UPDATE: I’m pleased to say that I was mis-diagnosed. It’s the first time I’ve ever sought a second opinion on something and I’m glad I did. For those suffering with TN, however, the battle goes on and you have my utmost sympathy. I got to know this condition a little and my cousin suffers from it. It’s not nice.
Something other than cars for a moment……
I was diagnosed with Trigeminal Neuralgia (TN) a few weeks ago. I’m not writing this post to engender anyone’s sympathy. But if I can help spread a bit of understanding…….
I’ve been reading the postings of people on a TN support board and the one common thread I’ve noticed is frustration over a lack of understanding. It’s as crippling for some people as the condition itself that their families/friends/co-workers don’t seem to have any understanding as to what’s going on with them. Maybe this post can help some people understand that this condition isn’t psychological. Trigeminal Neuralgia is very, very real and for many people, it’s very, very painful.
The trigeminal nerve is the one coloured yellow in the image to the right. I’m kind of new to this, but what I believe happens is that some of the protective coating around the nerve wears away in places and the nerve becomes particularly sensitive. Sometimes it reacts to certain triggers. Sometimes it just misbehaves all on its own, sending pain throughout the whole nerve in various forms.
Note: you have a two of these nerves, one on either side of your face. It’s normal for people to experience TN just on one side (for me, it’s the right side). People unfortunate enough to have it on both sides have Atypical Trigeminal Neuralgia.
For me, the pain I experience takes the form of a burning sensation. It can happen any time of its own accord, but it also gets triggered by any cool breeze blowing across my skin. Just a breeze from me walking in still air is enough to trigger it if the air is cool enough. The pain generally starts around the corner of my mouth and moves back towards my ear in a wave. This happens every 10 minutes or so when I’m awake. It’s bearable in terms of intensity but the constancy gets quite annoying as the day goes on. It doesn’t bother me at all when I’m asleep.
Other people describe their pain as being like electric shocks to the jaw, or constant stabbing. One guy described it as like having a mouth full of razor blades. TN is as different as the people who have it and I’m thankful that mine seems to be quite mild compared to that experienced by others. I hope to find effective treatment before it gets any worse.
One of the hard parts about this condition is that it has no symptoms that are visible on the outside. People can’t see why you might be temporarily impaired in what you’re doing. For 70% of my waking hours I’m absolutely fine and even for the other 30%, I still look absolutely OK. The pain is, quite literally, all in my head.
Personally speaking, I still function as normal every day. The pain is not so intense that I can’t work through it, though I seem to be more prone to headaches developing throughout the day. Others aren’t so lucky.
Treatment seems to be sporadic, depending on the person. There are various medications used but no single medication is guaranteed to work for a particular person. The stuff I’m taking now doesn’t seem to be doing much, though maybe I’d be a whole lot worse if I wasn’t taking it. I don’t know. Either way, I’ll be back to my GP soon, to seek something more effective.
There are more invasive treatments as well, things that involve cutting you and poking around very close to your brain. Not something I’d prefer to contemplate.
I’m not completely sure how to conclude this post. I can’t offer advice as to what you should do if one of your friends or family members has this condition. There’s little that you can do for them and for some, a hug might be excruciating (triggers for some people include talking, eating, shaving or just moving).
But as with people undergoing any medical difficulty, your support and understanding IS important. It would mean a lot to them, I’m sure. If you’ve got friends, family or workmates who complain of severe pain to one side of the face or similar symptoms, they’re not faking it even if you can’t see anything. This thing is real.
I guess the other outcome for me – the more personal one – is that I might not be writing on here so much. I still love writing about cars and I have a post brewing about Aussie politics and the media that I’ve just got to get out of me. But things will likely be slower for a little while, until I learn to live with my new friend.
Hopefully we can find the right treatment and it won’t take too long.