My Chronic Migraines Turned Out to Be "Suicide Disease"

I sadly know from experience that it is aptly named.
Publish date:
March 28, 2016
migraines, headaches, Suicide Disease, Trigeminal Neuralgia

About three and a half years ago, I started having what I thought was a migraine — a skull crushing, ice pick to the brain migraine. It went on for days which turned into weeks and soon my concern began to mount. I have a long history of migraines which began in high school and were usually provoked by stress, so I attributed it to my "burn the candle at both ends" kind of lifestyle.

By day I work as an Executive Assistant in academia and by night I'm an opera singer. I've studied music for most of my life and received my BA and MM in Vocal Music. Anyone that is a classical musician knows the kind of stress level that comes with acquiring those degrees, and living as a musician is even tougher. From the 14-hour days to the constant auditioning and constant rejection, it is not a life for the faint of heart.

I attributed my unyielding migraine to my stress level and attempted to deal with it with painkillers, muscle relaxers, and sleep. But nothing seemed to do the job and weeks of pain quickly turned into months of chronic and, at times, debilitating pain. Doctor appointment after doctor appointment yielded several diagnoses including chronic migraines, cluster headaches and (my favorite) ice pick headaches. These appointments also led to rounds of medications that did very little, if anything, to help the pain.

I became physically and emotionally exhausted. What’s more, I was unable to sing. I was forced put my life and my passion on hold.

Finally, I was referred to a neurologist to whom I am forever grateful. He immediately knew that I was not dealing with cluster headaches or even chronic migraines. This was something more nefarious, but we still had to figure out what exactly that meant. My patience and fortitude were waning and almost every evening I was either emailing his office or calling to plead with him to fit me in as I could no longer deal with the physical pain and mental exhaustion.

Finally, one morning during a last minute visit to his office, he said the words that would forever change my life. He said, "I think you have Trigeminal Neuralgia."

I was hopeful and confused. I also had a million questions. He changed my medications and within two weeks, my pain was gone. Unless you have dealt with chronic pain, you cannot know the feeling of fairy dust and unicorn magic that comes when that pain is gone. It is better than sex. It is better than drugs. It is better than being surrounded by a thousand Ryan Goslings who each happen to have a new kitten for you.

If you are unfamiliar with Trigeminal Neuralgia, here's a basic description of this disease, which I can only assume was sent from the depths of hell:

Trigeminal neuralgia, also known as tic douloureux, sometimes is described as the most excruciating pain known to humanity. The pain typically involves the lower face and jaw, although sometimes it affects the area around the nose and above the eye. This intense, stabbing, electric shock-like pain is caused by irritation of the trigeminal nerve, which sends branches to the forehead, cheek and lower jaw. It usually is limited to one side of the face.

I happen to have what is referred to as “Atypical Trigeminal Neuralgia.”

It’s a fun brand of the disease that is marked by non-stop, 24-hour pain that can go from mildly annoying to HOLY GOD SOMEONE TAKE MY SKULL OUT OF THIS VICE interspersed with the severe “electric shock” type pain of Typical TN. It's a ton of fun if your definition of fun is having someone stab you in eye while you listen to a Ted Cruz rally on repeat. Maybe it is, I don’t know your life.

This disease is also known as the "Suicide Disease" because many of those afflicted have either committed, attempted, or thought of suicide. I sadly know from experience that it is aptly named. Also, it's more prevalent in women than it is men. Why? No one seems to know exactly. Unfortunately there are still a lot of mysteries yet to be solved regarding this disease but there are a lot of people working on solving them. Until then, I suffer through the months of pain mixed with months of remission and try to help the cause of awareness.

For all of my fellow TN warriors out there, stay hopeful and take care of yourselves. You’re not suffering alone and, please hear this, YOU ARE NOT CRAZY. If anyone tells you that or makes you feel that way, you do what is necessary, and by that I mean choke a bitch.