- Posted September 9, 2013 by
Type II Trigeminal Neuralgia - Breaking the silence and making the invisible visible.
That day marked the rest of his life with Trigeminal Neuralgia. Little did he know at the time, but that awful headache and the searing pain would never leave the right side of his head, he said. “There were drips of water, annoying obnoxious ones, hitting the right side of my face in a dry room. There were shocks and pangs in my right cheek. It felt as if a hot coal was lying on my right eye socket,” he wrote. Since then, fluorescent light, wind, noise and even a random touch are among the triggers that can intensify his never-ending headache, he said.
After about fourth months of persistent pain, a neurologist diagnosed him with Type 2 Trigeminal Neuralgia. This “atypical” form of the disorder is marked by constant aching, burning and pain, according to the National Institute of Neurological Disorders and Stroke.
“I have now forgotten what a pain free day feels like, and that changes you,” he said. “You lose parts of yourself. You lose friends and family that can't deal with the fact that they cannot give you a hug say a prayer and make you better. You lose doctors and caretakers that get baffled by this disease and simply cannot figure out what to prescribe to fix you. Mostly, you survive as Trigeminal Neuralgia cannot kill you, but you stop living.”
- zdan, CNN iReport producer
September 7, 2011 4:30PM, that is a date and time that will forever be locked into my memory banks.
I was a young Master teacher at a public High School in rural West Virginia, USA. There had been an after-school faculty meeting that yielded nothing particularly exciting or interesting. As I was leaving my classroom, the sound of my key in the lock to my classroom door sounded "odd and painful". I shook it off, walked down the hall, and stepped out into the afternoon sun. Sun that for the first time in my life was too bright, painful, and had a piercing ring to it in my right ear. I managed to get to my car, somehow commute 45 minutes home, and crawl into bed with what I assumed was my first migraine ever. Nothing would ever be the same after that afternoon.
Sleep did not aid my pained skull. Strangely, the headache was only on one side and constant. Waxing and waning, but always there. It persisted as I taught World History and Civics to over 100 students a day for a couple of weeks before even going to the ER or my General Physician. My thoughts kept returning to, "This has to let up at some point, right?" One afternoon, no longer being able to stand the constant pain, I went to the ER after school. I was processed, told it was likely a migraine and that they had an IV cocktail that would fix me right up. Alone, I sat in that room for hours while the drugs were coursing through me...doing nothing to aid my pain or end it. When the ER docs realized it was doing nothing, they scheduled an MRI, told me to get my General Physician to refer me to a Neurologist, and sent me home in as much pain as when I arrived.
I assumed I had a tumor or an aneurism, what else could cause such pain? The MRI ended up showing nothing but a healthy, 34-year-old brain. The Neurologist said it was likely a cluster migraine and began throwing prescriptions at it that were expensive, yet did nothing. At a visit in late October of that same year, he decided to give me Lidocaine Injections down the right side of my skull to "numb me to pain" for a couple of weeks until he could decide upon a new course of action. He also gave me a prescription for a steroid pack and sent me to the drugstore. Told me to call him when I had finished the steroids and we'd go from there. I drove 5 miles from the Neurologist's office to pick up my prescription. Whilst waiting in line at the pharmacy, a thing that can only be described as an inferno engulfed the right hemisphere of my face and head. It was surreal and mind-numbing. My wife made me check my blood pressure at the little machine in the pharmacy to see if we needed to rush back to the hospital where I had received the injections. The pain was maddening, it was all I could do to keep from screaming aloud in the pharmacy line, but my blood pressure was completely normal. A constant headache in half of my head and now this...I must assuredly either be dying or losing my mind.
My wife got the prescription, drove me home, and called the Neurologist. I called in for a sub for my classroom the next day and went back to the Neurologist. The strangest things were happening. There were drips of water...annoying obnoxious ones...hitting the right side of my face in a dry room. There were shocks and pangs in my right cheek. It felt as if a hot coal was lying on my right eye socket. The Neurologist told me that I lived in too rural of an area to have anything rare going on and kept on with the treatments for migraines. I had spoken to colleagues with Clusters and Migraines though. Clearly what I was experiencing was not either. That doctor would hear none of that and thus was no longer my doctor.
I had my General Physician, who was baffled by my symptoms, refer me to the local University Hospital's Headache Clinic. After a month long leave of absence from school, ordered by my General Physician to rest and try various more intense migraine medicines and anti-seizure drugs, I finally got in to see the University Neurologists. After reviewing my brain scans, listening to my anecdotes about the strange and painful sensations on the right side of my face, and after performing a facial massage that triggered pain on the right side only...the Neurologist diagnosed me: Trigeminal Neuralgia with Persistent Unilateral Headache.
I’d never taken a day off or a day sick in all of my time as a teacher. I missed over 35 days that school year. Days off for tests, doctor visits, and days where the side effects of prescriptions or the pain was too intense for me to teach and/or drive. All the while, over a dozen different medications failed to aid my nerve pain or render the constant banging and droning of the ever-present companion headache gone. Seems there was no easy fix, and my life would begin to unravel.
I resigned later in the Summer of 2012, knowing that the classroom lights (any fluorescent lights) sent my condition into a frenzy. Knowing that I was not 100% for my kids and therefore they would not come away at the end of year knowing all I could teach them. Having experienced that lunchroom duty with 600 students and fluorescent lights was horrifically painful and a sure-fired way to make the nerves in my face sing, sear, and crush the joy out of my existence and the career that I had already obtained a Masters degree to acquire. The awareness that the cold wind of bus duty or courtyard duty on Winter days (something all of my colleagues and I were expected to partake in) felt like knives slicing my skin though never leaving a cut to bleed. Lastly, the looks from colleagues that could see the pain in my eyes and on my face, but could do nothing to understand or help. Greater still, the fact that people looked at me and talked to me in a very different manner as if I was "other" or not mentally sound. It is likely they did not notice, but everything was painfully obvious to me that life was never going to be the same.
It has been over a year now since I resigned from a career that was snuffed out during the height of brilliance and ambition, and I am still in pain. No cure. No effective treatments. Trigeminal Neuralgia changes you. Pain changes you. One quickly realizes how much the world, and many so called friends, just want you to suffer in silence and not burden them with the knowledge of what they cannot see. One hastily knows who actually cares about them and who is truly supportive.
There is so much misunderstanding and confusion - even amongst medical "Professionals" - about Trigeminal Neuralgia, Fostergill's disease, Tic Douloureux, or the Suicide Disease (an unfortunate nickname from a bygone era where we were silent, help was not within reach, and sufferers felt there was nothing to do but die to end their pain). The drugs are harsh and do little to help. The surgeries are barbaric and often lead to scarring and more pain. Many experience a return to the original amount of pain...or worse within months of a procedure. Insult to injury lies in the fact that organizations like WHO and Social Security/Disability continue to ignore the millions of sufferers in the US and elsewhere. I will never be the same. I know that now. I will likely hurt 'til the end of my days, but I will no longer be silent as my World unravels, my career stalls, my lenders attempt to get blood from a stone, and I am forced to live within the limitations of this horrid, isolating disease.
If you've read this, please spread the word and show your support. If you suffer, you are not alone and you should not remain silent. It is time for us to step out of the dark and make the invisible visible. If enough of us make enough noise people will be forced to acknowledge our illness and our pain...and hopefully someone will find a cure. A true cure that does not make us more ill or less of ourselves than we were before. Trigeminal Neuralgia should not remain a mystery and we must fight for attention and a cure.