The latest issue of PainPathways, “the first, only, and ultimate pain magazine,” contains a full page profile of Erika Conrad, founder of the Facial Pain Advocacy Alliance. We’re so excited about this article and its power to reach even more people for facial pain awareness!
The article is this issue’s “Reflections: Inspiring Pathways” feature.
Trigeminal Neuralgia
How a Baby’s Cries Led One Mother to Answers About Her Own Pain
Erika Conrad sobbed, wondering how she was going to care for her child when the sound of her infant’s crying caused excruciating pain. Remembering the moment, Conrad describes the circumstances that eventually led her to found The Facial Pain Advocacy Alliance.
“She was crying very loudly during a diaper change. I was changing her in the dark because the light hurt my eyes so much, but the sound of her crying was like a hot poker in my ear, and I couldn’t switch that off,” Conrad says. “I handed her to my husband and laid down in a fetal position at the foot of her changing table, crying and holding my head, which was in torturous pain. I started to wonder for the first time if there was any doctor or medication that would help me, or if this was just how it would be from then on.”
Conrad had suffered with migraine pain since high school. Over the years, she tried numerous homeopathic and medical treatments, but nothing worked consistently.“It didn’t help that the headaches had two distinct qualities: either the pain was in my ears and my eyes, or it was preceded by a visual disturbance, an aura, and followed by intense pain in my temples,” Conrad says. “The migraine medications worked for the latter, but the former (the ear and eye pain) wasn’t affected by medication.”
While attending a conference in 2004, Conrad was suddenly “slammed” by violent pain on the right side of her face and “searing hot pain” in her right ear. The pain’s intensity led her to believe that her eardrum had spontaneously ruptured.
“I remember checking in the mirror several times over the next day and a half, because I figured I had to be bleeding from my ear,” she says.
The facial pain Conrad experienced was diagnosed by an otolaryngologist as trigeminal neuralgia, a disease that has been called the “suicide disease”.” The ear and eye pain that she had been experiencing for ten years was later diagnosed as geniculate neuralgia (GN), a condition that led Conrad to two brain surgeries, an experimental, six-day ketamine-induced coma treatment, and ongoing medication.
“Since my second surgery two years ago, my GN is 75 percent improved,” Conrad says. “The medications get me to a level of pain that is better than before my second surgery, but still not what one would call tolerable.”
In response, Conrad has developed non-medicine coping mechanisms, many centered on distraction techniques. Writing and art have been her mainstay forms of distraction, two skills that she put to use to create educational content and graphics for Face Facts, the website of the Alliance. The website is designed to empower patients and provide resources to physicians not versed in early intervention treatments.
“In support groups on Facebook, I read thousands of stories about how people have suffered due to the medical community’s widespread ignorance of chronic facial pain syndromes,” Conrad says. “I felt someone needed to create one a one-stop, all-encompassing and authoritative resource for chronic facial pain patients and their physicians.”
Conrad hopes that as more people learn about the organization, better treatments and possibly a cure for chronic facial pain diseases will become realities.
“The organization is in its infancy, but it is already bearing fruit,” she says. “Information spreads in an exponential way; we encourage people to share the website and subscribe to the blog. Like that old shampoo ad, ‘I told two people, and they told two people, and they told two people,’ if everyone will share the information at Face Facts, the widespread ignorance of chronic facial pain will be wiped out.”
PainPathways, the official magazine of the World Institute of Pain, is distributed to health care offices nationwide and is also available online and in bookstores across the U.S. and in Canada.