"Trigeminal Neuralgia is very hard to manage." Those were the first words an ER doctor told me, as I was explaining my symptoms one day in the ER. And boy....were those the truest words that just summarize TN perfectly.
May 2020, I began having an electric shock on the right side of my face. It started out of the blue. The easiest way I can explain it, is like literally being electrocuted in your face. The pain lasted about 2 seconds, but it was so intense that it would make me jump a little. It was only happening when I was brushing my teeth. I had an electric toothbrush, so I thought there was an electric short in it 🙈. Then the shock pain would slowly move in when I was eating. It started slow, but then on July 29th, it was so severe, I couldn't open my mouth at all. I went to an ER dentist. I remember sitting in that lobby at 11:00 at night crying my eyes out, and being so scared because this pain was unlike any other pain I had ever had. The dentist ended up pulling a tooth.
He was getting so frustrated with me because the numbing medicine wasn't working. I kept having the shocks, as he was trying to do his work. The next day, the pain came back. I followed up with the same dentist, and he did another round of x-rays to make sure that he wasn't missing anything. My 3rd visit with him, he gave me the diagnosis of TN, and explained that it all made sense why the numbing medicine wasn't working because it was TN. He explained it all clearly. I followed up with my PCP, who basically laughed at me and said TN was rare, and the pain was just from the tooth being pulled. I went from July to October with the electric shocks because my doctor did not believe it was TN. Finally, in October 2020, my doctor gave me a neuro referral, and said that he knew it was TN all along....🙄. My Neurology experience was a nightmare. My first neurologist was rude and did not understand the TN pain. He put me on a medication, which made me black out. I remember falling asleep cooking dinner because I was not with it, on that medicine. I was falling asleep, as I was talking to people. It made me feel so awful. He lost his temper with me and told me that it would just take time to build up a tolerance to it. He then tried another medicine, and I had to go get blood work every 2 weeks under that medicine. Under his care, I had to visit an ER because the pain was so bad, and he said he couldn't help me anymore.
There were no other treatment options he could offer (he only tried 2). I called the office manager to switch to a new neurologist after expressing my concerns about him. I got an email a week later, that I was dropped as a patient due to my complaint. I was livid. My PCP referred me to a neurosurgeon, since medicine wasn't working. Neurosurgeon said I was too young to do surgery, and that there was a long list of more medicines that he could try before doing surgery. He sent me for a FIESTA MRI, which showed a small abnormality (which didn't show up on the first MRI with the previous neurologist). He wasn't worried about the abnormality, due to it just being an anatomical abnormality. He currently doesn't know if a small Meckel's Cave is related to TN or not, but my right Meckel's Cave is smaller on the side with my TN. At this point in my journey, we are now in April 2021, and I have a new neurologist. First 2 minutes in the room with him, and he cleared EVERYTHING up. Put me at complete ease. And y'all...he is a neurologist who genuinely listens to every detail. That is so rare. I brag about him all the time because he is my favorite person! He's awesome! I've been seeing him for one year, and I am currently in remission, and off all of my medications! I still get really bad head pressure/pain behind my ear/lower neck, but that is nothing compared to the TN pain.
I battled for a year and a half. I hated waking up in the mornings because I knew the pain would start. I couldn't carry on conversations with people for long because my face would just light up with pain or a burning sensation. I handled all this whole trying to teach Kindergarten, which was extremely difficult because I couldn't talk some days.
I wasn't myself, and there were people in my life at the time that didn't let me forget it. I picked myself up everyday, and fought TN by myself. I didn't have anybody in my corner, but me.
I am still scared that the pain will come back. It has scarred me because it was that bad. It literally felt like being electrocuted for 2 seconds in your face. Sometimes mine went to my eye, so I couldn't wear any make-up/touch my eye for about 1.5 years.
I am forever thankful for my new neurologist for getting me to this point. I'm sharing my story because TN is serious. TN needs more awareness. More people need to be educated on TN. TN needs a cure.
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Trigeminal Neuralgia Warrior
P.O. Box 1054
Island Heights, NJ 08732