I was a bit peeved to read this from Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or :

"In most cases headache pain, even severe headache pain, isn't the result of an underlying disease. In fact, the vast majority of headaches are primary headaches — headaches not caused by a specific medical condition. These include migraines, tension headaches and cluster headaches." (Emphasis added.)

I am no doctor, but I take strong exception to the asertion that CH (and migraine) are "not caused by a specific medical condition." Yes, the headaches are primary (i.e., they are not secondary to some other medical problem, such as a brain tumor), but I always thought CH was a specific medical condition.

Lumping CH, migraine and tension headache together doesn't seem horribly instructive. Thoughts?

I came across that page while looking for a good primer on CH for a friend of mine who just doesn't seem to get it. I really wish there was another name for the disorder that did not involve the word "headache," which is something everyone has experienced and is, like, no big deal, you know? It's like calling Crohn's disease an "upset tummy." Thoughts?

So this friend, who truly means well, says to me: "These seem to happen mostly when you're particularly stressed, right?"

Uh, no. These happen to me no matter what I'm doing -- reading, watching a movie, enjoying dinner, even sleeping -- every day, twice a day,  for a period of about 4-5 weeks, once or twice a year, every year, for the past 15 years. I have been treated at the ER twice. My professional and personal relationships have been affected.

"So, are you still not drinking any alcohol?"

Sigh.

I hate to go into gory details, because (A) then people might think I'm exaggerating to try to win sympathy for what's really, after all, "just a headache" and (B) based on what I have read here and elsewhere, my own suffering is trivial and easily manageable compared to what some others must endure. (Honestly, for me it's only really, really bad for one or two weeks a year. And then, it's only really, really bad for about an hour or two a day. I can live.)

And skepticism is normal for somebody who has never encountered CH. To the outsider, it must sound like any number of vague "aches and pains" disorders that every hypochondriac with Internet access can diagnose themselves with. ("I think I have chronic fatigue, restless leg, cluster headache and fibromyalgia! Give me a placebo!")

So I restrain myself from trying too hard to educate people -- even my friends. Because I'm not looking for extra attention or pity, just a little understanding and compassion. I don't want to feel like I have to "prove" anything. I don't want to have to go over to this friend's house, drink half a glass of bourbon and then let him drive me to the emergency room for a shot of DHE and some oxygen, just so I am sure he "gets it."

I realize that the only antidote for generalized ignorance is more public awareness about CH, which is why the misleading information on the Mayo site really chaps my hide. (Did I mention I work in public relations for a medical center?)

I have no idea anymore where this rant is going, so I am going to hang it up for the night. Thanks for listening out there ... I'll post more when I'm more angry than tired again. Peace.

I know it's very frustrating trying to explain what type of pain we all go through.  But, if you don't experience it for yourself how could you possibly relate to it.

I have a friend that claims he has never had a headache in his life.  There is no way possible for him to comprehend what we go through.

Even whackin somebody with a hammer would not equal what we all go through.

That's we have each other.

                            PFD's On Ya
                                JPC

     One doctor prescribed ercaf for me.  The instructions from the pharmacy said that ercaf is for cluster and migrane headaches and here is how to take it........   After 10 CH's in 4 days, I had so much ercaf in me I couldn't stop shaking.  I told the pharamasist about his improper directions, but he looked at me like I was an idiot.  Next time I got the same instructions, so I told him treating CH,s like migranes is like treating a broken arm like a burned arm because they both are painful on the same part of the body.....same look.

Well, no question CH is often misunderstood....  I tell people that I have a "brain damage that causes extreme pain", rather than just a headache that a couple of Tylenol can help.

Comparing the pain to a childbirth or amputation never works.....not too many can relate to those.  And some lucky people have never experienced a slightest headache.

My standard is, "Have you had a migraine"?  If the answer is a yes, I always tell them to imagine the intensity to be 10x as bad.  My husband understood it immediately as he's had ONE migraine in the past.  If the answer is a no, my next analogy is the ice cream headache.  I'm not an ice cream lover, but I know it does hurt.  I tell them to multiply the pain by 50, non-stop for an hour.  More people (especially men) seem to get it, but only if they care to know.

There are probably as bad or even worse pains than CH.......I don't know.  The only other extreme pain I've experienced was a tooth cavity that ate up the bone.  I was in college with no money for a dentist.  It WAS as bad as CH.  So I believe having a tooth drilled without anesthetic down to the bone is about the same pain as CH.  I've had an open surgery, but it was NOTHING compared to CH.

I've always wished everybody to experience a full blown CH just ONCE to understand this. But I've learned over the years that the "poor me" syndrome doesn't help a bit.  Although it is extremely difficult, we need to keep our chins up and not dwell on it.  Surely I'm quite depressed and pissed off, but if I get too emotional about it, the next attack comes on earlier and stronger.