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Lilia’s Fight Like a Girl Story (Trigeminal Neuralgia)

lilia's Story Trigeminal NeuralgiaI am proud to say that I have Fought Like A Girl. In July 2013, I was a 20 years young, enjoying life and being married to my wonderful husband. We had just celebrated our first anniversary, and I had a special gift for him. I surprised him with our wonderful gift, our son.

One month later, on August 10, 2013, I was sitting on the couch, enjoying a jar of pickles, when I got hit out of left field with searing, shocking bolts of pain on the right side of my face. I was screaming, crying. I thought perhaps I was dying. I crawled to the neighbors’ house. They dialed my husband’s cell, since I couldn’t open my eyes or mouth. He rushed home and took me to the ER.

After a six hour wait at the ER, the episode had passed, and they told me, “Oh, it was probably just migraines,” and sent me on my way. This reoccurred several times. At 20 weeks, I had had enough of no answers. I was finally allowed to see the labor and delivery doctors, and I begged for answers. He took one look at me during a flare up and said, “Ma’am, I believe you have trigeminal neuralgia.” Since I was pregnant, we tried gabapentin to no avail.

After delivering a healthy, perfect baby boy at 43 weeks, I went into a six month remission. It was the most wonderful six months of my life, enjoying holding my newborn with no pain. I thought I had won the lottery. Then I got in a car wreck, T-boned by a lady texting. I got whiplash, a crushed chest, seat belt burn, and the next morning, bam. The TN pain returned.

For the next few months, we would try the max gabapentin dosage of 3600mg, and I ended up having hallucinations. I tried Lyrica, Trileptal, and Tegretol for the next few months. Finally, I begged for surgical options. I was tired of not being able to hold my son and tired of being on the edge of quitting. The inability to leave my home without an attack, the inability to turn on the fan or A/C. The inability to brush my hair, wear make-up, etc. without a flare up.

My neurologist agreed to bring me in for microvascular decompression surgery. I was so elated. I showed up at the Medical University of South Carolina, so relaxed, so prepared. I knew I was in good hands. I woke up and knew my surgery had been successful. I had no facial pain. I cried. I laughed. It was the second greatest day of my life. Not only was my surgery successful, but my healing process has been incredibly positive. I was released after only 24 hours, while most people need three days. I walked after two hours and ate after four. I had only eight stitches instead of the typical 13-15. I really have won the lottery.

My TN can come back at anytime, so it is up to me to take advantage of every pain-free day until then. I’ll be returning to school in January to finish up. I’m going premed to hopefully specialize in neurology to help other warriors.

Lilia
Georgia
Submitted 08/27/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

4 comments

  1. Brigitte Estelle Gaudreault

    Bonjour Lilia,
    WOW!! You are inspiring and what a great attitude you have ! As I read your story I was sadden and quickly found myself smiling, so uplifting, so encouraging, so wonderful to read how thru thick and thin that you were determined to be healthier so that you could be holding your son! Keep writing you have the ability to create a smile thru your writing! Wishing you well and lots of cuddle times with your lttle family!
    Wonderful ! Great picture of your pretty smile and handsome little boy !

    With love from Canada,
    Brigitte Estelle☆☆

    I wrote a story about my sister Diane Gaudreault, in the Non Hodgkins Lymphoma disease section under the title Brigitte Estelle fights like a girl for her sister. I would like it if you could find time to inspre her with your strength!

    • Absolutely Brigitte! I will go find your story here shortly! I would be more then happy to share my words with another wonderful person! Thank you for your kind words, you are truly a beautiful spirit! Much love, Lilia!

  2. Brigitte Estelle Gaudreault

    Ahhh! Vous êtes gentil, si prévenant pour les autres!
    ♥♥
    Avec amour du Canada, Brigitte Estelle xxx
    ( You are a kind, thoughtful for others )

    The positive energy around you is contagious, every” fighting person ” will find themselves drawing it in.♥

    LILIA KEEP FIGHTING LIKE A GIRL!
    Brigitte Estelle xxx

  3. I am now 44, and I was diagnosed with TN in March of 2014, just 2 weeks before my Wedding day..Similar story.. just sitting eating my dinner(a very tender Steak/Baked potato) when the pain came on in my left face, my jaw, ear teeth.. and it came ON, and ON, and ON..I dropped my fork in the floor and my husband asked me what was wrong but the pain was getting so intense I couldn’t speak.. I dropped my plate in my chair and rand upstairs, becoming blinded by the intensity of it.. I felt my heart beating out of my chest and I wanted to scream but couldn’t.. I felt as if I was falling down a black hole..I grabbed on to the bathroom sink and ran hot water to swish my mouth out, thinking for a second that maybe something was lodged in my dental work(and OH- the YEARS of dental work I had had from all that “phantom pain”..11 previous yrs of it, to be exact) I left the water running as I crouched down in the floor, holding the sink, scalding water running, and my husband in a panic asking me over and over what was wrong.. But i had no answer- I literally could not speak the pain was so bad, I felt like I was being stabbed in the ear, and that my teeth were about to explode..my tongue, the roof of my mouth, like razor blades, cutting burning and searing. Everything all at once.. for about 5 minutes, until the intensity of it started to subside just enough to allow me to breathe..I felt like my eyeball was going to pop out of the socket, my cheekbone hurt so bad. I didn’t know if I was having a stroke, or something else.. I just DID NOT KNOW. Later, seeing the doctor, she immediately said, “Tic Doloroux”. Of course I was like, “Come again?” And she explained to me what TN was..In the time since that first horrific attack, I have never known one single day without some kind of pain, 24/7. and, 6 most later, it also began to occur to a lesser degree on my RIGHT side as well. I have TN2, and I am Bi-lateral. I am on my second med for this, and have noted that the pain has progressed a bit over time, causing me to have my doctor switch my med, hoping perhaps this next med will work better..so far, eh. The last med kept my stomach so upset.. the new med, its has gotten much better. But I’m thinking Im gonna have to increase the dose for better symptom control. I have no clue what the future holds for me.. surgery? maybe, probably. I take things day to day now..I tell this story here in hopes that others will tell theirs as well, like Lilia shared with us. We NEED to be talking about this. We NEED more research, better treatments, and a cure. Keep fighting! We have no other choice…

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