Receiving a Trigeminal Neuralgia Diagnosis
First pain photo taken around time of Trigeminal Neuralgia diagnosis
Prior to being diagnosed with Trigeminal Neuralgia (TN), I had a series of sinus infections for a few years that didn’t clear up. I tried antibiotic after antibiotic only to have a sinus infection return a few weeks later. Every time the seasons changed or it was Spring, I knew I would get a sinus infection, typically coupled with strep throat and bronchitis.
In late 2017, after trying yet another antibiotic, the sinus pain shifted to the right side of my face, where it’s been ever since. At first I thought this was still a sinus infection. I saw an Ear Nose and Throat (ENT) doctor who did scans and looked in my sinus cavities. Everything looked good. The issue was not coming from my sinus. I was then referred to Neurology.
In March 2018 I had my first Neurology appointment. I had Trigeminal Neuralgia, a chronic pain disorder that causes severe pain in your face. I couldn’t even pronounce the name of my diagnosis let alone understand what the doctor was saying. I remember looking at the doctor blankly as they described Trigeminal Neuralgia and the limited amount of treatment options. I left that appointment with orders for an MRI and a prescription for Carbamazepine.
I started Carbamazepine, an anticonvulsant medication that is a common front line prescription for Trigeminal Neuralgia. A medication that typically helps a majority of TN patients. The dose was to gradually increase each week. I have a difficult time with medications and I soon found the side effects to be difficult to manage. I was drowsy, dizzy, had blurred vision, and had become highly uncoordinated. I would run into the wall or door frame and not understand what had happened. I wouldn’t remember how I got downstairs or from room to room. More importantly, Carbamazepine did nothing to help the pain raging in my face. The medication was stopped and I was prescribed Gabapentin as an alternative.
I started Gabapentin, only to find out I was allergic. Soon after starting the medication, my scalp broke out in rashy bumps. My hair started to fall out. This was also not a medication I would be able to take.
While experimenting with various medications, I also had an MRI of the brain and face. I’ve had experience with MRI’s before and I highly dislike having my body in a tube about the size of me, listening to loud thumps and bumps, and laying there for hours. To me, the worst part of having an MRI of the brain and face is they strap your head into a cage so you can’t move. Que my anxiety to make an appearance. I know that if you move during an MRI they have to start over from the beginning. I know to be compliant and not move. I can tolerate anything for a short period of time. I lay in the MRI machine with my eyes tightly closed, knowing if I open them I’ll see the cage holding my head and just beyond that the circular walls of the tube I was laying in. I listen to music, sing along in my head, and picture myself at the beach with the waves crashing in on a warm summer day. I am anywhere else besides in a tube where we are trying to find the cause of my pain.
At my next Neurology appointment, I received the news that my MRI is clear. There is no compression on the nerve in my face, a common finding in patients with TN1. I was further diagnosed with Atypical Trigeminal Neuralgia or TN2. This was delivered as good news and I couldn’t accept that it was indeed good news. What about the horrific pain in my face? What is the cause? What can we do to make it stop? If I didn’t have a compression, would I still be able to have Microvascular Decompression (MVD) surgery, a procedure that helps so many Trigeminal Neuralgia patients that show a compression on their MRI? I had so many questions I would never get answers to.
The answer was to try another medication, Lamotrigine. Again, I couldn't tolerate the medication and it did not help my pain. Instead, the medication affected my teeth. My teeth started to quickly decay. The medication was stopped and I had a few dentist appointments to fix the damage to my teeth.
Throughout my medications trials I saw a few Neurologists. I’m not sure what the problem was, but my Neurologists seemed to keep leaving the practice. The appointment I had to discuss my third failed medication, I had to see a Neurologist whom I did not care for and their bedside manner was less than stellar. When I asked what was next, I was told the following as they walked out the door:
“Stop complaining. Get a pain pump and learn to live with it. Be happy you have this now, not too long ago you would have been institutionalized and experimented on.”
Yes, I was actually told this. I was left stunned, still sitting in the exam room, trying to process what had just happened. I gathered my belongings, left the office without scheduling another appointment and transferred my care to another, larger city.
I was a newly diagnosed Trigeminal Neuralgia patient asking for help. Desperately trying to understand the non-stop pain in my face and asking for something, anything, to help calm it down. A daughter of a nurse, I knew how I was being treated was not ok. Looking back, I am happy I left and now travel two hours each way to see doctors that do care and have options to help me.
The care I found in larger cities was far superior to what I received in my hometown. I found doctors that are not only knowledgeable about Trigeminal Neuralgia, but they see me and want to help. I proved that I am in charge of my care and I want to be treated. I found hope and reassurance.
Stay tuned for more about my treatment journey in upcoming blog posts…
