My Life with Trigeminal Neuralgia
/By Pat Akerberg
Most of us don’t focus on the idea of pain until we find ourselves in it for one reason or another. We just know that we’re glad when it’s gone.
But what if it doesn’t go away?
Challenging conditions occur for some of us that catapult us into a life of chronic, intractable pain. You know you are one of the unlucky ones when meetings with doctors end with statements like:
“There is nothing we can do.”
“You’ll just have to live with it.”
“It’s all in your head.”
That last statement is the one that literally began my life-altering journey with pain. An outgoing, upbeat owner of a thriving consulting practice, I was on a business trip enjoying dinner with a favorite client six years ago. My meal started with a typical salad. By the second bite, I was writhing through volleys of shocking pain shooting through the roots of my teeth on my left side.
PAT AKERBERG
I later learned that this neurological disorder of the 5th cranial nerve was trigeminal neuralgia -- also known as the “suicide disease” or “worst pain known to mankind.” I had to cut my trip short and fly home to see my dentist, pronto. Little did I know then that this event would mark the end my of work life, one of the growing list of ongoing losses for me to grieve.
I was both unfortunate and fortunate during my short search to find a proper diagnosis, one that often takes many months or years to receive. Unfortunate in that trigeminal neuralgia (TN) is so rare, the cause is unknown, treatments do not offer a permanent cure, and sometimes create more pain issues. Fortunate in that I escaped the needless root canals or extractions that most are subjected to prior to an accurate diagnosis.
Research became my middle name as I sought to learn everything that I could to get my problem “fixed.” I was driven to get back to my career and serve my clients. Research collectively pointed to an invasive brain surgery done by a neurosurgeon. It seemed to have the best odds for a cure, with the least chance of further damage to the nerve.
Unfortunately, permanent nerve damage is exactly what occurred. Imagine my concern when I awoke from surgery with my face immovable; frozen like a block of concrete, numb with pulling sensations, and the stabbing pain in my teeth now constant.
The neurosurgeon who held out a sure cure quickly distanced himself -- perceiving me as “too anxious” about the devastating impairments and pain frequency. With dispatch and without explanation, my case was closed.
Left on my own to seek out answers and help, I pursued consultations with several other leading TN experts. With honesty and compassion, each one delivered the same bad news: medicine and science have not caught up with how to effectively treat a damaged trigeminal nerve. Advising against further procedures, my lifetime membership into the intractable pain club was validated.
“Invisible” Pain
Being a co-habitant with an intrusive bully like intractable pain has been all consuming. Any illusions I had of control have been shattered.
There’s also an invisible aspect to my pain that can create issues with believability.
Most people are unaware of orphan diseases like trigeminal neuralgia, and have little understanding and compassion towards those who have them.
Family members, who are turned into caregivers overnight, scramble to figure out how to relate to a frightening pain condition. Many close friends eventually drift away when you don’t get better, are unable to keep up, or cancel plans too often. And busy medical professionals can skeptically question what they cannot see or touch.
That’s partly because we are so often judged by how we look versus what we say. If we don’t look sick or in pain, then the erroneous assumption follows that we can’t be that bad. But we can be!
When I report that I am unable to chew solid food (eat out), talk, smile, laugh (socialize), move my face or have anything touch it (brush teeth, take walks, exercise) without triggering unbearable facial pain; most people can’t square such an unthinkable loss of natural life functions with how I appear to them.
I agree. It is hard to fathom, yet with neuropathic pain disorders like TN, simple things that normally don’t cause pain now do. Combine those quality of life diminishments and misconceptions with disabling pain and the ingredients for a lonely, isolated existence can’t be denied.
Often I feel as if I am living in an inescapable bubble, missing out while the rest of the world goes by without me. It takes tremendous fortitude daily for me to counter those negative effects in my life with meaningful ones. Some days are more successful than others.
Like most who suffer with chronic pain, the search for any kind of relief becomes a way to keep hope alive. In the meantime, I do find it helpful to post, blog, and reach out to connect with people like myself whenever I can. It reminds me that I am not alone in this often debilitating journey.
Pat Akerberg lives in Florida. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum.
Pat is also a supporter of the Trigeminal Neuralgia Research Foundation.
Pain News Network invites other readers to share their stories with us.
Send them to: editor@PainNewsNetwork.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.
