Hi, I suffer from trigeminal neuralgia pain. It started in 1994 when I woke up one day with a strange burning in my mouth. That continued for 6 years before I had a diagnosis. The doctor tried me on amitriptyline, commonly used to treat depression, but it did not help with the burning. I saw many doctors about the problem and no help. I also had strange nerve pains throughout my body which I had diagnosed as fibromyalgia. I had frequent headaches and a doctor said that I was having migraines so he started me on Imitrex. That did help the severe head and facial pain on my right side of my face. When I was finally diagnosed after my own research on the internet, I saw a neurosurgeon and he confirmed the diagnosis by looking at a CT scan. I immediately was scheduled for MVD surgery so that I could have relief. The pain was increasing and interfering with my every day life. I was a mother of three young children and could not enjoy anything. The surgery went well but I did have a complication of spinal fluid leakage and had to stay in the hospital for a week.
The pain did subside for a while but I would have the head pain once or twice a month instead of every day. It has been like that until recently. I noticed when I was washing my face that I started having stabbing pain on the right side of my face. I was worried that it was coming back and I was right because I have had the pain every day since then with talking, brushing my teeth, washing my face and kissing my husband. If anyone has any treatments that could help, please let me know or if you just want to talk about it so we don’t think we are alone with our suffering.