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37-41withrestrictions

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Re: I wish someone would give CH a scarier name
Reply #25 - 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!!! Roll Eyes

especially for the gentlemen sufferers!!

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GrandPotentate CH.com Old Timer Offline mmmmmmmmmm Posts: 254 Michigan City, IN USA Gender:	Re: I wish someone would give CH a scarier name Reply #26 - 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.
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warnberh CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 16 x0\|Long Island City\|USA\|\|0\|0\|NY,New_York	Re: I wish someone would give CH a scarier name Reply #27 - Apr 4^th, 2011 at 1:20pm I've been calling them "Icepick Rape-N-Runs"
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ClusterHeadacheSurvivor CH.com Junior Offline I love YaBB 1G - SP1! Posts: 29 x0\|London\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: I wish someone would give CH a scarier name Reply #28 - Apr 8^th, 2011 at 11:32pm Suicide Headache. No other name comes to mind as I sit here having another chronic attack...
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sandie99

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Re: I wish someone would give CH a scarier name
Reply #29 - 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

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fastteamster CH.com Newbie Offline I Love CH.com! Posts: 10	Re: I wish someone would give CH a scarier name Reply #30 - 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
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Glassman CH.com Veteran Offline I Love CH.com! Posts: 203 Ohio Gender:	Re: I wish someone would give CH a scarier name Reply #31 - Apr 9^th, 2011 at 6:00pm You would have had more satisfaction by punching the side of their head!!
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37-41withrestrictions CH.com Veteran Offline NOT SO PF AT THE MOMENT Posts: 124 Chester UK Gender:	Re: I wish someone would give CH a scarier name Reply #32 - 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"
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bejeeber

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Re: I wish someone would give CH a scarier name
Reply #33 - 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. Grin

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Apollo CH.com Newbie Offline Clusterheads Unite Posts: 13 Gender:	Re: I wish someone would give CH a scarier name Reply #34 - Apr 15^th, 2011 at 3:11pm My vote is for Bloody-Death-Stab Headschism. or a Blaring Inner-Temple Cranial Hurt (acronyms ftw!)
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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: I wish someone would give CH a scarier name Reply #35 - 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 Nigel
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Glassman CH.com Veteran Offline I Love CH.com! Posts: 203 Ohio Gender:	Re: I wish someone would give CH a scarier name Reply #36 - Apr 17^th, 2011 at 8:35am Nigel, That is a favorite! -Gary
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kika

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Re: I wish someone would give CH a scarier name
Reply #37 - 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...........

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« Last Edit: Apr 25^th, 2011 at 3:48pm by kika »

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MoxieGirl

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Re: I wish someone would give CH a scarier name
Reply #38 - 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: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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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

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Headache Boy uk

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Re: I wish someone would give CH a scarier name
Reply #39 - 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. Undecided

God bless

Nigel

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MoxieGirl

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Re: I wish someone would give CH a scarier name
Reply #40 - 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.

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37-41withrestrictions CH.com Veteran Offline NOT SO PF AT THE MOMENT Posts: 124 Chester UK Gender:	Re: I wish someone would give CH a scarier name Reply #41 - Apr 27^th, 2011 at 4:17am Based on the ice cream description Neurofreezitis?
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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: I wish someone would give CH a scarier name Reply #42 - Apr 28^th, 2011 at 2:44pm Cool
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Cittenscollar

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Re: I wish someone would give CH a scarier name
Reply #43 - 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!

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MoxieGirl

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Re: I wish someone would give CH a scarier name
Reply #44 - 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.

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