Hi Everyone
This is a post for you parents of a TN child and/or if there is anyone on this site who is young or who has had TN since you were young.
My daughter is nearly 11 and has had 24/7 face and head pain for 3.5 months. She was preliminarily diagnosed with TN by her neurosurgeon. We've found a malformed/lumpy artery next to her trigeminal nerve, so TN seemed to be the most likely of diagnoses.
However, she says that she doesn't have the burning/electric type of pain that many TN sufferers feel. Her neurologist and pain management doctor agree that she doesn't have straight forward/classic TN symptoms.
She's also now developed migraine type of pain (in addition to her TN pain) in different areas of her head than where she feels the TN pain.
We're weaning her off of Lyrica. It didn't help at all. And, we started her on Trileptal 1.5 weeks ago and are increasing her dose each week. It's not yet helping her either. We're also taking her for physical therapy twice a week, to a chiropractor once per week, we tried acupuncture twice and she doesn't like it (nor did it help), and she has her first appt with a pain psychologist today. She continues to have 24/7 pain.
I'd like to connect with anyone who can offer suggestions or who may have a similar situation. We live in the Houston, TX area. So, if you have resources, specialists, etc that you know of in this area, that would be very helpful.
Thanks.