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Melby29

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I wish someone would give CH a scarier name
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?

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I wish someone would give CH a scarier name Reply #1 - Mar 12^th, 2011 at 9:25am There's always hope. 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
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Batty

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Re: I wish someone would give CH a scarier name
Reply #2 - 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

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"An old Wolf may lose his teeth, but never his nature.."

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Glassman

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Re: I wish someone would give CH a scarier name
Reply #3 - 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. Wink

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!

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: I wish someone would give CH a scarier name Reply #4 - Mar 12^th, 2011 at 9:50am Boris. We'll call it Boris. That's pretty scary.
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: I wish someone would give CH a scarier name Reply #5 - Mar 12^th, 2011 at 9:56am Brew... Does that mean we are now Boris.com? Scared! Gary
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: I wish someone would give CH a scarier name Reply #6 - 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."
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I wish someone would give CH a scarier name Reply #7 - 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! just DAMN! Joe
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: I wish someone would give CH a scarier name Reply #8 - Mar 12^th, 2011 at 10:58am HNDS Has a sinister ring! Gary
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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 #9 - Mar 12^th, 2011 at 12:21pm I wonder how many people would say " Ooh HNDS.. I had that once but Im better now"!!!
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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: I wish someone would give CH a scarier name Reply #10 - Mar 12^th, 2011 at 1:20pm What would I do without Joe?!
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: I wish someone would give CH a scarier name Reply #11 - 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
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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 #12 - Mar 12^th, 2011 at 1:40pm HNDS, I like it!!
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: I wish someone would give CH a scarier name Reply #13 - Mar 12^th, 2011 at 1:46pm How about Bruno? Or Guido? Those are pretty scary.
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: I wish someone would give CH a scarier name Reply #14 - 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
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bejeeber

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Re: I wish someone would give CH a scarier name
Reply #15 - 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". Tongue

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« Last Edit: Mar 12^th, 2011 at 3:09pm by bejeeber »

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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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: I wish someone would give CH a scarier name Reply #16 - 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!"
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: I wish someone would give CH a scarier name Reply #17 - 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.
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Melby29

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Re: I wish someone would give CH a scarier name
Reply #18 - 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"

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Barry_T_Coles

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Re: I wish someone would give CH a scarier name
Reply #19 - 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

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« Last Edit: Mar 13^th, 2011 at 8:30am by Barry_T_Coles »

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Of all the things i've lost in life the thing i miss most is my mind.

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Melby29 CH.com Junior Offline I Love CH.com! Posts: 91	Re: I wish someone would give CH a scarier name Reply #20 - 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?
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Jair Crawford CH.com Junior Offline I Love CH.com! Posts: 43 Gender:	Re: I wish someone would give CH a scarier name Reply #21 - 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
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primetime

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Re: I wish someone would give CH a scarier name
Reply #22 - 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.

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"Our greatest glory is not in never failing, but in rising up every time we fail." -Ralph Waldo Emerson

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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 #23 - 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?
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Granny Arizona

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Re: I wish someone would give CH a scarier name
Reply #24 - 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

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