Help Kayla Pettiford Fight Trigeminal Neuralgia

Hi everyone,

My name is Danielle and one of my good friends, Kayla Pettiford, was recently diagnosed with a super rare neurological disease. She is literally fighting for her life in every aspect while still trying to be a mother and wife. Her better half, Jon, has been her rock, caregiver, and sole provider for their family for over 6 months. I would love to take even a little bit of stress off of their plate if I can. If you personally know Kay, you know how she is and who she is, but for those that don't know, she's the happiest, bubbliest person that would do ANYTHING for ANYONE. So to see her go from who she was to this is heartbreaking. I'm asking everyone if you can't spare a couple bucks, will you please share it? Thank you!!!!!

This is her story...

I have gone over and over in my head if I should make this post, but if there are other friends or family here that can relate or have ever had a family member or friend go through the same thing, that's one more person I could add to my support group and exchange information with. I am ready to be a strong advocate for this disease that's rarely talked about. Not enough research has been done to figure out why this happens to perfectly healthy people, especially women, out of the blue. The past 6 months have been the hardest time my family and I have ever gone through. Here it goes... This is going to be a long read.

The pain started one day when I was in the shower. Out of nowhere, I got this intense pain in the right side of my face, jaw, head, and neck. It felt like I had a toothache in every one of my teeth, inside my ear, my skull was being electrocuted, someone was stabbing me in my face, a burning sensation, my neck and glands had shooting pain all the way up the side and back of my neck. I crawled out of the shower onto my bed soaking wet and lay there crying for 15 minutes until it stopped. I thought to myself, “OMG, I have a severe toothache and need to start antibiotics.” I used to work at a dental office, so I have a little knowledge about what they will do if you have a bad tooth. I had two weeks' worth of leftover antibiotics and started them right away. During these two weeks, I was struggling but still able to work. I was in bed every chance I got, and the shifts were hard. I was getting the same pain I had but not as intense as the first episode I experienced. On the last day of my antibiotics, all hell broke loose. I started running a fever, and that pain I had in the shower was back but even worse. My glands were so swollen and sore I could barely put my head down.

I didn't want to go to the ER because I didn't have health insurance and couldn't afford the medical bill, but my mom convinced me to go get checked out. She picked me up, and we went to Hurley Hospital. I was seen right away, and while laying there in the hospital bed, the episodes just kept coming in and out. The doctor that I saw checked my teeth, but I had no pain when pressing on them. She said it didn't look like I have a cavity. She then pressed on this certain spot inside my mouth (it felt like near the inside of my ear) and triggered the worst episode I had yet. She had an idea of what she thought it was, but because people misdiagnose this rare disease, she started me on a bunch of medication to see if it would help give me some relief. She thought it could be one of three things: a severe migraine, TMJ, or worst case, Trigeminal Neuralgia. She gave me a shot in my arm for the migraine; that didn't work. A strong dose of Tylenol; that didn't work. So then she gave me Carbamazepine and Gabapentin. That helped right away; my episode stopped, and I was sitting up in bed ready to eat some food finally. She diagnosed me with Trigeminal Neuralgia. My mom and I were so confused and had no idea what this was; neither of us had heard of it before. I was referred to a neurologist but couldn't get an appointment right away... they were all booked months out. I begged to get in and asked numerous times if they had emergency visits and was declined. I immediately started journaling everything. As of now, it's a waiting game. Waiting for some real help, waiting for some answers to questions it seems like even the doctors don't know how to answer. Waiting for my life to resemble some sort of normalcy.