Trigeminal Neuralgia: One-Year Update

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 to give up my 1 wine cooler per camping trip habit, because central nervous depression is not good, but hey — I’ve never been a big drinker to begin with. While I do miss them occasionally, I think of how much pain I’d be in if I didn’t take my pill, and that feeling goes away really fast.

I am still fighting the fatigue, and weekends are still wacky as far as my sleep times go. I usually sleep an extra hour to compensate for getting up early to take my pill. It’s still okay, better than the alternative!

But life in general has been good, and overall I’m less depressed and less moody. I feel better, and I enjoy life more. I enjoy every minute without pain. It’s funny — you don’t realize how good you have it until it stops being good. I remember how everything I did was tainted by the pain. (If you recall, I gave up writing for 3 months partly because of this). Every experience…my birthday was right after this hit me in 2013, and I remember thinking, “gosh, can’t I just enjoy my birthday without pain?” And, since I hadn’t seen my neurologist yet, I had nothing to help it go away. (Except motrin, but it just took the very edge off). It was horrible. I remember sitting in a restaurant wanting to grab a knife and put my eye out because the pain was so bad (which, ironically, wouldn’t have helped). Seriously. I told my husband to keep all knives away from me. I was so, so messed up back then.

But if I hadn’t gone that extra mile and did my research, I don’t think I’d be here telling you this today. I’d probably still be in pain, still wondering what the hell was going on. And it was this forum I found for neurology stuff and one thread that was specifically targeted to people with TN and eye pain. And that’s when the light bulb went on. That’s when I said, “hold on. TN could affect the eyes? Holy freaking crap!” And I was off and running.

Sadly, the lovely PA who diagnosed me and got me on my meds is no longer with the neurology office I go to. But I’ll always remember her, and how she listened to me and took me seriously and didn’t just try to “treat the symptoms.” I urge you, if you are ever in a position where you do not know what’s going on, and you’re not satisfied with how your doctor is treating you, DO YOUR HOMEWORK. The internet has virtually everything about anything in it and if you ask the right questions, you’ll find your answer. (I shudder to think what would have happened if this happened to me pre-internet. I never would have known. SCARY.) My Journalism training helps me every day toward finding answers, but really, all it comes down to is persistence. Keep searching. Keep asking. Keep hoping.

I am living proof that miracles do happen.



  1. I always feel like most people (me included!) don’t appreciate the absence of pain enough. When I have a rotten cold, or I’ve had a stress headache for three days and finally it goes away, I resolve to do better, but in a few days I’m whining about traffic or something.

    So SO glad you get to enjoy mostly-pain-free days. 🙂

  2. Isn’t that the truth? I’m glad, too. Three years was waaaay too long.

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