Sparky Jaw: Researching Trigeminal Neuralgia
I always called it 'sparky jaw'. Since I was a child I would have this incredible pain along my jaw. It felt like an electric cactus was stabbing my face from the inside. This feeling would come and go with no rhyme or reason. I thought that this was normal. I saw and heard about how it feels to bite into a lemon or tasting something sour. People would make faces and talk about the feeling in their jaw. To me, they were feeling the same thing that I was. It was not true then and is not true now.
What is trigeminal neuralgia (TN)?
I was experiencing trigeminal neuralgia (TN) without knowing it. TN is defined as “a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head...The typical or "classic" form of the disorder (called "Type 1" or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.”1 My lifelong sparky jaw had a real name and it was a symptom of my multiple sclerosis.
Is trigeminal neuralgia tied to MS?
I found out about TN the same way I learned about my other odd MS symptoms: Google. After being diagnosed I set up a shortcut I could use on a Google search. When I type “multisc” I get the words multiple sclerosis in quotation marks. I would then add “and” plus whatever symptom I may feel. Imagine my surprise when my search for “sparky jaw” returned an actual result. Multiple sclerosis is a weird kind of chronic illness! Because it can affect any part of the body, MS can be looked at as a cause of a variety of symptoms.
I should have not found myself slack-jawed, so to speak, at this new information. I tend to be a person who does not look to multiple sclerosis as an explanation for maladies. I have failed to get help for issues because of this failure. I could have learned more about TN earlier had I known I had it.
My TN research journey
Once I found the term “trigeminal neuralgia” I read as much as I could. I made sure to not only read the first few Google results and I avoided ads, prominently displayed or not. I wanted good solid information that I could use to better understand what had been happening my whole life. Searching is the easiest part of learning about something. The real work comes in deciphering what is good data and what is not. I did not have a problem with TN because it is rare enough to not solicit the attention of the disinformation mob.
I learned a lot about this painful disease from what exactly it means to have it to what kinds of treatments are available. Research has been my friend from day one and it continues until this day. It not only helped me to understand multiple sclerosis on the whole but has guided me in finding out more about my own body and the weird stuff going on, like trigeminal neuralgia.
Moving forward with knowledge
Unfortunately, there is no real cure for trigeminal neuralgia. While this is somewhat devastating news I am comforted by the fact that I know more about TN. I never knew was a medical condition and part of the manifestation of multiple sclerosis. Having this knowledge has empowered me. I would heartily recommend that we, as people living with MS, continue to research our disease. Not just research on a theoretical level, but on a personal one by looking into what ails us. You may get a surprise like mine or just be better educated. I did both and now TN is a symptom I can live with because I know more.
Have you found out about an MS symptom the same way? I would be interested to know.
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?