Click this link to read a post I like on the clusterheadaches.com message board...

Jair Crawford

CH.com Junior

Offline

I Love CH.com!

Posts: 43
Gender: male

But seriously, why do we call them headaches?
Oct 23^rd, 2013 at 1:01am

They aren't even aches! They're like... well honestly from personal experience, I don't know...

... but I've watched videos on youtube of people in an attack. And from what I saw... that ain't no 'ache' they're going through. I swear, the first time I saw one of those videos, I thought the person was having a seizure, but then it hit me that he was reacting to the PAIN...

I don't have CH, I don't know anyone personally who has CH, but after what I've seen and what I've read (I've been following this board for a while; might even try Batch's full formula since it's good for you CH or no CH), I feel it's the very /least/ I can do to show some support and try to spread awareness. People don't know enough about this disease. Even neurologists. And the first documented case was when... during the 1700's? What the heck is up with that? The pain you all have to endure... it's just unnacceptable. Ah... I'm ranting/rambling now, but back on topic.

WHO, in the history of... history... had the audacity do call this horrible disease 'Cluster Headache'? It makes no sense... When the largest nerve in the brain is literally on /fire/ ... that's NOT a headache! And when people hear about the disease, then they hear the name, it's like "oh it's just a headache, like migraines." Trust me... I thought that too... until I saw the youtube videos...

Maybe if we started referring to it as another name... something more appropriate. And I mean seriously. If it takes referring to it by a name that sounds more appropriate to help spread awareness, then, we should probably do it.

What do you think? I feel your opinions as suporters and people with personal experience with CH should automatically have more weight than mine. I mean, I can't even begin to comprehend the pain.

Back to top

I don't have CH. I don't know anyone in person who has CH. But I want to help. Let me know how I can spread awareness.

https://www.facebook.com/jair.crawford?ref=tn_tnmn

IP Logged

Click Here to visit the CH.com Facebook page!

maz

CH.com Hall of Famer

Offline

I Love CH.com!

Posts: 1071
Hampshire, England
Gender: female

Re: But seriously, why do we call them headaches?
Reply #1 - Oct 23^rd, 2013 at 3:43am

Thanks for taking an interest. I agree it's a ridiculous name and the disease will never be given credibility with a name like that. you are right - people say "I have those too. I have to take an extra paracetomol to get rid of it". There is a thread titled "dopiest responses". If it weren't so tragic it would be funny. I have personal experience of this. After I'd explained the condition to a colleague at work she said
"oh well, if it's in your brain you need to see a psychiatrist". Smiley

Obviously people are trying to be kind when they give you their headache remedies but it does become frustrating, so I nod, smile, thank them, and walk away.

Unless I'm talking to a doctor, I tell people I suffer from trigeminal nerve compression, which is EXACTLY what is happening in the head. It's not brushed off so lightly, and no one offers advice, except of course that you need a psychiatrist.

What gets me most is that this condition is hailed as "the most painful condition known to medical science" and yet the medical profession knows so little about it, and makes no attempt to find out. I have heard that in a doctors 5 years of training, head aches take up 1 hour.

If you are not a sufferer or supporter, what brought you to this site in the first place? Whatever the reason, thank you for your understanding and support. It's rare, and appreciated.

Best wishes
Maz.

Back to top

IP Logged

AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: But seriously, why do we call them headaches? Reply #2 - Oct 23^rd, 2013 at 5:01am Nicest description I've seen came not from a CHead but the world's greatest supporter. In writing to another supporter brand new to this nightmare she said, "They go to a place we can't access, nor ever hope to understand."
Back to top	My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com IP Logged

maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: But seriously, why do we call them headaches? Reply #3 - Oct 23^rd, 2013 at 7:15am Oh Brian. That lady really understands.
Back to top	IP Logged

Hoppy

CH.com Alumnus

Offline

LAUGHTER IS THE BEST MEDICINE

Posts: 1890
Perth WA
Gender: male

Re: But seriously, why do we call them headaches?
Reply #4 - Oct 23^rd, 2013 at 7:42am

Hi Jair,
Should we just go back to the dark ages or when they were
known as Hortons Cephalalgia, named after Dr B. T. Horton.
Then in his paper in 1939 re-named cluster headaches,
because thats what they are, "Held together; a bunch."
Now even in this day and age, their are Doctors and neuros
out there who are still in Smiley

when it comes
to diagnosing CH's let alone treating them. So lets just
change the name and Smiley

those who
are famillar with CH's. Shocked

Hoppy.

Back to top

« Last Edit: Oct 23^rd, 2013 at 8:32am by Hoppy »

IP Logged

Jair Crawford

CH.com Junior

Offline

I Love CH.com!

Posts: 43
Gender: male

Re: But seriously, why do we call them headaches?
Reply #5 - Oct 23^rd, 2013 at 12:20pm

@Maz; Yeah, I was just reading that 'dopiest responces' thread. You have no idea how inspiring it is to me to see you all being able to read that, and just laugh... to find comic relief in a thread like that, when you all are going through a pain that I can't even begin to comprehend or imagine...

To answer your question on what led me here: Two years ago, I was in my dorm in college. I was browsing random stuff on youtube. I typed in "worst pain in the world" or something along those lines. I was curious. I had no idea it would lead me to cluster headaches. I'd heard about them before but I hadn't heard of just how painful they are. When I saw the videos... I dunno, it made me want to do /something/. So I looked up more info about the condition on google, and it eventually led me to this site. I decided to join the forums here to show whatever support I could.

@AussieBrian; I agree with Maz. That's one serious supporter who said that.

@Hoppy; You bring up a good point. It would be confusing to docs and that's the last thing we want. However I will say that Horton's Cephalalgia sounds a lot more convincing than Cluster Headache, imo. I wonder why he changed it. I mean, yes, they come in clusters... but it's really the term 'headache' that I just don't understand. Yes, it's a pain in the head, but... a headache? Really?

Back to top

« Last Edit: Oct 23^rd, 2013 at 12:26pm by Jair Crawford »

I don't have CH. I don't know anyone in person who has CH. But I want to help. Let me know how I can spread awareness.

IP Logged

Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: But seriously, why do we call them headaches? Reply #6 - Oct 23^rd, 2013 at 4:24pm Hi Jair, I would imagine the reason he changed the name of the condition is because he was'nt a sufferer, and there for did'nt apply to him. On the "headache" we tend to refer too ourselves as ClusterHeads, headache is only a medical term. Hoppy.
Back to top	« Last Edit: Oct 23^rd, 2013 at 4:28pm by Hoppy » IP Logged

Jair Crawford

CH.com Junior

Offline

I Love CH.com!

Posts: 43
Gender: male

Re: But seriously, why do we call them headaches?
Reply #7 - Oct 24^th, 2013 at 12:40pm

True. I guess it's just since headache is such a broad term, and since so many people have had 'regular headaches', they have a hard time really understanding CH.

As I said earlier, when I first heard someone mention CH, I had NO idea how serious the condition was, because I thought it was a headache condition like Migraines (not to demean those who have Migraines... they're bad.).

But CH... CH is a totally different beast, and I know you all know what I mean by that, more than I could ever know.

It's just frustrating to me to see people not take your condition seriously because of it's name. Even doctors.

Back to top

I don't have CH. I don't know anyone in person who has CH. But I want to help. Let me know how I can spread awareness.

IP Logged

maz CH.com Hall of Famer Offline I Love CH.com! Posts: 1071 Hampshire, England Gender:	Re: But seriously, why do we call them headaches? Reply #8 - Oct 24^th, 2013 at 4:23pm Shakespeare said..........A rose by any other name, would smell as sweet. What ever we call it ( and I have called it names I won't repeat here ), it would still hurt like hell.
Back to top	IP Logged

Click Here to visit the CH.com Facebook page!

Jair Crawford

CH.com Junior

Offline

I Love CH.com!

Posts: 43
Gender: male

Re: But seriously, why do we call them headaches?
Reply #9 - Oct 24^th, 2013 at 5:35pm

Very true.

I'm more concerned about the awareness aspect of it, though. If nothing else, because of my own reaction to it in the past. I literally thought it was a different form of migraine that was rare. I didn't /really/ see what it was until I typed in "most painful condition", just out of curiosity. And it led me to CH.

Back to top

I don't have CH. I don't know anyone in person who has CH. But I want to help. Let me know how I can spread awareness.

IP Logged

AussieBrian

CH.com Hall of Famer

Offline

CH - It's all in your
head!

Posts: 3851
Cairns, Qld, Australia
Gender: male

Re: But seriously, why do we call them headaches?
Reply #10 - Oct 24^th, 2013 at 6:34pm

maz wrote on Oct 24^th, 2013 at 4:23pm:

Shakespeare said..........A rose by any other name, would smell as sweet.

But soft, what light through yonder window breaks? It is the east, and O2 is the sun.

Arise, fair O2, and kill the envious beast who is already sick and pale with grief that thou, her maid, art far more fair than she.

Back to top

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

IP Logged

idorko CH.com Veteran Offline I Love CH.com! Posts: 208 Central Maine Gender:	Re: But seriously, why do we call them headaches? Reply #11 - Oct 25^th, 2013 at 3:57am The lady doth use imitrex too much, me thinks, for her rebound headaches occur the morning next
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!