JMK

Last time I had an episode was 2019. It was the first time I'd been prescribed the sumatriptan auto-injections, and I don't recall having had especial difficulty getting the rx filled. But for the current episode, which started about a month back, the difficulty of reliably obtaining them has basically added another layer of misery to a situation already abundant with it. Do others run into this? Is there a reason why pharmacies would be unlikely/unwilling to keep sumatriptan in stock? Or is it that demand for it is that great?

You mention your left Eustachian tube--is that the same side you experience the headaches? I'm curious because I've experienced that sort of sensation in my left ear as well (my headaches occur on the right side of my head). To be sure, a characteristic sensation for me when I'm experiencing shadows is that of head pressure, like swimming to the bottom in the deep end of a pool, so my ears are just part of that. But it's also the case that even when the overall sensation of head pressure has diminished, my left ear will continue to feel a bit odd, as though there's fluid. Do any of the medications document potential auditory side effects? The overall description you give of your CH episodes sounds quite similar to my own. For years before I knew anything about CH, let alone had been diagnosed, I believed the headaches to be sinus related, as just about every health related aggravation in my life has always seemed more or less allergy/sinus related. The interval for my episodes were along the same lines, although my recollection is that the worst ones happened in the summer, when the heat and humidity were at their worst. Sometimes a given episode didn't amount to much more than a period of what's referred to as shadows, and I'd always imagine my skull as a kind of barometer, it seemed so sensitive to shifts in the weather.

To be sure I'm understanding what's meant by "shadows," you mean essentially sensations that ordinarily announce the onset of an attack, or what often persists after an attack has backed down? If so, that's certainly what I've experienced for most of this week. It's like just enough to keep me from a rash thought such as "hey, maybe it's over". To be sure, even though several days have passed without full-throttle pain, I frequently get close ... so there's a gradation. And I mean, sure, there's a huge difference between agony and discomfort, but it can stop any time now!

My first recollection of CH dates to around 1987, and, like so many, knew nothing of CH for decades. Partly because the timing of my episodes almost always coincided with the misery that is high summer in the mid-Atlantic region of the US, when the atmosphere itself seemed as congested and distended as my head felt, I assumed for years that sinus headaches afflicted me and consumed decongestants in such quantities it's a wonder I wasn't suspected as a producer of crystal meth. Episodes would last weeks I guess, but the frequency of attacks was such that I could continue deluding myself about what was going on--let's say a bad day would be waking early morning (5-ish) either in the grip of a headache or rapidly heading to one. Then a reappearance late afternoon. But over the past decade the pattern has evolved such that 9:00-10:00 p.m. has become the customary witching hour, and when an episode plays out, with attacks following their waxing and waning pattern, that time of day more or less remains home base. Here's why CH induces such psychological distress: attacks will occur with an uncanny regularity that you can set your watch to, and you therefore spend a chunk of your day in expectant dread of that hour, whatever it is. Then there comes a day when that hour goes by and no attack occurs. Ha! The joke's on you again! Did you make the mistake of expecting punctuality? Oh, the irony of a malady so unusual in its circadian tendency that it's become one of the diagnostic criteria, and which nonetheless will likely as not fail to adhere to that behavior ... As the other responses have more or less asserted: ultimately, you will find that the rhythm of both episodes and attacks within a given episode will never truly conform to a dependable pattern. What's more, you arguably worsen your own anxiety by expecting them to do so and then finding they don't. Hang in there. Sometimes I find some comfort reflecting on the fact that, for once, the pain you're experiencing is only that, whereas pain otherwise is most often a warning of a problem. And of course that reflection might also make me grind my teeth at the utter "pointlessness" of excruciating pain that's about nothing.