Trigeminal Neuralgia Support Group
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.
Well since being properly dignosed with TN on March 1st ~ I went back to my Oral Surgeon (Maxillofacial) on March 15th and told him that since being on Carbamazepine that I only had 1 bad attack ~ his response "Great! Your condition is exactly what I predicted but your age concerns me" I'm 39 ~ he also stated that he wanted to see me in a month and possibly starting weaning off the Carbamazepine to see if they were really helping or if the TN went into remission. I have not been to work in almost 2 months because I am terrified of a attack. I don't drive anymore because I feel like I am drunk ~ when I told the Oral Surgeon about the side effects I was experiencing ~ he told me it was the prescription and eventually my body will get used to it ~ Is that true?? I called my primary (Internal Medicine) and he is seeing me on Wednesday March 23rd because I was really upset with how the Oral Surgeon just kind of brushed everything off and sent me on my way. When I even mentioned the severe headaches on my left side (same side as the TN) he said that it was unrelated to the TN ~ Ok ~ then how come he did not refer me to a neurologist??? I am in tears thinking about what the Oral Surgeon said to me and feel the pressure building up for another attack ~ I can't deal with this!
The neurologist is keeping me on Carbmazepine but adding an extra dosage for the time being then scheduling me to have a FULL MRI ~ he also has me coming in next week for blood work to monitor my liver function. He did mention something that kind of stuck with me in regards to Carmazepine. ~ he said that it was obsolete treatment but finds that some patienst do respond to it well. His choice of treatment would be Tripetol? (not sure if I am spelling it right) so after my blood work and results he may switch me to Tripetol. I did bring my notebook full of questions and he was kind and patient enough to answer and discuss things with me. We also discussed the option of Gamma and MVD but said when we get to that crossroad we would get into it further.
I mentioned that there was a seminar in Richmond, VA (3 hours from where I live) on May 21st at the treatment center and he said that would be a great opportunity to attend and learn more about this disorder.
The neurologist advised me to cancel my appts with the oral surgeon becaue he was taking over my case now and was shocked that the other doctor was not testing my blood work in regards to liver functions and white blood cell count.
I'm still experiencing pains but it was to actually talk to a doctor that cared and was patient enough to listen. =)