Pain is invisible. Some pain has external indicators: wounds, slings, bandages. My pain does not. My pain is all in my head. Literally.
On November 19th, 2014, a routine dentist appointment changed my life forever. As I sat in the dentist’s chair waiting to have two cavities on the left side of my mouth filled, I felt nervous. I never had any fillings previously, so I wasn’t sure what to expect. I complained to my coworkers about my misfortune of having to endure these fillings. But all went smoothly, and I felt silly about my anxiety.
Two weeks later, I went back to have a third and final filling – this time on the right side. Before we began, my dentist asked, “Have you been having any pain with the last two fillings?” I answered “no” because I truly noticed nothing different. After the third and final filling was completed, I went home to relax, thankful that all the dental work was over. I was munching on pistachios thinking about the dentist’s question and why he would ask if I had any pain two weeks after the fact. As if my tooth was listening to my thoughts and plotting against me, a zing of pain shot through my left bottom molar and I knew something was wrong.
I went back to the dentist the next day. “Nothing seems to be abnormal. Your X-rays are fine.” This would be the first of many medical professionals who would tell me, “Everything seems to be normal,” when I felt anything but normal.
Over the weeks, this pain slowly crept from one tooth to its neighboring tooth and to the next, the next, and the next. It crawled into my ear and soon overtook my entire jaw area on the left — throbbing, aching, stabbing misery. My teeth felt like they were being squeezed so tight and would soon explode or shatter into a thousand pieces. Two weeks later, the pain spread, as if it were an infection, throughout the right side of my face. In the mornings, it felt like a bear trap was clamped over my face, with its sharp teeth sinking into my skin around my ear, cheek, jaw, and teeth. By night, my face felt like a thunderstorm full with lightning bolts. The pain was constant and I did not live a single moment without it.
After two urgent care visits, a steroid shot, and some amoxicillin, I started to get the feeling that we are not getting to the root of my painful problem. Over-the-counter pain killers were equivalent to Skittles. I was starting to feel pretty desperate for relief. I seek out help from an endodontist. He determined, after several tests, that the nerves inside the teeth with fillings were slowly dying and would require root canal treatment in order to save the teeth. This happened to be a relatively common complication of having (especially deep) fillings. Over the next several weeks, I had root canal treatment on all three teeth. This ended up taking six visits to complete. Unfortunately, the pain did not cease for me, but only worsened. We had awakened the “sleeping giant” and the pain continued to creep. Bone-crushing pain in my teeth, stabbing pain in my ears, shocks behind my eyes, and intense migraines.
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Being an occupational therapist, my world is that of science and medicine. I am surrounded by sick and hurting people, and I have the privilege of being one of the many members of a medical team who gets to help them feel a sense of normalcy again. You would presume I would be more comfortable with seeking out medical attention for myself, but I am not. I am the person who does not go to the doctor for anything. Despite my disdain for the doctor’s office, I had made 20 trips to see various medical professionals: neurologist, dentist, endodontist, pain management, general practitioner, ENT, etc. I also made two trips to the ER due to the severity of the pain and coinciding chest pain. It was difficult to see so many specialists and gain so little information.
It wasn’t until I met my pain management doctor (I like to refer to him as Dr. Pain), that I had a real label for what I was experiencing. He told me I have “trigeminal neuropathy” or “trigeminal neuropathic pain.” This is different from trigeminal neuralgia because it results from injury to the nerve. There is so little known about this type of chronic pain that I have received several diagnoses including trigeminal neuralgia type 2, atypical trigeminal neuralgia, atypical facial pain, idiopathic persistent facial pain, and complex regional pain syndrome. Nevertheless, my doctor explained to me that the dental procedures “irritated” a branch of my trigeminal nerve and for whatever reason, that irritation spread up the nerves and will not go away. The prevalence of this condition in the population is .0001%.
The list goes on and on for treatments I’ve tried: nerve blocks, over 20 medications and supplements, acupuncture, cold laser treatments, chiropractic care, yoga, etc. None of these treatments helped significantly.
As an occupational therapist, I never thought I took my health for granted, especially since I am surrounded by hurting patients regularly. But, I am certain now that I have taken it for granted. This pain has brought me closer than ever to my patients and what they are going through when I meet and work with them. I would like to think I was a sympathetic person beforehand, but now I have true empathy. I want to tell them I am going through the struggle, too. That I am hurting alongside them. Sometimes I do tell them. Sometimes I don’t.
I am now four years into this chronic pain gig. Thankfully, as time has passed, my symptoms have improved. Has the nerve repaired itself? Did one of the supplements I took help my body heal? I’m not certain what the answer is, but I’m grateful. Although I still have days of pain, I have learned to manage it and learned to live my life despite this barrier.
I spent many days asking “why” questions. “Why me, God?” “Why do I keep waking up in pain?” “Why can’t I get a break?” I don’t ask those questions anymore. I don’t ask them because I know oftentimes there is no answer. I don’t ask them because I also know that this can help refine who I am and build my character, if I let it. Good can come from bad situations. So I’m going to have faith that I will pull through this and I will have hope that things will get better. Because without hope, what do we really have?
If you or someone you know is having facial pain after dental work, an injury, or with no apparent cause, please visit the Facial Pain Association for more information and support.