Hi everyone! I'm glad I found you! I have been feeling pretty alone with all this. Sorry this is long but I want to get it all out to see if anyone can make sense of this. :)
My TN started probably about a year ago. I was having horrible tooth pain on both sides of my upper molars. Dentist determined I needed a root canal on the right side and sent me to the endodontist for it. It took two visits and he did 4 roots on the one tooth, and later the dentist put a crown on it. I ended up in pain from that for months. Dentist tried filing it down so my bite was better, and that didn't help. Then she said it must be TMJ. Meanwhile I was living on vicodin just to be able to eat. Ended up with pain on the other side that would come and go. But nothing wrong with the teeth on that side.
Eventually I ended up with the right side being fine (with the root canal), and the left side being miserable! I would have these "attacks" that started with pain in my temple and went around my eye, down the side of my nose, up my forehead and in my upper jaw. I had no idea what it was, but it sure hurt like heck!! It would happen for about a week, each attack lasting maybe an hour or so. And then nothing for a couple months.
In the spring I started having a lot of different issues and Doc sent me to a lot of different specialists to figure out what was going on with me. Rheumatologist number 2 was the one that said it sounded like TN when I told him about my face pain, and recommended my PCP send me to a neuro. He also put me on Lyrica to help in the meantime.
I looked up TN and sure enough, sounded like what I have. I'm pretty sure it must be atypical on the left side because it can last for hours. And now even days on end. Although with my lyrica increased it has helped a LOT. I was telling my mom how I could probably draw a map on my face where the trigeminal nerve goes (she's a nurse) and we looked it up and sure enough, I could trace the first branch and second branch, but I don't get the 3rd branch pain.
So I've been dealing with the TN on the left side, slowly increasing my lyrica dosage with the rheumy to my current dose that helps. And taking vicodin from my PCP for when I have attacks. Taking the vicodin and 800mg motrin make it bearable enough that I can get on with my life.
In December I started getting the lighting bolt pains on the right side in my upper jaw area. These are more intense, but don't last long, just maybe 5 jolts that come out of nowhere and then they are gone. Although I have a lot of tingling type feeling on my nose on that side that is pretty constant. This came about with some facial drooping that my NP said was mild bell's palsy and put me on steroids. Steroids didn't help it, and doing my research it looks more like a nerve 4 palsy, not typical bell's palsy.
Finally had consult with the neurologist. PCP had me go for an MRI with and w/out contrast beforehand so that it would be ready for my consult. Neurologist did his exam (I have more going on than just the TN). Then looked at my MRI. He then told me that he was certain I had MS before he looked at my MRI, but my MRI was clean. Said no sign of any lesions, and no signs of TN, but that an MRI that was concentrated on the TN area could be done and might show something. So neuro says it definitely isn't MS, and that it's not TN either. He said if I had TN I would be having tics and it wouldn't last for hours. I had planned on getting something different for the pain from him but since he said I don't even have TN I didn't. He did order an MRI of my spine and neck and I had that done last week. I go in to see him again next week to get the results from that.
So, last night I was up in awful pain. I was out of my pain meds so just had to wait it out and decided that I can't just live with this and maybe I need to see a different neuro or something??
Does this sound like TN? ATN? I get the awful pain that is like someone had hit me in the face with a hammer, just a horrible boring pain. Like a cookie cutter the shape of the TN branches had been pounded in or something. Makes my kidney stones seem like a paper cut in comparison. I also get the pain in my nostril and eye. That feels like someone coated my eye and nostril in vicks and put me out in a blizzard. I end up having to close my eye and use my finger to press that side of my nostril closed because just breathing, or having the air hit my eye is horrible. I also get pain sometimes in my ear like there is an ice pick jammed in there. And my scalp hurts so bad that i can't have a ponytail in, or touch my head or anything. No big triggers except cold breezes. Sometimes brushing my teeth can trigger it, but not frequently enough to be an issue.
Any advice or ideas??