Sept. 7th of this past year I saw my first Neurologist. I was in MN. at the time. I had started in May with teeth pain. Which is the way I now put it because it started in one area and then moved to the other side, etc... Months prior to that I had begun to feel like something was pressing down on my head, and like a dart gun was shooting along side the right side of my head just around the right ear and up. It came and went for a few months. Then May came and teeth plus slight burning or pain in the nose and a weird pain in the middle of my forhead. There was no coming and going with this. A doctor gave me antibiotics which I was extremely allergic to, as he thought I might have a sinus infection, since the dentist I saw said he saw no abcess or decay. I progressed from there to extreme pain in the right ear which came and went constantly, and that does make sense. I felt like I was being sliced in two places above my right ear, had a not so boring but just there pain near the top of my head and then on the top from front of forhead to back. More like scalp pain and burning as if a steam iron were being held over my head.
The N. I saw in MN, perscribed tegretol which I tolerated in higher dosed along with klonazapam, now at 4mg a day. I would have some times especially in the morning hours of some sort of relief. But, as the day progressed it was always the same story. I cried alot, felt confused because I had not been diagnosed accept for the N. saying he thought it might have to do with stress. For the first two mos. of taking meds. I couldn't stand to deal with my hair, and being out, or up for long, bending over or down, eating, (rich foods, my beloved cafe mocha, wine, vinegar type foods, tea, salt, sugar, and so on) Chewing, talking, and long trips in a car are my worst enemies to this day.
Maybe four months later I woke up and felt like a large blood vessel had popped on the left side of my face or head, and that was the beginning of some left ear pain, and such. It hasn't been as bad as the right side. Both N's. that I've seen seem to say they don't know and that's why they call it ATpical facial pain. I have had a few shocks, or jabs, but most of my issues have been burning, or just plain pain. I had to stop wearing eye glasses, it causes then worst head pain and especially by my right ear and top of head. So reading is out of the question as most times I only go on comp. for something to do as I can't work, even though wish I could. Note: My primary care doctor thinks I have trig. N. I did had a MRI finally and all the N. said was, we look for MS, and you do not have that. I was taken off of tegretol which hadn't done a thing for me for months accept to keep my nauseated and tired. I was put on Neurontin, and quickly put up to 2400 mgs a day along with the 4mg Klonzapam. I have the same exact pain areas, triggers, and lack of understanding as I did a year ago. The Neurontin makes me sick and tired, but if I take 3 300mg and 2 K. and lay down and don't chew, or talk, or clean, or do much of anything I get some type of relief. The sombie type I guess.
The bilateral issue as far as facial is much better, but at times I have episodes that cause my whole head to hurt, (feel sore) and when I was on the tegretol I itched around and on my face quite often and would pull my hair up a way from my face.
The N. I see now said all my syptoms I describe seem to fit accept for some. So I am just taking these drugs to see what may happen. I have eliminated most of my usuall daily functions, foods, interests, and activities. Sleep is such a wonderful escape that I sleep way too much. Without having work and things I can do, there is too much time in a day, so I sleep.
O.K. so I hope all this reaches someone doing the research on bilateral pain and or tn/atypical. I've found that not one of the stories I read seem sound exactly alike. So I am now beginning to have a dentist take a bit of care of me. It's county insurance so it's not much but he may refer me to a oral surgeon, as I've been grinding my teeth for years now, and also I had shingles a few years back which at times I've felt like this pain is very similar. No N. I have seen seems to be interested in that topic.
Sincerely,
Debbie Day