Technically, February 3rd is the actual five-year anniversary, but close enough.
When I first began talking about my mysterious eye pain, I couldn’t handle the idea of having it for a month, let alone years. But apparently, fate had a different idea.
It’s been five very long years.
So…after a year pain free, I was plunged right back into my nightmare again. My neurologist and I are still trying to get a handle on the pain. It’s not constant anymore, which is a good thing, but I still have horrible pain attacks. I’ve had to spend less time on the computer, doing things I love, because the screen does make it worse sometimes. But one good thing has come of this. I have been able to tackle my extensive paperback/hardcover To Be Read pile.
Unfortunately, other things, like Guild Wars, have gone by the wayside. I am still hoping to get back into it at some point.
Writing-wise, I’m doing well. I can’t not write, pain or no pain. Been trying to get up the energy to dictate/transcribe so I don’t have to look at a screen all the time.
There may be a visit to a neurosurgeon in my future. I am scared, and worried, and not wanting to have surgery. There’s Gamma Knife, which isn’t invasive and uses radiation, but I’ve read that some people have worse pain afterward. Some are helped, but not forever. The pain always returns as the nerve regenerates. So…I just don’t know.
So if you’re been reading this blog for awhile, you know that I have been battling trigeminal neuralgia (an excruciatingly painful inflammation of the trigeminal nerve, which supplies sensation to the face) for about four years. It went undiagnosed for almost three. The medication I take to control it stopped working around May, and my dose was increased. It did not help at all. So I’m pretty much back to constant pain again which frankly sucks.
Very recently, I made a startling discovery. I have been battling it for longer.
Let me explain.
I had major jaw surgery to correct severe TMJ when I was fifteen—a nine-hour surgery where my oral/maxillofacial surgeon broke my jaws apart and realigned them, rearranged my face the way it’s supposed to be, and wired my jaws together for two months. As I’ve learned, surgeries like this—as well as routine dental work—can cause TN.
I had 28 pieces of hardware after the surgery. They took a “if it doesn’t hurt, don’t do anything” policy because taking them out would be another big surgery. They didn’t bother me, for the most part, for eleven years. Then, I started getting infections and rejections. So out they came. Oddly enough, most of the right side is still intact while the left is almost completely gone.
Throughout this entire ordeal, I keep asking myself (and anyone else who would listen) why it stayed dormant for over twenty years and then popped up. Now I know …
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: …
Well, actually, it’s 11 months, as my 1-year anniversary of my diagnosis is July 17th, but “One-Year Update” sounded better than “Eleven-Month Update.”
So, for the most part, I’ve been doing really well. I had an interesting moment while reading an article on one of those list websites. The title caught my eye: The Top 10 Most Horrible Medical Conditions Known to Man or something like that. Guess what #10 was? TRIGEMINAL NEURALGIA. I’m like, “No kidding.” They don’t call it the “suicide disease” for nothing.
I am not 100% pain-free, which is okay. Going from 100% excruciating pain while conscious to about 95% pain free while conscious is a BIG, huge improvement. Times I still have pain: when it’s going to rain (this is eerie — I can predict when storms are coming before the weather people), if any kind of wind or breeze touches my face (so fans are bad), when the water hits my face in the shower, and about an hour to an hour and a half before the next dose of my pill. Times I’ve used a loopy pill in the past month: zero. Six months? Maybe once or twice. Compare that to almost every day.
Things I enjoy now that I’m not in so much pain anymore: photography. Writing. Sunlight (used to be a trigger). Camping (although the campfires can trigger pain still).
Stress is just stress now, not stress+pain. That’s a good thing.
The medication does wonders. It is really a life changer. I’ve had …
Thought I’d give you an update on how I’m doing. For the most part, I’m pain free, which is wonderful. Some days I still have severe pain though, usually if it’s raining, if I’m stressed out, or, surprisingly, if I laugh too hard (that really threw me for a loop, but I suppose it makes sense — the motions of the face while I’m laughing must irritate the trigeminal nerve). I still have a bit of breakthrough pain near my next dose, and lately, I’ve had breakthrough pain as early as five o’clock (my second dose is at nine o’clock in the evening). Sometimes it will hit me out of nowhere with no discernible cause, and those times have me scratching my head. TN is definitely still a mystery, and I think it will take some time to peel all the layers off this condition.
BUT when I think of where I was around this time last year, in excruciating pain and hopeless, I am ecstatic. Most of the time, I’m okay, and I’ve been able to handle the breakthrough pain well enough. It’s not constant anymore. And, I have a diagnosis. I finally have a reason why my eye and face hurt so much. That’s invaluable to me. And to think that if I hadn’t done the research, had given up hope…I’d still be in pain and depressed and probably suicidal (did you know that TN was once called the “suicide disease”? Because people, like me, were in such horrific …