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        New Message Board Archives >> 2004 Posts >> Helpful hint when telling others about CH
        
(Message started by: Dave_Emond on Mar 15^th, 2004, 1:02am)

Title: Helpful hint when telling others about CH
Post by Dave_Emond on Mar 15^th, 2004, 1:02am

Here is a basic hint I used before and still do when relating information about CH to employers or anyone else for that matter:
Do not start your conversation by saying you have Cluster Headaches. (We all know as soon as the word Headaches comes up, preconceived notions already are planted.) I start by telling the person I suffer from a rare disorder. This disorder does not affect my brain, it is normal. I then describe in very detailed info on just what this disorder does to me in the form of pain. I then tell them about the lack of cause or cure along with the small % of people who suffer from it and lack of treatment. By then, they are curious for a name of this incredible disorder we suffer from. (The word “headache” has not been used once yet.) I then tell them that the disorder is called Cluster Headaches (and without missing a beat) tell them now you understand that this is in no way like any type of headache, such as Migraine, Tension or Sinus, the medical field just doesn’t know where to put this disorder in a category. Only the uneducated would think these to be headaches of any kind. (This automatically puts the person you are talking to not wanting to appear “uneducated” and ready to defend your hatred of the word “headache”). I’ve done all the talking up to this point and have raised concerns or questions they may have and discuss the rest from there. It doesn’t hurt to throw in they were once called “suicide headaches” and explain why. The main way to get and keep their attention is not mention the word “headache” at all until you completely describe your pain, affects on life, the rarity of it and other info mentioned. Then I have plenty of copies of articles on CH if it is relevant to whom I’m speaking to.
This works very well when first talking to someone about CH, I’ve learned this over years of trying to explain CH to others.
Hope this helps anyone,
Dave

Title: Re: Helpful hint when telling others about CH
Post by BobG on Mar 15^th, 2004, 3:21am

Thanks Dave. I usually don't use the word headache. Just "I get Clusters." Or "I'm a Cluster sufferer." That leaves it up to the other person to ask "Clusters?". Then I can explain what they are.

How the hell ya been? Haven't talked in a long time.

Title: Re: Helpful hint when telling others about CH
Post by Dave_Emond on Mar 15^th, 2004, 3:44am

Hey Bob my ol' friend!
I've got a half written letter to you in my "mail waiting to be sent" file ... uh ... it's been there a while, soooo sorry!
I have quite a few of those :-[
Maybe hesitating until I have better news? ... lame excuse. I can walk now! Maybe painful, but beats the wheelchair. Been so caught up in OUCH lately, I don't get over here as much as I should. Annette follows these boards regulary and keeps me updated as to what is going on, but it feels good to come back over here, hope to do so more often. I get side tracked on a project and takes most my energy to stay focused on things.
I'll try to get that letter finished and off to you soon, miss talking with ya!
Dave

Title: Re: Helpful hint when telling others about CH
Post by BobG on Mar 15^th, 2004, 3:57am

on 03/15/04 at 03:44:55, Dave_Emond wrote:

I've got a half written letter to you in my "mail waiting to be sent" file ... uh ... it's been there a while, soooo sorry!
Dave

LMAO. I think we all have a stack of "Mail waiting to be sent".
Good to hear you're out of the wheelchair. Hope the pain goes soon. I see Annette's name here almost every day. Glad to see her posting. I think when we first met in Vegas she was a new bride and made you leave Canada. Right?

Title: Re: Helpful hint when telling others about CH
Post by Annette_Emond on Mar 15^th, 2004, 11:50am

:) Other way around, Bob. I was the one who left Canada. Most days he was worth it ;;D
Annette

Title: Re: Helpful hint when telling others about CH
Post by bobkip on Mar 15^th, 2004, 8:52pm

Great post Dave. That is the way.
Kip

Title: Re: Helpful hint when telling others about CH
Post by BlueMeanie on Mar 15^th, 2004, 8:54pm

I agree Dave. Never use the word HEADACHE if you want someone to really listen and understand what we go through.

Title: Re: Helpful hint when telling others about CH
Post by t_h_b on Mar 15^th, 2004, 9:15pm

How about Trigeminovascular Cluster Attacks (TGVCA)???

That sounds awful enough and it's more accurate.

Title: Re: Helpful hint when telling others about CH
Post by Mr.Happy on Mar 15^th, 2004, 9:15pm

Dave,

When you ain't busy preparing to donate your brain to Goadsby, you make half a turd's worth of sense. Again.

I hate it when you do that,
RJ

Title: Re: Helpful hint when telling others about CH
Post by Kevin_M on Mar 15^th, 2004, 9:26pm

on 03/15/04 at 21:15:53, t_h_b wrote:

How about Trigeminovascular Cluster Attacks (TGVCA)???.

Good stab at it. Seems to take it out of the realm of head "ache". Put some thought into that one. Not too many people are going to say, "oh yeah, I get those too". Or, "I have some aspirin!"
Put the cluster first in front of the trig word would work too. Sounds like a winner either way Thomas. Appreciate the thought put in it.

Yeah, one of those.

Kevin M

Title: Re: Helpful hint when telling others about CH
Post by t_h_b on Mar 15^th, 2004, 9:40pm

Maybe Periodic Trigeminovascular Attacks? (P32V Attacks)

Periodic is more accurate than cluster. It refers to both the "seasonality" of episodic clusters as well as the regularity during clusters for episodics and every day for chronics.

Title: Re: Helpful hint when telling others about CH
Post by Melissa on Mar 15^th, 2004, 9:46pm

The attempts at the different names for our HA's are pretty good. Unfortunately I cannot pronounce them without spitting all over my keyboard... :P

Anyone want a bath?

Title: Re: Helpful hint when telling others about CH
Post by Rock_Lobster on Mar 15^th, 2004, 9:46pm

Pretty good tips Dave. When I mention 'headache', the conversation always turns to 'kinda a like a migraine, huh'. >:(

I tend to respond, 'yeah, in the sense that being decapitated is kinda like a stubbing your toe'.

I do use the "google 'suicide cluster headache" thing on people once in a while. Tends to get the message across when explaining to the dense why I refuse to go out of town during a given month.

All in all I tend to never get any shit from people about it. I am a radical overworker normally, so when an epsiode hits I just let them know that the next few months are gonna really suck. They just give me my space, so all is great. Count me lucky to have understanding peers who have seen me have a kip8+. Plus I tend to work from home now, so that pretty much whacks the issue.

Rock

Title: Re: Helpful hint when telling others about CH
Post by Kevin_M on Mar 15^th, 2004, 10:14pm

on 03/15/04 at 21:40:51, t_h_b wrote:

Being episodic, (this one is going on five months though) I am not opposed to periodic for episodics, but perhaps chronic trig attacks suit the chronics being that periodic may describe just what one day is like.
Being that they are spaced apart, the word cluster seems inaccurate. Cluster meant that they come for a period of time and then leave, hence are clustered during a particular period of time. For an episodic that is true over a period of time of say a year or two, they cluster for within several weeks or month of a year. But on a daily basis when active, they happen spread throughout a 24 hour period, not clustered within a certain period of that 24 hour period. To a chronic, they do not cluster at any part of the day, they happen throughout the day with intervals inbetween, as it would for an active episodic.
Actually the word cluster does not apply to a chronic or to an active episodic. Recurrent seems an acceptable word for episodic and chronic. To an episodic active times are recurrent throughout a long period of time, to a chronic they are recurrent throughout the day.
Good thinking again Tom. You are giving this serious thought I see. You seem to be hitting an appropriate term. Better fitting I think.

Kevin M

Title: Re: Helpful hint when telling others about CH
Post by t_h_b on Mar 15^th, 2004, 10:22pm

Well, I suppose the easiest thing to do is just say "cephalalgia" instead of "headache". Mystifies laypeople and impresses physicians.

Title: Re: Helpful hint when telling others about CH
Post by Kevin_M on Mar 15^th, 2004, 10:48pm

Well, as long as they don't think we're from the family of cephalopods. ;;D

Kevin M

Title: Re: Helpful hint when telling others about CH
Post by toader on Mar 15^th, 2004, 11:06pm

ya, dude some of us poor bastages is on dopeymax and can barely remember how to tie our dang shoes

i gave up trying to tell people when a friend suggested I sleep with a magnet under my pillow. WTF?!?!!

..... must
... control
... tiny
.... fists
.... of
..... DEATH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Title: Re: Helpful hint when telling others about CH
Post by Samantha_Smith on Mar 15^th, 2004, 11:50pm

Wow! You actually have people who are interested in your pain and are willing to listen to all the gory details for more than 20 seconds???? Congrats! You got me beat.

I just assume they don't care (which 9.75 times out of 10 they don't) therefore I don't tell them. Why waste my time and my breath? If they quiz me intensely and honestly about my rare chronic neurological primarily male over 40 years old incurable disorder that is caused my an enlarged hypothalmus, an irritated trigeminal nerve, and engorged blood vessels then I might see fit to divulge a few details but other than that ....why bother?????? I'll save my time,energy and effort to make the doctors, pharmacists, pharmaceutical compnies, and our governing authorities understand what I go thru.

(Yes, I know that I am missing a plethora of valuable opportunities to educate the ignorant masses about CH.)

Even if you tell them about all the pain and suffering and its supposed causes do you really think they'll have a clue???

My personal experience has been is that when you give them "the low real low down" on what CH is all about they walk away thinking "What's that guy whining about so much!!!! I mean does he have any idea how bad my !@#$$% stubbed toe hurts?"

Sorry.....I guess that's just been my jaded experience in confiding with other people who either feigned interest or sympathy. I'm tired of fooling myself into thinking that non-CH sufferers really care.

And that's my humble opinion. Samantha

Title: Re: Helpful hint when telling others about CH
Post by Dave_Emond on Mar 16^th, 2004, 1:49am

One thing I think most CH sufferers would agree with is that we are not looking for pity, we just want respect and dignity.
At the Conventions I've been to, most every fellow Clusterhead who gets hit will even try to get away from other Clusterheads! (If they have a chance too). Help with getting one away and assisting them in getting their meds or such is all one can do, then we want to be left alone. Most of us do not want anyone fawning over us saying how sorry they are for us.
Self-pity is one of the Beast's best weapons. The idea of this note about talking to others is mainly designed towards employers, supervisors, customers or even disability agents.
All we want is understanding and respect so we can keep our dignity. These are our weapons against the Beast.
There was a time I'd get angry at the stupid comments made about "headaches" but not anymore. I figure if I don't respect someone's opinion, then why should it bother me?
No one who has not suffered CH attacks will ever know the pain, impossible. Just as no one knows what Supporters go through, even the Clusterhead. (Both can understand the affects on thier lives, but not fully the mental struggles each goes through.)
I often wonder what my response would be to a Clusterhead had I never heard of or been through CH? Most likely I too would have said something stupid or tried to give advice?
I also have posted many times how much I hate the word "headache." But am beginning to think without a well known "category" to be placed in, there would be even less research into CH than there already is. So if CH were to be renamed, got to think of a category as well, that is researched enough to at least get our education and awareness out there. Researchers, doctors, or undiganosed CH sufferers aren't going to find us under the name "Sassafrassumsuckarum" :P
Just some thoughts,
Dave

Title: Re: Helpful hint when telling others about CH
Post by spliff_richard on Mar 16^th, 2004, 3:54am

Hi there
I've had some bed experiences in trying to tell people bout these headaches. Especially doctors!!
They usually advice me to come back, WHEN I'm having one, which is nice.
I'd love to drive with my left eye swollen and in so bad pain that I can't even describe it.
This bastard has even been diagnosted as Horton's syndrome twice, but they still don't get it.
If you got tattoos, they wont give you medication, coz they're afraid that you might sell it to kids or something.

My ex didn't understand my condition at all. She told me she couldn't stand me in pain. (Rollin' in bed etc.) She even once told (shouting at) me to stop it!!!! Great.
I also suffer from panic attacks now and then. They used to be a real pain in my butt, but I've learned to live with them.
With both disorders (or whatever you guys call them) It's still important to talk about them. Let your people know.
Here in Finland, it seems that especially older folks brag about their diseases and disfunctions, but if you're young and vital otherwise, you can't be having nothing that serious.
Tell your friends, that you got this condition, where you get crazy headaches. If they don't understand, get new friends. If your boss doesn't understand, get a new job.
If you're wife/husband doesn't understand your condition, find a human being to marry.

Title: Re: Helpful hint when telling others about CH
Post by BobG on Mar 16^th, 2004, 4:08am

on 03/15/04 at 23:50:13, Samantha_Smith wrote:

my rare chronic neurological primarily pock-marked faced, ruddy complextion, square jawed, heavy drinker that smokes to much, male over 40 years old incurable disorder that is caused my an enlarged hypothalmus, an irritated trigeminal nerve, and engorged blood vessels