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(Message started by: writer on Dec 11th, 2005, 1:07pm)

Title: A New Name for Cluster Headaches
Post by writer on Dec 11th, 2005, 1:07pm

I think we all agree that "cluster headache" is a misnomer that has caused considerable harm.  It seems to incite others to tell us about their latest headache and how three aspirin took it away.

I think we must make noise about this issue.  We need to somehow decide what words best describe this horrible affliction and then (I volunteer) write to the AMA and similar types telling them that we want a change in nomenclature.  A good press release would go out at the outset of our "campaign."  I am an old public info person and would volunteer to do that also if somebody could dredge up a long list of appropriate names and addresses.

Qs:  What are your thoughts?  What words might best describe the affliction?  Are you willing to help in any way?

If nothing else, I belueve we're guaranteed a bit of media attention if we make this unusual brand of noise and take on the medical eestablishment even a little bit.  

Title: Re: A New Name for Cluster Headaches
Post by CHater on Dec 11th, 2005, 1:44pm
I agree with your vision.

CH is not a headache, it is more like "neuralgy attacks"...damn it's really hard to define.

But it is definitely "NOT" headache.

Good thinking from your side !

Title: Re: A New Name for Cluster Headaches
Post by phase66 on Dec 11th, 2005, 1:51pm
Horton's Syndrome already exists and usually elicits a "What is that?" from people.  

...Or maybe Ice Cream Brainfreeze XTREME.

Title: Re: A New Name for Cluster Headaches
Post by Melissa on Dec 11th, 2005, 2:28pm
I think it should be called "Suicide Headache Disease", or something to that effect.

or fuckinga$$holepieceofshitmonsterthatidliketobashthefuckoutof


:)

Title: Re: A New Name for Cluster Headaches
Post by r_headache on Dec 11th, 2005, 2:31pm
[smiley=laugh.gif]
ROTFLMAO
one of the best fuckingdescriptionsIhaveeverheard!

Title: Re: A New Name for Cluster Headaches
Post by BobG on Dec 11th, 2005, 2:39pm
At my house it's called "One of those".

When She notices me holding my face.........

She: "Headache?"

Me: "Yep"

She: "One of those?"

Me: "Yep"

End of conversation.


Or when talking to an idiot........

Idiot: "Migraine?"

Me: "No, Cluster"

Idiot: "Oh yeah, I had One Of Those once".

Title: Re: A New Name for Cluster Headaches
Post by yikes-another-one on Dec 11th, 2005, 5:00pm
I think it should have "attack" in the name...

Brain attack
or
ice-pick attack


Cause
Fire-poker in the eyeball is way too long....

Hey when we get a new name,
will the president declare a war on it?
We have a war on Drugs,
War on Drunk Driving
War on terror....
even a war on smoking now....
when will we get around to "war on Pain"????


wink....

Title: Re: A New Name for Cluster Headaches
Post by stevea on Dec 11th, 2005, 5:20pm
My mom always referred to them as "a special headache". ..Yeah, they're special alright.

Title: Re: A New Name for Cluster Headaches
Post by burnt-toast on Dec 11th, 2005, 6:27pm
I don't know how you adaquately describe with a short description a ....  

Skull Crushing, Eye Piercing, Nose Searing, Jaw Bashing, Tooth Rripping, Temple Drilling, Unearthly Pain, Don't Sleep, Don't Rest, Repetitive Attack syndrone.

Picking "Headache" to describe Clusters ranks up there with the really stupid choices of medical terms.

Tom    

Title: Re: A New Name for Cluster Headaches
Post by TonyG1 on Dec 11th, 2005, 7:59pm
Hypothalatrigeminal syndrome - a.k.a. (As Tom so aptly put and I added a little) - Skull Crushing, Eye Piercing, Nose Searing, Jaw Bashing, Tooth Rripping, Temple Drilling, Unearthly Pain, inject molten metal into my brain, Don't EVER Sleep, Don't EVER Rest,  Repetitive Attack syndrone

Title: Re: A New Name for Cluster Headaches
Post by boonie on Dec 11th, 2005, 10:38pm
I tell them I suffer from" trigeminal horribleness" then they say (That's terrible) then I say yes it's a very bad disorder. you wouldn't want it.   Lets face it headache just doesn't describe it period!!!

boonie

Title: Re: A New Name for Cluster Headaches
Post by maria9 on Dec 11th, 2005, 11:00pm
Hey all,

Many moon ago I won a contest on this site for renaming cluster headaches, this was my suggestion:

Supraorbital Hemicranial Ipsilateral Trigeminal Syndrome:

The SHITS in other words.

;;D  Marsha

Title: Re: A New Name for Cluster Headaches
Post by Redd715 on Dec 11th, 2005, 11:16pm
How about this....????


Quote:
Skull Crushing, Eye Piercing, deep ear stabbing Nose Searing, Jaw Bashing, Tooth Rripping, Temple Drilling, Unearthly Pain, inject molten metal into my brain, and set fire to my scalp Don't EVER Sleep, Don't EVER Rest, date ending, life stealing, career ending, money depleating, Repetitive at THE worst possible monent Attack syndrome.


Once again the beast interrupted a date going quite well, and guess who didn't return my calls the next day.  

Ahhhh the lovely life of a clusterhead. >:(

Title: Re: A New Name for Cluster Headaches
Post by zwibbs/Scott on Dec 12th, 2005, 1:44am
I have a very good doctor in my family. Once he told me that they have volumes in the Journals about "Cluster Headaches." I explained that the name is to vague, similar to "Cluster Housing." Nobody really knows what the hell that means but they accept the name.When you ask any doctor what inroads have they made in assisting or ( God fORBID) curing them.....it takes their voice away. I agree with you that a new clinical term would cause a peak in interest....Just look at the Avian Flu-----people would line up to get the tamaflu shot, when you have a better chance winning a lotto, and getting struck by ligtening in a blizzard, then actually getting that flu.

Title: Re: A New Name for Cluster Headaches
Post by chewy on Dec 12th, 2005, 7:57am
A lot of neuros are just starting to get it.

I'm not sure changing the rules with new lingo would help the cause. Only confuse it.

They wouldn't use my description any way. Not many would approach their doc and tell them those "m..fuckers" arte back again

Title: Re: A New Name for Cluster Headaches
Post by Redrum on Dec 12th, 2005, 9:44am
Headaches of Mass Destruction

Title: Re: A New Name for Cluster Headaches
Post by tenacious on Dec 12th, 2005, 7:21pm

on 12/11/05 at 14:39:20, BobG wrote:
Or when talking to an idiot........

Idiot: "Migraine?"

Me: "No, Cluster"

Idiot: "Oh yeah, I had One Of Those once".



;;D

Title: Re: A New Name for Cluster Headaches
Post by tenacious on Dec 12th, 2005, 7:26pm

on 12/12/05 at 07:57:21, chewy wrote:
A lot of neuros are just starting to get it.


Avian flu?     ;)

Title: Re: A New Name for Cluster Headaches
Post by owk on Dec 13th, 2005, 12:04am
Suicide headaches

Title: Re: A New Name for Cluster Headaches
Post by gobby on Dec 13th, 2005, 12:28am
How's about:  Cranial Incapasitory Syndrome

Or Maybe" "heyyoustupida$$holewhatthefuckareyoustaring
                   atImnotcryingandifyoudon'tgoawayI'llkickyou're
                    ignorantassallaroundtheroomintwentyminutes                               -itis


                                                      ::)

Title: Re: A New Name for Cluster Headaches
Post by kayarr on Dec 13th, 2005, 1:27am

Quote:
Or Maybe" "heyyoustupida$$holewhatthefuckareyoustaring
    atImnotcryingandifyoudon'tgoawayI'llkickyou're
     ignorantassallaroundtheroomintwentyminutes      -itis


or, HYSAWTFAYSAINCAIYDGAIKYIAAATRITMitis

it's shorter:)

Title: Re: A New Name for Cluster Headaches
Post by Spike_Inmyeye on Dec 13th, 2005, 1:28am
I have two possibilities.

"fuckmefuckmefuckme" which is my classic definition.

and my new, more literary, definition:

"Cerbercephalgia"

As I am sure you all remember from mythology class (right!) Cerberus was a three-headed dog with a snake for a tail.  He was a horrific animal who stood watch at the gates of Hades and was feared even by the gods.  He was charged with the job of devouring anyone trying to return to the land of the living and was so dreadful to behold that anyone that looked upon him was turned to stone.

So, I like my new name for CH but it may not quite work for when you are having one.  Example.  When I get a CH now I don't sit around saying "Cluster headache, cluster headace."  It just doesn't work.  I prefer to use the classic definition which all around me know and love.  Even  if I changed to "Cerbercephalgia"  I can't see me chanting that for headache relief.  

So,  when engaging in polite conversation, with my little pinkie in the air, I will now refer to it as "cerbercephalgia."  Which, from a literary and mythological standpoint gets the message across.  But, when being ravaged I will resort to the classic definition which we all understand.

Title: Re: A New Name for Cluster Headaches
Post by zwibbs/Scott on Dec 13th, 2005, 1:41am
Hi tenacious.........Avian Flu = "Bird Flu" If one of the major news magazine shows does a piece on this particular kind of flu--people here in New York start to go wild looking for the Tamaflu Injection, which supposedly is the only thing that will ward off the Bird Flu. But then again, if the Weatherman predict 3 inches of snow, the streets resemble the movie--"day after tomorrow."

Title: Re: A New Name for Cluster Headaches
Post by burnt-toast on Dec 13th, 2005, 4:17am
How about "Acute HypoCranial Orbital Expulsion"?

It's the next best thing to having your skull crushed and eye pushed in while your brain is sucked out of any  newly created openings.

Tom

Title: Re: A New Name for Cluster Headaches
Post by MAugust on Dec 13th, 2005, 9:54am

on 12/11/05 at 14:39:20, BobG wrote:
At my house it's called "One of those".

When She notices me holding my face.........

She: "Headache?"

Me: "Yep"

She: "One of those?"

Me: "Yep"

End of conversation.


Or when talking to an idiot........

Idiot: "Migraine?"

Me: "No, Cluster"

Idiot: "Oh yeah, I had One Of Those once".


Isn't it funny/annoying when Idiot says "Is it stress?" and you say "no", then they say "I've got a BC powder you can have if you want".  They mean well, but then most clueless morons do.

Title: Re: A New Name for Cluster Headaches
Post by Beastfodder on Dec 13th, 2005, 9:55am
Do we really need any more names?

I'm sure the plethora of wonderful names like CH, Horton's, Suicide etc make it hard for doctor's to diagnose in the first place.

It ain't going to stop psychosomatic half wits saying - hell yeah headaches are they're awful I get them.  It won't stop us taking limited pleasure from letting them know how damn stupid they are for saying that.

What we do need is lots more education, open minds and treatments that work.

Title: Re: A New Name for Cluster Headaches
Post by boomer52 on Dec 13th, 2005, 12:21pm
CLUSTERS of TERROR

Title: Re: A New Name for Cluster Headaches
Post by Sandy_C on Dec 13th, 2005, 5:37pm

on 12/11/05 at 14:28:11, Melissa wrote:
fuckinga$$holepieceofshitmonsterthatidliketobashthefuckoutof


:)


It's a little long, and difficult to pronounce properly (especially the $$ part) but I like it.  It has my vote.

Sandy

Title: Re: A New Name for Cluster Headaches
Post by Phil L on Dec 13th, 2005, 7:55pm
Yep, it's got my vote too!

Title: Re: A New Name for Cluster Headaches
Post by Jonny on Dec 13th, 2005, 8:16pm

on 12/13/05 at 09:55:20, Beastfodder wrote:
Do we really need any more names?

I'm sure the plethora of wonderful names like CH, Horton's, Suicide etc make it hard for doctor's to diagnose in the first place.

It ain't going to stop psychosomatic half wits saying - hell yeah headaches are they're awful I get them. It won't stop us taking limited pleasure from letting them know how damn stupid they are for saying that.

What we do need is lots more education, open minds and treatments that work.


AGREED!!!!

Title: Re: A New Name for Cluster Headaches
Post by chewy on Dec 13th, 2005, 9:41pm

Quote:
Do we really need any more names?

I'm sure the plethora of wonderful names like CH, Horton's, Suicide etc make it hard for doctor's to diagnose in the first place.

It ain't going to stop psychosomatic half wits saying - hell yeah headaches are they're awful I get them. It won't stop us taking limited pleasure from letting them know how damn stupid they are for saying that.

What we do need is lots more education, open minds and treatments that work.


Absolutey! The neuros are confused enough without changing names on them now.

Title: Re: A New Name for Cluster Headaches
Post by ArCane on Dec 15th, 2005, 1:41pm

on 12/11/05 at 23:16:18, Redd715 wrote:
How about this....????


Once again the beast interrupted a date going quite well, and guess who didn't return my calls the next day.

Ahhhh the lovely life of a clusterhead. >:(


That sucks Redd!!  No one should be judged on something they cant control.  If you were 10 years younger I would date you (Im only 23).  Quoting Lord of the Rings is just plain sexy  ;).

Allen

Title: Re: A New Name for Cluster Headaches
Post by Jasmyn on Dec 16th, 2005, 2:22am
We should keep the CH part for less confusion but lose the bloody "headache" word, so how about:

Cluster Horton's Cerbercephalgia?

CHc's


Title: Re: A New Name for Cluster Headaches
Post by Dave on Dec 18th, 2005, 9:11pm
How about "Frank Capra's Syndrome?"

He seems like the most famous CH sufferer.

Certainly sounds pretty serious.  Maybe terminal.  But certain to get people's attention and arouse curiousity.

Think of how people would react when you tell them you have Frank Capra's Syndrome.

Title: Re: A New Name for Cluster Headaches
Post by Spike_Inmyeye on Dec 19th, 2005, 12:39am
Capra had a few interesting descriptions of CH:


"the Judas pain. You welshed, compromised, sold out."


Title: Re: A New Name for Cluster Headaches
Post by zwibbs/Scott on Dec 19th, 2005, 1:49am
"Judas" gave up on life..........Any Ch sufferer wants to enjoy life, but has these damn things that take a percentage of their personalities away. IMO I spend too much time explaining what CLUSTER HEADACHE Is, then follow it up with " that is what I suffer from.' Nobody can understand that they come and go as they please.....unless, of course, you meet up with someone who is an actual Cluster Sufferer........One of the best paintings I ever saw was Jesus looking out of Heaven, saying.."I'm waiting for my friend Judas."

Title: Re: A New Name for Cluster Headaches
Post by Opus on Dec 19th, 2005, 9:45pm
Cluster attack syndrome

Opus/Paul

Title: Re: A New Name for Cluster Headaches
Post by Ghost on Dec 20th, 2005, 5:01pm

on 12/19/05 at 21:45:05, Opus wrote:
Cluster attack syndrome

Opus/Paul

Paul That is not a bad one and relitivaly states what it is, without over stating it.

Title: Re: A New Name for Cluster Headaches
Post by zwibbs/Scott on Dec 21st, 2005, 12:53am
' CLUSTER ATTACK SYNDROME" I like that !!!! I always refer to my experiences as attacks

Title: Re: A New Name for Cluster Headaches
Post by Phil L on Dec 23rd, 2005, 2:06am
Cluster Attack's got a nice ring to it, especially at
         
      three in the morning...........




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