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Topic: How do you decribe the pain? (Read 2784 times) |
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chili_666
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How do you decribe the pain?
« on: Oct 10th, 2005, 7:29am » |
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Hello there,
I īve been around a couple of times, but havenīt really posted anything. Iīve been suffering from episodic clusters for about 10 years or so. I really donīt know for how long, but I have been diagnosed 5 years ago and Iīve made trips to the hospital because of my headaches a few times and years earlier.
Anway, so I am back in an episode. Not that much to worry, got my medication - so itīs not going to be that much of a problem. Verapamil and Imigran bust any attack Iīve had so far.
The only problem that I have are the people around me. Well, there is my group of supporters of course, family, girl-friend or very close friends. Those are fine. They know that they help me best by leaving me alone to deal with it and just be there for me whenever I get really depressed or stressed. They seen what an ***hole I can be, when I have an attack. How mad I can get at anything... and in how much pain I had to be to do the things to me I did before I was diagnosed and got the right treatment.
But how do you explain to somebody you have only seen once or twice? Itīs not that they donīt believe me - they do most of the time. But how can I explain to them what is happening to me? How can I tell how intense the pain is? What it makes me do? (If I donīt use my medication, of course)
Seriously, Iīd like to tell them - not to make me look good, or to cash in a lot of pity - I just want them to know and treat headaches with the right "respect" (for want of a better word). I reckon you all know that feeling, when somebody says "Headache? Ah, go get some Aspirin and stop whining!". They donīt say that, but still... Or worse they come running after you, when you have a top-of-the-line attack and watch you inject yourself and then try to help and console you. And donīt believe you when you pull yourself together the best you can and just tell them quietly to leave you alone for 5 minutes..
And of course, the topic always arises - even if I donīt have an attack in front of everyone. I am very very very outgoing person. I like to have fun, I drink loads of alcohol, talk way fatser than I can think and all that. I donīt do that while in an episode. Not only do I stop drinking, but my life tends to slow down a bit - I am more self-centered (not to say selfish  ) and a lot more quiet. This is partly the medication - my blood pressure is not too high in the best of times and with Verapamil - and mostly because of the cluster itself. Though I tend to forget during the painfree times, I still see life a lot differently during episodes. People notice that and ask. Often they are really interested and want to know.
But I am not really into telling anyone first thing that I used to bash my heads against lamp-posts in the middle of the night until I started bleeding. Or that I prefer to do the dance around busy streets during nights, because nobody can hear you scream... So often i donīt know how to describe what is happening to me.
Geee, loads of text. Sorry about that - but this has been bugging for the last two episodes and I just feels great to get it off my chest. Thanks.
Anyway, do you try at all to explain to distant friends? Or do you just leave it at that? Or donīt you go out at all while in an episode?
chili_666
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giffy76
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Re: How do you decribe the pain?
« Reply #2 on: Oct 10th, 2005, 11:40am » |
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Funny you bring this up. I spent the weekend with 4 of my buddys camping and what not. One of em started bitching about his migraines  I told him I wished I got migraines and how would he like to roll on the floor, beating his head against it because there was a red hot ice pick jammed behind his eye that was being twisted around and pulled in and out. He shut up.
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seasonalboomer
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Re: How do you decribe the pain?
« Reply #3 on: Oct 10th, 2005, 11:48am » |
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on Oct 10th, 2005, 11:40am, giffy76 wrote:| Funny you bring this up. I spent the weekend with 4 of my buddys camping and what not. One of em started bitching about his migraines I told him I wished I got migraines and how would he like to roll on the floor, beating his head against it because there was a red hot ice pick jammed behind his eye that was being twisted around and pulled in and out. He shut up. |
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i think that's called one-upsmanship and not altogether a great way to keep friends. i don't get migraines, but I can tell you I'd think you were kind of a jerk if I was sharing my migraine experience and you stepped all over it because I didn't experience the kind of pain you experience. i know the feeling of trying to get people to understand "our pain" but i think there are times when we overdo it. you want sympathy? gotta give sympathy too.
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giffy76
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Re: How do you decribe the pain?
« Reply #4 on: Oct 10th, 2005, 11:59am » |
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on Oct 10th, 2005, 11:48am, seasonalboomer wrote:
i think that's called one-upsmanship and not altogether a great way to keep friends. i don't get migraines, but I can tell you I'd think you were kind of a jerk if I was sharing my migraine experience and you stepped all over it because I didn't experience the kind of pain you experience. i know the feeling of trying to get people to understand "our pain" but i think there are times when we overdo it. you want sympathy? gotta give sympathy too.
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You are correct. But, I said that, after a 20 minute conversation a 20 minute (drunk) conversation about migraines vs. CH and trying to explain to him that I dont get migraines. And I never ask for sympathy, just understanding.
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nani
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Re: How do you decribe the pain?
« Reply #5 on: Oct 10th, 2005, 12:18pm » |
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I agree about one-upping. I had a brain hemmorhage and major brain surgery. In a way, that made my CH like a walk in the park because the pain (24/7) didn't let up for about 3 months. Sadly, it doesn't make it hurt any less when I get hit with a CH. Pain is pain... and it all sucks.
Now...this is how I describe CH:
I suffer from a neuro vascular pain disorder, often called suicide headaches and the worst pain known to man by medical professionals. It's called (use your fingers here) " Cluster headaches" .
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Langa
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Re: How do you decribe the pain?
« Reply #6 on: Oct 10th, 2005, 12:30pm » |
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This was one of my first posts here...this is how I can best describe a cluster...
I was in the ladies room today washing my hands when a co-worker walked in and asked me how I was doing with regard to my headaches. I answered that I was much better now that they went into remission (over that cycle now about a month).
She accidentally caught me sucking on the oxygen once during my 4 month cluster bout in a back supply room where my boss told me to keep it should I need it. Afterwards she asked me why I needed the oxygen and I explained. Her response? "Yeah, I know. I get severe migraines. Nothing like those. Hope you get rid of your headaches soon". She gave me a smirk and never spoke to me again.
Today, she said the same thing..."As I said before, I can relate, though i'm sure your pain is not as bad as the migraines I get".
For the first time in my life I decided to really educate someone on the horrors of cluster headaches. I walked over to her, looked her straight in the eye and said "Really? You're mistaken. There is something more horrible than migraines, not to downplay your pain because I have loved ones that get migraines, but let's see, you can lay down and close your eyes in the dark and fall asleep. Me? I crawl on the floor, vomit on myself and bang my head on the wall until i get nosebleeds trying to get the imaginary icepick out of my brain, oh and let's not forget the runny nose you can't blow because you feel like your brains will come out of your ears, the sweats and the level of lunacy you reach where only suicide seems to be the only way out, but it gets better...because of the trauma my brain just went through, I'm left feeling like I need to sleep for two days, but I can't, you see I have to keep pressing in and trying to have an almost normal life, almost I say because I live in constant fear, dread and anxiety of when the next one will hit me. Do you know what it's like to live in fear? Think about it. It's like you're trying to hide from an unseen monster who will pounce on you when you least expect it. How about dreading sleep because that's when it really comes to get you and by that time it wakes you, it's been there so long you have no chance of a good fight. So you sit back and wait for it to be done with you. Knowing that it will come back when it damn well feels like it. But imagine living like this with no breaks. Mine will go away, but others live like this for months/years on end. Still, none of that even compares to the loneliness we feel because most of the world isn't informed of this horror. I won't downplay your pain if you don't downplay mine. Deal? Have a nice day"!
Langa
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unsolved1
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Re: How do you decribe the pain?
« Reply #7 on: Oct 10th, 2005, 5:59pm » |
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Simply the worst pain i've ever endured. I've had broken bones (leg and arm) and kidneystones (twice) and neither compare to a full blown cluster. Its like a hot poker twisting in my eye.
UNsolved
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Sandy_C
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Re: How do you decribe the pain?
« Reply #8 on: Oct 10th, 2005, 6:09pm » |
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Usually, I don't even try to explain what the pain "is". There is no adequate description. My family (husband only - not my daughters who have never witnessed a hit), is probably the only person I know that really understands what my pain level is.
I had a customer in my office just last week, who knew that I suffered from "headaches". Now, I've known this man for almost 18 years so I feel very free to just speak my mind whenever necessary. He asked me how my headaches were and I told him that I was out of cycle so I was absolutely great. He then said "you know what you can do for your headaches?" I stopped him right there. It was 6:30 pm and I wanted to finish his design so that I could go home. I told him STOPand I said until you learn what a cluster headache is, do not even attempt to give me advice. I gave him this website and the OUCH website and told him to go educate himself. I had neither the time nor the inclination to teach him.
Bad me? No, I just get so tired of people telling me what I can do for my "headaches".
Piss on all of them.
(Sorry, I'm venting)
Sandy - going to have a beer now.
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maffumatt
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Re: How do you decribe the pain?
« Reply #9 on: Oct 10th, 2005, 10:03pm » |
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mine start with pressure behind my right eye, within 5 min it has moved to my temple and ear. If my teeth start to go numb I know its going to be a bad one. When its bad my teeth go from being numb, to feeling like they are all being ripped out at the same time. My eye feels like it is being pushed out from the inside out while an icepick is being drilled through my temple. Its a constant drilling pain that doesnt let up.
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Kate in Oz
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Re: How do you decribe the pain?
« Reply #10 on: Oct 10th, 2005, 10:50pm » |
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Hey Chili 666,
I think I read it on here somewhere - that the pain is the equivalent to having a limb removed without any anesthetic (sp?) I've been known to use that one to try to explain the pain to people - and sometimes just for the shock value. A headache is a headache is a headache - ch IS NOT!
I had a child a couple of years ago - the only pain relief I was given was a couple of panadol  - and yeah it hurt like hell but it was NOTHING compared to a KIP 10. I think the fear of attack is a pain in itself - cos you know that's not the end of it. You don't just get one headache!
Kate
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Jasmyn
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Re: How do you decribe the pain?
« Reply #11 on: Oct 11th, 2005, 12:15am » |
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Chilly, Langa hit the nail on the head or the head on the nail.
I'm gonna print that one, memorise it and use it for future reference.
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chili_666
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Re: How do you decribe the pain?
« Reply #12 on: Oct 11th, 2005, 6:56am » |
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on Oct 10th, 2005, 10:50pm, Kate in Oz wrote:Hey Chili 666,
I think I read it on here somewhere - that the pain is the equivalent to having a limb removed without any anesthetic (sp?) I've been known to use that one to try to explain the pain to people - and sometimes just for the shock value. A headache is a headache is a headache - ch IS NOT!
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@Kate
That is actually a really good one. Iīll have to memorize and use that explanation.
@all the others
Thanks. I think i needed to know that I am not alone with my frustrations. Funny how the cluster gets to you. First its the pain and then its really tiny unimportant things, like people who donīt believe you. "Suicide headaches" might also be a good one - the description is on the spot, but I think its got a little bit to much pathos in it.
My girlfriend came up with a really good way of shutting people up. A friend of ours went into "My headache is worse than your headache"-bad-kung-fu-flick mode and started bitching about her migraine. After a couple of minutes my girlfriend grabbed into my coat pocket, put my Imigran shots onto the table and said: "Well, his headaches canīt that bad. He just uses one of these and he is painfree after a couple of minutes".
Donīt get me wrong. I know that this is one-upmanship and I do know a couple of people who suffer from migraines. I know that they go through a lot of pain as well. But I also know, that they havenīt been that far out as we do. They donīt try smashing their heads in on various bits of furniture, just to make it stop...
chili
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AussieBrian
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Re: How do you decribe the pain?
« Reply #13 on: Oct 11th, 2005, 7:26am » |
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I heard the Word of God (aka Prof G.) on a radio program some years back -
"The pain of an individual headache is roughly that suffered by a woman during a long and hard labour. The difference is that these people do it every day, sometimes two or three times a day, for weeks and months on end. It's quite unbelievable what they go through."
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Re: How do you decribe the pain?
« Reply #14 on: Oct 11th, 2005, 9:47am » |
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I don't usually talk about it. If someone says they have migraines, or they usually just take aspirin and lie down, I've gotten pretty good at nodding and being sincere when I tell them that I hope they are getting relief from the pain.
If someone really wants to know what it's like, I tell them that it's like someone jamming a screwdriver into my right eye, and then digging it around and around for a half hour, several times within a 24-hour period, every day, for 8-12 weeks.
Even that doesn't really do it justice... It's really and truly beyond words, and I'm weary with explaining it, so I mostly keep it to myself.
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Re: How do you decribe the pain?
« Reply #15 on: Oct 11th, 2005, 12:30pm » |
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One time my neuro asked me to try to explain the pain of a Cluster...I told him I was hard pressd to think of a description..but that first I'll get a slight "twinge" at the back of my neck and then an ache in my right eye...within minutes it builds to a cresendo of exquisite pain in my right eye and nose..."it feels as if my head is giving birth to my brain and can't decide whether to use my right eye or right nostril as the birth canal." and I told him...that was putting it mildly.
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Re: How do you decribe the pain?
« Reply #16 on: Oct 11th, 2005, 6:44pm » |
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Although I wouldn't wish these things on anyone (well.......there are a few people.........no, not even them), I wish there was a way to let others experience CH pain first hand if only for a few minutes instead of trying to describe what its like. It's like no headache I've ever experienced. I get pretty depressed when a cycle starts because I know what I have to look forward to.....agonizing pain every night for the next 2 or 3 months.
Rich
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Re: How do you decribe the pain?
« Reply #17 on: Oct 11th, 2005, 8:08pm » |
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One word.......................uncontrolable 
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TxBasslady
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Re: How do you decribe the pain?
« Reply #18 on: Oct 11th, 2005, 9:31pm » |
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I'm not certain I've ever been successful trying to explain .
Folks nod their head...and go on. No big deal to them.
But for me, it's real.....and painful....and undoubtedly the worse pain I've ever experienced.
Ya know, I think you either have to experience the pain first hand....or support one who suffers first hand, in order to be able to really understand it.
Hell, the Doctor's don't even understand it. Most CH'ers educate the docs.
Jean
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Re: How do you decribe the pain?
« Reply #19 on: Oct 12th, 2005, 6:52am » |
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You're right, Jean. I've said this before, myself. Until the pain is real to the person, and until they've either experienced it or watched someone go through a hit, they really don't, can't, and won't ever understand it. In a way, I'm grateful. I would never wish this on anyone.
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rextangle
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Re: How do you decribe the pain?
« Reply #20 on: Oct 12th, 2005, 8:43pm » |
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This is what you can say to people who don't know:
Pretend you're eating ice cream too fast. Now multiple that pain by 100. Take a metal claw heated too 600 degrees farenheit and shove it through your eyeball. Once you do that, start twisting the claw inside your brain very slowly and keep pushing until you grab the rear muscle of your neck and then twist some more... slowly. And this could last up to 3 hours.
Now remove the claw, rince with cold water and go have a cigarette. 
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MJ
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Re: How do you decribe the pain?
« Reply #21 on: Oct 12th, 2005, 10:11pm » |
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I descibe the pain when asked much as Rextangle says. I start getting into the description and then they say whats an ice cream headache, never had one of those.
At wich time I quit describing and say it's a nasty headache.
On the rare occasion when caught in the act of an attack.
Someone will say are you ok? With a hand at my head I say no but will be in a few minutes. its called a cluster headache it goes away.
They say whats it feel like?
As I lift my chin from my chest, cock my head slightly, look up at them from the top of my one good but bloodshot eye, with snot running from my nose and tears from the other eye dripping from my cheek and occasional drool from my lips my face as white as a ghost I still say I'll be ok in a few minutes.
About an hour or so later I look as good as I allways do and they never ask again.
But many have at that point made there own attempt to find out what a cluster headache is and invariably they tell me about "THIS" cluster site on the internet that I should check out.
I make the attempt to go out during cycles but allways am searching for the escape routes. Those around me run interference and know and accept that I just have to disapear for a little bit but will be back.
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ExplodingEyeBall
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Re: How do you decribe the pain?
« Reply #22 on: Oct 13th, 2005, 12:40pm » |
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It's useless to try describing the pain of CH to most people. Especially the ones who have had other painful problems like migraines, amputation, burns, etc... They all respond by saying "Oh that's nothing, you should feel _________ (fill in the blank'.
For me it just starts out by feeling something like someone touching the side of my eye real softly with something sharp. It then starts to hurt over the top of my ear. Within 10 minutes, it's all out agony with all of my teethand my jaw hurting, the entire side of my head hurting and most of all the pressure behind my eye. It feels like someone pressurized my eyeball by putting a balloon in it and they are slowly infalying it to the point of it exploding.
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catherinelane
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Re: How do you decribe the pain?
« Reply #23 on: Oct 13th, 2005, 5:15pm » |
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i think the only way the pain is ever fully understood by someone who isnt a sufferer is to witness an attack for example my mother used to say oh my migranes this my migranes that blah blah blah of course i never said anything because its my mother... but i sat there silently seething thinking if only you knew but one evening my husband had to be up at 3 am to work and wham i started to get hit not to wake my hubby i stauntered over the road to my mothers house where i got hit by a full blown kip 10 right in front of her i started to methodicaly fist my head as hard as i could until i was nearly unconcious.............. she has never harped on about her migranes again........ not a peep
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BMoneeTheMoneeMan
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Re: How do you decribe the pain?
« Reply #24 on: Oct 14th, 2005, 12:23am » |
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Its tough to describe it. I do hate that people dont know what its like. Migraines are more popular, and everyone knows they are a bitch, but cant even begin to understand the pain of a CH.
I think it may have been here on this site, i read that some women said the pain was worse than childbirth.
I also tell people that if you take a 12 hour migraine's pain and concentrate it down to 90 minutes all at once, that can begin to describe the excruciating intensity of them.
The thing i hate too is when people just dont know about them, and you always get the "oh, i got headaches too, i hear you". It always makes me laugh when people say things like " oh, when i am hungover, my head hurts real bad too", or "oh, yeah, i get headaches so bad i gotta take 2 excedrin and go lie down for 20 minutes."
PF wishes to all.
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