TN - New diagnoses

Hi everyone -

I am new to the site and being dismissed with TN; not sure then if it’s T1 or T2 but based on what I’ve reviewed thus far, my shock pain only comes when I touch my face (jaw, chin, lip, cheek).

I’m writing for help and guidance. I was prescribed Tegretol 400 mg (1 pill 4 times a day). Thus far, it seemed to slow the pain tremendously but after reading I’m discouraged: 1) because I don’t understand how this happened to me, 2) many people have stated their medicine had to be increased several times yo the maximum dose, 3) with surgery the pain came back.

I know there’s no cookie cutter answer but has anyone had an experience where the medicine was successful without increase in dose?

I am also seeing a chiropractor because I’ve read upper cranial treatment could work. I’m seeking all advice including supplements. I sure currently take b12 daily and iron as I am anemic .

I am so sorry for your pain. I was finally diagnosed 4 years after the pain started & found Tegrrotol to be a miracle drug. Over time my dose was increased then did an MVD…Almost 4 years later the pain came back & back on the medication plus they added Baclofen as my dr called it a cocktail. It helped then found a Dr that specializes in TN & had a second MVD. I feel very lucky to have found the 2 nd dr in my town & have been pain free almost 10 years. Having been on this site for over 10 years it is common for the dosages and or the medications to be adjusted & or changed.
I chose surgery because the higher dosage made it difficult for me to stay focused. I hope this was helpful & sending light & good thoughts your way.

Thank you for responding. This helps a lot. I was going crazy trying to understand why doses would change so frequently.

Prior to your diagnoses, what did you do for pain relief?

I’m glad I was helpful. Before my diagnosis I was in fairly constant pain & prescribed meds that didn’t work. It took me 4 years & 16 doctors to be diagnosed. Drugs like Vicodin, lyrica . Some drs thought TMJ… when they finally prescribed Trileptal it was a miracle!
I am a big fan of MVD surgery and t
An experienced surgeon. I found mine through the facial pain association.

Hi PwPage,
Your journey with TN sounds very familiar. I started with a neurologist, who did acupuncture, reiki and cranial adjustment (with little success) along with medicine intervention. I have taken Neurontin and Tegretol. Currently, Tegretol at 900 mg total a day has been the answer for pain relief. I take an Extended release formula of the generic Carbamazepine. I also had success with MVD surgery on the left side of my face; it is the right side I am treating now. I live in Michigan, and was treated by Dr. Casey. Depending on where you live, finding the right medical professional can be challenging. Surgery or one of the percutaneous procedures may be right for you. Join the Facial Pain Association, they have a lot of resources and physician referrals. Also, look for a support group in your area. If you can’t find one, my support group in Michigan hosts Zoom meetings monthly, you are very welcome to join. Let me know if you would be interested.

I also tried Reiki & several people in the local support group had good results with the practitioner ( she spoke at a meeting) but for me it was excruciating afterwards. We are all so different in outer responses.
Yes I also was prescribed Neurontin along the way. If I hadn’t found my dr through the facial pain association I was going to contact Dr Casey. They are a great asset as well as this group. Be well

Thank you! I’m originally from Michigan so if I can’t find a local one here I’ll definitely join because I’m struggling with just daily things

A chiropractor told me I had TMJ. I know I struggle with nocturnal bruxism; however the zaps I’ve experienced in congruent with the medicine working I’m sure it’s TN. I am going to see a TMJ specialist just to have that done to check things off the list prior to the neuro appointment in a month. I still struggle apply pressure to the lower jaw bone area and my jaw hinges seem tight so I like that addressed as well to see if some relief can be provided so I can truly feel close to no pain.

Sounds like a smart move. I wear a night guard but have for a long time before TN. Good luck with both appointments & hope you get some answers & relief.

Great, let me know.