I truly do not understand why it is so difficult for drs to give you answers! Everyone you sew has something different to say , different theory, the same old run around…OK ya you have atypical trigeminal neuralgia. Ya but why and what do I do to fix it??? Nobody knows they say they don’t have the answers…is there just no research being done? What do we as a community have to do in order to get help? It’s absolutely insane . please I don’t know what to do anymore nobody will help me …I’ve seen 19 doctors and no answers no fixes just medicine thrown at me. I’m about to cry my eyes out
I can’t do it anymore
Sorry Jennifer you appear to be at your wits end.
One of the biggest mistakes in illness, TN or otherwise is expecting a medic to ADD something to the mix to feel better. Does that actually make sense, bearing in mind what they are likely to add. Wouldn't it make sense to actually remove something in order to improve things? This is getting some what depressing. Remove , remove, your likely to get a more positive response to any illness including TN.
What is there to remove?? I have no idea what to do anymore! I feel like I’m about to have a panic attack!
Dear Jennifer,go get an ice pack and wrap it in thin cloth and place it on your pain side face.Then watch a film and try and focus on the film.The ice will still the nerve somewhat,not all.And you will calm yourself.Your medication will work again hard as it is to believe.If your mouth is burning suck on some ice.Maybe you do these things already…but you really need to ground yourself,breathing,ring someone…it sounds hard when you are in pain and panicky but you can do it my dear! Hugs!
I’m just so scared that injection damaged the nerve beyond repair…or even that it will take 6 months for the burning to subside like last time. I worked so hard for a year to make that progress. Unless you have burning inside your mouth it is so hard to understand the pain. Its like acids and fire is just torturing you non stop all day everyday its not attacks its constant. I will try and keep my faith as I did once before and I thank everyone for the support it really does help
Jennifer, this sucks. Majorly. You know, my heart, it hurts so badly for you. The constant barrage of being stuck inside this realm of an unrelenting life. I'm nearly in the same boat with you. Believe me though, there are reasons to have hope. While we can't see the reasons yet, we will get the answers one day. I'm three years into the fight and have gone through countless procedures and drugs. The only thing that has given me relief is my therapist. She has nearly neutralized all the emotions created from the fear of being alive. There are specific steps we can take to remove emotion out of our pain. But first, I just want to encourage you to know you are beating this. If you'd like to know more about what I've done to manage my fear of being alive, ask me anything you'd like. I am here for you and it seems like there's a lot of folks here for us in this place.