Written by Anirudh Koneru
Published on 8/20/2020
Everyone, at some point, has felt pain of some sort. Whether it was the sting of concrete scraping your knee, the shooting pain of twisting your ankle, or maybe even something as severe as being in a car accident, all of us have known pain at some point and are quite familiar with it.
But imagine getting out of bed in the morning. Groggily, you walk to the bathroom sink and wet your toothbrush. After squeezing out some toothpaste, you lift the brush to your mouth. But the moment the bristles touch your teeth, excruciating pain shoots through your face like an electric shock, making it difficult to even breathe. You don’t know when it will end, or how long you can bear the pain, but it doesn't matter anyways; time seems to lose all meaning as you stand there. Finally, after what seems like eternity, the pain subsides slowly, leaving you shaking in its wake. All before you’ve even had the chance to sit down for some toast.
While this might sound like a nightmare to most people, it is the terrifying reality of Mackenzie Lea’s life. Lea, a patient of trigeminal neuralgia (click here for more information on Trigeminal Neuralgia), has been living with this struggle for seven long years. Lea’s experience with trigeminal neuralgia is even more unique as it took place during her teenage and young adult years. The disease itself is predominantly seen in elderly people, but if you are affected by trigeminal neuralgia or some other rare disease in your younger years, know that you are not alone. Reach out to others on platforms such as Facebook (we have groups listed at the end of the article) and join support groups; there is a community of support out there!
Below, you’ll find Mackenzie Lea’s truly inspirational story on her disease and her journey with trigeminal neuralgia. PLEASE NOTE: usually we will go through the responses and take out important quotes, constructing our own take on the story, but after reading Mackenzie’s responses we felt as though her words speak volumes for themselves. Though the pain and misery that she has endured is great, Lea continues to inspire and spread hope by sharing her struggles with the world.
How has this disease impacted you and your family's daily lives?
I guess I’ll start with the impact on me! Trigeminal Neuralgia affects everything I do. The most basic of tasks, such as eating, speaking, or brushing my teeth can cause immense pain. After so many years of doing things one way, it’s hard to teach yourself to do rudimentary tasks differently.
TN has prevented me from completing school and working. As someone who always had big dreams and aspirations, this has affected my mental health greatly. Every single one of my relationships changed or ended; some family members stopped making the effort and lifetime friends simply walked away. As for my amazing friends and family that did stay, they obviously had to adopt somewhat of a caretaking role. I was able to move out, but I live very close to my parents in case of emergencies. They always have to be on standby and there’s always some level of fear that they’ll have to drop everything and come running. We’re lucky that their jobs are flexible.
Financially, chronic illness can be devastating. My neurologist and surgeon are 2 hours away, so extra money for gas, food, and hotel accommodations are always in the back of your mind. There were times when my insurance didn’t cover my medications and my parents were paying almost $1000 a month out of pocket.
My partner, with whom I live with, had to learn about my medications and care. There are days when, not only does he have to care for me, but all of the household responsibilities fall on him. He constantly has to live with the fear that a simple kiss on the lips will hurt me. When it comes to family events, getting away, or simply hanging out with my friends, they always have to factor in my illness. I have to have enough time to rest before and after, I can’t be outside in the wind, it can’t be too loud, there can’t be too many people, I have to be home at a certain time to take my meds, etc. So in general, my illness just affects everything and everyone.
Tell me about your journey to getting diagnosed (or current journey). What were some challenges that you and your family faced?
My pain started in July of 2013. My family doctor was away at the time, so I kept having to see random doctors. Unfortunately, there was not a lot of communication between these doctors. They tried migraine medication, allergy medication, steroids, antibiotics, and opioids to no avail. When my doctor got back, he ordered a head CT and put me on my first anticonvulsant. When the CT came back clear, I was referred to get an MRI, which also came back clear. By this point, my family doctor knew that I needed to see a specialist, but unfortunately, there are no paediatric neurologists where I live. He told my mom that if I were his kid, he would drive me to the emergency room two hours away (in a big city - Calgary) next time I had a flare and ask to see a neurologist there. So that’s what we did.
I ended up being referred to a neurologist in Calgary who decided to admit me for further testing. I had another MRI done, a lumbar puncture, and a medication infusion to rule out a certain illness. Everything came back negative and although we had ruled out a couple of things, we were no closer to finding out what I actually had. I was having adverse/allergic reactions to almost all of the medications. I felt hopeless and a bit insane. It didn’t help that there was the odd doctor/nurse that implied that my pain was “in my head” or thought that I was drug-seeking.
That’s when I was referred to the Complex Pain Clinic at the Alberta Children’s Hospital. I met with them in April of 2014 and in less than 10 minutes, they had a diagnosis: Trigeminal Neuralgia. The anesthesiologist that led the team wanted to perform one last test to be sure. He did a lidocaine infusion and for the first time in 9 months, I didn’t have pain.
What do you think are the biggest challenges faced by you and your family?
Some of the biggest challenges for us would definitely be the hospital admissions and surgeries.
My first neurosurgery really didn’t go well. We were hopeful at first because they had found the problem and did their best to fix it, but I ended up with a pretty bad CSF leak. I was in the ICU for a week completely unable to move. My family members stayed in shifts to help feed me and bathe me.
The worst part was that the pain came back 3 months later. After the return of the pain, my mental health plummeted and I became suicidal. I had convinced myself that I was a burden and that my death would ultimately make my family’s lives easier and better. I was admitted to the hospital for 2 weeks on the psychiatric floor - I will get into this more on the next question. After my psych stay, I was put in a 6 week pain rehabilitation program. We had to uproot to Calgary, which was physically, mentally, emotionally, and financially difficult. Not being able to see friends and family and being stuck confronting your pain for 6 straight weeks was incredibly difficult. My pain progressed pretty quickly over the next 4 years and we tried everything with only limited successes here and there.
Accepting that I could no longer work or go to school was a challenge. Accepting that I would have this disease for the rest of my life and that I needed to go on permanent disability was a challenge. Accepting that the only medications that help or that I’m not allergic to have bad side effects was a challenge. Accepting that I needed a port for weekly infusions was a challenge.
Then came Serotonin Syndrome [essentially when your body has too much of this chemical called serotonin, causing a multitude of symptoms including confusion, headache, nausea, and tremors; potentially life threating] to name a few; for more information, click here) - the sickest I’ve ever felt and been. I had to cold-turkey 5 different medications and be admitted to the hospital, so that I could withdraw in a safe environment. My family had to sit there and watch me suffer for 8 days straight, unable to do anything.
4 months later I had my second neurosurgery. This surgery went much better and has given me some level of relief, but it was an excruciatingly painful recovery. My family has had to sit and watch me scream in pain for 7 years, which has undoubtedly caused them a lot of grief and pain. I think for all of us, though, knowing how uncertain the future is and will always be is one of the biggest challenges.
What were/are some difficulties you had with the health care system?
The first thing that comes to mind is simply just having the healthcare professionals believe me. I have a relatively invisible illness that wasn't seen on diagnostic imaging for 6 years, so they really have to take you at your word sometimes. Not everyone has. Like I said before, I've had doctors and nurses tell me that "it's all in my head". I've had doctors and nurses think that I'm drug-seeking.
During my psychiatric stay, they really neglected to account for my physical health problems. My pain was not being treated seriously/properly and the nurses were quite rude when I would mention it. My family and I had to basically beg to see a neurologist while I was there - I had been there a week and a half before they addressed my physical symptoms.
When I met my neurosurgeon for the first time, I had asked what the chances of a CSF leak were. I knew someone that got a CSF leak after their surgery and I wanted more clarification on the risk. The surgeon said, "there's a better chance that the building would come down in an earthquake during your surgery." I got a CSF leak and the surgeon transferred my care to a different surgeon.
Poor communication, in general, has been a theme throughout my health care system experiences; Neurologists didn't communicate my treatment plan to my GP, tests and results weren't sent to the right places, my pharmacist would have to phone the doctors for med clarification, and we would have to make countless phone calls just to figure out what was going on. It took 3+ years to find the right team and there's still difficulties every now and then.
Do you think that greater awareness about this disease would have improved you and your family's experience in any way? If so, how big of an impact do you think more awareness would have?
Absolutely! More awareness could have helped me get a diagnosis more quickly and therefore, got me treatment more quickly. More awareness could have prevented some of the negative experiences I’ve had navigating the health system and also the negative experiences I’ve had amongst friends and family. More awareness could help educate others and decrease the stigma around invisible illnesses, which in turn could help with accessibility and accommodation. Perhaps the biggest one for me - awareness could lead to more research funding and a cure. All of these things are life changing in my opinion.
Thank you so much to Mackenzie Lea for taking the time to share her story with us! We truly value the effort you put into your responses and greatly admire your strength throughout this seven year battle with trigeminal neuralgia.
Would you like to learn more about Lea and her story, and support her through this lifelong struggle? Then check out her Instagram page @macdaddytheladyface and her Twitter @MacdaddyFace, as well as her blog, Living With Teal, at www.livingwithteal.com.
We believe these stories are important for others to hear, not only for awareness of the disease itself, but also for the support it provides to every patient. Thank you so much to all the people who share their stories with us! We truly appreciate your strength and not only are you contributing to our organization, but you are also furthering the awareness of rare diseases as a whole.
If you or a loved one is struggling with trigeminal neuralgia, please reach out to a community online! Some facebook groups you may want to check out include:
For more information on and organizations for trigeminal neuralgia, click HERE.
Know someone who wants to share their story? Fill out the short form above our directly contact us via any of our socials, our email, or our contact us page.
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Citations
Cohen, J., & NORD. (2016, May 18). Trigeminal Neuralgia. Retrieved August 17, 2020, from https://rarediseases.org/rare-diseases/trigeminal-neuralgia/
Lea, M. (2020, August 14). Virtual Questionnaire through Google Forms.
Mayo Clinic Staff. (2017, July 26). Trigeminal neuralgia. Retrieved August 17, 2020, from https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
Trigeminal Neuralgia Fact Sheet. (2020, March 17). Retrieved August 18, 2020, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Trigeminal-Neuralgia-Fact-Sheet
Trigeminal neuralgia. (2016, February 17). Retrieved August 17, 2020, from https://rarediseases.info.nih.gov/diseases/7805/trigeminal-neuralgia