Finally, a diagnosis: Trigeminal Neuralgia. Trigeminal Neuralgia (TN) is a disorder of the 5th cranial nerve that causes a stabbing or electric-shock-like pain in parts of the face. The pain of trigeminal neuralgia comes from the trigeminal nerve. This nerve carries pain, feeling, and other sensations from the brain to the skin of the face. It can affect part or all of the face, and the surface of the eye.
Trigeminal Neuralgia may be caused by: Multiple sclerosis, pressure on the trigeminal nerve from a swollen blood vessel or tumor, but often no specific cause is found. Doctors are more likely to find a cause if the patient is younger than age 40.
So what does all of this mean? For starters, some knowledge for me and some peace of mind. Living without diagnosis has been intolerable. I have felt like I have known there has been some invisible thing wrong with me that has been causing me great amounts of pain and discomfort, but I had no way of proving it to anyone. Dr. Watson at WVU Headache Clinic has given me a powerful tool today to help me help myself deal with this issue that has been impacting my life. I left WVU Headache Clinic today with a diagnosis, new meds, some rules for work regarding lighting, a headache, and a little bit of relief. A have a disorder called Trigeminal Neuralgia. You learn something's name and you have a little bit of power over it.
I also have a chronic headache that is partially responsive to a medication called Indocin. The headache could be its own entity, or I could have an alternate for of TN called Trigeminal Neuralgia Type 2 or Atypical Trigeminal Neuralgia which often has a constant unilateral headache accompanying it. We are not yet sure what is causing either of these, but the Neurologist at WVU wants to take a medicinal route first to try to tame the neuralgia. He thinks it might be causing the headache to trigger on a daily basis. There was something odd at the base of the Trigeminal Nerve on my MRI that UHC did not even mention. WVU Neurology is not sure if it is something to be concerned with or may be an "artifact" on the film. They are consulting with their radiologists today and will let me know today or tomorrow. We have upped the dosage of the Indocin to something he says might actually work and added Neurontin for the TN. Additionally, I will no longer be taking Topamax.
Today is a positive day, so I'll not dwell on anything negative too long, but going to WVU Neurology as compared to United Hospital Center was like the difference between night and day. Dr. Watson and his team spent over an hour with me on my initial visit today. They were benevolent, engaged, and seemed to be invested in helping me. UHC Neurology processed me like I was cattle. They were condescending when I tried to self-advocate at UHC, and an appointment with their neurologist never lasted longer than 10 to 15 minutes. What a difference!