A man is walking in the street. He has an exhausted look on his face, as if he has not slept in weeks.  You see a shadow of someone following him. The man paces hastily as if he knows he is being followed. But as he turns around quickly to look behind him, there is no-one there. He continues to walk and enters the subway, filmed in such a way it is insinuated he is being followed by someone or something ready to attack him. But every time he turns, you don’t really get to see who or what it is. Or did I see a hunch of a frightening figure holding a huge red-hot icepick?

Arrived at work, you see the guy in a meeting, unable to answer a question his manager just asked him, because he is being distracted by the threatening figure behind him. Yet no-one else in the meeting room seems to notice the dark figure with the glowing icepick motionless standing there…

Late in the evening, at home, the man is reluctant to go to bed. Like a kid, afraid there is someone under the bed, behind the curtains or in the closet – just waiting for him to fall to sleep. He turns and tosses in his bed, and every now and then he quickly switches on the light and sits upright because he thought he heard something.
And then when he switches on the light and sits up, you see the gruesome man was standing just in front of him, just as he jolts the ice pick into his eye all the way through his head, and starts twisting it around. An agonizing scream is heard as the screen goes totally black, and then the text appears:

“Think this happens only in scary movies? For people suffering from Cluster Headache, this is reality – every day!”

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Scanning through the vast amounts of testimonials here as well as on other CH websites, besides pure medical problem and possible treatments, we all seem to have the same issue of not being fully understood by people who have never experienced how excruciating this pain can be, and how devastating the effect on one’s life. And sadly, that includes doctors and medical staff.

When you try to explain them, you just see people think something like “Yeah, right – I ‘m sure he’s exaggerating, as nothing can be that painful without being commonly known. Probably just a form of migraine like many people have, but they just cope with it better than he does.. ”.

And we all know the effects of not being understood on our jobs, relations with family and friends, and to the difficulty of getting to our medications in the quantity we need them, and in time. (“Sorry, there was a problem with the delivery… surely you can wait another day before your oxygen tank is in? NO, BELIEVE ME, I CAN’T!!!”)

True there are the different websites you can point people too (Just don’t point them to Wikipedia, I recently got the remark from my manager insinuating I had probably altered  that article myself just to back up my statements – DUH!).
And there is the letter from OUCH, which is a fair attempt in trying to explain - BUT NOT GOOD ENOUGH!

Honestly, apart from ourselves, our spouses, closest “true” friends and the odd co-worker or manager we practically force  to read this, is there anyone else who takes the time to go through that text? And even if they would, could that really make them understand?

We live in a lightning-speed multi-media society, where information needs to be presented in a fast, easy accessible, easy digestible and above all “entertaining” manner before it gets through. You need wrap what you want to convey in a way people want  to take a look at it – if not they just don’t bother to take the time.
Each and every one of us knows CH is just a horror to live with. So why not make a short horror movie clip like the one I have tried to describe above, and post it on youtube? It would have to be really good for it to be “consumed” by the masses, and rather “dramatically” for the message to be grasped. But maybe if we could engage the right people, we could get it done?

Paul.