Trigeminal Neuralgia: Ultimate Negative Reinforcement

This is what my face feels like about 5 to 20 times a day depending on how fussy my trigeminal nerve is feeling. That’s not an exaggeration. You know how when you go to a doctor for some pain issue and they ask you to rate it on a scale from 1-10? Women in labor probably get this a lot. Well, I never picked 10 because no matter how bad the pain was, I’ve thought, I’m sure it could be worse. It could always be worse. This February I would have picked 10. This is not a pity post–and I’ve written my fair share. It’s an awareness piece, I suppose, about trigeminal neuralgia. Look around the Internet and you’ll find few people talking about it.

Apparently only 1 in 15,000-20,000 people are affected. The medical sites and Wikipedia say trigeminal neuralgia is thought to be one of the most painful disorders known to mankind. Some call it the suicide disease because the pain is literally unbearable.

My pain started in 2007. At random, I’d get a shocking strike to the right side of my face in my lower jaw. Maybe I’d eat something sweet, maybe I’d bend over to kiss Eleanor or Magnolia to say goodnight, maybe I’d lean over the sink to brush my teeth, maybe I’d laugh or talk or touch my teeth together wrong or maybe I’d do nothing at all. One day when I was running, I dropped to my knees with this electric strike of pain in my face I didn’t understand. It lasted about a minute and then suddenly I was pain free, and I finished my run. The more frequently it happened, the more I was convinced it was a toothache.

I saw two dentists, an oral surgeon, and an endodontist. No one could find anything wrong with my teeth. In 2008, one caring dentist and friend said he’d refill my tooth. It seemed to work. I was pain free for almost a year. In the winter of 2009, the pain was back. I did another tour of dentists and specialists who again refused to touch my teeth. My dentist friend said he’d put a crown on my tooth. It seemed to work. I was pain free for about three months. Then the strikes of pain came back. I would have asked my friend to pull my tooth, but I’d moved to Indianapolis.

The pain seemed to magically disappear in Indianapolis. Then in winter of 2010, the attacks were back. My dentist here refused to pull my tooth, and I was pissed! I would have done about anything to not feel the strikes of pain. I didn’t want to eat, speak, or move my face at all; I’d learned to fear these things deeply. I could avoid those things by doing nothing–by sitting and not moving an inch–but I’d have to stand up at some point, and just standing up might trigger a strike. I lived in fear of this and didn’t want anyone to touch me. At one of my begging sessions at the dentist, he mentioned neuralgia, but it was rare and affected mostly people over 50.

I was so convinced it was a bad tooth that I basically cursed my (very kind) dentist and lived with the pain throughout winter. When the strikes stopped happening in spring, I began to notice the pattern. Strikes in winter. Reprieve until May. Strikes for a month or two. Reprieve until winter. Right on schedule, in winter of 2011 the strikes came back.

They were worse than ever before. They could last up to ten minutes. It was paralyzing. I couldn’t believe I wasn’t dying. My lips, tongue, and even my ear would go pins and needles around the explosion of pain in my jaw, I would drool because my salivary glands were going nuts, and breathing was more like gasping. When it was over I needed to cry because of the tension I’d had waiting for the strike to happen and the ordeal of going through it. I was embarrassed for some reason, too. I think it was because when the strike was over, I was completely pain free. To the outsider, it had to look ridiculous and confusing to see me paralyzed with pain and then suddenly ready for a night out on the town. Except I was afraid of going out–afraid of having an attack in public, or while driving, or at work, or in front of the kids.

One night after an attack, Josh sat rubbing my back, and said, “Well, at least you don’t have trigeminal neuralgia. It’s so bad, they call it the suicide disease.”

I remembered my dentist saying neuralgia, and I decided it was time time to see a neurologist. Twenty minutes into the appointment, he diagnosed me with trigeminal neuralgia. I would have laughed, but I was terrified of the possible pain. I did call Josh later to inform I had the suicide disease. He didn’t laugh either.

At least there was hope for treatment. I could finally label this pain! The weird thing is, you can’t just take some Tylenol to help the pain pass. Narcotics don’t cut the pain either–don’t even lessen it. My doctor put me on an anti-convulsant, which takes some time to build up and affect my system. But, that winter the meds kicked in, and I could tell that they were working. I had a weird dull ticking in my “tooth” but it never led to an attack. I became pain-free by the end of February.

It’s now May, and the strikes are back. The meds seem to help somewhat, but not like before. They attacks don’t last as long–only a few seconds–and I can get through them, but I still look ridiculous, flinching and freezing, and fearing the next one. I hate when it happens in front of the girls. Josh has a new joke though: “Sorry about your face.” I think I need a t-shirt for him.

If you’re curious, here’s a photo of the  big trigeminal nerve; it splits into three. For me, the offender is the V3, which branches down through the lower jaw. I circled it. The arrows point to the regions where I feel the attacks.

Anyway, I’m starting to think about Microvascular Decompession surgery. It’s a tough decision because surgery is always a risk. But this one in particular requires a small part of the skull being removed and a small part of the brain and brain stem being exposed in order to place a tiny sponge around the nerve to separate it from blood vessels that may be wrapped around the nerve. Not the most inviting of treatment options. Many folks in my support group have had this procedure and have been pain free for years. Of course, there are a couple who have gone through it and found no relief. I’m still in the research stages of this treatment option. When I’m in a period of attacks, it seems worth it. When I’m not, it seems risky. Then I think about the dread of an oncoming attack and the way the fear stops me from laughing, smiling, talking, kissing my family, and sometimes driving or even going to work; and it seems like it’d be worth a try. I’ll let you know what I decide.

Published by jody sparks

Jody Sparks Mugele spent her first career in marketing writing and leading teams of writers and editors. After her son came out as transgender in 2015, she dedicated herself to advocating for the rights of the LGBTQ+ community. For two years, she led the Indianapolis regional chapter of PFLAG, a nationally renowned LGBTQ+ advocacy group. She has given many conference talks about parenting trans kids, healthcare in the trans community, and suicidality among LGBTQ+ youth. And with GenderNexus, an Indianapolis-based advocacy organization, she created programming and led support groups to work with parents to help their children through all aspects of gender transition. She recently moved to Northeast Georgia where she is excited to develop opportunities to continue to strongly and proudly advocate for LGBTQ+ members of our society. She also LOVES kitschy Christmas crafting!

9 thoughts on “Trigeminal Neuralgia: Ultimate Negative Reinforcement

  1. So sorry you’re going through this Jody. I didn’t know you had this in Michigan. I hope you figure out a way to either control it or get rid of it. Keep us posted.

    1. Thanks, Natalie. By the way, I’m going to try to convince my critique group to go to the MI Fall Conference. I also heard that there will be a Midwest Conference, which combines IN and MI and maybe OH? I can’t remember, but I very much hope to see you this year! Even if you don’t go to the conference, if I’m nearby, I’ll get in touch.

      1. Let me know if you go to the Fall conference. I’m trying to save money so was thinking of not going even though it’s in Detroit. But would go if you do. I’m saving my money for the Indiana conference. I heard it’s in the Spring and it sounds like it could be awesome.

      2. I will definitely go to the Indiana conference! So, we can meet up there for sure. I’ll let you know asap if I go to the Fall conference in MI.

  2. O Jody!!!! I hurt for you…. i know you mentioned this when we were up there, but it didn’t register then, how desperate this is! My heart hurts for you. I wish there were something i could do…..
    please know i love you …………

    1. Jan, I definitely know you love me! It was not bothering me at all while you were here, and I grateful that I got to spend time with you and Bob pain-free!

  3. Oh Jody, that’s so terrible. This was such an honest, insightful post, and it put me right in your shoes imagining the fear and dread and pain. I so hope you get some relief soon.

    1. Thanks, Kristin. I love the support and appreciate you continuing to read my blog! I told Natalie in a comment that I hope to get back up to the Ann Arbor area before the year is over. I most definitely hope our paths will cross at a conference!

  4. Oh my goodness, Jody – that’s horrible. Absolutely horrible. I hope very much that things improve for you in the future, and will be thinking of you.

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