Undiagnosed severe chronic beyond cluster headaches

[Dane]

I have suffered with cluster headaches from birth. I am glad to have finally started trying to help myself. I almost ended it several times. Sometimes mine last for 2-3 days. Does anyone else have this kind of prolonged agony? As far as triggers, my head-quakes are a sneaky bunch. Never found any corresponding events, smells, or activities that triggered. Only that when I first even THINK I am feeling one coming on, I take BC powder, begin massaging my temples, get AWAY from people,noise, light or anything that affects my sense, even smell. Then I brace for the inevitable. A steaming hot rag (I used to turn my water heater up as soon as symptoms arose) across, and pushed against, my eyes is so far my only respite. Only thing rags cool quickly and cold makes mine worse. Then a blind, stumbling, nightmarish ten steps to the faucet. Hot water, repeat until sleep. If no sleep, headaches continue for as long as I take to go unconscious. Any help would be welcome. I have stopped leaving "safe" areas (my home) overnight because I usually get a 3 am wake up call, and begin making gutteral noises and stumbling around

Plus I can somewhat control my environment at home ( no smells, hot water, quiet, dark, no people, etc.). Any input would be welcome. I'm sorry that you are here, but I'm glad I'm not the only one. I am 32 and have had in excess of 100 clusters. The longest was 4 days and nights. I had a gun to my head and, being alone, no one was there to stop me. Any input would be very much appreciated and put to use. I work 6 to 7 days a week to make ends meet. It hits me hard to not work for, say, 2 days. Then a day of silence to recooperate. Anyone tried pyramids or 2-bromo?

[Dane]

Biggest break in case in years. Idiopathic intracranial hypertension. Onset resulting from large amount of tetracycline as a child due to my having contracted pneumonia twice. All self diagnosed. But I think that's fuckin it. Wow. Pneumonia almost killed me as an infant and it has been fuckin with me ever since. Mm mm mm.

[pro2see]

_{Hey Dane, I don't want to speak out turn here or step on anyone's toes. However I use to pop BC powders like they were candy until I figured out a couple things. One being that my headaches would go away before the BC powder actually kicked in good and the second thing is that I believe ( for me at least ) that the BC were triggering more headaches. Since I have stop taking them my daytime attacks have dropped a lot. Sorry you have these things, they are no fun at all.}

[Dane]

Thanks for reply. I know, it seems counter-productive.

  If I don't take BC immediately after first inkling of a symptom(my little helper used to be Dristan Sinus, which no longer helps), I get extremely nauseous. The type of headache I get is magnified 100 fold while vomiting, and the pain brngs around the nausea, vomiting, and around we go. It's a risk I am no longer willing to take. The last time I vomited while in the midst of a really bad attack, I lost consciousness. I actually thought I had died, because the pain was gone. But it had only been a split second, and the blow from hitting the floor had temporarily stopped full on pain. No more.

 Unless facing these nightmares, I never take acetaminophen or nsaids or anti-inflammatories of any kind since my victorious battle with opioids of the worst kind. I face the pain "head on" (hahaha) and on the day I can't, I'll get to see my dad again. So it's not all bad. Good luck out there.