- CASE FILE
As a full-time working mom of two young children (4 and 1), my life has been dramatically altered by a recent Trigeminal Neuralgia diagnosis
ABOUT THIS CASE FILE
Trigeminal Neuralgia, also known as "the suicide disease," is a progressive nerve disorder with no cure and limited treatment options.
I was diagnosed with this terrible disease in July, and at only one month into my fight, I'm already exhausted and terrified for the future. I was an otherwise healthy, busy, active mom of two young children when what I thought was terrible tooth pain set in. The dentist found nothing of issue and referred me to my general doctor, who then sent me to a neurologist when the pain continued and became more frequent, with up to 100 debilitating attacks a day. Anyone who suffers from nerve pain will tell you, the pain is unreal. I've had two babies and can say I'd take labor pains over this.
I have since found a combination of medications that is keeping the pain at bay, but that comes at a cost - the medications are so strong I cannot drive, am only able to work at about half capacity, and I'm worried to be alone with my own children as I'm not "all there" due to the meds. I have a headache from morning through night and I have also lost my sense of taste, the doctors are unsure as to if this is from medications or TN. The scary thing is, this disease is progressive...so even if the medications are working now, they won't always, and then my option is an invasive brain surgery with only a 70% success rate - and that success can work for anywhere from 1 - 10 years. Since I'm only 32, even that 10 year window won't last long.
Even with the medications, I now live in fear as to when the attacks will start again, and when and how they will get worse.
MANY around the world have been suffering with this disease for decades, undergoing multiple brain surgeries, taking medications that do more harm than good, and living in extreme pain. We need AWARENESS so that the medical community can dedicate more time and resources to finding an actual CURE vs band-aid fixes.