Four days in
I'm not sure exactly when my pain started, but it was last friday to the day that I realised I needed to get help. I thought it was my wisdom teeth and went to the dentist. I feel awful; I was definitely rude to the receptionist when I refused to fill out the updated patient form: I don't know how relevant it is, but I also have ADHD, and I struggled to barely write my name before I probably too assertively just refused to fill it out. I literally just couldn't.
The dentist got me to go a couple of blocks to get an X-ray of my wisdom teeth, which was also extremely difficult in what was at this point four days in to the attack that led to me being diagnostically prescribed carbamazepine by a doctor who did not stop googling for one second when I spoke to him. Thank god for that, I guess.
Once the dentist gave me the all-clear without putting any effort whatsoever into understanding what was going on besides what he decided was his very narrow health mandate in this situation, I went straight to the ER at St Vincent's hospital in Melbourne (I'm Australian).
After waiting for maybe an hour and a half, I was assessed by a nurse who at first gave me oxycodone while I sat back in the waiting area for my blood test results, which showed nothing. Two hours later I went up, and a new nurse took me inside to be more comfortable, and eventually a doctor came and assessed me (without using Google, which means he was literally clueless). At the hospital I was given the option of either staying late and waiting to do a CT scan or going home and coming back to do an ultrasound of my face and neck the next morning. I chose the latter option, but I had to take the ultrasound back to the ER and wait for hours until someone could read it.
The next day, the idea of going back to the ER with a blank slate overwhelmed my executive function, and instead I just made a regular appointment with a GP later that day.
That GP immediately started theorising about my jaw joint and mentioned TN quite early on in our discussion as he busily googled and read Google Gemini's summaries of his search queries. He prescribed me carbamazepine almost on a whim right at the end of the appointment after finally ruling out a competing theory he developed about a connection between my jaw and my antipsychotics (which amazingly was a real thing according to Google Gemini).
I'm not exactly sure how diagnosis officially works or whether I've been formally diagnosed, and I just told my adhd doctor that I had it, and he just believed me after hearing my symptoms and how they responded to the carpa (which was very well!).
Carbamazepine is a pretty intense medication. I took two 100mg and was worried that it wasn't working when the feeling of needing to pass out and the miraculous disappearing buzzing from my jaw occurred at the same time about two hours in. I quite literally had a panic attack because of how the medication shut down my central nervous system that first night; as much as I felt enormous pain relief, I don't like being forced to pass out. I called my sister and rode it out. My cat helped too by climbing onto the bed at a convenient time for anti-panic-attack snuggles.
I've adjusted to the drowsiness impact of the medication quickly, but I'm having trouble with dosing. My attack is ongoing and severe. I feel the very earliest stages of the nerve coming back to life and firing off warning signals that it wants to cause me pain, and the initial dosage schedule set out by the doctor who accurately guessed tm was nowhere near sufficient at 1 to 2 100mg pills every twelve hours. The morning after I first went on the medication, I woke up at 4 am with a near full attack back in my face, and went about the usual coping mechanisms I'd developed for the better part of the past week to accept it for a couple of hours until the carpa kicked back in.
Now I'm over the stage of having initially responded to the *worst fucking pain* I've felt since I snapped the growth plate in my ankle in two when I was nine years old and onto a new stage. That stage naturally led me to find a reddit group of people who suffer from TN as I now do. I'm neurodivergent, and I've long identified as having a disability, but now I have to come to terms with the fact that I have a chronic illness, and a famously painful one that isn't easy to treat. Fuck, it sucks. It really is shit. For me, and for all of you.
For all of us speaking, I guess, to mother nature herself, what the **actual fuck**, bro, is this bullshit?
*FUCK*
I've really realised I need to talk to people about this because when I talk to AI, it *freaks out* and makes me feel like I should be freaking out more. My mum is in total denial still. Anthropic's Claude (which *really* needs to improve its bedside manner) told me what this condition was traditionally called before treatment was available, and I looked it up, and it's true, though I won't repeat it here because it's so upsetting.
I took the week off work; I literally cannot afford to do that again next week.
It might not surprise you coming to the end of this self-indulgent story rant that I could literally go on forever right now. I actually tried to make this sort of entertaining, which was an uphill battle given the subject matter. Anyway, last week my face hurt, and this week I'm one of you, and my face would hurt if it wasn't for epilepsy medication!
Literally.