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        Cluster Headache Help and Support >> Cluster Headache Specific >> Perceptions from inside the Clusterbox
        
(Message started by: georgej on Jul 17^th, 2006, 1:39am)

Title: Perceptions from inside the Clusterbox
Post by georgej on Jul 17^th, 2006, 1:39am

Okay.

These are a couple of questions, or better--an invitation for the long-timers to answer. I want you to think back to the grim old days before this site was around and before we began to connect with one another. Back to the time when you were, as far as you were concerned, the only clusterhead in the world. Back in the time when we were alone.

Remember?

You tried to explain it to people who couldn't possibly understand--and you tried to explain it to yourself. How did that feel to you?

I think it's remarkable and interesting that in least a couple of respects, many of us came to perceive CH as an invader--something that attacked from outside, rather than from within. So a great many of us came independently to personify it, and even give it a name. The most common terms people used for it seem to have been "The Beast", "The Devil", or "The Demon". I was much the same, only I used to call it "The Black Dog". What did you call it?

One other perception that I had (back in those days) was that "something" built up unnoticed over time, and that the headaches somehow "purged" or "discharged" the "something", and brought things back to equilibrium--like the bursting of an overfilled dam, or a lightning strike. I guess it explained to me why the headaches came, and then went away. I'm episodic, so that fact may reflect this probably mistaken belief. If I had been chronic, I doubt that I'd have seen it like that. Anyone else ever feel that way?

Best regards,

George

P.S.--I've enjoyed the pics and stories from Milcon more than I can possibly say. This is the most amazing community of people I've ever had the honor to be a part of. I hope sincerely to be able to join you at next year's convention.

Title: Re: Perceptions from inside the Clusterbox
Post by sandie99 on Jul 17^th, 2006, 5:58am

George,

This site has been around as long as I've had ch. But it took me a while to find out what this beast (yup, that' s the name I like to use) is called in English... Ever since I've been here pretty much every week.

Now, you asked what it was like to explain ch to people who just don't understand. Well, I think that most of us have face that. I certainly have! It amazes me, how intelligent, smart & compassionate people in my life find it ever so difficult to understand that there's pain inside my head which has enormous impact in my life time to time.

Yes, I've heard that "it's just a migraine", "my head aches sometimes too", "you've imagined it all - you don't have that bad headache! it's impossible".

These days I mention ch if I have to. I love to educate people about it, though, and I love to talk about it. I do know that not everybody loves to learn about new things and I don't want to sound like that maiden aunt who only talks about her diseases, so I keep it short and sweet. I've asked my pals to visit this site, but I don't think that they have; that's their choice.

But honestly, I don't stress about it: if someone doesn't get ch, it's okay. I know how to deal with it myself. Still, everytime it's compared to migraine, I want to scream.

I do feel that I'm one lucky woman, because my boyfiend understands what ch is about and he has been my rock.

PFtime to all,
Sanna