Hi, all.
I'm really glad this community is here, and I wanted to post a message and say hello. I'm also eager to hear other people's stories, and find out if anyone's had experiences similar to mine.
I was only recently-- last week --diagnosed with TN, but I've been dealing with it since I was ten or twelve. I remember what I believe to be the first attack very vividly. I also remember thinking I was "sick" when I was little. I got very depressed because I thought I would be sick forever. My mother often had to pick me up from school. When I was in second grade, I knew it was coming-- whatever it was --so I would tell my mom, but she made me to go school anyway. Thinking back, I believe the cold air and wind on the way to the school bus, and the cold air in the bus, triggered the TN and caused the pain. Then it would get so bad I would vomit, and my mom would have to come get me.
We never went to a doctor, partly because I'm not sure we had insurance, but mostly because my mom doesn't trust doctors.
Since then, the intensity of the pain and how long it lasts has gotten worse. I get stabbing pain that incapacitates me completely, but recently it's been causing panic attacks, I think because I was just terrified I didn't know what was happening to me. The last few times, I had a fit and went completely nuts. I just can't sit still, and I lose it. I'm sure you know what I mean.
I'm wondering if anyone else has experienced this-- usually, I get the pain for a month once a year. So for most of the year, I'm okay, then without warning, I'm in pain for a month. The month is never the same. I've always had faith that it would stop after a month, just because it always had, but now that I know what it is, and the pain seems to be more continuous and worse, I'm scared it'll go for longer. Now, instead of having an attack and being okay for a day, I have an attack, but then I get mild pain or a continuous "small" stabbing pain, or "boring" pain like someone is pushing a screwdriver into my head. I can almost function with this kind of pain, but not quite.
The neurologist put me on Effexor to start with, and I'm wondering why he didn't put me on something else for nerves.
Has anyone else had a similar experience, with it lasting a month? I should also note that throughout the year I am always careful with wind-- I always assumed I had "sensitive ears" so I wear ear muffs a lot. I live in South Florida, so I do get funny looks when I go running in shorts, a tank top, and ear muffs.
Anyway, thanks for reading this long post. I guess I'm just looking for emotional support and friendship. I'm scared out of my mind, which I know isn't making anything better.
Thanks for listening.
Rosa Sophia