…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.
I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?
My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.
I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.
When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meltdown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?
- The trigeminal nerve is implemented in migraines and facial pain.
- The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
- Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
- And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…
But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.
After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)
The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.
I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.
I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.
Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.
The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.
I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.
If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered. (Not in the US or want more help? Click here.)
♥ a rainbow at night
(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)