Leaderboard

Tired of people that say stuff like yeah, I get headaches too.

J, Thanks for the real world descriptions of this pesky little thing called pain. There is an element about clusters that I find makes them unique, and separates them from ALL other forms of pain. Be it broken bone, nerve pain, kidney stone, whatever... all these pains come from outside the brain and travel to it. Even headaches and migraines are on the surface of the head sending the pain inwards. But when I experience a cluster, it feels like it is being generated at the very source, in the brain, in the pain centre. Now, obviously I haven't experienced every pain in the world, and this is (again) my perception of the pain. But it is what I think makes Clusters uniquely extreme. Mox

Maybe a bit of comparison on my Kipp Scale, for those that have a different interpretation: I've broken my wrist before. It was 10 at night and I didn't feel like going to the emergency room. I decided to go to bed and go in the morning. I went right to sleep like a baby 15 minutes after breaking it. Slept fine got up. Put my wrist in a tshirt sling and went to the emergency room. My kipp level was maybe 3 out of 10. I've de-gloved 2 fingers on my right hand in a sailing accident. The index and middle finger had the meat pulled right off the bone. My middle finger bone was sticking out like a skeleton you see at Halloween. Of course both fingernails were peeled off as well. We were docking a large boat and my fingers got caught in a cleat. I yelled up to the guy on the bow not to dilly dally, that he had to take me to the emergency room as soon as the boat was tied up. I grabbed a hand towel from the galley and ran back on deck spewing blood everywhere. I finished securing the stern and port of the boat before showing my friend what happened. He drove me to the emergency room where they reassembled my fingers. Oh and without any anesthetic. I'm immune to the anesthetic they use for nerve blocks. My peak pain through the entire event was maybe a 4. My pain tolerance is VERY high due to my years with CH I can only assume. I've had 3 kidney stones. Passed one of them. Kipp 5 to 6. Other two had surgery to remove and were maybe Kipp 3 tops. To say my pain levels with a CH K10 are worse than an amputation without anesthetic is a no brainer. My K10's are much worse. Everyone is different, but pain is pain. Support for our CH family here is what's its all about. J

The reality is everyone has a different pain level from their CH. They also have different pain tolerances. I'm one of the people that have attempted suicide due to my CH. When I get a K10, it IS a K10... I've passed kidney stones and they were a walk in the park compared to my K10 attacks. I've beat my head on the floor till I've passed out. Because some people with CH don't really get K10's doesn't mean others don't. I wouldn't downplay any description. Otherwise you shouldn't complain if someone just tells you to go take an aspirin when YOU have an attack. (see the comparison?) I've spoken with people that can't understand why some of us use indole ring hallucinogens to treat our CH. They've said. "CH isn't that bad. Just wait till the attack passes". "Why would anyone take an illegal substance to treat their CH. It's not that bad"... The examples go on and on. To those people... I seriously question if you really have CH. I KNOW how bad mine was before I started self treatment. I'd never go back to that world, or I'd be outa here if I did. I think healthy debate is healthy. Let's just not downplay someone else's description just because your pain isn't as bad as theirs. You might wake up one day and find your pain IS as bad as theirs and reassess your own Kipp scale. (I certainly hope not though). Cheers, J

During my net trips and so on, there have been accounts of people who have ch and have had traumatic amputations, they would choose the amputation again, same for childbirth, gunshot, pretty much any physical trauma you can imagine, hell I would pass kidney stones 5 times a day over this. Shock and pain closest is neurogenic shock, which can be caused by a sudden extreme onset of pain, causing blood pressure to drop, great thing about most of us, pain goes up on a curve, not sudden onset, so we can hit top of the line pain and not suffer the neurological shock effects. And yes, I have screamed nonstop, tried knocking myself out on a wall, there is a reason they are called "Suicide headaches" I speak from a former (Due to ch) first responder and remote field medic training. Shock is huge in that case, funny thing about things like traumatic amputation or severe injury, once the incident has finished, the body tones or mutes the pain signals down. Beside the initial massive outset, the pain does not stay at that peak. Except when a brain and a nerve decide to say, hey lets crank this up and stay there. Many neurologists and primary physicians are also seeing in CH sufferers ptsd, anxiety and depression. I have had really bad heatstroke, the nausea, dizziness, disorientation, dehydration, and that to me is nothing like a cluster attack, have had a half broken tooth abscessed and that is nothing like a ch attack. It is bar none the worst pain I have ever experienced in my life to the point walking into traffic is something I have considered, hell I have literally begged my wife to take me out with a baseball bat. Maybe you have been 'lucky' I do not know or a huge pain tolerance but even the Kip scale, pretty much the accepted pain scale for ch lists a 10 as screaming, head banging, er, suicidal.

I appreciate what you are trying to do and have often thought how to communicate the exquisite pain cluster headaches produce. In reality, like a mystic psychedelic experience, it is ineffable, there are no words to describe the experience. There is no empathy except from another fellow clusterhead. The whole thing sucks beyond measure and to me it doesn't matter if anyone understands so I don't bother. Words always fall short. For the persistent soul who presses the issue I direct them to YouTube and Dan's national geographic appearance. The video does more than words could ever convey.

The oxygen we use it in tank form. You can get a script from a doctor or set it up like a welding system. You can get different size tanks so you can keep one at home and another in your car so you can hopefully get to it when you are at work. Batches D3 can help knock the amount of hits you get and the pain level down so it will make it a little more manageable. You can use energy drinks or strong coffee to slow a hit down as you make your way to the oxygen tank. You will need a high flow regulator and a cluster mask to optimize your setup but that would be top on my list of things to get. It can change your life.