POINT OF VIEW

Living with the 'suicide disease'

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I had never felt anything more painful than I did that day, crumpled into a fetal position on the floor of a cinema in Florida.

It was just supposed to be a fun evening at the movies. I had my Dr Pepper in one hand, a huge soft pretzel in the other, and the opening credits had just started to roll.

But then it happened. Out of nowhere, I felt my lower jaw explode as if all the teeth on the left side of my face were yanked at once. 

The entire theater heard my cry, and suddenly no one cared about the film on the screen, but instead the drama taking place right in my seat.

No one knew what to do, especially me. The entire episode lasted just several minutes, but to me it might as well have been hours. 

Over the next several weeks, the pain would return just as suddenly — sometimes in my jaw, other times on the left part of my face next to my nose. My doctor was convinced it was polyps. 

My family recommended every home remedy they could think of. Over-the-counter painkillers did nothing.

But then, just as quickly as this series of attacks surfaced, the pain disappeared. But not forever.

It would repeat every five or six years after that, each time progressively worse than the previous outing. But it would only last a few months, and doctors would be puzzled, eventually concluding that I had some sort of recurring sinus infection that just hit me in a way that was super painful.

The last time I experienced the pain was a year ago while I was still living in Grenada. The initial attacks were mild, to the point when I visited the campus hospital at St. George’s University, I asked doctors to treat it as a sinus infection. 

Every other night, however, I would wake up, screaming in pain so loud, my landlord — who lived next door to our Caribbean island apartment — would rush over to take me to the hospital.

It was in Grenada a doctor finally realized that I wasn’t suffering from some abnormal sinus infection. Instead, the pain was coming from the trigeminal nerve — a nerve we all have on both sides of our face, stretching from the top of our ear and branching out to our eyes, our noses and our lower jaws.

The condition, the doctor concluded, was called tic douloureux, or as it’s more commonly called — trigeminal neuralgia. But there’s another name for this condition that I don’t like to think about, but still there nonetheless — “the suicide disease.”

It is by far one of the most painful conditions any person could ever experience. In fact, when my pain strikes, doctors are forced to give me so much morphine, they have to put me on oxygen, with the hopes the drugs will simply knock me out until the attack runs its course.

Trigeminal neuralgia affects just 1 in 8,300 people, according to the National Institute of Neurological Disorders and Stroke, which is about as rare as slipping and dying in your bathtub. 

Because it’s so rare, many people — including researchers — aren’t familiar with it. So treatment is limited, and of course, there’s no cure.

Although trigeminal neuralgia itself isn’t fatal, the extreme, never-ending pain could drive victims toward suicide. And it’s not just the pain that might create feelings of anguish — it’s also the effect trigeminal neuralgia has on people around us — our loved ones, our friends, even our doctors.

When I had an attack in Grenada, I would make my way to the campus hospital, and the moment a nurse saw me walk through the door, they would get my regular treatment room ready. 

They knew me by name, and took care of me as quickly as they could, with nothing but respect and empathy.

In the United States, however, pain is treated quite differently. Because opiate abuse is so rampant, if you come into an emergency room asking for the most powerful pain medication the hospital has, the first reaction is to treat you like an addict — no matter how loud your cries of pain are.

I certainly understand that, but suffering through a painful attack is isolating enough. It can only be worse if the one person in any position to help you thinks you shouldn’t be in a hospital bed, but instead at rehab.

I am lucky. I get remission periods lasting several years. But others who face trigeminal neuralgia don’t get that luxury. For many, there is no respite. Spouses, family members and friends eventually become frustrated, not because of the pain we endure, but how helpless they feel in the face of that suffering.

Last Saturday was Trigeminal Neuralgia Awareness day. You might not know anyone who has it, and this might be the first time you’ve even heard of it. But take the time to learn about it, especially if you’re an emergency room doctor. 

It won’t be enough to push for a cure, but it certainly would go a long way to help ease the suffering of those forced to face trigeminal neuralgia.

The author is editor of The Riverdale Press.

Michael Hinman

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Jennifer Scarlott

This is one of the most harrowing stories I've read in a long time. Thank you, Michael Hinman, for your courage in sharing your story. I had never heard of Trigeminal Neuralgia. I hope this piece does aid in spreading awareness of the need for immediate, compassionate response by emergency room doctors and other medical personnel. May a cure be around the corner.

Friday, October 13