I’m so sorry you did not get what what you need from your appointment. I really get how tough it is to put yourself together after a frustrating one, especially when you get dismissed like that. And when you don’t present with nice clear symptoms like Classic TN. There is a flood of despair. Don’t give up looking for a new neurologist. I had to try a different approach with my second neurologist.
In fact had to go through a lot of doctors and a lot of tests, 2 cat scans, gamma camera scan, barium swallow, you name it, take an elephant- load of antibiotics before I put my foot down. I saw two doctors at a pain clinic (ENT and anaesthetist) and endue trigger point therapy from a needle jock who sternly advised me not to go the drug route and tried to sell me Botox treatments at $600.00 every two months for the rest of my life. But I still did not have a satisfactory diagnosis although there was suspicion at this point that I had something like TN but that was not made clear to me - a lot of other fuzzy words were used, like C-6 neuropathy of unknown origin. I went searching down that road. I did not hear the word trigeminal from anyone. It was not used on my report from him. I lost over 20 pounds in six months. My GP finally started me on carbamazepine and that drug made me feel like I was living in a cape of death. I stopped after a week. It took a long time to shake that feeling. Pain, especially late in the day and evening, and other symptoms were increasing and I began to think that I was not living a viable life.
Until then I had been trying to keep up with my work which required a lot of research and it was exhausting me so I had not done a lot of looking around on the Internet for other possibilities. But I realized at this point that I was going to have to diagnose myself. That’s when I came up with glossopharyngeal neuralgia, because of the throat and ear connection. My GP came up with the same diagnosis the same week after talking to an internist about me. At that point she prescribed tramadol, booked an MRI and finally referred me to a neurologist.
I live in Canada and they will give you just about every test to make sure you’re not dying of something right away, but after that the system works at a snail’s pace. Anyway, the tramadol didn’t take away the pain but it let me endure it. When I finally got to the neurologist, I knew the minute I saw him that the appointment was going to be a dead end. I read aloud from 10 pages of pain words, description, and a history. He listened silently, grimly did the standard neurological exam, and then asked if there was anything else I wanted to tell him. I hunched over, put fists to my face and said through a clenched jaw, “I feel like my teeth are being strangled”. And sure enough he dismissed GPN, called me poor sad woman with fibromyalgia because of my “plethora of symptoms”, and prescribed Cymbalta. I was shattered. The MRI came back “normal”. By this time, a year and a half after the first symptoms appeared, waking me up in the middle of the night with deep piercing/pulsing ear pain, people who didn’t know me well were looking at me suspiciously, because by then, I was looking like a poor sad woman and every night it seemed like I was on fire in my own private head-burning hell. I didn’t know what to say to anyone. I tried cymbalta and that combined with only a little tramadol flipped me into serotonin toxicity. I wanted to die - and I could have.
That’s when my GP decided that I needed to see someone who was not your run-of-the- mill garden variety neurologist. Her clinic found me someone in Vancouver (I live on a small island off Vancouver Island). I knew by then that I had to make the most of this appointment. I found images on a bookmark (of all things!) that depicted a series of fireworks and streaking shots in different colours and sizes which I thought neatly summed things up. So, as per usual, at the appointment with my second neurologist I gave the history, read from my growing list of pain words, and she asked the standard question, “on a scale of 1-10 how would you rate your pain”. I spontaneously threw down my papers, leaned across her desk and said, “what the hell does that mean anyway?” She quickly quipped, “yeah, right”. I breathed a sigh of relief and knew I could work with this woman. Then I gave her the bookmark with the images. “Oh,” she said. “You understand patterns.” We started drawing patterns together until we came up with a couple that we were satisfied that we both understood. I was flooded with relief. She ordered another MRI, FLAIR protocol. It came back positive for contact of superior cerebellar artery and Trigeminal nerve. She was gleeful when I came back in, “it’s touching in several places!” She said looking at the screen. Then looked at me and put on a straight face, “not so good for you. But it can fixed!” She referred me to a neurosurgeon at the University of British Columbia and started me on gabapentin. This was well over a year ago. I am still waiting to see him.
In the meantime I have been to the Vancouver Pain Clinic in agony. There I was diagnosed with atypical glossopharyngeal neuralgia was well as TN2. The feeling of vindication was almost overwhelming. When I was talking this over with my GP I mused about perhaps using the wrong descriptions with the first neurologist. She raised her eyebrows and said, “he should have been able to diagnose you even if your were retarded (in the medical sense)”.
If you got through this long winded narrative I hope you can take away the hope that you will find a neurologist, or someone, who will see how to treat you, even though your symptoms don’t fit. As my endocrinologist said to me, "these things sometimes take a long time to manifest into something we are positive about. Be sure to document everything."
I really hope the next neurologist you find will be the one to put it all together.
Peace and Kindness
Bellalarke