Nisha Kumar Kulkarni
Aug 26 · 7 min read
Photo by Luis Galvez on Unsplash

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. As I did every night, I brushed my teeth, washed my face, and massaged lotions and potions into my skin. I felt tired but otherwise fine. My hubby wasn’t yet home when I slipped between the cool bedsheets.

Within minutes of tucking 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 — high-dose, prescription Naproxen — and took one, praying this pain would dissolve, then curled up into fetal position and sobbed.

When my hubby finally came 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 late call and promised she’d be over in a few minutes. The doorbell rang not long after and I saw that she’d woken my father: there they stood, both in their pajamas, concern wrinkling their foreheads.

I told my father what was happening and he gently 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 take an extra-strength Tylenol to see if in conjunction with the Naproxen I found some relief. Maybe it would work; most likely not.

In any case, I had to see my doctor ASAP.

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 it’s responsible for facial sensations, as well as motor functions like chewing and biting.

TN is considered the world’s worst pain. Approximately 150,000 people are diagnosed with it every year, most of whom are women. It has been dubbed the “suicide disease” since its pain intensity provokes a high level of suicidal ideation and patients have killed themselves for relief.

There are two types of TN: typical and atypical. Typical TN is characterized by shocking pain attacks. Atypical not only has the pain attacks, but also a constant, acute 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 the electrical, shocking pain. The problem though is that not everybody who has this type of compression develops TN.

CONFIRMED DIAGNOSIS

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 without relief 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 carbamazepine, one of the stronger, frontline drugs to treat TN, and suggested we see how I do over the weekend.

The next steps would be to consult my neurologist and have an MRI.

The pain persisted over the weekend: I felt both a 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 carbamazepine 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.

TWO WEEKS

From the onset of my TN to getting my MRI results, two weeks went by. I knew I was one of the lucky ones: my research showed 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 notoriously difficult to diagnose: though doctors and dentists may have seen passing references to 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 a pain management regimen.

As you can imagine, my life radically changed after my diagnosis. Those first few months were an endless series of doctors’ appointments, testing out medications, dealing with exhausting side effects, frequent 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 (which I now believe was the inciting event that triggered my first TN attack that August night), chewing, talking, smiling, laughing, touching my face, the wind and extreme cold. As much as possible, I’ve modified my lifestyle to avoid my triggers, but it hasn’t been easy.

I mean, who wants to stop laughing?

TWO YEARS IN

Upon writing this, I’m just days away from my two-year TN anniversary. It may be morbid to honor that day, but I feel it’s important to remember the day when a distinct before and after marks my life.

There’s no sugar-coating it: I struggle with this pain. There’s a reason TN is considered “chronic.” The medication I’m currently on (gabapentin) helps, but not completely: it offers some relief from the constant pain, but has zero effect on the shocking pain attacks. In the first few months of trying it, my dosage was aggressively increased. Now, a year and a half with gabapentin, I’ve had to incrementally increase my dosage approximately every six months.

Though gabapentin is a relatively mild medication in terms of its side effects, I still grapple with its common ones (dizziness and fatigue), as well as other, less common and more anecdotal ones (temporary short-term memory loss and slight weight fluctuations). I’m nowhere near ready to think about neurosurgery, especially given its uncertain results and recovery.

Unsurprisingly, this type of pain does affect my psychology. I have yo-yoed between denial, anger, resentment, uncertainty and deep sadness. I still do.

There have been many new challenges living with TN, but I am grateful for the valuable 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). Letting go. Surrounding myself with positivity. Spending time with the people I love and whom I know love me. Being grateful and appreciative.

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.

Through my reading, social media stalking and conversations, I now know that my experience so far is common amongst any one of us who lives with chronic illness or pain, physical or psychological.

Though we who live with chronic conditions and other health limitations 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 I wrote this piece: I want to tell my story so that if you or someone you know is going through something similar to my experience, you can get the right help ASAP.

I want to raise awareness so that a cure for TN can be found.

I want to raise awareness so that we can all be kinder and more compassionate towards one another because we all fight invisible battles.

I want to advocate for anyone who lives with an invisible illness.

I want you to know that you’re still capable of living a full life 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.

Note: This piece was first published on my blog on August 7th, 2019.

Nisha Kumar Kulkarni

Written by

writer | creative coach | creator of real talk & radical encouragement

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