Galimantas, would love to read your articles when/if available. While I certainly do not enjoy my life of facial pain, I have been blessed with much I would not have received as a workaholic. After my intial search for a cure with none to be found, I went through a deep depression. Short story long, I had to grieve for my old life before I could begin my new one as a “Trigemy.” So, I created my own grieving class, with exercises and such. My group was the last “exercise.” We have HOPE in the darkest of night and we are never alone. That has kept me going more nights.
Wow, I really appreciate it that. I sent you a message. I love that “trigemy.” Well, I hate it too. I think you know what I mean. I’m so glad you found a way to deal with your pain and I would be very interested to hear more about it. I am still right now in the researching every day four to five hours a day. I am lucky because my sister is a professor at Gallaudet so I get those articles that cost like $50 for free. I just save up a bunch and send her a list and then she gets them for me within a couple weeks. Sometimes, they are good. Sometimes, I am like oh my god I am so glad I have you because I would have spent $50 on this and it is awful. I am still trying many combinations of drugs and considering surgical options. I am being pushed a little towards surgery and don’t like that at all. Friends, family, doctors all are talking about MVD and I have TN and ATN bc of MS lesion so I am very wary. I had endometriosis and had three surgeries when I was very young that caused damage and didn’t help and then stayed away from doctors for about fifteen years lol so I’m not jumping under the knife unless I’m am sure there is a good chance it will help.
So I am still in the research stage but I still could definitely benefit from all the things you talk about especially not being alone. I know sometimes the pain is so bad that nothing seems to help but I still believe somehow together as members of the chronic pain community we can change the way things are done and bring hope as you say. I have to believe that.
Yes - very like labour pain - I described it just like that to my GP. In my ( long) experience Tegretol/ carbamazepine works if you take enough of it and then gradually reduce. In the long term I have Pilates to be very very helpful too.
Funny. Talking can trigger my pain