Young Patient Profile
Name: Lilia Millner
How old are you? 27 years young!
Where do you live? I am currently in Spartanburg, South Carolina, but begin classes in Raleigh, North Carolina starting in May!
When did you first experience trigeminal neuralgia? I was 19 years old, sitting on my couch, minding my own business when I collapsed in pain. I could never describe how excruciating that first flare was, and how scared it made me feel.
What is your diagnosis? I was diagnosed with trigeminal neuralgia on my right side.
What do you do in your free time? What’s that? Currently, I do not have a lot of it! I am about to begin a post-baccalaureate program, after that I will be off to medical school. I have three beautiful children, a six year old son, three year old daughter, and a two year old son.
My youngest, James, was born with multicystic dysplastic kidney syndrome and a UPJ obstruction. My past two years have involved juggling the last part of my bachelor’s degree and spending time in the NICU learning a vast amount about nephrology, neonatology and many other exciting specialties. Being a patient and being a caregiver has put me in a position where I feel I could be useful as a physician. Experiencing all three sides will be a unique view that I hope to bring to the field of pediatric nephrology. When I do get time to myself, I enjoy puzzles, watching hockey, and attending unique medical conferences.
What has TN taught you? Honestly, so much. It has taught me how to be kinder. Before my TN diagnosis, I was a very healthy person. Even with TN, I looked like a regularly healthy young lady. So, having TN taught me not to judge people on their exterior. You can never know what pain they are feeling. It has taught me to be more patient. I know there are times when I was in pain that I required a lot of help. That kindness that was shown to me could never be repaid, but I will try every day for the rest of my life. It has made me realize my strength (it even made labor feel like a piece of cake!). It has made me realize that our healthcare system needs a lot of work. I faced some medical professionals that dismissed me due to my age.
What non-surgical procedures have you tried?I spent a little over a year and a half cycling through Gabapentin, Oxcarbazepine, Tegretol, and Lyrica. I found myself struggling with what I call “zombie brain” and decided I couldn’t live the next 60 years that way.
Have you had any surgical procedures? So, I decided to go forward with my microvascular decompression surgery! It changed my life. I decided to do the procedure after my oldest was born. He turned one year old and I realized I wanted to be able to do more. I wanted to be able to play with him without the fear. I had my surgery August 2015 and have had minimal pain that only occurs on very rare occasions. This is a massive difference from the hundreds of daily zaps I was experiencing beforehand.
How has your facial pain changed you? I have come to realize how much I took things for granted. Brushing my teeth was a regular carefree routine. Kissing my husband was never anything to flinch about. Driving around with the windows down was a favorite pastime. Once my flare ups began, every little thing I did, I expected to feel pain afterwards. Kiss my husband, face the consequences for the next four hours. Brush my teeth, forget about it. What’s make up? Can I drink it through a straw? No, I can’t come to your birthday party. These things change in a blink of an eye. I have learned to appreciate that fact, and I try to live my life each day to the fullest of my ability.
What advice do you have for other young patients in college/higher education? Just do it! Yes, you will have to work a little harder than some of your classmates. One thing that I found that helped was to get ahead of my work early on. You may not know if the pain will rear its head, but you can prepare yourself by getting ahead in your work. Also, be honest with your professors. I found that explaining my situation was always welcomed. Don’t use it as an excuse, but instead use it as a drive. Let it fuel you, even when it is draining.
What advice would you give to other mothers, or want to be mothers who have TN?
Surround yourself with a compassionate and supportive group. Family, friends, strangers on support groups who will become your closest friends. Find people who understand and talk to them. It is okay to break down and cry (this is also true for any mother, pain or not)! Be patient with yourself, it may not all be rainbows and sunshine, but do your best and your child will know. I ended up having four months, starting the day I delivered, where I experienced no facial pain. It was magical. It also gave me the push I needed to try other treatment options. I know I should always fight for myself, but it really helped having someone else to fight for. Your child will love you and you will be a wonderful mother.