It has undeniably been a long while since I last wrote here. A whole lot has happened since then and I’ve tried writing posts a few posts since. None have really come to completion for one reason or another. They had loose ends, the flow just stopped, or I simply got distracted by other things in life. This post is happening though, I’m promising that to myself. I really need to vent after some of what has happened health wise over the past few months, and this is one of my avenues for doing so.

First of all the biggest health change in the last few months is this great discovery — I technically do not have migraines. You read that right, it’s not migraines. While that could be good news, it sadly is not. Instead of having classical migraines I’m now stuck in what I like to call “diagnosis limbo”. I like to describe it as a state of not having a defined diagnosis for the symptoms that are presenting. It’s when the doctors get to have fun tossing the patient between specialist as they all don’t want to be the one to make the diagnosis or have to give the care. Patients like me scare doctors, but why we do is another story entirely. Anyway, before I speculate on what I believe is actually wrong with me I want to explain how my symptoms have moved away from classical migraine and into the currently unknown.

The past few months have been a very rapid evolution of my symptoms from somewhat classical migraines to current state. In my first few posts I talked about what classical migraines look and feel like, and about some of the typical medical solutions for them, in case a quick refresher is needed. While I rarely ever had exclusively classical migraines, I now have nearly none of the classical migraine symptoms with my headaches. This is particularly interesting when you consider that I’ve never been evaluated for any other form of headaches in the 8+ years I had the chronic migraine diagnosis. Yet I frequent the ER on average 6 times a year for head pain. That frequency of ER visits is fairly consistent with the frequency a cluster headache patient may been seen in the ER, less so a migraine patient. Not that I’m saying I have cluster headaches, yet.

To make the process of properly diagnosis more complex, my daily pain has progressed over the past few months to more severe pain. As opposed to being a very low level headache that was simple to ignore most day I now have a dull aching pain in my upper jaw every day. This pain is not like any pain I have ever felt before. It’s an absolutely mind numbing type of pain that eats away at you slowly. Describing it is difficult because there is literally nothing like it I have felt. If I absolutely had to I’d say it’s a feeling of pieces of my face missing or being removed, combined with teeth being pulled with no anaesthesia, with little air pockets are being inflated under the teeth, while my jaw is in a vice from the sides, and I’m chewing aluminum foil. All at the same time, plus the occasional lightning bolt of pain from my jaw up the side of my face, or down my neck, or to my eye. It’s terrible, and I would not wish it on even my worse enemy.

I bet you’re wondering what the fuck could cause pain like that, right? I mentioned cluster headaches and that was my initial suspicion when things started to progress, but the symptoms don’t quite fit. The likely culprit seems to be something called Trigeminal Neuralgia, specifically atypical trigeminal neuralgia, or type 2. Every ER doctor I have seen for the face pain agrees with me and my response, or lack there of, to treatments agrees as well. Sadly though, my neurologist disagrees with the trigeminal neuralgia diagnosis and instead thinks I have a very rare headache condition called SUNCT for which I fit almost none of the symptoms besides pain. Luckily I’ll be seeing more specialists here soon as the doctors play their game of pass the patient to sort out the proper diagnosis. Until then though while in diagnosis limbo I’m stuck with the annoying prospect of improper treatment because I lack the proper diagnosis. With something as painful as trigeminal neuralgia that’s a really scary thought.

Another downside to being in such pain so frequently is the medicine. I have not gone a day without some form of pain medication in about three months. Even worse, I think I’ve been on opiates for the last two months straight because of the pain. My dose keeps increasing too because my body is building a tolerance. Sadly, at this point I don’t know what else to do though. The options seem to be take the medication to distract me from this pain, or a fate likely far worse that I’d rather not consider. I just hope doctors will keep giving me sufficient medication to keep this at bay. This sudden shift for the worse has really been a huge punch in the face for me, literally pain wise, emotionally, and physically. I never thought chronic pain could take so much out of a person…