Thank you for your response! I have indeed seen a neurologist, who wrote the prescription for oxygen, diagnosed me with cluster headaches, and ordered blood work (result: vitamin D deficiency plus a couple other abnormal readings around inflammation) and an MRI (result: totally fine). I have to admit, though, there have been a few times where I've wondered if I'm facing something other than a cluster headache.
Other than knowing that the pain definitely gets worse in the later parts of the day, I can't actually identify starts or ends to discrete, separate headaches. It's much more of a constant pain that just varies in intensity, which seems different from how most people discuss cluster headaches (in terms of regularity and having periods in-between where they feel okay).
Admittedly I also sometimes wonder if my neurologist doesn't have a ton of experience with these types of headaches that are more rare. He didn't have any recommendations for filling the oxygen prescription, I actually had to ask him about trying oxygen a few days after our appointment, and the front office person said that he'd never had a cluster patient there before. Unfortunately every other neurologist in my city was booked until August, so I didn't have many other options. I'm a couple hours from DC, so I sometimes still wonder about getting a second opinion from someone up there, especially if this might actually be something different from cluster headaches. (He never mentioned anything about other trigeminal headaches or gabapentin.)
I'm also happy to lay everything out, since the symptoms have kinda shifted over time (and apologies if this winds up being overkill)!
Week 1
Not a cluster headache at all, actually, but a vestibular migraine (we think). Came on out of nowhere as intense vertigo, motion sensitivity, and some ringing in the ears, but no actual headache. 99% sure that the cause was months of stretching myself too thin with work and international travel; I just reached a point of getting so overwhelmed and not being able to mentally rest, and it felt like I just hit my breaking point.
Week 2
Dizziness and other migraine issues started to subside, and in its place came the constant pain at the back of my neck and a weird numbness/pressure in the left side of my face, especially the jaw and cheekbone (and less behind the eye). PCP had me go to the ER because I reported that my mouth would sometimes hang open from the pain. CT scan was fine, and the steroid they gave me relieved some of the pressure behind my eye.
Oral triptans also made things significantly worse. I can't remember if it was sumatriptan or taratriptan (I tried both), but one of the two made the pain so brutal that I almost couldn't stand (and I have a pretty high tolerance for physical pain). Nurtec provides some relief, but it's fairly short-lived.
Week 3(?)
Short-term prednisone course provided some relief, though I of course had to taper off. Symptoms also started to gradually move down my face (while staying present in the back of my neck), residing a lot more in the left jaw than further up the face. Sometimes would be a particularly painful sort of throbbing.
Week 5(?) to Present
Facial pain continued to shift downwards into my neck. Weird knot in the left side of my neck for a few days, though it never got particularly painful; just odd, especially since the pain would sometimes extend down into my upper collarbone area on the left side.
Evenings are still quite tough, but even though the symptoms have moved multiple times, it does at least feel like I'm very very slowly improving? The vitamin D regimen feels like it's helping, cardio helps if I can push past the pain and go to the gym.
I'm in a pretty good amount of pain right now, but it's odd to note that it doesn't feel quite as unilateral as it used to. Back of the neck is still the epicenter, but the frontal pain now feels like it's more both jaws and both shoulders--again, the weird "working its way down and out" metaphor comes to mind.
