I am confused!

Could someone please help... I was diagnosed by my Doctor and then confirmed by my neurologist that I had TN. Yesterday I went to my first appointment with my neurosurgeon, hoping I would have a way forward to surgery and he said he was not convinced that I had TN and he wants me to see a facial surgeon. I have been off sick for 2 months increasing my medication every week and it now seems to be for nothing.

I have read Blogs etc and always thought I did not appear to be as bad as others, had good days and bad days but all the symptoms fit....I am totally confused...just want this pain to go and feel like me again....but if the professionals cannot agree what can I do???

So sad and confused :-(

Sorry about your diagnosis of TN. I was given the same news last year. The epitol at 600 MG a day was hard to get used to. I have had no surgeory yet and take 400Mg of Epitol and 300Mg gabapentin daily. I am able to work and can ride my Harley all day if I feel in the mood. I must admit though I go pain level 10 about once a week sometimes maybe once in two weeks. You are in a very hard period to deal with adjusting to new meds etc. I thought I would never ride my Harley ever again a year ago and felt like my active lifestyle was gone. Please talk with some of the other TN patients for advice. Best of luck to you.

Hi Butterfly, this whole TN thing can be confusing at the best of times, having a doctor question your diagnosis can be extremely frustrating. (( hugs))

All of us have TN differently. First time around for me I had electric shock-like horrid pain right under my eye, and wind could bring on.
After an 8 year remission, my TN was way more intense… I had electric shocks in mid to lower parts of my face including lower teeth, cheek, jaw, ear etc and they were triggered by eating, talking, brushing teeth, drinking, washing face etc
I also have TN2, constant pain on opposite side of my face. Bilateral.
You’ll find some people here that actually have control of their TN, but for the most part, many people who are doing well with their TN no longer participate on the site, they move on.
Don’t compare, our journey with TN is unique to us.

I understand you’re on Tegretol ( carbamazepine ), regular or slow release? Sometimes changing from one to the other can make a difference. I get no relief from regular Tegretol, so I take the slow release kind. ( it’s Tegretol CR or XR, depending which country you live in)
Another suggestion depending on what dose you’re on is asking your doctor about adding Baclofen, it’s often used as a booster to Tegretol.

What can you do??
Read, and research as much as you can !! Knowledge is power, and will help you as you go forward and have to deal with medical professionals who might not know as much as you regarding TN.
Huge ((( hugs ))), Mimi