Trigeminal Neuralgia: Two-Year Update

This is eerie, you guys. I posted my one-year update on June 21st of last year. And, like I said in that post, it was technically my eleven-month update, but one-year update sounded better. And kind of final. So this one is technically my one year, eleven month update. Close enough, right?

When I posted that glorious post, I had every reason to believe that while things may get bumpy here and there, I would remain pretty much pain free. I guess it was naive, and a lack of dealing in realism. I’ve always known that TN is a progressive condition and it gets worse over time. Most people end up having some sort of brain surgery done. Scary thing is, it’s not always successful. And that is scary in itself.

I guess I never wanted to truly believe that that would be me someday.

Today I have some crappy news.

My pain has returned to almost constant levels. I hit level 10 several times last week, and took four loopy pills (not all at once. One each day). I’ve been tracking everything since May 15th, in the hopes that I can figure out a pattern of some sort, and if my neurologist wants details. The problem with tracking is that you become so aware of the pain, more than ever.

Here’s a sample of one of my pain journal entries:

Eye pain level 5 at 2:14pm Duration: 2 hrs 45 mins
Left forehead pain level 4 at 4:55pm Duration: 1 hr
LP @5pm

Translation: I had eye pain level 5 (of 10 on the Pain Scale) which started at or around 2:14pm. It lasted 2 hrs and 45 minutes. I also had pain in my forehead, left side, level 4 at or around 4:55pm, and it lasted for an hour. I took a painkiller at 5pm.

So I’m constantly thinking, “okay, there’s the pain again. What is it? Level 4? No, it feels more like a 6. When did it start? Five minutes ago?” [later]  “Hey, my pain has decreased. How long has it been? Is it a 2 now, or a 3?” “How long did the level 6 pain last? Better log this!”

…Yeah, It’s not very fun.

But the most not fun part is having to go through this again. The first time, I barely ever complained. I only took painkillers when it became unbearable. Now, I find myself more frustrated with the situation, and if I’m doing something important, like say, going to a family party or something, I will take a painkiller if the pain is above a 5 even if it isn’t a 10. Just for relief, and so I can sort of enjoy myself. Obviously, this can’t go on like this, because I don’t want to depend on them. But I still can’t deal with the pain.

And there’s that new “left forehead” pain that wasn’t there before. It feels a lot like a migraine, actually, except it can’t be, because migraine pills have yet to touch it, and it’s near my painful eye. There’s a branch of the trigeminal nerve that runs through there, so it makes sense.

So, yeah. I’ve found the only reliable distraction is Guild Wars. With GW, I can immerse myself in killing monsters or doing a mission or a quest, and the pain takes a backseat for awhile. So, the whole week I was on vacation from work, I mostly played GW because I had some wicked pain.

People have suggested that it’s stress related, and that could be true. I have some things happening with the day job. I think the correlation is interesting. And it could very well be part of it, because TN is made worse by stress.

I’ve also joined three TN groups on Facebook, and learned that yes, jaw surgery from many moons ago could cause this. I always assumed not. And, it’s nice to talk to people who know what this is like, who know I’m not crazy, and have gone through the same stuff. That has helped.

TN is a very weird condition, in that it’s unpredictable, exhausting, and frustrating. For instance, the past two days haven’t been really bad pain-wise. And of course the analyst in me is immediately going, “why? what changed?” but really? It’s just the way it is. As I type this, my pain has gone from a 2 to at least a 5 in the past hour. I used to correlate it with rain, and it did rain today, but some days it can be sunny and clear and my pain is level 10.

So it’s off to the neurologist next week for a discussion on raising my dose. I’ve resisted this for a long time because of the sleepiness side effect, but frankly, I’d rather worry about staying awake than worry about how the hell I’m going to get through work with level 9 pain. It’s time.

Luckily, I am on a low dose, so we can go up if we have to. Some people go so high on their meds that they can’t go any higher, and then it’s either another medication or surgery. The drug I’m on currently is “the” drug for TN, but there are others. In fact, there is one very similar to it that boasts hardly any side effects. Might be worth a mention.

Honestly, I’m very scared. I had almost two nearly blissful years, and it’s all going away again. And I imagine, once I get on a higher dose, that the same thing will keep happening. And there are some people out there who simply cannot get a handle on it, and they simply live with the pain. I did that for almost three years, and it was hell. I am praying for a solution.

Meanwhile, I will do what I did before: endure.

I wish I had a better update, but that’s the truth of this condition. You can’t bank on a better tomorrow. But maybe someday they’ll figure something out that will help people like me. As Karen Marie Moning says in her awesome Fever series, “Hope strengthens, fear kills.”

I will keep strong by hoping, and not let the fear kill me.