Things haven’t been very cash-money lately. I wanted to do a write-up following my first round of Botox last month for my chronic head pain. It was supposed to be hopeful. I thought there might be a finale to this saga that’s lasted 2.5 years and that maybe I could write a tell-all from start to finish, about persevering and overcoming adversity — you know, the cliches.
But this tale’s not over, and despite what some have optimistically said, I don’t know if it ever will be. The horizon looks bleak and the last thing I had in my arsenal — Botox — didn’t work. These are not hopeful times. These are horrid times, to quote Jimmy Eat World. I’m writing this nearly a month after injections and my headaches feel worse than they have in quite a while, the precise opposite of where I thought I’d be about now. This was supposed to be a good summer.
All I keep thinking is that I can’t have Vancouver be like LA. I just can’t. I’m supposed to leave for Vancouver in a week and a bit and I don’t want to be forced to do one of the things I love doing — travel — in the haze of hell because I’m in a pain flare-up where none of the tricks I’ve learnt and finessed over the past couple years is doing anything. This is what happened last December and early January, when I was in Los Angeles and Arizona, incapacitated by pain and unable to do much about it because I was in a foreign country.
At least now I can do things I couldn’t in December. At least things aren’t as bad as then, although this is definitely the worst I’ve felt since early January. Last November, I was referred by my dentist to an orofacial pain clinic run by the School of Dentistry at the UofA, after they found some anomalies on jaw x-rays. They recommended either steroid shots or Botox. I chose the former because they said it’s cheaper and often has longer-lasting results. I was told I could expect a few days of mild pain following the injections but then I should be in the clear.
So I booked an appointment in early December, excited that I might get to go on this trip I was looking forward to after a version of it was cancelled in 2020 and be pain-free for the first time in 2 years. Instead, I got the polar opposite. I had some initial pain, but then it only got worse. Within a week, I was in so much pain from steroids that I couldn’t sleep. I tried contacting the clinic but they were away for Christmas break. Of course.
But I had a bunch of appointments the following week. I made an appointment with a physio-replacement while my usual person was on holidays. That replacement didn't really do anything because she was concerned about it affecting the steroids, which is fair, but it didn’t stop her from charging me the full rate despite the appointment lasting half the usual time. The only useful info I got was that I shouldn’t use heat, only ice, to dull the pain, as heat may inflame the muscles further. Why didn’t they tell me this at the orofacial clinic? I later learnt too that they’re supposed to ice my injection sites for 20 minutes after being given steroids.
I was prescribed some painkillers. Nothing really did the trick, though. Then I got contacts and found some relief from not using my glasses and thought that maybe it was the thing underpinning this the whole time. But of course, the optometrist didn’t want to give me many contacts as this was my first time using them and they wanted to make sure they work properly. So I had to ration them on my 2 week trip, meaning that I spent Christmas — my first full day in LA — quasi-blind.
Things eventually got better. I was still in pain, though, so I put my glasses back on. I realized I was over-stretching and straining my muscles because I took a break for a couple of days and had some relief. But my actual relief didn’t come until I was back in Edmonton. I still feel so bad about how this trip went. It feels like a waste of time and money and I hate how miserable I was when this trip was meant to celebrate me finishing my degree. I still enjoyed things, but it was very dependent on what I was doing and how my head was reacting to it.
When I had a follow-up with the doctor at the orofacial clinic, I expressed my frustration and grievances. He was shocked to hear my terrible reaction — “it’s clear you were reacting poorly to the steroids, but as to why, I have no idea because you’re the first patient of mine this has happened to.” Great. I love to be an anomaly. Not like the other girls (derogatory).
I was suggested to try Botox, but not through their clinic, as it wouldn’t be covered. He said to try through a neurologist because AHS may cover part of it. In the meantime, he prescribed a muscle relaxer that didn’t do anything. So I went to my neurologist, who doesn’t do injections, to be referred to another neurologist who does.
Let me tell you: my first neurologist is the very definition of a clown. He was a terrible doctor wrapped up in a kindhearted individual (which lowers your guard when he persists in his terribleness). During my first appointment with him, in September 2022, he barely listened to my explanation of what’s going on with my headaches. He cut me off and redirected me to explain the migraine treatments I’d pursued in the past. Every time I told him none of those treatments were effective. Every time. He suggested a pill whose name I cannot recall anymore (there’ve been so many pills). When I talked to my GP, who’d referred me to him, he looked at the neuro’s notes, and found a diagnosis: migraine. Now, I’m not against a migraine diagnosis. It’s just that it’s what doctors started with, and they tried me on many migraine-specific meds that did nothing. So I’m a bit over that path. If there was real evidence based on a real understanding of what I’m going through, though, I wouldn’t stubbornly deny the diagnosis. But this neuro half-listened to me, kept nudging me towards his own pre-determined diagnosis, and cut me off before I could explain myself fully. This neuro was not in a place to give a proper diagnosis.
That being said, what I actually have is kind of whatever flavour you want this week. Tension headache. TMJ. TMD (which includes but is not specifically TMJ). Masseter myalgia. Temporal tendonitis. A friend of mine recently said I seem to have the headache equivalent of IBS. Something’s somethening but what that exactly is and why, who the fuck knows.
I agreed to see this clown neuro again to give him another chance. As he’s going over his notes in my follow-up, I have to correct him multiple times because what he wrote that I “told him” wasn’t the right info. Actually no, that isn’t the truth, clown doctor. I’m not suffering from migraines — I’ve had them before and this ain’t it.1 I should’ve never seen him again after this.
Fast forward to January, and three pills later, I’m asking for a referral to a neuro who can actually inject me with something useful. I’m already tired of him and his slow approach to this. He’s so lackadaisical and I need someone to take this seriously. I rant about how things have gone, he doesn’t like my use of the term “fucking” and then tells me that his specialty as a neurologist isn’t even headaches, it’s epilepsy. Of fucking course.
It takes months to get into this new neuro who does actually specialize in headaches, but everything that isn’t physio takes forever with chronic pain. I go to Winnipeg, complete a work contract, come back to Edmonton, and see this new guy in late April. Neuro 2’s a lot better than the last one. He listens, for starters. But he also doesn’t do anything for me. This is the person that came up with the masseter myalgia diagnosis. He said that because his specialty is neurological issues and he believes I’m dealing with a musculature issue, it’s beyond his scope to treat me and even suggested it’d be pointless to go ahead with any other neurologist. Regarding Botox, Neuro 2 said that other places sometimes try to bring patients to people like him because of the potential for AHS coverage, but AHS only covers Botox for neurological issues, not musculature ones. Pedantry is alive and well in healthcare.
The one thing he did do was give me the name of a dental specialist who works with TMJ-related dysfunction and suggested I call her. An hour after our appointment, I call their office, and their receptionist informs me that I need a referral for them to legally make an appointment. Which sounds stupid and unnecessary, but I’m distinctly aware of the hoops the medical system tries to put you through which does nothing for people but give them more headaches. And I’m here to get no headaches, not more of them. Regardless, I call Neuro 2’s office and they say they’ll make a referral.
A week goes by and nothing. How long can a referral take? I call the specialist’s office and they say they haven’t received anything. I call Neuro 2’s office and I’m told it could take up to 2 weeks for the paperwork to be filled. Why? I call back another week later and I’m told by a new receptionist that their office didn’t and wasn’t going to fill out a referral. Per Neuro 2’s notes, which were read out to me, it was suggested that I go back to the orofacial pain clinic, as I’m already in their system, and if I need a second opinion, to go to this specialist and be referred by my GP or Neuro 1 (the clown). Why do doctors say one thing and then write something entirely different down?
The funny thing is that I was already in contact with the orofacial place because my dentist, whom I’d had a regular check-up with, the same place that originally referred me to them, told me to reach out again based on everything that’s transpired. They said the dental specialist that Neuro 2 suggested is the person they normally recommend, but she wasn’t taking new patients last year. However, she runs two operations: her own and at the orofacial pain clinic. Their thinking was, since I was already in their system, I could bypass her office’s “legal requirements” and get an appointment.
Except of course that didn’t happen. This clinic has a phone number but prefers e-mail. It’s the only medical office I’ve witnessed that’s like this. The problem with this is that I reach out to them and it’s clear the receptionist is skimming or half-reading what I’m saying because the response I get is very short, and doesn’t address everything I say, if they address anything at all. Communication is abysmal at this place on so many levels. But after multiple rounds of e-mail that culminate in me finally speaking with someone on the phone, I figure out that I can’t see this dental specialist. She oversees the clinic, but doesn’t treat directly. So I make an appointment with the original guy who gave me steroids in December.
Meanwhile, I also tried a new physio place in the spring. My 4th physiotherapist. I switched because I wanted something akin to what I have in Winnipeg: a physio that specializes in TMJ, just in Edmonton. My previous physio, the 2nd one, was a lovely person who did a lot for me, but by the end, we were both getting frustrated by how little progress I was making. The whole charade felt like half-effective maintenance. I tried this new place that my old chiro recommended to me. Turns out, it’s not just neurological offices that can fall victim to clownery.
Physio #4 felt so unbelievably unhelpful. The appointment was the usual length of 1 hour, but instead of 30-45 minutes of direct work on my body at the hands of a therapist (followed by 15 mins of heat), this guy was with me for 15 minutes tops. The rest of the appointment involved me trying various contraptions (like TENS, which I loathe) while they cycled through an endless parade of clients and relied heavily on support staff to fill gaps. Even the things this therapist did in those 15 minutes felt rushed. Very quick adjustments without taking the time to really dig in and do something meaningful. Did I mention that I’m tired of people not taking this seriously?
After a brief visit to Winnipeg, I made it back to Edmonton for my Botox appointment in early June. I was so optimistic about this. I knew there was a possibility it’d do nothing, but I also knew that for so many chronic headache sufferers it’s the only thing after a long list of treatments that ever did anything. I was told it could take up to 2 weeks for a full effect to be noticed, that I might be a bit sore for a few days (or a bit longer), and if in 2 weeks there’s not much (or any) effect, the clinic could do a top up. They booked me for a follow-up in September (Botox lasts 2-4 months usually, so they book new injections around 3 months later to keep it working). I went home hopeful.
Turns out that was the last shred of hope I had. And now it’s gone. For the first couple weeks, I wasn’t sure if any effect was taking hold. Things seemed like they could possibly be a bit better, but not in an obvious way, and the minor improvement I was feeling could’ve been from something else. Around the 2 week mark, though, my headache frequency ramped back up and things felt normal. Thank god I had a 2-week check-in from my orofacial doctor!
That check-in was abysmal, to say the absolute least. This doc is the king of moving goalposts, I swear. He suggested it could actually take up to 3 or 4 weeks for the full effect of Botox to be noticed. Neat. Regarding a top-up, he steered me towards waiting till my September appointment. He told me (which I already knew) that it sometimes takes a second go for Botox to really help. When I asked what I should do for the summer, he said I could try another muscle relaxer. Did he even hit the right spots, I wonder while questioning his (and his clinic’s) professionalism.
So, I decided to try and get a referral through my GP to that dental specialist because I’m out of ideas and need someone who’ll take this seriously and get me results. That was earlier this week. My GP was a bit weirded out because it seemed strange for him to refer to a dentist of all people, something he never had to do before. When I frustratingly told him that I know how silly this is, that I’m here because the neurologist said to come to you after their office strung me along for weeks only to tell me to try the other place that turned out to be more amateur hour bullshit, he at least understood. He faxed in the referral and gave me a printed copy, which he suggested I could use to go to their office and book an appointment. As luck would have it, I was going to try my 5th physiotherapist later that day and they’re in the same building.
I’m also still waiting for that muscle relaxer script from the orofacial doctor. I e-mailed them about this at the beginning of the week, and also, because on my check-in appointment, the doc suggested that if I have further problems to contact them, I say that it’s been nearly a month and I still see no benefit from Botox. My muscles have normal mobility, so what’s the plan, I ask. The receptionist passes my message on to the doctor directly, and a couple of days later I get a short message asking for my pharmacy’s fax number (which they should have on file as they did fax a script for another muscle relaxer in January). What about everything else I said? It took you this long just to ask for the pharmacy’s contact information? Are y’all for real?
I get to the office building downtown where this dental specialist supposedly practices. I find the floor and room number in the building directory. I get to the floor and meander around until I find the office number on a door. When I go to open it, it’s locked. Weird. So I knock. Twice. And no answer, but I see a buzzer, so I decided to try that instead. It yelps a loud chime on a very austere and quiet floor and I get a bit self-conscious until I notice how quiet it is. There’s no clear views into this specialist’s office, only a couple frosted glass panels framing the door, but it looks dark. I think the lights are out. I try calling them a couple times but after being on hold I get the automated “all of our receptionists are busy, please leave a voicemail.” At the main floor lobby, I ask the security desk if they know anything. They don’t. But I do get condescended to by one of them that “it’s the beginning of July” and “lot’s of offices take the first couple weeks of July off” even though this dentist’s office and her phone line give no indication of that. I call her office one more time because one of the options in their automated menu is location and hours. Maybe Google’s wrong.
Nope. I was in the right building, the right floor, the right office number. I was there within the hours they state they are open. Why is this person so annoying to make an appointment with? I left them a frustrated voicemail because what the fuck? Maybe they’re on vacation like the condescending security guard said, that would make sense, but literally say something, you know?
The only recent good news is what came directly after: the new physio. This guy listened and has a depth of knowledge in TMJ-related traumas to take this seriously. Finally. Unlike Neuro 1, who went ahead and didn’t listen but still felt compelled to misdiagnose me despite headaches being nowhere near his specialty, this guy even said that, while we’ll try things, if we hit roadblocks, there’s other people he’ll refer me to. Wow, a medical professional that knows that sometimes it’s not his turn to talk. He even corroborated my experience at the last physiotherapist, stating that they’re basically a physio mill. When he dry needled me, I felt a glimpse of what my friend (another chronic pain sufferer) told me about ages ago and how intense of a release he felt whenever he went. After a particularly bad week-and-a-half, headache-wise, I actually noticed some improvement after I left his office. Unfortunately, that was undone when I got home and realized the photos I’d taken earlier that day were wrecked because I unknowingly got sunscreen on my lens.
At this point, I’m so frustrated and exhausted by regularized pain. I’m at wit’s end, but I’ve been at wit’s end for years at this point, with small windows of respite and hope. My life feels terrible and unreliable. I can’t just do things with my life in the same way as anybody else and when I do (like when I said fuck it and flew to Los Angeles) it often leads to disastrous results. I may want to move forward with my life, but chronic pain doesn’t care. And nor does the healthcare system, which is underfunded and oriented around acute treatment. If I could give a doctor $100 to properly hear me out as physiotherapists (except #4) have done, would that be an improvement?
And as great as this new physiotherapist seems, I’m not going to have the time to let him work with me consistently until late August. After this upcoming week, I’m in Vancouver, I’m briefly in Edmonton, then, due to circumstances partially out of my control, I’m out of Edmonton again for a month. I need consistency but I’m also so tired of putting my life on hold. I wanna move forward with plans to visit the Netherlands with my dad (another covid-cancelled trip from 2020), but the thought of being in a TMD-induced hell in Gouda doesn’t strike me as appealing.
Of course, I could be fine. I think one of the big aggravators of my US trip in the winter was how much of it involved driving. As fake as it sounds, cars give me headaches. It’s one of the most consistent triggers I have. The days I was down there with minimal driving were also the best days for me. That’s why I have a glimmer of hope that this Vancouver thing won’t be as bad because most of the trip we’ll be getting around on foot or by transit. And walking helps. Usually. And Europe would be precisely zero driving because Benelux is urban planning nirvana. But, as silly as it sounds, the LA-Arizona trip was traumatizing, and I never want that to happen again. Maybe if Vancouver goes ok I’ll feel more confident about it. I don’t know. It’s hard to know with any of this shit. Maybe I’ll do a couple more physio appointments and it’ll neutralize this flare up, then I’ll just walk and SkyTrain my way around Vancity and be ok. There’s still time to turn this ship around, but I’m nevertheless worried. Any progress I make is slow and easily undone. Like what happened literally hours after my initial appointment at Physio #5.
Speaking of slow, what triggered me to write this was realizing that I’m not going to see any new specialist to deal with this until late August at the earliest, for the same reasons that Physio #5 won’t be able to work on me consistently for a while. With how irritating getting an appointment with that dental specialist has gone (over 2 months of dancing), I was considering looking for alternatives in the Edmonton area. Because even if her office gets back to me next week, I’d have to wait at least a week to see her (based on what her receptionist originally told me when I first tried making an appointment in late April), and then what? I’m gone. Getting help for chronic pain moves slower than molasses on a good day, and I know I’m not helping matters. But, like I said, I can’t just continually do nothing with my life.
Explaining all of this to people is vexing in its own way, too. People pry when I’m too exhausted to talk about it, but are uninterested when I want to share. People don’t get it. Or I see their eyes glaze over when I try to explain. I get left on read when asked about it. But people don’t have time for conversations the way they do for Reels these days. They give trite solutions and ask the same questions I’ve been asked a hundred times before. There are only a few people in my life who have any real clue how bad this all is, and none of them are my doctors. Only one’s a friend.
To be honest, chronic pain with no end in sight makes it hard to go on. I can’t keep living like this and yet living like this is ceaseless. I probably have multiple issues working in tandem to cause this regular pain which makes it hard to fix. Doctors get stumped every time I bring up how headphones or earmuffs (of all things) can help mask a headache. Which is why I wear earmuffs in the car…even in July. Physiotherapists get perplexed by how long this is all taking. Bitch, the fuck? Me too. I wish this was resolved on a timeline of months like your average WCB-claimee. You also can’t let on how deleterious headaches are to your daily life because it’ll freak people out. Like I’m sure I did when I told my dad in a fit of frustration I want to kill myself last December in Malibu. At least my stories have fun backdrops. So it’s all a tightrope for my tight muscles and I’m constantly doing somersaults to move the needle a nanometer in my favour.
I know I still have work to do with accepting this as my reality. Acceptance feels like giving up, or giving in, even though it’s just being pragmatic. I know that if I’m less stressed with how all of this is going, and able to marinate in the glimmers of joy among the terribleness of it all, I’ll feel pain less intensely. But it’s hard. I never could’ve imagined being in this situation and people who don’t experience chronic pain really have no idea what this is like. I know I never did when a friend of mine, who’s been a source of real support through this, talked about his long experience with chronic pain years ago. I’d feel bad or hope for the better, but I wouldn’t fully get it because there’s just things you don’t see with invisible problems like this unless it’s happened to you. I can’t keep sitting on my ass hoping doctors will actually do something meaningful, but carrying on with my life feels like a waste. I need to work on that. I need to just let things be, while I still pursue treatment, and have improvements happen as they happen, instead of false hope and expecting the medical system to work properly and as advertised. Let Vancouver just happen, because even if I can’t reliably say I’ll be out of this flare-up, at least there’ll be an ocean breeze and monkey trees. It’s hard to let go, though, especially when pain can be so distracting that I can’t engage fully with real life sometimes, but I gotta. It’s unfair that I have to do this, to accept regular pain as my reality, and somehow keep going, but what’s the alternative? At least the shock of this being my life has finally worn off.
I want to leave this essay on a hopeful note like I often do when I bring up heavier topics. But I’m out of hope. So you don’t get that satisfaction because I don’t either. Chronic pain has worn me down and it’s hard to accept. But I know I need to in order to find some semblance of joy in this life, even though it’s just more work and when things are bad, I don’t have the capacity for it. Maybe things will get better in some indeterminate future, but I can’t see that future anymore. For now, this is my life, as much as I wish it wasn’t, as much I’d rather it not. One thing’s for sure: this really is not my decade.
Yes, I’m aware migraines can present in different ways.