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ClusterBusters
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lrosenb

Looking for a new name for clusters need yr help!

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Hi everyone. First, what a relief to find this forum. Even if it hurts to stay on computer (for me somehow it does.) I wrote a blog (mostly, when not writhing in agony, I'm a writer) about cluster headaches, calling for new names. Neither "cluster" nor "headache" seems to come close to what we feel. So please go read the blog and add your suggestions-- maybe someone out there is listening. I'm tired of feeling embarrassed when people ask why I've lost 40 pounds & look like hell and I answer with "cluster headaches." I'm a word person, I want a name that suggests what this really is, and how it feels. Go to http://lizrosenberg.wordpress.com/wp-admin/post.php?action=edit&post=31   the blog is called A Worry a Day at wordpress and is easy to find. Look forward to your voices, your suggestions, and no doubt, your sense of humor. When it hurts this much, you've got to laugh or die.

Thanks, guys, for being there. Maybe some doctors will actually listen to us and we can find a better word to describe this condition. I think it should sound like Crucio! or something to make people shiver.

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"I suffer from a rare neurological condition known as trigeminal autonomic cephalgia, commonly called clusters because the painful attacks occur in groups or 'clusters'"

No need to use the word headache at all.  TAC is what they are and that's the official name by the IHSC.

Cat

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