The Latest Flare

Sometimes things don’t really go to plan. I had planned on having the house cleaned and the bathroom fixed; I had planned on posting all about my amazing birthday; I had planned to lose a bunch of weight before our Bali trip and be all Ultimate Butterfly Princess for social media photos (it’s the dream), but… life happens. The particular brand of life that happened in the last eight weeks was not my favourite, but I can finally say that things seem to be getting better. Let me go back to the beginning.

In mid-August, I started getting fairly regular trigeminal neuralgia attacks. It didn’t bother me too much – when it happens all the time, you kind of build up a tolerance to it, and it becomes normal to function with a certain cloud of pain over you most of the time. Not ideal. But it was bearable until the first week of September, when it started getting much worse. I started taking medication and tried to just grin and bear it. Until late-September when suddenly all hell broke loose.

I don’t want to go through all the gory details. But the pain was unbelievable. I ended up going to hospital and being drugged out of my mind for over a week. I still can’t remember the exact sequence of events because the whole week felt like I was in a coma. I barely got out of bed, barely ate or drank, could not do anything at all except look at my phone for 5 minute intervals here and there.

But let’s focus on what’s important: I am so much better now. I am still feeling weak and tired with a lot of clumsiness and cognitive confusion (that is likely from medication), but almost zero pain. I am so grateful for this, but also freaking out a bit. I like to plan things, a lot, and suddenly I’m realizing that I don’t have the degree of control that I previously thought. A lot of my future plans are up in the air because I just can’t count on the future looking how I imagine. My brain is full of ideas (buy the nice plates! go to Taiwan! stop worrying so much!) that are clashing with a bunch of other ideas (now that you’re good again, you should work out, take your vitamins and do mindfulness every day so you’ll never take ‘being well’ for granted again)… I’m sure I’ll find balance somehow, but it’s such a strange time.

A Little Bit About Trigeminal Neuralgia

It’s past midnight and Nathan is watching English ghost documentaries on Netflix, I don’t want to go to sleep. Which is ridiculous, because sleep is the only time that I’m protected from having TN attacks. The nerve started showing little signs of agitation today – two brief 5/10 type 1 attacks, with an undercurrent of type 2 2-3/10 ever since. Nearly always in the maxillary nerve, sometimes in the opthalmic, only very occasionally in the mandibular. The skin on my right cheek feels like it’s slightly sunburned, and certain teeth keep throbbing, especially when I chew or drink cold things.

But all in all, this is not bad at all. In fact, I should be grateful, because I know how much worse it can get. But these little attacks are always scary because you never know whether it’s ramping up to something much more terrifying.

I still can’t describe exactly what it’s like, at its worst. Something like getting electrocuted or shot in the face, something like having the bones ripped out of your face with no anaesthetic, something like having lava poured all over your face. The first time it happened, I thought I was having a stroke. It was so incapacitating that I couldn’t speak or breathe, only claw at my face while crouched on the bed on all fours like an animal. The only thought I was capable of having was of bashing my head against the bedhead until I died just to make it stop.

I’m lucky though, in that it’s not all the time. Although it’s pretty random when it happens, I’m slowly learning what my triggers are. When I’m in the middle of a flare, chewing, brushing my teeth, touching or washing my face, cold food or air, crying or being upset, tannins in red wine, clenching my jaw, wearing glasses or headbands all have the potential to make it worse, and sometimes stormy weather. We’ve also noticed that both of my biggest, longest, most terrible episodes came in summertime shortly after spending a few weeks in the northern hemisphere’s winter. But it can also be completely random. Sometimes I will be symptom-free for a month and feel prickling all across my cheekbone for no reason. Sometimes that will be all that happens, other times it is a warning that there’s more to come.

At the moment, I take Lyrica and Endone during the bigger, more longer lasting episodes. Unfortunately, Lyrica takes about a week to work and these things are unpredictable. Neither of these medications take the pain away, they just dampen it, and the Endone makes me drowsy. Anything that increases sleep also increases the time that TN can’t touch me. I am worried about the fact that this is a progressive disorder that gets more severe and often stops responding to treatment, but I suppose that’s a bridge I’ll have to cross when I come to it.

What I really wish is that more people knew about TN and understood what it’s about. It gets frustrating when people compare it to a headache or a toothache, and you think, if only. Most medical literature agrees that TN, along with cluster headaches, is the most severe pain experienced by humans. It’s really frustrating when people try to blow it off or act like it’s no big deal or that it’s totally like that time they sprained their finger. I wish that there was more information about young patients, because it’s such a rare disease already, but we are an even rarer cohort. But I wish most of all that people would use their empathy muscles and try to imagine themselves into our shoes – nobody wants to feel like this, but especially nobody wants to feel like the people around them think that they are being a drama queen over nothing. Because it’s definitely not nothing. I think for some people, they would just never understand until it happened to them, but that’s not something I can responsibly wish on anybody.

My hope is that they will find a proper cure in my lifetime. There are treatments available, but not all of them work for everybody, and some of them work for a little while then suddenly stop. There are people who have had the nerve severed entirely, but the pain comes back, and that is terrifying because… then what? Cut your head off? It always scares me that they call it ‘The Suicide Disease’. It also scares me that it is a progressive disease, and because it started so early in me (my first historic symptoms were when I was in my early teens), does this mean it has more years of my life to ruin than if I’d developed it when I was old? Who knows.

What I do notice now is that I feel insanely grateful for periods where I have no symptoms. Sometimes it has even gone on for a couple of months. It’s nice to feel for a while like you don’t have something wrong with you, you can almost forget about the whole thing. But when it is happening, there is always sleep.

^^ This photo was about a week before my first ever type 1 attack. I’d spent the entire month of January in constant pain, certain that I had some sort of massive jaw/wisdom tooth infection. I’d gone to the dentist and begged her to pull some of my teeth out and was in total despair when she told me it wasn’t my teeth. I was popping panadol and nurofen like they were going out of fashion, but they didn’t have the slightest effect. I guess the photo is proof that you never know what kind of pain can be hiding behind a smile.