Hi,
I have had migraines since 2001 and as bad as they have been, they are no way near the rude awakening of TN. In early May I ran into a slide-out in our RV (my fiance and I live in it full time) It hit me across the right side of my head, right above my ear. I didn't loose consciousness, but my jaw was sore to chew for a couple days. The next morning I woke up with a migraine in my left eye although I had never previously had one on the left, always right. Also, imitrex did nothing to relieve the pain.
I knew that "something" had happened from the RV incident but had no idea what. Since May I have only had 9 consecutive days with no pain. I had NO idea what what this was, had never even heard of TN, and my neurologist didn't even think of it because it was bilateral. By now I'm on nortriptaline, and cymbalta just for the agony of the feeling the acid is being poured into the side of my face and I'm being electrocuted in my face at the same time. About a month after this ordeal started, maybe two, I woke up one morning, in pain of coarse and the first thought that came into my brain was the words "trigeminal neuralgia". I thought WTF is that and I couldn't open my eyes enough to go online and do a search.....my eyes had become so sensitive to even slightly bright light. When I saw the pictures of the nerves and how they ran and the symptoms I called my neurologists office. I am heavily medicated at the time, trying to just take the edge off. He called me back and I told him, it's TN. He hadn't thought of that because mine presented differently than he knew. He called me in an order for trileptal and some steroids to break the pain meds and rebound cycle.
I've had 6 nerve blocks in my neck and the back of my head, I've increased my trileptal dosage and now on baclofen and I only have 2 or 3 "good days" in a row.
My sister has suggested I try to get medical disability. I have resisted the idea because I keep thinking it's all just going to go away on its own, but I need financial assistance.
Has anyone filed to get help? Is anyone on the same drug combo as I and does it just take a while to kick in? I have read horror stories of surgeries gone bad and that idea scares the hell out of me.
Post here or email me ■■■■■■■■■■■■■■■■■■■■■■....anything please.
Beth