I recently posted the following on my FB profile, and thought many here would understand far better than those who don't have CH...

Jus for the record, the term "headache" is a gross misnomer when it comes to cluster headaches, as the only similarity between the two is that they afflict the same location (the head). Comparing a cluster headache to any other kind of headache is like comparing someone breaking a lightbulb in your kitchen to your entire house being fire-bombed. Sure, your house is involved in both scenarios, but that's about where the similarities end.

Excellent analogy Jim!  I may have to borrow that  ;)

Headbomb. Cluster bomb. Starting to make more sense.

Chris H wrote on Nov 13^th, 2010 at 11:48am:

Headbomb. Cluster bomb. Starting to make more sense.

Just don't mention that when going through airport security!

Agreed about the misnomer factor.

So what should it be called?

Cluster nerve attacks?

Trigerminal nerve attacks?

Cluster head terrors?

Fuster Clucked?

I've never given it a name.  It's a cluster headache.  If I gave it a name it would give it substance.

           Potter

I call mine "Fred."

More options:

Trigeminal Incendiariosis
Eternal Internal Concussion
Bats in the Belfry (baseball bats)
Icepickintheeyeosis
WTF syndrome

Can't remember who wrote it but it was roughly, "Don't know why they call these suicide headaches. Any more stupid remarks from do-gooders and they'd be better named homicide-headaches!"

I have always likened them to more of an attack or a seizure.

I really think that, no matter what they are called, people who don't either live with us or experience the HA themselves will ever truly understand what they are. 

Someone just the other day said to me, "Hey Jeannie!  I thought of you the other day.   I had this TERRIBLE sinus headache and it made me think of your headaches."

I told him I was sorry that he had had such a bad headache.  What else could I say? 

Agostino Leyre wrote on Nov 15^th, 2010 at 2:21pm:

I have always likened them to more of an attack or a seizure.

I have insisted to everyone who would listen that these have many seizure like qualities: rapid onset, abrupt end, postictyl malaise and confusion...The only thing lacking in our suggestions on what to call them is a cool acronym. Something like Hyperthalmic Anterior Trigeminal Episode: HATE. Not so good, but you get the idea. Blessings! lance

Good thinking there, Lance.  Keep it up.  I like the acronym.

Jerry

Here's synopsis of what's been suggested:

• Headbomb.
  
• Cluster bomb.
  
• Cluster nerve attacks.
  
• Trigerminal nerve attacks.
  
• Cluster head terrors.
  
• Fuster Clucked.
  
• Fred.
  
• Trigeminal Incendiariosis.
  
• Eternal Internal Concussion.
  
• Bats in the Belfry (baseball bats).
  
• Icepickintheeyeosis.
  
• WTF syndrome.
  
• Hyperthalmic Anterior Trigeminal Episode: HATE.
  
  
  

Anybody want to start a campaign with the AMA?

Brew wrote on Nov 16^th, 2010 at 11:56am:

Here's synopsis of what's been suggested: Headbomb. Cluster bomb. Cluster nerve attacks. Trigerminal nerve attacks. Cluster head terrors. Fuster Clucked. Fred.  Trigeminal Incendiariosis. Eternal Internal Concussion. Bats in the Belfry (baseball bats). Icepickintheeyeosis. WTF syndrome. Hyperthalmic Anterior Trigeminal Episode: HATE. Anybody want to start a campaign with the AMA?

• Fred.    I still laugh at that one. 
  

• Cluster Fecund Ulcerative Cranial Kinetic Efferent Dysplasia

Again Ginger, that mind!!! ;D

Sadly, no matter what it's called, those who do not suffer from them, will never "get it." But that's okay, people here will always understand. ;)

Joe

Guiseppi wrote on Nov 16^th, 2010 at 5:43pm:

Sadly, no matter what it's called, those who do not suffer from them, will never "get it." But that's okay, people here will always understand. ;) Joe

My point exactly, oh wise one. Trying to get it renamed so that people outside our group of sufferers and supporters, and the medical community might somehow glean some special understanding is kind of like pi$$ing into the wind. Just try not getting it all over yourself.

Brew wrote on Nov 16^th, 2010 at 5:53pm:

Guiseppi wrote on Nov 16th, 2010 at 5:43pm: Sadly, no matter what it's called, those who do not suffer from them, will never "get it." But that's okay, people here will always understand. ;) Joe My point exactly, oh wise one. Trying to get it renamed so that people outside our group of sufferers and supporters, and the medical community might somehow glean some special understanding is kind of like pi$$ing into the wind. Just try not getting it all over yourself.

Oh Wise One....I like that title....could you encourage Christy to adopt that as my nick name?????? Lord knows I'd do the same for you in a heart beat! ;)

Joe

I do like "Fred". It makes it seem like a neighbor's come to visit.

"Oh dammit! It's Fred again! Don't answer the door!"

I call mine brainial infuxshunz. Makes my wife laugh.

Long before I even knew the name CH I called it Volcranium horrendus.

My wife calls min Igor because I tend to get a "little" hard to get along with at times.

Jerry

I named mine "Roseanne".  Why you might ask?

Because I felt my beast seemed like a horrendously overbearing, nasty, vindictive, bi**chy female, and Roseanne Barr immediately popped into my mind.

>:(

Never did like her.

SandyC

How about:

Cranialneurohypothalmictrigeminal Syndrome  ;)

Once we say the word, they will never ask again and will completely understand because it sounds so, so, so - well medical. ::)

SandyC

Sandy_C wrote on Nov 17^th, 2010 at 10:40am:

I named mine "Roseanne".  Why you might ask? Because I felt my beast seemed like a horrendously overbearing, nasty, vindictive, bi**chy female, and Roseanne Barr immediately popped into my mind. >:( Never did like her. SandyC

But she's a domestic goddess.

Sandy_C wrote on Nov 17^th, 2010 at 10:46am:

How about: Cranialneurohypothalmictrigeminal Syndrome  ;) Once we say the word, they will never ask again and will completely understand because it sounds so, so, so - well medical. ::) SandyC

1)...I love that name and idea...

2)...Now if we could get the medical community to change the name
3)...This way we would never hear someone telling us that they get the same thing as us and tell us that they take 1 asprin (if its real bad they take 2 of them...Shut all the lights off and lay down till it goes away
4)...I know they changed the medical name from "manic-depression" to bipolar in the late part of the 80's (had a friend who was diagnosed back then)

Doctors dont even agree what to call it.

"I dont have migraines butthead", can I see someone else. ;D ;D ;D ;)
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

men don't get migrains silly, they get CH
women don't get cH silly, they all have migrains....
it's really quite simple! ;D

Joe

I don't even bother saying I have a headache - it's an attack. Sinus gives you headaches. Too much wine or booze gives you headaches. Bills give you headaches.

I had someone tell me yesterday she completely understands what I'm going through. I just need to take 2 ibuprofen, 2 tylenol and 2 caffeine pills. Hmmmm, sounds like a couple of excedrin to me LOL. Oh and, no, that doesn't work on me. But would you happen to have a hammer? Still not sure if it's for me or her.  :-?

It is a dumb name, especially for a neurological disease. I definitely like Fred. But the sound of a ridiculously long name that you can't spell or pronounce would sound so scary and rare that no one would dare challenge you or offer you an aspirin.

~ Katie

I may borrow that and post it on my FB proflie too, in the hopes that others will faintly comprehend what we are going through! 

Everyone feel free to borrow and repost the analogy as applicable.  :)

Sad thing is, I don't think non-sufferers are going to change what they think or say about CH, either way.   And I can't honestly blame them.  We really only know about that which we experience ourselves.  Second-hand knowledge is never as complete as first-hand knowledge.  And CH is one thing about which I wish I never had any first-hand knowledge.

Agostino Leyre wrote on Nov 15^th, 2010 at 2:21pm:

I have always likened them to more of an attack or a seizure.

indeed

AussieBrian wrote on Nov 16^th, 2010 at 6:25pm:

Long before I even knew the name CH I called it Volcranium horrendus.

I'm giving this one my vote. It sounds so classically Greek and all that. And I think we're only half serious here...mostly finding gallows humor in a horrible infliction...but truly wishing the medical community would get us out of the migraine category for sure and for good. Blessings! lance