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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Thank you so much for your replies. this means a lot to me to have someone to discuss this with.

When i was talking with the neuro he showed me a list of medications used for this TN. tegretol was the first. The second best has almost the same stuff in it as tegretol so he was leary on putting me on that. He said i would probably have a reaction to it. So this muscle relaxer was the next med down. then there are only 2 left after that. so im praying this works. Ive been on other antiseizure meds for this Topamax and Lyrica and neither one worked. Topamax made me crazy. i was in ER 3 times in 2 weeks because i thought my heart was gonna stop. Then i went again because i thought my body was full of swollen lymph nodes. Crazy huh??? so dr instantly took me off that. These were PA drs that tried me on whatever they could. then when i switched to my NY dr he got the ball rolling and rapidly refferred me to the neuro. Im not one to go the dr. This past year was the only time i actually tried getting this pain figured out. other than that out of 15 years i tolerated the pain without going. I had just figured they would pass it off as undiagnosed migraines and send me on my way so i never bothered on going. The only time i went to dr was to deliver my children. I now wish i would of gone sooner to figure this out and by now i would probably be pain free and living a good life.
Recently the pain has been starting on my right side. Both sides never hurt at the same time (thank god) and that has the neuro concerned. But..he did mention something about my jaw. I do have TMJ. i go to a dentist to get xrays in a couple weeks to see how bad it is. I do feel alot of pressure and when my jaw cracks i feel that same pain. He thinks my jaw may be adding to the TN and causing it to be worse off. When i open my mouth my left side pops out about 1/2 inch and then i have to shift my jaw to the side to get it close. My right side last week hurt so bad. it was hard to eat. so im wondering if it is my jaw. its just weird that that right side started hurting at the same time i had the head pain.
My mother had severe migraines and so did my grandfather....I think this may be something that was passed on to me. With my mother they said it was hormonal so she lived on painkillers i remember her being severely ill with them and then one day they just stopped. TN goes into remission for days months or years. She told me the other day that shes been getting them again and her face goes numb and burns and i said "thats what mine does" so we are now linking this to a genetic thing. She said she remembers my grandfather pacing the floors just holding the side of his head in agony. So defintely its not a hormonal thing if my grandfather went through this lol We have tried going back further into the family to see if his father or grandfather had this pain but no one knows for sure. So if my MRA comes back normal then im sure this is hereditary.
I may get my son in for another check up. He is starting to get headaches. only a couple times a month but i keep asking where and he says his forehead. He was sick with a cold so im thinking it was probably sinus pressure (i hope) ive had his eyes checked and hes 20/20 dr. said just to watch it and if it intereferes with school then its time to get them further checked.
Thanks again marcia....if it wasnt for you i wouldnt of even gone back to the neuro and demanded a MRA. No one was gonna look further into this. he wanted to put it off until i tried all different meds and if it worked he wasnt gonna order the test and i thought of you and then i said "No i would prefer have it done now" and he wrote it out. So thanks again... and ill keep ya posted on how it goes.
Have a great day!





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