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        New Message Board Archives >> 2003 Posts >> What do we call it (Part ???)?
        
(Message started by: Hirvimaki on Sep 29^th, 2003, 10:02am)

Title: What do we call it (Part ???)?
Post by Hirvimaki on Sep 29^th, 2003, 10:02am

I've seen several threads in the past discussing the drawbacks of calling what we have "headaches" as it colors most peoples minds as to what we are experiencing. Much discussion has been made as to what it should be called. (Though as far as I know, there has been no concensus reached.) In researching CH, I have come across the following names: Bing's erythroprosalgia, Bing-Horton syndrome, ciliary neuralgia, erythroprosopalgia, Harris neuralgia, histamine cephalalgia, Raeder's syndrome, sphenopalatine neuralgia, and vidian neuralgia. As an experiment, over the past two months, I have chosen to tell people (when it has come up - which is not often) that I have CH 50% of the time and that I have (insert fancy sounding name here) 50% of the time, to try to judge a difference in reaction. It is fascniating to me that when people hear "headache" they immediately file CH under the things-we-all-have-to-suffer-through-but-some-people-are-whimps category and are all but dismissive of the seriousness/import of this disease. Conversely, when they hear (insert important sounding name here) it is given the respect normally reserved for terminal illnesses.

I would love to hear others thoughts on this. Should we, as a community and a family, move away from CH as a name because of the frivolity and unimportance attached to headache?

Hirvimaki

PS: BTW, I am PF today, and last night had the best night sleep I have had in MONTHS!

Title: Re: What do we call it (Part ???)?
Post by BarbaraD on Sep 29^th, 2003, 11:13am

Glad you got some sleep last night.

We've tried in the past to come up with something real IMPORTANT sounding, but keep going back to CH. But we all know what you mean - Headache just drawls those "yawns" and "take an aspirin" stares from most people.

The one I hate most is, "OH I had one of those ONE time - they're really terrible aren't they?!!!" No jury in the world would convict me...... LOL!

Education is the only thing we can count on = educating the PUBLIC on CH and how bad they really are and that's just gonna take time. OUCH is working on it. Get INVOLVED and help the cause. That's the ONLY way we're gonna change anything. I know I know -- I keep repeating myself, but it's the ONLY way we're gonna change PUBLIC opinion and that's just how it is. Sorry 'bout that....

Hugs BD

Title: Re: What do we call it (Part ???)?
Post by grumpett on Sep 29^th, 2003, 11:14am

i Agree with youm 100%.

When I was first diagnosed the specialist thought I had 1 of 2 things, TriGeminaneuralgia (not sure of the spelling) or ch. When I repeated this to my friends and family, the emphasis was on th TGN and concern BUT....
when it was ruled out, and the verdict was in for CH,
All the concern and interest stopped because I think like you do, the sufferer can live with a headache so they think it is just that. What name to give it?
I don't know, but how do we rename something that a doctor has difficulty with even diagnosing let alone curing!
YES it should be renamed BUT>>> WE NEED SOME DR.S OUT THERE TO START RESEARCHING AND FINDING SOME ANSWERS AND CURES!
Because I am a woman, I still have drs. refusing to believe that this is what I have because ( I AM WOMAN, HEAR ME ROAR)
Where do we start?

Title: Re: What do we call it (Part ???)?
Post by Prense on Sep 29^th, 2003, 5:50pm

This is an interesting topic...CH got the name simply because the HAs would come in "clusters". While that is true for episodic sufferers, it is not accurate at all for us chronics. ::)

Title: Re: What do we call it (Part ???)?
Post by badfly on Sep 30^th, 2003, 6:11am

F#CKING AGONY

Thats what I call it.

Title: Re: What do we call it (Part ???)?
Post by Turts on Sep 30^th, 2003, 6:20am

I agree withBadfly;

except I not sure if more emphasise the F#CKING orthe AGONY.

Title: Re: What do we call it (Part ???)?
Post by OneEyeBlind on Sep 30^th, 2003, 7:16am

Love the f#cking agony. Priceless !

Title: Re: What do we call it (Part ???)?
Post by ave on Sep 30^th, 2003, 4:38pm

With people I don't know well I say in a very off hand way, `Oh, I just have this neurological condition.'

Then I detail the different sorts of pain in the different locations on and in my head and add in a comforting tone of voice, `but don't get upset, it passes in half an hour. And then 2 hours later it starts up again. But don't worry. I always live through it.'

People get REALLY upset when you start to comfort them in this way, and tell them there's nothing to worry about.

Title: Re: What do we call it (Part ???)?
Post by jonny on Sep 30^th, 2003, 6:16pm

Mom's right,

You cant just up and change what the Doc's call it and make up a new name, the initials CH are finally getting some play and if we try and change it now we go a thousand steps backwards.

......................................jonny

Title: Re: What do we call it (Part ???)?
Post by BarbaraD on Sep 30^th, 2003, 8:42pm

I'm sorry Ave but I'm sitting here laughing at your explanation - I can just see you sitting there patiently explaining - "Now don't worry - it's just a neurological disorder - it will only last a few minutes and then it will go away BUt then it will come back (and I'll be crazy again) but don't worry it will go away in a few minutes and I'll be sane again..... etc etc... LMAO Hell, that would scare ME and I know what you're talking about.

Maybe I have a STRANGE sense of humor but I'm sitting here with tears rolling down my face and it's not from CH - it's from just picturing someone listening to that - IT"S PRICELESS -- I've got to try that one. Thanks that's the most I've laughed in a week. You're a sweetheart.

Hugs BD

Title: Re: What do we call it (Part ???)?
Post by Carl_D on Oct 1^st, 2003, 8:27pm

I call them Cluster Attacks...

but elect Cluster Head Trauma

Still keeps the CH, just adds a T.

Peece,
Carl D

Title: Re: What do we call it (Part ???)?
Post by Hirvimaki on Oct 2^nd, 2003, 8:40am

Thank you all for your input. I know this topic has probably been talked-to-death, but I'm relatively new here. I was not implying that we should just make up some new name; all the names I quoted are noted medical terms for CH. I was more curious what other's experiences had been regarding people's reaction to it being called a headache. Personally, I'd just tell people I have sphenopalatine neuralgia if I could figure out how to say it! :)

Thanks again all. I'm going to go back and hit the O2. The evil clown seems to have sharpened his teeth...

Hirvimaki

Title: Re: What do we call it (Part ???)?
Post by brain_cramps on Oct 2^nd, 2003, 10:15am

on 09/30/03 at 18:16:48, jonny wrote:

Jonny

Your mom is 100% on the mark. She sounds like a great lady (WTF happened to you? LOL ;))

grant 8)

Title: Re: What do we call it (Part ???)?
Post by don on Oct 2^nd, 2003, 11:39am

A Downright Dirty Shame