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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl Cluster Headache Help and Support >> Cluster Headache Specific >> I wish someone would give CH a scarier name http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1299939280 Message started by Melby29 on Mar 12^th, 2011 at 9:14am

Title: I wish someone would give CH a scarier name
Post by Melby29 on Mar 12^th, 2011 at 9:14am

That's pretty much all I'm going to say cos it's 1am and if I get started on how badly i am being treated at work at the moment, I'll never stop and I need some sleep.

Good news is, I really do seem to be out of my cycle. And I really do feel soooooooooooooooooo different.

Bad news is, since I only got a 4 week break last time, and it's been about 2 weeks now, I am already starting to feel the dread that it will be back soon. Still.... there's hope, right?

Title: Re: I wish someone would give CH a scarier name
Post by Guiseppi on Mar 12^th, 2011 at 9:25am

There's always hope. [smiley=hug.gif] More importantly there's always help and support here.

We joke a lot about needing a more appropriate name for CH...then we always agree it's a waste of time! If you don't get CH, you'll never "get" CH. Hang in there, hoping beasty by-passes you for a bit.

Joe

Title: Re: I wish someone would give CH a scarier name
Post by Batty on Mar 12^th, 2011 at 9:26am

Hi Melby!

Please don't live in dread of the next time, just get on with your life in between and enjoy the PF days....
Get all your meds ready for the next visit, when it hits next time and the tears are flowing, just force yourself to remember HOW GOOD it feels to be free of it!
Say to yourself 'Its going, it's going' and you will get through!

Think positive and get out from under its shadow....
You rule it Melby! Come on! You can do this!

Strength

Gary

Title: Re: I wish someone would give CH a scarier name
Post by Glassman on Mar 12^th, 2011 at 9:43am

I've spent so many years telling people about Cluster Headaches that they'd only be confused and care less (some people shrug it off since THEY don't get headaches) if I suddenly told them the name had been changed.
It'd be akin to suddenly saying my name is Bob, not Gary. ;)

Melbly, I know your dread, like Batty said, get your meds together and round up your support group (the one's you can touch and the ones here on the board). Make the most of when you're pain free. I'm sorry work sucks, get with some friends and go out or make something fun for dinner...it would work for my wife (she had a sucky job for 17 years).

Hang in there, we're always here for you!

Title: Re: I wish someone would give CH a scarier name
Post by Brew on Mar 12^th, 2011 at 9:50am

Boris. We'll call it Boris.

That's pretty scary. :o

Title: Re: I wish someone would give CH a scarier name
Post by Batty on Mar 12^th, 2011 at 9:56am

Brew...
Does that mean we are now Boris.com?

Scared!

Gary

Title: Re: I wish someone would give CH a scarier name
Post by Bob Johnson on Mar 12^th, 2011 at 10:40am

"Hypothalmus neurological dysfunction syndrome".

Spit that out and you won't hear, "Oh, just a headache. I have them, too."

Title: Re: I wish someone would give CH a scarier name
Post by Guiseppi on Mar 12^th, 2011 at 10:54am

Bob Johnson wrote on Mar 12^th, 2011 at 10:40am:

"Hypothalmus neurological dysfunction syndrome".

Spit that out and you won't hear, "Oh, just a headache. I have them, too."

DAMN! :o just DAMN! ;D

Joe

Title: Re: I wish someone would give CH a scarier name
Post by Batty on Mar 12^th, 2011 at 10:58am

HNDS

Has a sinister ring!

Gary

Title: Re: I wish someone would give CH a scarier name
Post by 37-41withrestrictions on Mar 12^th, 2011 at 12:21pm

I wonder how many people would say " Ooh HNDS.. I had that once but Im better now"!!!
:D ;D

Title: Re: I wish someone would give CH a scarier name
Post by Bob Johnson on Mar 12^th, 2011 at 1:20pm

What would I do without Joe?!

Title: Re: I wish someone would give CH a scarier name
Post by Guiseppi on Mar 12^th, 2011 at 1:22pm

Bob Johnson wrote on Mar 12^th, 2011 at 1:20pm:

What would I do without Joe?!

he he he ;D

Title: Re: I wish someone would give CH a scarier name
Post by Glassman on Mar 12^th, 2011 at 1:40pm

HNDS, I like it!!

Title: Re: I wish someone would give CH a scarier name
Post by Brew on Mar 12^th, 2011 at 1:46pm

How about Bruno? Or Guido?

Those are pretty scary.

Title: Re: I wish someone would give CH a scarier name
Post by Batty on Mar 12^th, 2011 at 1:56pm

Melby, you started this!

Brew
'Bruno' reminds me of a big, overweight Rottweiler with slobber on its chops!

Yeah, that would do!

(this is gonna roll Guys!) ;)

Slobbering

Gary

Title: Re: I wish someone would give CH a scarier name
Post by bejeeber on Mar 12^th, 2011 at 3:09pm

I think one of my favorites I've heard here so far - especially for it's accuracy - is "Nuclear pinging behind the eyeball"

NPBE?

"Headache" is the worst idea ever for naming this condition, that's fer sure!!

Of course if it was named "worst pain you've ever imagined amplified 100x and placed right behind your eye, causing terror and thoughts of suicide" I think I'd still hear "oh yeah my wife gets migraines too". :P

Title: Re: I wish someone would give CH a scarier name
Post by AussieBrian on Mar 12^th, 2011 at 6:54pm

Wish I could remember who said it - "Given the stupid advice people offer us, I reckon these should be called Homicide Headaches!"

Title: Re: I wish someone would give CH a scarier name
Post by Mike NZ on Mar 12^th, 2011 at 8:38pm

Devil's humour headaches - they are bad enough to drive almost anyone to drink but then drink is a trigger for most of us!

I'm one of the lucky ones where it isn't a trigger.

Title: Re: I wish someone would give CH a scarier name
Post by Melby29 on Mar 13^th, 2011 at 4:24am

OMG you guys are hilarious. I think from a strictly medical point of view, HNDS is fantastic. VERY mysterious, and something to be taken seriously. Nobody would think that an aspirin and a quick lay down would fix that. At least the "homicidal thoughts" could be eliminated from the list of symptoms!

If I went in to work and said that is what I had been diagnosed with, watch and they would all gasp and go "Oh man, you poor thing! Is there anything we can do? Take as much time as you need!!!"

And maybe the textbooks could say "Also known as Goadsby's Syndrome"

Title: Re: I wish someone would give CH a scarier name
Post by Barry_T_Coles on Mar 13^th, 2011 at 8:29am

I have never yet come across any one who will willingly admit to being brain damaged.
Try this line, I have a neurological disorder where part of my brain malfunctions sending wrong messages to the blood cells in my head that then expand causing severe pain.
Haven't had one yet say "Oh I had one of those once"

Cheers
Barry

Title: Re: I wish someone would give CH a scarier name
Post by Melby29 on Mar 13^th, 2011 at 4:59pm

So Barry, rather than giving it a new name, we could just give it a new description - Cluster Headaches are a neuro-vascular dilation disorder, caused by a malfunction in the hypothalamus, causing excrutiating cranial pain?

Title: Re: I wish someone would give CH a scarier name
Post by Jair Crawford on Mar 13^th, 2011 at 5:40pm

I agree. Cluster Headache does not describe the condition very well. I mean, yes, they attack in clusters but these attacks are most certainly NOT headaches.

Hmm... a scarier name... how about: Acute Cyclic Vascular Trigeminal Cephalalgia?

Or is that a bit... much? lol

Title: Re: I wish someone would give CH a scarier name
Post by primetime on Mar 28^th, 2011 at 2:22pm

I think what bothers me the most is that when you're trying to explain to someone what CH is like and you drop the "most excruciating pain none to humans" on people you either get a blank stare or the "Yeah, right" look.

Not that I want pity or anything, just some understanding of what it's like. As tough as can be to battle the beast, battling the perception of the condition can be pretty tough as well.

Title: Re: I wish someone would give CH a scarier name
Post by Glassman on Mar 28^th, 2011 at 4:51pm

Maybe we should call it "Ice pick to the eye" or "Ball-peen hammer to the head" syndrome?
8-)

Title: Re: I wish someone would give CH a scarier name
Post by Granny Arizona on Mar 28^th, 2011 at 10:48pm

I think it would me "fun" to have a list of replies people give when we try to describe our condition. I'm starting to keep it a secret because I resent getting the flippant replies. As for the pain? It feels like my scalp is being ripped off. My attacks come in the middle of the night. By the time I need to leave the house (6 hours later) I just fine. No one can believe the incredible pain and loss of sleep I suffer ... ( no one but you guys who are fellow sufferers)
Linda aka Granny Arizona

Title: Re: I wish someone would give CH a scarier name
Post by 37-41withrestrictions on Mar 29^th, 2011 at 6:27am

Explaining the symptoms of CH is difficult enough...just imagine the response if it was to be called BORIS, GUIDO or BRUNO.
" Sorry I'm not on my best today as I had a really bad BORIS last night...... :)" Danced all night with GUIDO last night!!!!

Raise some eyebrows there!!! ::) especially for the gentlemen sufferers!!

Title: Re: I wish someone would give CH a scarier name
Post by GrandPotentate on Apr 2^nd, 2011 at 10:17pm

Yeah, "Horton's syndrome" makes me think of hearing a who. How about:

Cranial Really Astonishing Pain.
Super High Intensity Torment.

I already use the acronyms when I feel a hit coming on.

Title: Re: I wish someone would give CH a scarier name
Post by warnberh on Apr 4^th, 2011 at 1:20pm

I've been calling them "Icepick Rape-N-Runs"

Title: Re: I wish someone would give CH a scarier name
Post by ClusterHeadacheSurvivor on Apr 8^th, 2011 at 11:32pm

Suicide Headache. No other name comes to mind as I sit here having another chronic attack...

Title: Re: I wish someone would give CH a scarier name
Post by sandie99 on Apr 9^th, 2011 at 5:46am

I simply like horton's neuralgia. That is what I tell to people, when I do mention it. But I do agree: the word "headache" is not good enough, it diminishes the pain and the suffering ch puts us through.

And I have a lot of damage control yet to be done, because my mother always tell people that I have pain "similar to migraine". Some folks do take it more seriously - lots of migraine sufferers in this country - but that doesn't tell them accurate information about ch.

I do dread the day when I will have to explain ch to my new in-laws... I plan to do it when I absolutely must. My mother-in-law will understand, she is that kind of person, but I'm entirely sure about the rest.

Sanna

Title: Re: I wish someone would give CH a scarier name
Post by fastteamster on Apr 9^th, 2011 at 1:44pm

i had someone ask me with complete seriousness, maybe its just in your head? ya its in my head thats thats why i keep punching the side of my head

Title: Re: I wish someone would give CH a scarier name
Post by Glassman on Apr 9^th, 2011 at 6:00pm

You would have had more satisfaction by punching the side of their head!! [smiley=bloos.gif]

Title: Re: I wish someone would give CH a scarier name
Post by 37-41withrestrictions on Apr 12^th, 2011 at 3:12am

fastteamster wrote on Apr 9^th, 2011 at 1:44pm:

i had someone ask me with complete seriousness, maybe its just in your head? ya its in my head thats thats why i keep punching the side of my head

Thats as good as being called an "attention seeker" >:(

Title: Re: I wish someone would give CH a scarier name
Post by bejeeber on Apr 13^th, 2011 at 1:48am

GrandPotentate wrote on Apr 2^nd, 2011 at 10:17pm:

Cranial Really Astonishing Pain.....

....I already use the acronyms when I feel a hit coming on.

Oh that is good....that is very very good. ;D

Title: Re: I wish someone would give CH a scarier name
Post by Apollo on Apr 15^th, 2011 at 3:11pm

My vote is for Bloody-Death-Stab Headschism.

or a Blaring Inner-Temple Cranial Hurt (acronyms ftw!)

Title: Re: I wish someone would give CH a scarier name
Post by Headache Boy uk on Apr 16^th, 2011 at 10:32pm

How about Worst Imaginable Pain Syndrome or WIPS for short and you could always add "your ass" at the end :D

Nigel

Title: Re: I wish someone would give CH a scarier name
Post by Glassman on Apr 17^th, 2011 at 8:35am

Nigel,
That is a favorite! ;D
-Gary

Title: Re: I wish someone would give CH a scarier name
Post by kika on Apr 25^th, 2011 at 3:47pm

"Of course if it was named "worst pain you've ever imagined amplified 100x and placed right behind your eye, causing terror and thoughts of suicide" I think I'd still hear "oh yeah my wife gets migraines too"

Too true!

My vote would be for " Someone is digging around in my skull with a razor sharp ice pick in order to poke out my eyeball." Everyday. For about an hour. Sometimes twice a day. For 2 months.

Not a great acronym for that one though...........

Title: Re: I wish someone would give CH a scarier name
Post by ReneeM on Apr 26^th, 2011 at 3:43pm

I like this tread, and I agree, Cluster Headache is lacking in so many ways.

CH compared to a headache is much like the Earth compared to the Sun: sure, they are both roughly spherical, and float in space, but that's about all they have in common. One is calm and peaceful, the other is massive and a ball of fire. Much like headaches compared to Clusters if you ask me.

Mine don't even come in clusters. Most people I explain them to think CHs are these little tiny groups of headaches in the head, little clusters of headaches, pin pricks if you will. So a name change clearly is in order.

But, the challenge is we have to start with what people know. You can't just say 'take the worst pain you can imagine' because everyone's concept of pain is different. For example: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

END PRINTPAGE

So, let's say... Take a normal person with a bad headache. Now, send them off to pick up their teenager from a nightclub. They walk in the door and are greeted by the two loudest heavy metal rock bands they have ever heard, at either end of the room, battling it out to see who can play the loudest. Meanwhile the room is filled with teens jumping up and down, banging their heads beneath 1000 flashing strobe lights. They must enter this room and find their child.

Enter level 1 of a cluster headache on a scale of 10.

Now, we've given a normal person something they can relate to. A measurement they can put into real terms.

Now, to name it.

Heavy metal rock band headache from Hell with hot pokers in the eyes? OK, too long and too descriptive.

Perhaps, a nice medical name might be best.

Renée

Title: Re: I wish someone would give CH a scarier name
Post by Headache Boy uk on Apr 26^th, 2011 at 7:52pm

The closest any one who doesn't suffer this condition has come to experiencing these headaches is an ice cream headache because it happens on the same nerve set , so times that by 50 or so and then make it last for an hour or two ......

I've told that two a few people and I think thay kinda got it but theres still a hint of total disbelief in there eyes , like your exaggerating how much it hurts.

still don't help with the name dose it. :-/

God bless

Nigel

Title: Re: I wish someone would give CH a scarier name
Post by ReneeM on Apr 27^th, 2011 at 2:06am

That's a good description Nigel, and one I use often. I also describe it as a muscle cramp, in the eyeball. It comes on just as sudden as a muscle cramp, and is all consuming like one, then goes away. But the ice cream headache is probably closer to the mark in many ways.

But the name, there has got to be a better name.

Title: Re: I wish someone would give CH a scarier name
Post by 37-41withrestrictions on Apr 27^th, 2011 at 4:17am

Based on the ice cream description

Neurofreezitis? ::)

Title: Re: I wish someone would give CH a scarier name
Post by Headache Boy uk on Apr 28^th, 2011 at 2:44pm

Cool

Title: Re: I wish someone would give CH a scarier name
Post by Cittenscollar on May 16^th, 2011 at 6:19am

99% of the time that I need to bring CH up to somebody, I don't even say what it's called. I just tell people I have a neurological condition that causes intense pain and makes me unable to function. It works well enough.

The best response I ever got was from my chemistry professor who suffers from migraines. I sort of offhand mentioned that I'd had a headache the night before, and he asked "Oh, do you get migraines to?" and I said no, I get something called cluster headaches. His eyes immediately widened and he said "Oh God, I'm so sorry. My migraines are bad enough, I can't even imagine..." He was the first (and only) person I've ever encountered who actually knew what they were. His reaction of total horror actually made me laugh - FINALLY somebody who understood the severity!

Title: Re: I wish someone would give CH a scarier name
Post by ReneeM on May 16^th, 2011 at 8:20am

Cittenscollar wrote on May 16^th, 2011 at 6:19am:

...
The best response I ever got was from my chemistry professor who suffers from migraines. I sort of offhand mentioned that I'd had a headache the night before, and he asked "Oh, do you get migraines to?" and I said no, I get something called cluster headaches. His eyes immediately widened and he said "Oh God, I'm so sorry. My migraines are bad enough, I can't even imagine..." He was the first (and only) person I've ever encountered who actually knew what they were. His reaction of total horror actually made me laugh - FINALLY somebody who understood the severity!

Good one, I like it.

I recently wrote about them on another blogging website where I'm pretty well known. Someone wrote back saying... '<swear word> how awful. I'd never actually heard of cluster headaches until a few weeks ago when someone explained what they were (I'm a total wuss with headaches so I'm typing this practically winching!!)'

That just so captured it for me, seeing them at their computer, winching, imagining the pain beyond what they could imagine.

Yeah, we need a better name.