Pain!!

A Chance Encounter

Well, I was recently back at the privileged mental hospital. It started out as a med adjustment gone wrong, but then my therapist dropped me and the details are extremely cryptic. I do not like that as soon as life gets remotely hard, therapists run away. Their tolerance for stress seems to be lower than that of most friends, which defeats a major purpose of therapy (which is to avoid burdening friends).

So, anyway, there I was in the mental hospital on a cold day (like maybe 50 degrees?) and we were on a creepy “tunnel walk” because it was raining so instead of going outside, we had to walk through the tunnel system which somebody thought to construct underneath all the buildings on campus. It was all fun and games until we were underneath the ketamine lab, which is when it abruptly was just unrealistically hot. Like, hot. Like, humans cannot live very long at that temperature. So I have no idea what these guys were cooking up in the basement, but it felt like it must be very scientific. So then, who do I see walking down the creepy tunnel towards us but… Dr X

Now, I had not seen that man since 2022 when I discharged. I knew he’d moved on up in the world, but I didn’t take him for the type to become a mad scientist. But that is what he looked like. He made not eye contact because clinicians are ethically required to act like they don’t recognize you after they’re not working with you anymore. So he just walked along with a laser focus, dressed all sharp like usual but obviously extremely overheated and his hair uncharacteristically unkempt.

I have full confidence that we are on the cusp of some sort of major psychiatric breakthrough, such as perhaps raising the dead or even reaching the core of consciousness by injecting pure sentience into a beaker. I mean I never saw the movie Flubber (because I was in a cult when it came out) but that’s what it looked like. Anyway, as much as I miss Dr X, it felt good to see him and know he still exists. I hope he even thinks of me.

TMJ

Which, things for me aren’t totally going so hot. I have TMJ (aka TMD, aka Who The 🤬Knows?) When asked when it started, I always have to go back 20 years to when I was an adolescent/minor and my mom signed me up for the orthodontist. I was on board because even a trip to get braces adjusted was more social interaction than I usually got in a week. So they put in this thing that they didn’t agree with each other if it was called a “bite plane” or a “turbo bite,” but it was a chunk of plastic on the roof of my mouth, behind my front teeth. This prevented me from being able to fully close my mouth. At the same time, they had a whole bunch of rubber bands moving my bottom jaw all around and, suffice it to say, I’m pretty sure they forcibly ripped my jaw bone out of the socket. I pointed out to them at every single appointment that my jaw had suddenly started making this extremely loud and disconcerting noise, but they said it was okay because it didn’t hurt. I suggested that it might eventually start to hurt, and they just cheerfully said not to bother about middle age when I was still so young, and “at least you’re not a grinder.”

In an ideal world, I would have had actual adults in my life who cared about me and were legally authorized to advocate on my behalf, but I’m pretty sure my mother was hoping something like this would happen, since she was the same woman who routinely shaved my head when I was small. When they first put in the device—before it even began causing TMJ issues—she relayed the story of her brother going to the orthodontist and she said the moved his jaw and he’d been handsome before that but afterwards he was funny-looking. “I’m not going to let them ruin your beautiful face,” she said. I remember this because 1) it was news to me that she thought my face was beautiful and 2) I silently knew even then that I was screwed.

So, over the past several years, I’ve had a zillion massive issues and didn’t know that they had anything to do with the TMJ because nobody checks for TMJ because in my country, your entire head is considered “dental” and insurance doesn’t cover it. So this is what that has looked like:

• I started getting migraines as a teenager, very shortly after the jaw issues started, and now have splotches in the top-right of my field of vision that don’t really go away and that eye doctor says are probably the aura.
• Tension headaches
• Pain behind right eye
• Burning eyes
• I’ve been having a ton of pressure on the front of my neck, right where my thyroid apparently is. They did an ultrasound and my thyroid was fine.
• My ear hurts like hell but they always looked in it and said it was fine.
• When it gets bad, any movement of my face at all is horribly painful. I can’t even describe swallowing.
• It gets massively worse when I’ve been talking, which forces me to isolate and also makes it hard to work.
• My hearing has been off, but I figured it was wax.
• My neck has been hurting
• I get a lot of dizziness. I was always told to just drink more water and stand up slowly. I thought I was insane because often when the vertigo kicked in, I went temporarily deaf in my right ear.
• Over the years, I’ve had a million episodes of “bronchitis” but the x-ray of my lungs was fine. The only thing that worked at all was Cepacol lozenges that numb your throat, so my PCP figured, “It’s all in your throat.” But I mean I lost at least one job because I was out so much. You can’t work with kids if you’re coughing like mad, but you definitely can’t miss work for two months either. Now, I also get throat pain when I’m not sick but they look in my throat and my throat is fine.
• I was having difficulty swallowing shortly before figuring out I had TMJ but I can’t retrieve the details from my brain. Now I have severe pain when I swallow and it makes it hard to eat and drink.
• Sinus issues (sometimes can’t breathe out my nose while lying on my side)
• The sleep study showed that I stopped breathing 27 times/hour so I was given a CPAP machine, which made me realize that it is possible to be awake without wishing I were asleep
• A ton of lost time out of my day because I’m lying on my right side and glued to my hot water bottle, which has been the only thing keeping me functioning at all (to the makers of the YuYu bottle, I still have zero sponsors so hmu).
• It doesn’t help that the painful injury that is now out of control, originally was intentionally inflicted on me by my mother who is sadistic. So I’m trying to find some sort of acceptance, but any and all lost productivity just feels like her “winning” still. Like, just when I’m trying to tell myself that she can’t hurt me anymore…

I feel dumb that I didn’t figure this how sooner, but now that I have, how do you answer the question, “How long has this been going on?” when you’ve had this many symptoms that have been appearing and getting progressively worse for the past 20 years? Honestly, I’d just been going about my life thinking I was mental because they had done every test available (except the ones covered by dental insurance) and everything was 100% fine. It’s honestly possible that there’s even more going on because TMJ problems can upset the vagus nerve, exacerbate anxiety (which I would definitely have anyway so I don’t need more), and in a lot of ways, it’s hard to parse out what’s TMJ issues and what’s just my massive, over-arching complex trauma disorder.

I finally figured out the problem when I went to the dentist and he checked my jaw and immediately referred me to an oral surgeon. Unfortunately, nobody he recommended took my insurance, so my appointment isn’t until October. In the meantime, I’m in physical therapy. It hasn’t started except for the intake, but she gave me a whole form to fill out and I felt so seen. I knew I had a ton of sensitivity around my mouth, my tongue went forward too far and the tip always got cut up from forcing itself between my top and bottom teeth, etc.

Maybe if all of this hadn’t been thrown under the umbrella of dental, my providers would have been able to actually help me sooner. We’ve all known this whole time that I had TMJ, it was just—you know—dental. Anyway, I’m pretty sure my poor PCP feels bad because he scheduled an emergency appointment when I told him (honestly) that the pain was making me question my will to live. Personally, I think this was a huge part of the issue in 2021, because one time when I was in the hospital and at exactly 5pm on a Friday when all the doctors went home, all my muscles started contracting and I was in astronomical pain. I cried when it was over because I thought nothing in life would ever seem significant ever again after learning that that kind of pain was possible. I remember I couldn’t talk when it was going on because, like, I couldn’t talk anyway because I had aphasia from a massive dissociative episode. But during this sub-episode, I couldn’t move my jaw so I was just screaming. My eyes were bulged out massively, but it was impossible that I’d developed instant-onset Grave’s disease. My eyes were the most painful part of the whole thing, just completely bloodshot, both bulging like in a horror movie but one bulging more than the other, and I couldn’t get them back into my head. When the TMJ gets bad again, it feels like that and that makes me question life because if I’m in that kind of pain, no way am I going to be able to work and hold down a living. Anyway, after the 2021 episode, poor Dr X searched all available literature to figure out what was going on while he wasn’t in the building, only to come up dry. Which makes sense because it would have been in the “dental” literature. If he reads this, at least the mystery is solved. Given all the other extremely rare dissociative issues that were happening at the same time, there’s absolutely no way that any doctor anywhere would have thought to call up their friend the dentist to see if they knew anything about the problem. Besides, for all I know, he’s figured it out and that’s what he’s cooking up the solution to in the basement. (TBH, I feel bad that my “I saw Dr X!” post is the same post as my “TMJ” post, but I’m already posting enough life updates today and really couldn’t make them all separate posts. Sometimes I put off blogging for a while and everything kind of comes to a head.)

In the meantime, I really really wish I could get more information from doctors and less information from YouTube, but as I mentioned, the oral surgeon can’t see me until October.  I always thought there would be some sort of magic technique if I suddenly developed chronic pain, like maybe breathing exercises or visualization, but now I’m finding out that basically, it just sucks. The dentist offered to make a night guard that he said would work, but it cost $400 so I had to call up my little brother the Republican whose trauma manifests differently and thus has more money than I do. I can pick that up this week. I’ll be starting PT soon. I’ve been alternating between NSAIDs and Tylenol, alternating between topical diclofenac and topical “herbal remedy,” applying heat, and sometimes they give me something for spasms. I am extremely unclear if I’m supposed to be taking Tizanidine or Flexeril, and how often, so hopefully the PCP can clear that up. Tricyclic antidepressants always show up on the articles that the urgent care pulls up in the office, but they’ve pointed out that I’m already on basically every other antidepressant on the market, which is fair. Honestly, I am highly unclear on a lot of things about the treatment plan. For example, am I supposed to be stopping the diclofenac and using lidocaine? Does it matter if I take naproxen or ibuprofen? Nobody knows. I just keep going to urgent care or calling the on-call or talking to the longsuffering medical team in the mental hospital and they move things around and nothing really changes, because nobody can do anything except the face doctor who I don’t see until freaking October.

So, you know, I’m dying. In good news, as with basically everything else on my body, when my mental health is better, it hurts less. It’s insane how much of my physical problems have turned out to be psychosomatic. I probably would’ve been a really healthy person if it hadn’t been for PTSD. Then I feel bad because I’ll be spamming the longsuffering PCP about how I’m in eye-crossing pain and then eventually when I get my trauma symptoms under control, I’m okay without any actual physiological interventions. Too bad my 🤬 therapist got flighty, right???