Looking for a new name for clusters need yr help!

[lrosenb]

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.

[CH-HELL]

Beast, Demon, Suicide Headache..

[catlind]

"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

[coach bill]

Tantrum Headaches

[Jara]

On 11/11/2009 at 10:56 PM, CH-HELL said:

Beast, Demon, Suicide Headache..

Suicide Headache is the one! I'm always begging to be put out of my misery when I hit #10 of a CH. Feels like the brink of death, but then you live through it! Unbelievable what the human body can endure!

[Sue mcdonald]

3 hours ago, Jara said:

Suicide Headache is the one! I'm always begging to be put out of my misery....

Suicide ha is good... until you are on phone with  e.r. nurse trying to explain why their silly e.r. trick didn't help you and as a consequence you are once again in suicidal pain. She demands to know - are you suicidal or are you not suicidal?

They don't understand.

Or on phone with neurologist's receptionist and that simple word suicide slips out, loose into the conversation? And she freaks out and in return you get an EMERGENCY phone call from neuro's nurse. And she explains thats a trigger word... like you are threatening to shoot up innocent little children at school or something - crazy - like that.

Or you are on the phone with a med clinic billing clerk, at lunch time who is filling in, and you're trying to quickly explain the severe pain? She relays the suicide part to your doctor and he (in turn on the game of telephone) calls your sheriff to drive 35 miles out and make an emergency suicide check on you. And so you call admin to complain lack of confidentiality (what is that....?...) and you hear your doctor in the background, laughing, and jeering at you - weeee were .just. ~~wor~ried~~ about you. Right, not. Cruel mean, or uneducated, or uncaring, or med people who believe, if your pain is so severe you talk of suicide = psychological ***CRAZY**.

Or, you are in the e.r., not understanding what you have? Or why you are so bad off? And they lock you up on a 72 hour mhh. Thats real common out here.

When you get out many stare at the crazy lady (not even crazy cat lady) who keeps getting locked up for being crazy. They stare and the gossip starts and never ends- all about how you are crazy... 

Until the gossip is so severe? And the community disgust with having a crazy person in among them? They, because they are so filled with hatred, and tend to be a little mentally unhinged themselves?  Casually discuss how to murder the crazy lady- and they get arrested for that. Then they pressure the sheriff to force you to move far away? And son of a b if he doesn't arrest you and try to force you into an adjudicatted program for crazy drug using criminals. See - even if the drugs are for the chas, prescribed by an m.d.?? Even if cop had to dream up an arrest and sign it himself? And even if you have repeatedly passed psych evals - over and over? He bows to society and moves to seize crazy lady's home, force you to move - all to make the, ahem, "crazy" people who sat around discussing murdering the crazy lady... to keep them! Happy! And to keep their bloc of votes coming his way

mmm. People, generally speaking, are not safe to know the extent of our pain and the details like that. They would have to be extra special people, well paid, well trained, to have access to that information. Sad to say? Like 90% of the medical professionals in this 200 mile circle? Think they are so special they deserve a lotta money? But they fall flat on their faces over the gossip  trying to destroy community members with ugly talk. 

or you call up your nurse, out of your mind, in pain? And someone in charge who is having an affair w a yng lady who works under him (yes - both married with kids) and because his gf on the side? Her parents once sued you and lost - but spread the ugly runor that you sued your landlords for money to live on and everyone should shun you in your new community. And so it goes.. and he arranges for the sheriff to arrest you. Jailed. His wife = typical sadistic jailer.. and judge is buds w the landlords... because they were all part of the judges drug and sex club here? Sigh... locked up. No visitors allowed, no phone calls in, no phone calls out, no lawyer access... until they at their convenience, after Christmas & new years are over, they can drag you over to the court and serve r.o. on you so you can never see your doctor of 25 years or ever even so much as say his name, or the name of the ne colo medical clinic ever - your medical history is now disappeared. You are under a r.o. to not ask for it in any way except thru a very EXPENSIVE lawyer.

Once they put them craxy goggles on? Crazy you is all they can ever see. They never take their crazy goggles off. And it is ccontageous.

Its called the stigma of a mentalhealth diagnosis- it's just that uneducated mean people wear the crazy goggles because they are the ones with severe psychological issues. And they will fixate upon you - once you say the 'S' word and that crazy label gets slapped on you by them. Because, see.. they've had headaches, bad migraines, even !!  And they were never suicidal.... so theres something off, something wrong, something sick - about ... who?. well, it aint abt *them!! They dessrve a lotta money, social standing, marriage, kids, gh n bf on the side, at work.. and drugs and booze, too!! Friends, restaurants, grocery stores, community respect, happiness, even.  So they put on the crazy goggles and point the fnger at.... the chas sufferer.

they certainly can be suicidal ha pain? But try, when you're in one? To explain to society?well - look at how many end up divorced over this isdue? Spouces, kids, friends, who pathologise the person suffering with suicidal pain? Because they don't  get it, they think you are lying, and/or crazy. And it comes back around and they frequently use it to hurt you. Their minds just cant get it. They can't understand such pain.

[Sue mcdonald]

Many of us, tend to, when in such pain? Become agitated and dont explain well verbally. Patients with migraine, or even ha? Want quiet. As far as fitting into diagnostic criteria? We dont present according to preconceived idea of migraine - and thats their idea of the worst. Heh.

I've been told i often answer yes/no questions with a story. When in suicidal pain? Is it such a far leap for joe blow guy to think - that one? Says got a ha? Migraine? -  Is  c.r.a.z.y. 

Some of us are kinetic personality types anyways, add in these little humdingers of suicidal ha pain? Its not going to end well. And then we carry 75% of the blame for that as well.

Also? Believe strongly its a syndrome. A subset of symptoms, isn't it? We could discuss it being autoimmune for that alone. Ive heard we need to be kinder to our Doctors. They receive one hour in medical school training,  ONE HOUR  about headaches of all kinds. And i do. Try to be kind, i give MY doctors the benefit of my medical knowledge, which is a true gift.

yes, new name for chas. Agree! But... what?