My name is Erika Greenup, and I have atypical trigeminal neuralgia/idiopathic facial pain. I was 24 when the pain started, and I am now 30. Since this began, I have only had 28 pain-free days, after a trigeminal node nerve block last summer. Unfortunately, it was not effective long enough to be a long-term treatment.
The pain on the left side of my face has slowly developed from aching/crushing pain, mostly located in my mouth, lower jaw, and cheek bone, to almost the entire left side of my face. My pain is likely caused by damage from an oral surgery, but this has not been proven. I have clean scans, and my doctors and I agree MVD is not a good option. I have tried 11 medications, and only Nortriptyline has really worked without making me horribly ill. It took five months to get accurately diagnosed, and I barely slept during that time. The pain was a constant level 10, nothing really
helped. The stress and lack of sleep nearly killed me.
About a year into the pain, I realized if I was going to heal emotionally from the trauma of the pain, drug side effects, and deep depression, I needed a project to change my thinking about my ATN. I began to paint my pain areas daily, took photos, and posted them to a blog called Masking the Pain. Each time I painted, I felt that I reclaimed my face by turning the aching, crushing pain into beauty and color. It made my pain visible. I didn’t need to talk about it with family and friends because they could actually see it, so they stopped asking me how I was feeling. Strangers asked questions, and I was able to raise awareness. I also found that as meds lowered my pain levels that wind was a trigger, but touch was not. The paint sealed my skin from the air and helped keep pain levels lower. The paint patterns also became a record of where my pain was and how it was growing over time. As life got busy again— getting married and trying to work odd jobs here and there, I painted less, but I still do it when I feel I need a lift emotionally or when I have a new symptom and need to come to terms with it.