So it has been a few weeks since I have posted anything. I have been so busy with everything that I haven’t really had the time to sit down and write it all out. So here goes…
I went to see a new Neurologist at hospital that is in my state but about 1.5 hours away from where I live. After my last “new appointment” with the, lets just say spiteful and know it all, pain clinic doctor (who I did not go back to see after he called me crazy and said all my pain was psychogenic) I wasn’t looking foreward to seeing another new doctor. To top it off when I walked into the office I saw a poster that stated they were now linked to a chart system which other major hospitals in my state use (meaning that my chart from past doctors who had written me off as young and either attention seeking or crazy, had followed me to this new doctor as well) go figure. I walked into the appointment even more nervous and ready to give up than I was before we had left for it.
I immediatly realized that My new neurologist was a very soft spoken man, which was something I had never really seen in a doctor before. And I was oddly comforted by the fact that his office and his exam room were all in one room together, it made it seem less cold and hospital-like. He shook my hand and sat me down and asked me to tell him what was going on. This was the first time that a doctor had addressed me about the problem instead of my mother. In the past the only one they wanted to hear from was my mom. I told him exactly what was wrong with none of the messy details se sometimes includes. I told himm simply how the pain had started, what helped/didn’t help the pain, and that I was there so someone could tell me what was wrong and how to fix it since I had already been through six weeks of hell without any help or answers. He immediatly smiled and told me “Well those are two very seperate things but I hope I can help you with both of those today.” He went on to examine me and go through my prior health history to see if he could make any connections. Remarkably he was able to connect a lot of my very seperate health problems together into a fairly nice package.
He informed me that being dx’ed with TN at the age of 7 is extremely uncommon (especially with how little was known about it in children 12 years ago). But he said that it actually makes sense seeing that a year ago I was diagnosed with endometriosis as well. Apparently there are studies that show that women with endometriosis (or who will develop endometriosis) have very, very, sensitive nerve systems. They are both sensitive to pain and the nerves can be easily aggrivated (hence the TN that I have had for years and possible ON that I have on top of the TN now). In terms of the right sided headache on the back of my head that shocks like TN when I move my neck, at the moment he is thinking that it could be intractible paroximal hemicrania (or at least thats what the paper says). He decided this because the pain in my head does respond a little bit with indocin. I looked this type of headache up and it doesn’t really sound like what I’m having (it deals more with the face and the trigeminl nerve GO FIGURE) but he also said that ON was still on the table. Either way the nerves in the back of my head are angry from me walking into the door in the dark room at school.
He decided that he would bump up my Baclofen and Indocin to higher doses to help curb the pain and that we would do weekly Occipital nerve blocks to try and help calm the nerves down. The theory is that if I do them every week it should eventually “stick” I recieved my first block in weeks that day and went back this past monday for the next one. He also told me that depending on how things go he has a collegue out in Los Angeles who specializes in atypical facial pain/Atypical nerve pain in women who may be able to help as well.
So my fingers are still crossed that this Doctor will continue to listen and help me, I don’t want to get my hopes up too high but I am still hoping. The first nerve block lasted 5 days. The second, which I got on Monday, didn’t last as long (more like two) I am hoping this is just because we had to move the injection site a little since I still had a bump from the time before, and because I over exerted my head and neck because of the holidays.
Wishing everyone a pain-free holiday with no TN flares!