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        New Message Board Archives >> 2003 Posts >> It's all in the name.
        
(Message started by: els on Apr 27^th, 2003, 8:16am)

Title: It's all in the name.
Post by els on Apr 27^th, 2003, 8:16am

This has probably been done to death but I'm going to bring it up anyway.
We all have a problem with people not understanding when we try to tell them what we are going through with Cluster Headaches. They look at like your'e a hypochondriac
or immediately start talking about migraines.
I think that part of the problem is the name. Cluster Headaches tells how they come around to visit us but really doesn't give any idea of the type of pain or how bad it is.
I really don't have any brilliant ideas for this but maybe some of you could come up with a better name, whether serious or maybe your own pet name for them.
els

Title: Re: It's all in the name.
Post by Frank on Apr 27^th, 2003, 9:35am

Here's what some folks said four years ago, but we could probably come up with some more. http://www.clusterheadaches.com/wwwboard/messages/23372.htmlThink "Exploding Eye Syndrome" sounds to dramatic?

Title: Re: It's all in the name.
Post by cathy on Apr 27^th, 2003, 11:10am

Clusterheadaches are also known as Suicide Headaches I think that says it all.

Cathy

Title: Re: It's all in the name.
Post by eyes_afire on Apr 27^th, 2003, 2:12pm

Yes Els, you are correct, the name is very misleading. Not at all representative of what happens. But really, no matter what you call it, you would still be hard pressed to make people understand. I no longer bother trying to 'make people understand', there's really no way they can anyway. I simply state the facts without drama and emphasize that the pain is extreme. If someone is there when I get CH, and they see what happens, then my credibility is all the better for not trying to make it sound so horrific before they actually see it. If they don't see and/or don't believe, then it's thier own ignorance. In my opinion, the competitive every day general working population is in denial of pain and suffering... they don't want to acknowledge anyone else's pain. It's discomforting for them. They are too busy living thier own lives and ensuring thier genetic immortality by perpetuating thier genes.

--- Steve, the Blasphemous Psycho-Biologist ::)

Title: Re: It's all in the name.
Post by Mikey on Apr 27^th, 2003, 2:47pm

Oh i don't know, how about

Disruptive Hypothalamic Disease with Extreme Trigeminal and Occipital Nerve Disorders.

DHD with TOD. ????????????????????????

Mikey, ???

Title: Re: It's all in the name.
Post by Karla on Apr 27^th, 2003, 3:07pm

I call them cluster headaches but when describing them I call them attacks. I get attacked 8x a day. My attacks last 1 1/2 hours. It is a little more personal and graphic description I think and gets a better point across.

Title: Re: It's all in the name.
Post by els on Apr 27^th, 2003, 5:28pm

All great answers.
Frank; Exploding Eye Syndrome too dramactic? Not at all!

Steve; I agree with you most of the time. Just once in a while I want to shock someone enough to shut them up. Particularly this one guy I work with. If he really had done everything and been all the places he says he has he would be 200 years old. And if he gone through all the accidents and sicknesses he says he has he would have to be dead. You probably know the type I'm talking about, with a story for every occasion. LOL.

Mikey; I had to look up Trigeminal. Great name, it would certainly make people think.

els.

Title: Re: It's all in the name.
Post by eyes_afire on Apr 27^th, 2003, 6:25pm

Ah yes, people like that, I definately know some. Don't let them get to you, they're just 'monkeys with car keys'.

Even before I mention the term 'cluster headaches' I always say 'there's a problem with the nerve behind my eye', or something like that. Only if they want to know more (which by this point is more likely to be the case), do I mention 'cluster headaches'. When ya just say 'cluster headaches' most people don't give a rats ass.

Title: Re: It's all in the name.
Post by jimbo on Apr 28^th, 2003, 7:48am

I think a little show and tell would be more appropriate!

The next time someone says to me "Oh, I get headaches to" I'll bury a white-hot hatchet in their skull somewhere behind the eye! LOL

Hey there you go, how about Hatchet Headaches?

Seeya,

Jimbo Bunyon

Title: Re: It's all in the name.
Post by JDH on Apr 28^th, 2003, 9:23am

on 04/27/03 at 09:35:40, Frank wrote:

"Exploding Eye Syndrome" sounds to dramatic?

Fuckeneh Frank, that'll get their attention.

Jim

Title: Re: It's all in the name.
Post by BobbyS on Apr 28^th, 2003, 10:50am

Hi els...I've been told the real name for this condition was Horton's Syndrome...could be mistaken!! I've come up with a few myself but doubt they's get by the censor!! Take care....BobbyS

Title: Re: It's all in the name.
Post by Big_Dan on Apr 28^th, 2003, 11:06am

How about...

... getting ****'ed in the eyesocket with Satan's red-hot pitchfork of misery...... syndrome....

-Big Dan

Title: Re: It's all in the name.
Post by BruceD on Apr 28^th, 2003, 11:22am

I've thought that ever since I learned that I have Cluster Headaches. Once you say the word "headache" people have their own "normal" headache experiences to bias their understanding. Or they'll say ... "Yeah, my friend's sister has migrains" Oftentimes I'll pull the medical names

Other names for cluster headache include migrainous neuralgia, petrosal neuralgia, Horton's histamine cephalgia, red migraine, erythromelalgia of the head and paroxysmal nocturnal cephalgia. About one-fifth of sufferers develop daily and relentless symptoms in a condition known as chronic cluster headache. A rare variation of the disease includes symptoms of trigeminal neuralgia in what is termed cluster-tic syndrome.

While suicide headache is good ... it still uses that common word of headache. Usually I start off telling them one of the scientific names ... then say what it's like ... then tell them "cluster headaches"

Take care
BruceD

Title: Re: It's all in the name.
Post by Hound_Dogg on Apr 28^th, 2003, 12:13pm

I actually got a Neuro-surgeon's intern sick with my description. I was there to look into Nucleo-plasty for a neck injury & the neuro-surgeon wanted to know about my cluster's. (Mainly because he had a group of interns with him & was training them in all areas of neurology. Anyway....I tell them imagine your brain starts to swell to 3 times it's normal size and then your right eyeball begins to give birth to that 3 times its normal size brain. I said if you can imagine that..it's much worse.

Title: Re: It's all in the name.
Post by BobG on Apr 28^th, 2003, 1:30pm

Here's my favorites........from Oringkid

“Cramp in the face” & “Charlie Horse in the head”

Title: Re: It's all in the name.
Post by els on Apr 29^th, 2003, 5:18pm

My head is killing me but you guys are actually making me laugh.
I think I really scared my doctor today when I told him I sometimes want to rip the flesh off my face to get at the pain. But he gave my what I wanted and we're going to look into the oxygen with my insurance company.
els

Title: Re: It's all in the name.
Post by catlind on Apr 29^th, 2003, 5:33pm

I agree that the name does not do the pain justice. Headache has a connotation that the general populous can associate with, when in fact, the pain of this affliction (syndrome, disease, disorder whatever) is nothing like a head ache. It is an acute pure pain.

Interestingly enough, it was migraines that made the difference for me, in help others understand. I didn't even do it on purpose, just a normal reaction. I got hit with a migraine (I get both, lucky me) and went to the ER because I didn't have any meds in the house (nothing at all since I went on detox and the drug stores were closed) They came in and asked me if it was my head again, and I replied "it's just a migraine". Both the nurse and the registration clerk popped their eyeballs and let their jaws hit the floor saying "JUST a migraine!?" I went on to explain that a migraine is so minor in comparison that it is JUST a migraine. Migraines don't generally drive people to suicide.

When it comes to trying to get people to understand the pain, I think that's almost impossible. Even my husband, who has seen me thrashing around and banging my head on walls and restrained me from leaving the house in search of the first moving vehicle to put my head under, does not even pretend to comprehend the level of pain. Someone who doesn't even see what the attacks do can't possibly grasp what it is like.

I like Karla's description of attacks. It's an acute all consuming pure attack of pain.

Cat

Title: Re: It's all in the name.
Post by oringkid on May 1^st, 2003, 11:54am

Well hmm... I imagine Migraines were first called Migraine Headaches....perhaps if we drop the headache....clusters, then add acute to the front... acute clusters (or acute chronic clusters)... then explain that it is acute unilateral nerve pain affecting the trigeminal nerve.....Just leave out all reference to headache. Throw in a reference to the hypothalamus and Voila! we now have an acute nerve disease, probably resulting from a genetic defect. Then the coup de gras...you say "Unfortunately, it is incurable"

Sherry

Title: Re: It's all in the name.
Post by Drk^Angel on May 1^st, 2003, 10:21pm

It's a type of Trigeminal Autonomic Cephalgia of the Cluster variety.

PFDAN............................... Drk^Angel