- CASE FILE
13+ years of constant throbbing, stabbing, knife-like pain in left upper front quadrant of head diagnosed as Atypical Trigeminal Neuralgia.
ABOUT THIS CASE FILE
I was diagnosed with Trigeminal Neuralgia in April 2007, 11 months after the intense pain began. Since then, I have had 2 MVDs (Microvascular Decompressions), 1 CyberKnife (radio surgery), 1 PBC (Percutaneous ganglion balloon compression), 1 Peripheral Nerve Stimulator (removed), 1 Motor Cortex Stimular (currently still implanted on brain), 1 nerve block, and perhaps 1 or 2 more I've already forgotten about from all of the meds I'm currently on and/or have taken throughout the last 13 years.
I feel pain...ALL of the time...all around my left eye, my left temple, and down to my jaw. The pain literally stops in the center of my head, like if you were to draw a line down the middle of my face, one side hurts, the other side is fine. The pain is a constant throbbing, yet dull pain, with occasional breakthrough "episodes" of stabbing, knife-like attacks in my temple. I have ptosis (eyelid droop) of the left eye. The more intense my pain, the worse the droop. I always look crooked in photos....
When this pain started, I was working full time and would suddenly start crying at my desk. About 3 months after my first MVD I got pregnant and had NO pain throughout the entire pregnancy. I thought the surgery was success! However, within HOURS of giving birth, the pain came back. The same was true with my second pregnancy. VERY odd. My world-renowned Neurosurgeon had never seen this before. Oh joy.... When the weather systems change, my pain gets worse. I can tell you whether or not the weather people on TV are lying. I could have already done that with my knee. I definitely don't need to do that with my head. My eye. My jaw. You get the picture.
The doctors I was seeing are on the board of the TNA: Trigeminal Neuralgia Association, and they couldn't help me. I currently take anti-seizure and headache medications, along with anti-depressants, as I've had my issues with depression and thoughts of suicide. I also see a doctor for acupuncture every 2 weeks as I don't like being on meds. I'm exhausted all of the time, and I don't like Lyrica does to my brain (one of the meds). I don't know what else to do. And with my current insurance, I'm very limited with my choices (even though I'm paying through the nose for it!). I know I'm not alone in saying this, but unfortunately, it's the world we live in.
BTW, did you know if you Google "Suicide Disease" that it'll bring you to "Trigeminal Neuralgia? If that's what I even have. Because with all of the surgeries, meds, implanted devices, and even acupuncture, I still have pain. LOTS of pain. Every day. ALL day. :(
I know you have lots of other people with lots of different ailments, but if you could consider helping one mom who just wants to be there for her boys, one of whom is on the Autism spectrum and takes a little extra patience most days, please consider me. I just want to be pain free. Whatever it takes. I've already had my head opened up 3 times, if it means again, so be it. I just want to live a normal life again.