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Title: How do you describe a CH to someone? Post by painfulnoodle on Dec 3rd, 2006, 12:54am I'm sure it's been addressed before, but how do you describe a CH to someone who's never had one? Usually they will say, "yes, I get bad headaches too ... have you ever tried Excedrin?" .... yeah right! My best description, and maybe it's because of my construction background, is a glowing red hot piece of steel rebar jammed into your eye-socket and rattled around in one side of your brain! Surely someone has a more colorful description than that! (thought about putting my testicles in a vice and setting them on fire, but I don't think that's comparable) |
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Title: Re: How do you describe a CH to someone? Post by burnt-toast on Dec 3rd, 2006, 8:37am I don't believe that you can describe Ch to a non-sufferer who hasn't witnessed or experienced attacks. Best to begin by describing your condition as a neuroligical disorder associated with an enlarged Hypothalamus that disrupts normal sleep and causes excrutiating/repetitive pain in the eye, jaw, teeth, forehead and scalp. But... As soon as you use the word "headache" most will immediately associate the disorder with typical headaches they are familiar with and wonder what you're whining about. Tom |
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Title: Re: How do you describe a CH to someone? Post by brewcrew on Dec 3rd, 2006, 8:48am Try this: http://www.ouch-us.org/chgeneral/colleagueletter.htm |
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Title: Re: How do you describe a CH to someone? Post by georgej on Dec 3rd, 2006, 9:33am on 12/03/06 at 08:48:26, brewcrew wrote:
Agreed. That's about the best way that I can think of. I don't even try to describe them in casual conversation anymore, unless someone asks. Best, George |
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Title: Re: How do you describe a CH to someone? Post by BarbaraD on Dec 3rd, 2006, 11:16am I tell them think of migraines and then compare a goldfish to a shark. the CH being the shark. |
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Title: Re: How do you describe a CH to someone? Post by painfulnoodle on Dec 3rd, 2006, 12:15pm Great analogy ... everybody loves Goldfish!!! ;;D Another one I've used is comparing it to the 3 times I've broken my back and stating I'd do any one of those over rather than have one Kip 10! That seems to get their attention. While not many have broken their back, most have strained or injured it at some point in their pampered life (pampered meaning they've never suffered a CH) Red |
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Title: Re: How do you describe a CH to someone? Post by TonyG1 on Dec 3rd, 2006, 1:10pm I tell them imagine having molten steel injected into the base of your skull and feeling it course through one side of your face specially behind your eye.... |
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Title: Re: How do you describe a CH to someone? Post by swimchica623 on Dec 3rd, 2006, 6:30pm I've told them at times its often like watching a seizure, since I usually get them after falling asleep I'm in bed during attacks so I don't pace but thrash around in bed and bang and rock and such, and that (for a split second) my neurologist even considered epilepsy because of all the trashing, so its maybe like watching epilepsy but really, REALLY painful because one of the nerves near my eye gets over active and flooded with activity, causing more pain than I have ever felt in my life. When its over, I'm exhausted, then it happens again. I avoid using the word headache. Somteims I don't even call it cluster headache, just clusters. Frankly, headache is a horrible name to describe it. |
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Title: Re: How do you describe a CH to someone? Post by Redd715 on Dec 3rd, 2006, 7:48pm Two red hot knitting needles, one shoved into your nostril, one in your ear and they play swoardfight behind your eyeball, while at the same time a jack hammer does a drum solo on your molars. |
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Title: Re: How do you describe a CH to someone? Post by BlueMeanie on Dec 3rd, 2006, 8:16pm on 12/03/06 at 18:30:58, swimchica623 wrote:
It's nothing like an epilepsy seizure. :( I usually don't try to describe it too much as people don't really understand. If they seam really interested, I'll ramble on about it, other wise I just tell them it's way worse than a migraine. |
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Title: Re: How do you describe a CH to someone? Post by swimchica623 on Dec 3rd, 2006, 10:40pm yeah to me it doesnt feel anything like it of course...i think people with epilepsy dont remember it at all...when my mom first saw the attacks she thought it reminded her of it because id be fine one moment then 10 minutes later not, thrashing around, and so tired afterwards. but it seems to get the point across that it is anything but a headache when i include it in the description, from the observers point of view anyway....and the suddenness and the energy it takes out of you. |
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Title: Re: How do you describe a CH to someone? Post by chopmyheadoff on Dec 4th, 2006, 6:00am to me it feels like someone has got a big pair of pliars around something important deep in my brain on the right hand side and they are squeezing as hard as they can. when i describe it to people i try and ask them what is the most painful thing they can imagine and then try and describe it relative to that. |
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Title: Re: How do you describe a CH to someone? Post by CynthiaB on Dec 4th, 2006, 11:14am Redd has it right on the money. We must share a beast. (Still can't make that quote boxy thing work). I wish he would poke me eyeball out and get it over with. I need those knitting needles back. I'm in the middle of a project. |
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Title: Re: How do you describe a CH to someone? Post by chopmyheadoff on Dec 5th, 2006, 3:40am . . . or i just say iv got a painfulnoodle ;;D ;;D ::) ;;D ;;D |
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Title: Re: How do you describe a CH to someone? Post by mathieulives on Dec 5th, 2006, 9:21am I think the key to remember is that they will not get it 100%. Love ones come close to getting it, but don't expect anyone to have the reaction you're looking for. Professionally, I like the answers that stick with the science alone, but for those you are close to, I'd explain it the way you want. I told my family and close friends to take a ridged-metal ice pick the size of your arm and jab it in your right eye (i'm a righty) and pull it in and out for about 15 min, then lodge it in nice and good and rotate it for about 30 min and run electricity through it for another 3 hours.. and that's just the physical pain, the emotional and psychological pain is a different ball game. For those close to me I usually sent them the web site first, then I explained to them what I went through. Hang in there :-/ |
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Title: Re: How do you describe a CH to someone? Post by Beastfodder on Dec 5th, 2006, 11:16am Couldn't think of anything worse than explaining the pain to someone you don't know or aren't close to or even wanting to explain to someone else - the risk of being seen as a self obsessed bore with headaches is just too high to risk. Actually CH is worse than explaining about the pain but that's another story |
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Title: Re: How do you describe a CH to someone? Post by Richr8 on Dec 5th, 2006, 11:38am I quit trying. If someone really want to know, I'll hand them a copy of Simon's letter. |
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Title: Re: How do you describe a CH to someone? Post by Shedz on Dec 5th, 2006, 12:32pm World war 3 in my head usually sums it up ;) |
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Title: Re: How do you describe a CH to someone? Post by BigCoffinHunter on Dec 5th, 2006, 5:56pm I just tell people that I end up rolling around on the ground whimpering and crying. I'm a decent size guy, shaved head, tattoos....that usually gets their attention. |
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Title: Re: How do you describe a CH to someone? Post by tanner on Dec 5th, 2006, 11:14pm I gave up a long time ago :( I decided that the only way to know is feel and I don't hate anyone that much! At least not anyone I am likely to talk to. I keep waiting for the day when I am in the right place at the right time to see and stop a rapist or child molester....Then I could explain >:( ...Tim note to self keep ice pick, propane torch,slag hammer and vice grips in carryall at all times >:( >:( >:( note to others...this is not the tim I like :-[ |
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Title: Re: How do you describe a CH to someone? Post by painfulnoodle on Dec 6th, 2006, 3:08am mathieulives makes a good point ... it's not just the physical pain ... it's the terror we live in of the next attack and the total exhaustion we try to function with that compound the physical problems ... not a fun place to be! |
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Title: Re: How do you describe a CH to someone? Post by JBC on Dec 7th, 2006, 12:21am I tell them it feels like my brain is melting, my eye is caving in, and my teeth are on fire. |
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Title: Re: How do you describe a CH to someone? Post by ax on Dec 7th, 2006, 12:39am I don't waste my breathe on describing pain. I just tell those who need to know, that I have a rare disease that effects my circadian rhythm called clusters. I do tell about sleep deprivation and the clock like characteristics. Most people don't want to hear about others in pain. Also I have found that people listen and understand until you mention "headache". As far as getting a sympathetic reaction... stick with your family here. |
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Title: Re: How do you describe a CH to someone? Post by Sandy_C on Dec 7th, 2006, 5:06pm I don't even try anymore. Those who are close to me, my family and close friends, all know exactly what a cluster headache is because they have witnessed me getting hit. They know when I'm in cycle, and can sometimes even predict that a hit is coming before I even know it. Anyone else, who cares? They are more intersted in complaining about their bunions than they are about learning about my pain. Sandy |
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Title: Re: How do you describe a CH to someone? Post by TonyYZF on Dec 9th, 2006, 4:31pm I have described a hit to others as follows: Take about an eight pound rock with jagged edges. Start bashing the side of your head and face as hard as you can repeatedly. When your cheak bone shatters and splinters into your eye, your temple has caved in and you have shattered every tooth on that side of your head so they are dangling in fragments from the bloody pulp that used to be your mouth, then you are close to experiencing the pain of a cluster headache. And yes, when I go over 45 minutes with a 9 or 10 I swear I would gouge out my eye with a fork if I really thought that would stop the pain. See, that is a colorful description... ;;D Pain free wishes. Tony |
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Title: Re: How do you describe a CH to someone? Post by MorDog on Dec 10th, 2006, 12:01pm I always liken it to eating something real cold (like icecream) real fast and giving yourself one of those painful brainfreezes, but move it to one side of your head and have it last for about an hour. |
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Title: Re: How do you describe a CH to someone? Post by cluster_help_in_ca on Dec 11th, 2006, 1:59am I have tried the ice pick and the eye that is on fire. It never works. I have also tried that it feel like child birth on the side of your head long sharp pains that start out little and the grow really big and then there will be nothing for a little a while until the next one. But unfortunately if i am explaining to a dr in ER it is just like telling them you have a head ache. Everyone thinks they know what clusters are but they never really do. Next year i am thinking about having them filmed. :( |
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Title: Re: How do you describe a CH to someone? Post by BigCoffinHunter on Dec 11th, 2006, 8:16am on 12/11/06 at 01:59:00, cluster_help_in_ca wrote:
I tried setting up a video camera and recording, but it didn't work so well because I end up running around and pacing. I wasn't in the camera for most of it. I'll never go to the ER ever again for a CH. It is a complete waste of time and money that would be better spent chugging coffee and red bull. |
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Title: Re: How do you describe a CH to someone? Post by wam on Dec 13th, 2006, 11:36pm People who dont suffer will NEVER understand what hell we go through.Sad but true. |
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Title: Re: How do you describe a CH to someone? Post by TonyG1 on Dec 15th, 2006, 8:32am on 12/13/06 at 23:36:06, wam wrote:
Agreed Wam! |
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