Living with the Suicide Disease
The night that changed everything
August 10th, 2017 was an ordinary summer day. It was close to 11pm when I started getting ready for bed: brushing my teeth, washing my face, and massaging a battery of lotions and potions into my skin. I felt fine but tired. My hubby wasn’t home yet when I slipped between the cool bedsheets.
Within minutes after I tucked myself in, I was thunderstruck by a pain like no other on the left side of my face.
I could only feel myself think for a split second. Was something wrong with my teeth? Was this some new cruel iteration of my migraines?
But this pain went beyond any of that. I reached for my migraine medication anyway and took a pill, then curled up into fetal position and sobbed.
When my hubby came home and to bed, I turned to him and cried, “It hurts so much and I don’t know what to do.”
So I did the only thing I could: I called my parents. My father is a doctor and my mother is a nurse, so this was exactly one of those moments when I was grateful to live in the same building. My mother knew something was wrong the moment she saw my call and promised she’d be over in a few minutes. The doorbell rang not long after and I saw that my father was with her, both still in their pajamas, concern wrinkling their faces.
I told my father what was happening and he examined my mouth and face. Then he said to my mom, “She’s describing trigeminal neuralgia.”
I had no idea what that was.
Not much could be done. My father said I could try taking an over-the-counter painkiller for some relief, but it most likely wouldn’t work; I must see my doctor ASAP the next day.
Trigeminal neuralgia: the suicide disease
Trigeminal neuralgia (TN) is a rare chronic facial nerve pain condition that affects the trigeminal nerve. That’s the largest cranio-facial nerve network, and is responsible for facial sensations, as well as functions like chewing and biting.
TN is considered the world’s worst pain. It has even been dubbed the “suicide disease,” since historically, many people with TN have committed suicide because there’s no relief.
There are two types of TN: typical and atypical. Typical TN is characterized by those shocking pain attacks. Atypical not only has the pain shocks, but also a constant aching pain. There are medications to treat both types, but those medications are meant to treat other conditions, like epilepsy. Aside from neurosurgery with very varied results, there is no direct intervention for TN.
In either TN case, there is no cure.
No one knows why TN happens, but general consensus is that it’s caused by an artery compressing the trigeminal nerve, thereby wearing down its myelin coating and causing electrical, shocking pain. The problem though is that not everybody who has this type of compression develops TN.
I didn’t sleep at all that night. The pain was relentless. I felt sucker-punched over and over again: this pain had brought me to my knees in a way that my tyrannical migraines never had. In the morning, after a few phone calls, I was able to get an emergency appointment with my doctor.
When I described my symptoms to her, she looked concerned, but wondered if the pain would subside over the weekend. It was now Friday and the thought of suffering through these attacks terrified me. After her examination, during which she asked if I’d had any recent dental work and probed my face, I told her my father’s conclusion, that my symptoms point to TN. She agreed. She wrote a prescription for one of the frontline drugs meant to treat TN and suggested we see how I do over the weekend.
The next steps would be to consult my neurologist (who I see for my migraines) and have an MRI.
The pain persisted over the weekend: I felt both the constant, acute ache and frequent pain shock attacks that scored an eight or nine on a scale from one to 10.
And to add insult to injury, the side effects of the prescribed medication were making me very sick. When I finally saw my neurologist days later, she agreed with my father’s and doctor’s assessments and ordered an MRI, which confirmed that there is indeed an artery compressing my trigeminal nerve.
I was formally diagnosed with atypical TN.
From the onset of my TN to getting my MRI results, two weeks had gone by. I knew I was one of the lucky ones: my research had shown me that there are people who’ve waited actual decades — signing up for ineffective, strong medications and unnecessary procedures in the mean time — before they were properly diagnosed. This is largely because TN is a rare condition and, though doctors and dentists may have come across TN in their textbooks, most have no firsthand experience with it.
Thanks to my father and my doctors, I didn’t have to wait too long to be diagnosed and to start figuring out pain management.
As you can imagine, my life changed after my diagnosis. Those first few months were an endless series of doctors’ appointments, testing out medications, blood tests and even an ER visit. The pain depleted my energy as did the medication.
I learned about common TN triggers and which ones affected me most: brushing my teeth, chewing, talking, smiling, laughing and the wind. As much as possible, I’ve made modifications to avoid my triggers, but it hasn’t been easy.
I mean, who wants to stop laughing?
This Saturday will mark my two-year TN anniversary. It may be morbid to honor that day, but I feel it’s important. There have been many new challenges I’ve faced since being diagnosed with TN, but I am grateful for some of the lessons it has taught me.
Lessons like being more discerning about how I spend my finite time and energy. Focusing on things that truly matter to me. Prioritizing wellness and self-care. Developing fulfilling spiritual practices. Refining my work so that it supports all of me (and not the other way around). Surrounding myself with positivity. Spending time with the people I love and whom I know love me.
I’m still learning to accept my “new normal” and understand the extent of my limitations. I’m learning how to communicate what I need to take care of myself and to not feel guilty when I do put myself first.
I now know that my experience so far is common amongst anyone of us who lives with chronic illness or pain, physical or psychological.
Though we who live with chronic conditions are the only ones who can truly know how they affect us, we don’t have to do it all alone. I have found so much comfort, encouragement and empathy in the stories of others like me and from the support system I’ve nurtured around me.
This is about you
And that’s why this blog exists: I want to educate you so that if you or someone you know is going through what I’ve gone through, you can get the right help and have an idea of what you’re facing.
I want to raise awareness so that a cure can be found.
I want you to take such good care of yourself and know that you’re still capable of realizing your dreams no matter what your limitations are.
And I want you to know that you’re not alone. Wherever you are and whatever you’re experiencing, I’m always rooting for you.