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ClusterBusters

Dane

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Dane last won the day on August 20 2016

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  1. Dane

    Pain level

    It doesn't matter. Nothing helps Sorry to have written such things but I was in distress. Just today, only a couple months since last attack damnit all, I had a minor attack of six hours pass and thankfully I believe it has gone for the night. BC doesn't help pain, just the nausea which causes my pain to jump off any scale. Think my mind and body just can't react and I lose consciousness. I saw several people quote that losing consciousness is not possible with CH. Welcome to the world of IH and ICP, a world of unending nightmare pain.
  2. Dane

    Pain level

    I hate to repeat such a phrase, but the pain I experience is bad enough that after the first 24 -48 hrs of CONSTANT mind ripping, soul splitting, I am no longer me....fireballs of hell exploding in my skull and being gutted with an electric mixer, I become despondent and ultimately suicidal. The worst attack left me briefly unconscious after vomiting for...minutes? Hours? And after a brief delusion of being dead, because pain was gone, it returned on a scale I thought impossible (vomiting during attack is like throwing gas on a nuclear bomb then striking a twenty foot long radioactive match, aka to be avoided at all costs), and only one last thought of my father's smile the last time I saw him stopped me from letting a .38 Ruger sing me to sleep, which almost backfired as I struggled with myself, then dropped the cocked pistol. So yeah. It's a bad pain. I'm pretty tired of it, myself. Been 3 decades, and life's hard enough without this shit. Feel one now dammit. No money. Not even for a cheap "sometimes fix" of ONE DAMN BC POWDER SO I DONT FUCKINg VOMIT GODDAMNIT. oNLY A FUCKING DOLLAR GOTTA WALK A MILE ONLY OTHEr RELIeF is HOt WATER AnD I DONT EVeNHAVe THAT. FUK THiS. I'm SO EXHAUSTED. FUKK. AHHH. HELP
  3. Dane

    List of triggers - please help

    Sorry for late response. It ain't been easy out here... Screenshot from the 3rd Ed. Of the International Classification of Headache Disorders...
  4. 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.
  5. Dane

    Headaches triggered by sleep

    I hate to push pills, but low doses of seroquel (25-50 mg) have saved me from a fight with suicide in hour 40 or 50 of a bad attack. The sleep is the remedy. I cannot stress enough that seroquel is NOT a sleep aid, even though that is often the result. It is an anti-psychotic,and as far as I'm concerned, a powerful one. I left a reply on a newer post with Seroquel in the title. Good luck.
  6. Dane

    Am I going Crazy???

    There are several types of debilitating "head aches". Tension type, migraine, trigeminal autonomic cephalalgias, and " others" are primary headaches. Secondary headaches are numerous. Some are cranial or cervical vascular disorders, non-vascular intracranial disorder (my self-diagnosis), trauma related, due to infection, withdrawal of use of substance, psychiatric disorders, and more. Then there's painful cranial neuropathies. These are facial related pains, or "other" (Burning mouth syndrome, MS related pain, and more). At one point I thought Cluster (a trigeminal autonomic cephalagia primary headache) was the end of the pain road. There are many painful headaches involving, but not limited to, disorders of the eye, mandible, sinus, occipital nerve, etc. The Headache Classification Committee of the International Headache Society has an unbelievably informative, wholly encompassing classification guide. I have the 2013 beta version on my cell as a PDF. It is free to use and sending comments to the authors is encouraged. I assume they would prefer you to discuss with your MD, neuro, etc., and have them respond. Many of the items classified only have names and symptoms. Lacking are cures and certain diagnostic procedures pathologists need in order to find cures for these dirty bastards called "headaches". Search duckduckgo.com for " The International Classification of Headache Disorders, 3rd ed. (beta version). A .pdf file will be downloaded. It was in this guide, after hours of study and frustration at the endless top-level medical jargon, that I found clarity and discovered (after much more research elsewhere) that the culprit to my intracranial CSF-related ungodly pain was from my two bouts with pneumonia early in life. Specifically as an infant, where I nearly waivered, and the treatments used commonly around the time I fell ill. The pain is still a constant, days-long, debilitating threat (attack free for nearly a year, longest span in 26 year headache career), but relief comes in many forms. I feel now as if I can see my enemy, instead of just getting sucker-punched by it every so often. Good luck.
  7. Dane

    List of triggers - please help

    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.
  8. 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.
  9. Dane

    1st bout with CH

    Careful with pain meds if you have pulsating severe headache pain with eye and jaw, and high bp,kuhrnes. Any opiate is like dropping a nuclear bomb in a volcano for me. These docs push high rev dope. Just one eye? Did it get like petrified wood hard or tender?
  10. Dane

    List of triggers - please help

    Undiagnosed severe chronic beyond cluster headaches is my new thread. Anything helps. Thanks. Verapamil and triptans? If they are pain medicine, anything except BC powder makes it come on faster.
  11. 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?
  12. Dane

    List of triggers - please help

    Thanks. I never sought treatment BC of fear of diagnosis. After reading entire ichd, it seems intercranial. It feels like my brain swells, and cerebro spinal fluid fills pockets with pressure. That why I call it a "cluster". It's every dam where. My eyes get hard as rocks.
  13. Dane

    List of triggers - please help

    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?
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