper care this can be managed.

take care & let me know if I can help you with any questions!