I was diagnosed with TN after suffering for four months with bad diagnosis from Drs, dentist, and ER. They all wanted me to have TMJ or a bad sinus or tooth/bone infection so badly. My primary care Dr. was a physician's assistant only 3 years out of school, and kept attributing my description of "horrific indescribable" pain to my history of anxiety.
He was in such denial about my pain --kept saying "wet compresses" and "massage the joint" but it hurt!!!! I came back and begged him to help me after one time too many he was dismissive. Finally he prescribed me Amitryptaline, which helped me about 50%. In that month I changed primary care physicians, but it was still a fight to get treatment or help. In the meantime, I started getting electric shocks in my hands and feet as well. :(
Finally, I got a Dr to listen to me, and I got a neurologist at the best hospital in the area (I am in DC, Dr is at Georgetown). I am waiting on MRI/MRA results and a follow up. He ordered slices w/contrast and it took about an hour and 20 minutes in the machine.
I am up to 400 mg of Tegretol a day and still on Amitryptaline and the breakthrough pains keep coming. Sometimes it feels like a stapler instead of ice picks. It's less distracting and painful, but I still have only managed 3 pain-free days so far out of nearly two weeks on the tegretol.
I have been going through these health problems for a while. Mysterious allergic reactions to medicines I've taken before now send me into anaphlactic shock. A skin rash turned into cellulitis last year, and it was very painful. I also have Hashimoto's disease.
I also had a very bad fall down the stairs 3 weeks ago where my shoulder popped out of its socket. Now I face 6 weeks of physical therapy, twice a week. I don't really feel like it, but I am limited in many ways, can't reach above my head without crying out in pain which means I can't even use my dominant arm to get a glass.
I am 38 years old, and I work part-time as a freelance writer. I also have gone back to college to complete my degree and had made it up to 9 new credits before the trigeminal neuralgia got me.(I had 46 from community college already.) All the classes are online through Thomas Edison State College and I will be "testing out" of many of them after studying the course materials.
Now I feel like all my hopes and plans are in limbo. I am literally scared to make plans for a night out with friends. My boyfriend says he loves me, supports me, will even marry me and take care of me. I come from a toxic family full of abuse and alcoholism. We don't talk much.
A lot of my friends have gotten married, had babies. Others are still going to bars and music shows but I have found I have to be home by 10 pm, because if I stay awake, the breakthrough pain gets much worse.
Not sure what I am trying to say except I was already lonely and trying to find new ways to make friends before this disease hit me. I was volunteering (but now can't commit) and looking for new activities to meet people.
Now the "new normal" is complete isolation. I have no idea how to get out of this pain long enough to try and meet new people or be social. I feel like this disease is a huge, invisible wall between me and the outside world. If I could just figure out how to sleep and still make money, I would do that instead. I have been feeling pretty depressed and lost. I told my boyfriend I am in my mourning stage. But I hate it.