Those of you who have been following my shenanigans know that since February of last year, I have been suffering from severe chronic eye pain in my left eye. It happened suddenly, and as far as I know, it hasn’t affected my vision. But the pain has been excruciating, and it’s constant. I’m on a nerve pain medication for it, but I have to stay on a low dose to prevent terrible side effects. So I often have breakthrough pain.
(I am, however, very thankful that I didn’t go blind. That would have been much worse.)
I also have what I call “eye migraines.” Because the migraine comes from my hurting eye, and it makes it feel like someone punched me in the face. Everything hurts. Even my teeth! My sanity and strength have both been tested by this. It hurts worse than my most painful tattoo, which I rated an 8 on a scale of 1 to 10. And I’m not a wimp about pain.
So, once we determined what it wasn’t, my neurologist took the stance of treating the symptoms. Granted, he mentioned a spinal tap, and I refused on the grounds that it may not reveal anything conclusive, and didn’t want to put myself through more pain for that. He also suggested getting a second opinion. Not because his conclusions suck, but to get another set of eyes and another perspective on it.
So I filed that away, stuck it on my Year of No Fear Manifesto, and promptly didn’t do squat.
Yes, I was afraid. I think I’ve been more afraid of no answer than I am of an answer itself, if that makes any sense whatsoever. Because for the last 11 years, I’ve had that happen a lot. And it sucks worse than any diagnosis would. Really.
Because with a diagnosis, there’s an answer. With an I-don’t-know, you got nothing.
So, needless to say, I have been procrastinating. I told myself it was because of the hoops I’d have to jump through to get that done, time off work, etc., but honestly? It wouldn’t be that difficult. I was afraid. And I believe I still am.
I thought at one point that I’d found it. I ran across an article about corneal neuropathy – which is apparently so painful patients beg their doctors to take out their eyes — and thought it sounded like what I was going through. And, it’s hard to diagnose, which made sense. So I went to my eye doctor (that week, in fact!) and got the whole evaluation done and asked that important question. Could this be corneal neuropathy? He said no, that the pain is different. It feels like you have something in your eye all the time. Well, that wasn’t what I was experiencing. Mine’s more of a dull ache, more often an intense throbbing like someone’s sticking a needle into my eye.
So, no answer yet again.
So it looks like I may need to get off my butt and see another neurologist. I’m going to have to face this fear, because the answer could still be out there (although the likelihood of that happening is very low now since we’ve exhausted almost every possible theory). And once I get an answer, maybe I could get a treatment. And even if it can’t be treated, at least there’s an answer, a diagnosis. A name for what I’m experiencing. A real thing. Not this nebulous, well, it could be optic neuritis, but…you could have a tumor, but…maybe you had a stroke….
The “could bes” are freaking killing me.
When this first happened, I couldn’t imagine living with this for a month, much less a whole year, and could not comprehend it being a lifelong struggle. And it is a struggle. For some reason, stress makes it worse, and I work a pretty stressful job. I can’t take anything strong for it because it would mess my thinking up. So at work I simply endured.
I have been enduring a lot.
And I just…if there was one thing I could have, I’d ask for that answer. I can live with the pain. What I can’t live with is not knowing. Not anymore.
So, time to see the brain doc. And hope.