am so tired and miserable. over last few weeks have had almost daily pain episodes that leave me on the floor curled up crying or if im lucky and can feel how its gonna develop then i make it to bed. i hate this thing, i have no injuries, im not sick, no one really understands. dont feel like im getting the support and empathy i need. having a major effect on my life, feel like im becoming a recluse, cold and wind seems to make it so much worse. middle of winter here in manchester, grim, cold and windy all day. currently on 2700mg gabapentin and morphine and taramadol. not sure if gabapentin is working, it doesnt make it go away, have constant ache around my jaw, constant ear ache and tooth ache. can almost cope with the ache now, cant cope with the massive flare ups, no idea what triggers it, it seems so random. sometimes it wont allow me to sleep at all, sometimes its early hours i manage to fall asleep, other times it wakes me up in early hours. not great when have a 3yr old and 5yr old that dont believe in having a lie in, am lucky if they are still asleep at 7. my doctor doesnt seem all that clued up about it, when i asked for some information on this horrible condition they printed off the wikipedia page! had 1 mri and ultrasounds to rule out tmd and some other things, another mri on thursday. just hoping and praying there can somehow be a light at the end of the tunnel and that i can have my life back.
I am so sorry you are going through this. I can really relate to wanting my life back, and I am sure a lot of others here do too!
My heart goes out to you. I remember all too well what you are going through. My UPPER CERVICAL chiropractor saved my life. Mine started on July 3rd this year. I couldn't believe the pain!!! Two trips to ER and several meds later I was as bad as ever then I read a blog about upper cervical care (on this TN website) and figured I had nothing to lose. For me, it has worked great; very gentle, no twisting and cracking. Upper cervical chiropractic is a specialized form of chiropractor. You might google it check it out for yourself. My doctor is Dr Drew Hall in Los Angeles but there are others. Best of luck to you. I am so so sorry.
I haven't posted on this site for almost a year. When I read your blog, I felt I had to reach out. I am so sorry you are going through this. Most of us will tell you that the key is to find the right doctor who will be responsive to you and willing to work with you to try different things to help. One would think with all of us with TN, there would be more doctors who understand it, but finding one is rare. If your MRI doesn't show a nerve compression as a direct cause, then you will need to try various medications. The cold weather makes TN worse, so keep your ear and face covered. I wear a cotton ball in my ear most of the time. Gabapentin helps me, along with clonozepan. You will just have to find the right "cocktail" that works. I know this will sound crazy, but try to distract yourself when you have breakthrough pain--play a video game or watch a movie. Everyone here understands, so I hope just knowing you aren't alone is a comfort. Read, read, read and then read more.