Hello -

My name is Mia. I joined this support group with hopes of finding some much needed mental relief and feedback from other people affected by TN.

I am a 58 year old female who was diagnosed with Trigeminal Neuralgia approximately 7 years ago. I didn't want to take the anti-seizure medicine they prescribed so I started acupuncture. Which for the past 7 years has worked and kept it at bay. This past June, I started experiencing powerful electric shocks in my lower right jaw area in June. I could not talk, eat, brush my teeth, drink any type of liquids (hot or cold), sneeze, cough without experiencing debilitating pain in my lower jaw area. I did not seek acupuncture treatment this time because I truly thought that it was a dental issue because it felt like the pain was originating from my lower back molar. I was able to secure an emergency dental visit a few days later. Originally the dentist diagnosed me with a gum infection (he gave me a shot to numb me because I couldn't even open my mouth to have x-rays taken without terrible pain) and prescribed an antibiotic, but wanted me to come back the following day for a procedure to remove plaque/bacteria. I went the next day and they did a gum pocket analysis and then the hygienist came in and said she was going to start my teeth cleaning. I said "I thought I was going to have a procedure to remove plaque/bacteria?" she said that's what the teeth cleaning was for. Then during my teeth cleaning, I was experiencing pain in what I thought was my back right molar. I was then told by the dentist that most likely I had a crack in my crown (even though I had a root canal done on same tooth) and it needed to be extracted. I ended up scheduling appointment with oral surgeon who took an x-ray, then told me they could not confirm that I had a crack and/or fracture because of the crown. They left the decision up to me whether or not to extract the tooth. I just started crying because I was in so much pain, afraid, and because I was at my wits end, I decided to extract the tooth. I was pain free for approximately 2 days and then on my way home the electric shocks started again. That evening I went to the ER because I couldn't take the pain anymore. They prescribed Carbamazepine. I took the medication for approximately 2 weeks but really didn't notice any change in my pain level.

Fast forward 2 months. A friend of mine shared my symptoms/story via email with a neurosurgeon who did her brain surgery a few years back. The neurosurgeon (God bless him!) actually called me directly to talk about what I've been experiencing. He pretty much said my symptoms sounded like trigeminal neuralgia but wanted me to have an MRI first. He then prescribed Gabapentin 300mg/twice a day because he said that the Carbamazepine was not a drug I should be taking with one of my heart medicines. The results of the MRI came back and they did a direct referral to another neurosurgeon who specializes in trigeminal neuralgia. My husband and I met with him and said the MRI did show that, although there is no evidence of a compressed nerve, there was a blood vessel leaning on the nerve. He went over the different surgery options but felt with my situation I was best suited for the Gamma Knife procedure. I have a consultation scheduled later this month.

I'm just going to be honest - I'm nervous about having this procedure. Today it feels like the pain (although nothing like it was) is coming from my right lower front tooth. The pain is so much more manageable since I've been on Gabapentin. I can eat, drink liquids, brush
my teeth, and talk. Right now I am struggling with:
1) How do I confirm it really isn't a dental problem? 2) Do I really need to have the Gamma Knife procedure if the medicine is working? 2) If I have the procedure, do I still have to continue taking Gabapentin? I will also ask these questions at my consultation appointment later this month.

Any feedback you can share I am so grateful. Thank you for listening to my story.