@spiny, Shaun, Dallas, CHFather, jon, et.al. Thank you for the lovely welcome and the great information.
I feel like I am at the very first day of something that has already lasted forever. I am a little desperate, a lot confused. Grateful. And scared.
I want to understand more about what made my new Dr., the headache specialist, call this atypical cluster. I have always described my headaches as lasting 30 to 54 hours. I think that is part of the reason a proper diagnosis has always been so elusive. I get that cluster headaches-- by definition-- do not last this long. The actual pain I feel (death-spike behind my eyeball), what happens in my face (droopy eyelid, nose running on the headache side, face flushing), what helps (sitting in the shower, oscillating the water from freezing to scalding, writhing, rocking, pushing ice against the roof of mouth), all of these things fit cluster perfectly. But this experience of what happens to me.... is this "atypical cluster" or do I still not know what is wrong with my brain that creates such an unbearable pain? Is this even the right diagnosis?
I experience the headaches as lasting 1 1/2 to 3 days. That's not cluster, or is it? So what I call the headache starts with a feeling of lead in my head, a heaviness, with a pressure behind the eye on the side the headache will eventually come. My eyelid starts drooping. I get so overwhelmed with fear and dread. The pain is like a 3 or 4. I feel exhausted-- but is the exhaustion just dread sapping my will, or is it that everything in me just starts shutting down preparing for the ice pick?
Then the ice pick. The first one is maybe 3 to 6 hours after the heaviness and the level 3 or 4 pressure started. The ice pick phase lasts 45 minutes, maybe an hour or an hour and half at the longest. Pain level 9 or 10. Is this the cluster headache? If I am asleep it wakes me up. (It's way worse at night).
When the first ice pick is over, things go back to a 3 or 4. Sometimes a 5. Sometimes a 1. I am not crying anymore. I don't need to lie in a ball on the shower floor. I get an hour, or two, or sometimes even four hours of level 3 or 4 pain, and always the pressure behind my eye, but I can handle that, I'll even fall asleep sometimes. Then, the next ice pick comes. It again lasts an hour or so. Unbearable. Then a return to the lead and the low-grade pressure, the level 1, 2, 3 or 4. I fall asleep with head wrapped in ice packs... until I wake up to another ice pick being pushed through the back of my eye-- level 9, level 10 and sometimes I throw up the pain is so bad. It's not that the headache makes me nauseous, it's that my body simply can't take the pain. The nightmarish ice pick in my brain, being shoved through the back of my eyeball. The pain is unlike anything else... I writhe, clutch my head, cry but try to not scream (I am so worried about scaring my kids-- but I can't always control things) Then it ends, I don't even really understand when it's over. I just am suddenly aware that it hurts, but that it doesn't HURT. Things are like a 5 again, I've fallen asleep, or I've stopped rolling around on the shower floor, and now maybe it's back to a 3... sometimes even a 1....
...at a 1 or 2, it's like the death-spike-level-9 had etched a carving where it had been inside my brain, and I can only feel the etching, and this etching doesn't exactly hurt, but doesn't not-hurt either. But it never totally goes away. There is always the lead, the pressure behind my eye, even if it's a 1. The crushing ice pick comes and goes, maybe three of them, maybe four or five, little hour long terror pockets of excruciating pain sandwiched in the two days of non-stop heaviness and etchings. And then, 2ish days later, the whole lead lifts. There is no more heaviness. No more pressure. And I know I am free until the lead and the pressure comes back.
In my mind, the whole thing is the headache. From the minute the pressure comes, to the minute it ends. That's never less than a day, never more than 2 1/2 or 3 days. But it is so confusing. The death-spike that shows up like a demented jack-in-the-box, that death-spike that lasts 45 minutes or an hour, hour and a half, or whatever before it rolls out like a receding tsunami leaving the etching behind-- this is just a part of the whole hell. To be sure, it is the part of the hell that is unbearable. But it only comes within, as pockets, of the days-long ocean of heaviness, of persistent 3 and 4 level pain that itself is wrapped between pockets of level 1 and level 5 pain.
Am I in the right place? Does it make sense that what I call the "headache" lasts days, with the lead, and the pressure, and the etchings is cluster? Is this what makes it atypical? Or do cluster headaches literally exist on their own? Independent? Not wrapped in a days long ordeal? I do not understand.
When the headaches are bad-- or what I call the headaches (ie. I call the whole 1 1/2 to 3 day long ordeals "the headache")-- they come fast and furious, two or 3 in a week, non-stop for months to years. I try everything. Wim Hof breathing, new vitamins, I even have tried "out-there" things like experimenting on myself with a Transcranial direct current stimulation (tDCS) machine, but at the same time, I am also so afraid to try anything. One of the worst headaches of my life was when I tried Imitrex. Beta-blockers did nothing. Opiates give me a rebound headache with more death-spikes that feel even worse (as if that's possible.) And then, sometimes, the universe seems to grant me a short pardon from this pain-prison. I get two months, two and a half months, with no headaches. I'll feel empowered, I'll think I can start making plans again, not being afraid to travel, or make commitments, but (so far) it's always been just a cruel joke. The headaches always come back. WTF. Why do they have to come back? I am so sad, there just aren't words for it... I just got to go a few months (September / October) with no headaches and it was glorious, it was truly so beautiful to not be so afraid every morning. But now they are back and there just aren't words for the pain, for the fear and this ruthless pain.
I am absolutely obsessives about triggers. I haven't had alcohol in 15 years, convinced there was a correlation between the headaches and even half a glass of wine. I methodically eliminated suspected foods, suspected poor sleep patterns. I eat maybe 20 foods now. I don't go to restaurants, I feel crazy about asking about ingredients in recipes when I go to people's houses. I don't even know if all of the foods I've eliminated are actual triggers or not. But the fear of getting another headache has made me suspicious of everything. I micro-manage every aspect of my life. My life feels like a shadow of a life because I have built in so many rigid rules to try to (so unsuccessfully) navigate around the mystery of when the headaches come and when they go. My beliefs about triggers feel as scientifically rigorous as an adherence to a cargo-cult. But I persist, because if even one headache is avoided, it feels like a belief system worth having.
About prescriptions, the headache Dr. said she would work on getting me an rx for medical oxygen. She said this could take weeks to get insurance to cover, and that I needed to be patient. She did not bring up Verapamil or Prednisone. I have never discussed either of these with any dr. I've seen. The plan was I take 3 Emgality shots each month from now until Feb and get the Oxygen, and then have a follow-up appt in Feb to see how that combo is working. She also said I could come in to the clinic for a nerve block if I decided to try that.
Thanks for listening, oh my gosh this got long,... and thanks for thoughts on if this does sound like "atypical cluster" or if I need to keep searching for a diagnosis, with my thought (perhaps delusional) that a correct diagnosis can act like a magical key, unlocking some set of solutions or some set of partial reprieves that can make this bearable or (one can dream) better. Thank you for your kindness.