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fdharden
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This board.
Nov 21st, 2008 at 9:13pm  
Years ago, this was a brilliant, unique site dedicated to communication between CLUSTER HEADACHE sufferers, to share medical information and trial and error experience. There were fewer than a hundred of us who founded OUCH, contributed, and started talking to each other about our experiences. DJ gathered all available medical information for us to learn about our strange and rare disorder and gathered hard-earned knowledge about how to deal with it.

We beat the shit out of each other and had no mercy on pretenders or snake oil salesmen. A real bond happened, somehow, and a few lasted long enough to help others survive. DJ's site was the only oasis in a desert of ignorance about clusters. I had found out about O2 and Imitrex through my own reserarch, but I learned how to use both to best effect from this site. I am eternally grateful.

Curse and flame me all you want for my views, but for the most part, this board has become a gathering place for anything goes; for those who want someone else to solve all their problems. My basic view is that we are each responsible for taking care of ourselves. If you believe that your problems should be shared and payed for by everyone else, you will live in dissapointment. You can take no pride in putting your monkey on another person's back.

I know I am fortunate among sufferers. Chronic for six years, since 1979, episodic to date. Two years in remission, but fully prepared for the return. I'm now 72, but I don't count on having a "get out of jail free card."

I wish you all well, even if you do not have cluster headaches or live with someone who does. Still, I think you pretenders should find or start your own gossip site. Ready, set, go!

Adios,

Paco
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« Last Edit: Nov 21st, 2008 at 9:17pm by fdharden »  
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Re: This board.
Reply #1 - Nov 21st, 2008 at 9:18pm  
SWEET!  Smiley
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Re: This board.
Reply #2 - Nov 21st, 2008 at 9:20pm  
I remember those days Frank.  I go back and read the archives once in a while and miss those days.  There WAS a lot of give and take and a lot of exchange of thoughts and ideas.  True discussion.  The family was much smaller back then and could be handled on one or a few boards.

Peace Paco. Cry

-P.
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Re: This board.
Reply #3 - Nov 21st, 2008 at 9:22pm  
Think I might agree Paco but what defines a pretender? Someone who hasn't "done their time" on here?

If so, how long do you have to have been around not to be a pretender?

modified to add that I said I think I agree because it is a very different place to the one I first found too (long before the date showing on my profile) but I don't count "length of service" as any kind of qualifier for anything.
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« Last Edit: Nov 21st, 2008 at 9:29pm by pubgirl »  
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Re: This board.
Reply #4 - Nov 21st, 2008 at 9:27pm  
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood. 

-P.
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Re: This board.
Reply #5 - Nov 21st, 2008 at 9:28pm  
pubgirl wrote on Nov 21st, 2008 at 9:22pm:
Think I might agree Paco but what defines a pretender? Someone who hasn't "done their time" on here? If so, how long do you have to have been around not to be a pretender?


I didn't read Paco's comment that way at all, Wendy.

Marc
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Re: This board.
Reply #6 - Nov 21st, 2008 at 9:28pm  
Paul98 wrote on Nov 21st, 2008 at 9:27pm:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  

-P.


Man O man, aint that the fucking truth, Paul!!
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Re: This board.
Reply #7 - Nov 21st, 2008 at 9:29pm  
When I first came here, I went back and read hundreds upon hundreds of archived threads. 

I recall some guy named Flash who really got the snot kicked out of him for some off the wall claims regarding the use of ethnogens.

But you know what?  He was so convinced of his theory that he got into the science data to back up his "crazy" idea.

He wasn't detered.  And many many people have seen the amazing results of this method. 

I think THIS should be the litmus test, does the poster have the where-with-all to find some sort of data to support the claim. 

JMHO.
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Re: This board.
Reply #8 - Nov 21st, 2008 at 9:33pm  
Paul98 wrote on Nov 21st, 2008 at 9:27pm:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  

-P.


There have always been those as far back as I can remember, not as long as some of you of course. That is what you get on a forum about a health condition, it goes with the territory doesn't it?

Needy people wanting something the forum can't give. I remember one REALLY notable one that went on for YEARS.
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Re: This board.
Reply #9 - Nov 21st, 2008 at 9:38pm  
Sorry if I misunderstood the "pretenders" word. It means "young pretender" as in a usurper as well as someone who pretends things.
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Re: This board.
Reply #10 - Nov 21st, 2008 at 9:41pm  
pubgirl wrote on Nov 21st, 2008 at 9:33pm:
Paul98 wrote on Nov 21st, 2008 at 9:27pm:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  

-P.



There have always been those as far back as I can remember, not as long as some of you of course. That is what you get on a forum about a health condition, it goes with the territory doesn't it?

Needy people wanting something the forum can't give. I remember one REALLY notable one that went on for YEARS.



Yes there have allways been those but if they had CH they stuck around, read and learned.  The ones that didn't lift a finger to help themselves or others were the possers.

-P.
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« Last Edit: Nov 21st, 2008 at 9:43pm by Paul98 »  
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Re: This board.
Reply #11 - Nov 21st, 2008 at 9:48pm  
Quote:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood. 


   Paul...you have SO hit the nail on the proverbial head.    Smiley Smiley Smiley
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Re: This board.
Reply #12 - Nov 21st, 2008 at 9:55pm  
I haven't had a serious hit in years but no where have I learned so much about CH.

Chers get along fine here.

Charlie
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Re: This board.
Reply #13 - Nov 21st, 2008 at 9:55pm  
Linda_Howell wrote on Nov 21st, 2008 at 9:48pm:
Quote:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  


  Paul...you have SO hit the nail on the proverbial head.    Smiley Smiley Smiley



Does that mean if people take but can't give, need help from others because thay can't help themselves should stay away?

I'm sure that isn't what you mean, am just pointing out how this could read to others?

The attention seekers with a problem a CH forum cannot help have always been a bugbear of mine after I wasted a big chunk of my life on one, we all did at the time! (never again) but I do think we need to be careful how we word this as it could alienate or scare even more new people who NEED to take rather than give initially

W the B
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Re: This board.
Reply #14 - Nov 21st, 2008 at 9:56pm  
Back in the day when this site was started, "I vomit and need a dark place to lay down" was not CH.

Today, anyone that shows up here and says they have a CH diagnosis with those symptoms are welcomed, and anyone that disagrees is being mean.

What is wrong here? Roll Eyes

purpleydog wrote on Nov 21st, 2008 at 4:36pm:
I belonged to a board once where you couldn't send PM's, you couldn't post any links of any kind. You couldn't give out your email addy to anyone, nor an IM address. You could not just post what you thought, because it would offend the moderators, and one would be banned for that and for doing anything I listed. And if there was even a hint of attacking someone, the attacker was banned. If you said anything negative at all about anything, you'd get banned.


Let me guess, Chris....OUCH-UK?

Thats basicly the way it is there.  Wink
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Re: This board.
Reply #15 - Nov 21st, 2008 at 10:03pm  
pubgirl wrote on Nov 21st, 2008 at 9:55pm:
Linda_Howell wrote on Nov 21st, 2008 at 9:48pm:
Quote:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  


  Paul...you have SO hit the nail on the proverbial head.    Smiley Smiley Smiley



Does that mean if people take but can't give, need help from others because thay can't help themselves should stay away?

I'm sure that isn't what you mean, am just pointing out how this could read to others?

The attention seekers with a problem a CH forum cannot help have always been a bugbear of mine after I wasted a big chunk of my life on one, we all did at the time! (never again) but I do think we need to be careful how we word this as it could alienate or scare even more new people who NEED to take rather than give initially

W the B



Some come here so lost and hopeless that they need an initial helping hand.  No problem with that.  The ones that don't lift a finger after getting some help are never going to over come CH.  They WANT to wallow in pity and attention.

-P.
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Re: This board.
Reply #16 - Nov 21st, 2008 at 10:03pm  
Jonny

Two different places with two different way of doing things- that's why we need both

W
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Re: This board.
Reply #17 - Nov 21st, 2008 at 10:04pm  
Paul98 wrote on Nov 21st, 2008 at 10:03pm:
pubgirl wrote on Nov 21st, 2008 at 9:55pm:
Linda_Howell wrote on Nov 21st, 2008 at 9:48pm:
Quote:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  


  Paul...you have SO hit the nail on the proverbial head.    Smiley Smiley Smiley



Does that mean if people take but can't give, need help from others because thay can't help themselves should stay away?

I'm sure that isn't what you mean, am just pointing out how this could read to others?

The attention seekers with a problem a CH forum cannot help have always been a bugbear of mine after I wasted a big chunk of my life on one, we all did at the time! (never again) but I do think we need to be careful how we word this as it could alienate or scare even more new people who NEED to take rather than give initially

W the B



Some come here so lost and hopeless that they need an initial helping hand.  No problem with that.  The ones that don't lift a finger after getting some help are never going to over come CH.  They WANT to wallow in pity and attention.

-P.


Agreed, they should go and see a counsellor
Embarrassed Embarrassed

W
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Re: This board.
Reply #18 - Nov 21st, 2008 at 10:16pm  
Good lord Paco, you're 72? I thought that we were the same age. No wonder you are so long in the tooth. Wink
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Re: This board.
Reply #19 - Nov 21st, 2008 at 10:19pm  
Jimi wrote on Nov 21st, 2008 at 10:16pm:
Good lord Paco, you're 72? I thought that we were the same age. No wonder you are so long in the tooth. Wink


LMAO! 

Love Paco's foil hat pic Wink

-P.
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Reply #20 - Nov 21st, 2008 at 10:23pm  
Paul98 wrote on Nov 21st, 2008 at 10:19pm:
Jimi wrote on Nov 21st, 2008 at 10:16pm:
Good lord Paco, you're 72? I thought that we were the same age. No wonder you are so long in the tooth. Wink


LMAO!  

Love Paco's foil hat pic Wink

-P.


The knee slapper is that Wendy would be banned just for posting what she did in this thread over at OUCH-UK.

Funny huh?  Grin
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Re: This board.
Reply #21 - Nov 21st, 2008 at 10:27pm  
Sorry- don't understand?

Haven't said anything banworthy have I?

Say FAR worse and no-one minds
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Re: This board.
Reply #22 - Nov 21st, 2008 at 10:28pm  
pubgirl wrote on Nov 21st, 2008 at 9:55pm:
Linda_Howell wrote on Nov 21st, 2008 at 9:48pm:
Quote:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  


  Paul...you have SO hit the nail on the proverbial head.    Smiley Smiley Smiley



Does that mean if people take but can't give, need help from others because thay can't help themselves should stay away?

I'm sure that isn't what you mean, am just pointing out how this could read to others?

The attention seekers with a problem a CH forum cannot help have always been a bugbear of mine after I wasted a big chunk of my life on one, we all did at the time! (never again) but I do think we need to be careful how we word this as it could alienate or scare even more new people who NEED to take rather than give initially

W the B



No, I think it's just too many deaf whiners looking for an ear to piss in. The ones who want to listen always get the attention they need / want. If that didn't come out right I sorry. Lips Sealed
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Re: This board.
Reply #23 - Nov 21st, 2008 at 10:30pm  
pubgirl wrote on Nov 21st, 2008 at 10:27pm:
Sorry- don't understand?

Haven't said anything banworthy have I?

Say FAR worse and no-one minds


This aint OUCH-UK.  Wink
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Re: This board.
Reply #24 - Nov 21st, 2008 at 10:34pm  
Quote:
pubgirl wrote on Nov 21st, 2008 at 9:55pm:
Linda_Howell wrote on Nov 21st, 2008 at 9:48pm:
Quote:
The pretenders were the ones seeking attention and constant back patting.  They never lifted a finger to help themselves or others.  Back then this site was hard core CHers for the most part that were desperate to talk to other people that understood.  


  Paul...you have SO hit the nail on the proverbial head.    Smiley Smiley Smiley



Does that mean if people take but can't give, need help from others because thay can't help themselves should stay away?

I'm sure that isn't what you mean, am just pointing out how this could read to others?

The attention seekers with a problem a CH forum cannot help have always been a bugbear of mine after I wasted a big chunk of my life on one, we all did at the time! (never again) but I do think we need to be careful how we word this as it could alienate or scare even more new people who NEED to take rather than give initially

W the B



No, I think it's just too many deaf whiners looking for an ear to piss in. The ones who want to listen always get the attention they need / want. If that didn't come out right I sorry. Lips Sealed


That the trouble with the written word

I bet you remember the lady I am referring to that went on for years Linda.

Paco's post is a perfect reference to those kind of posters. They drain the emotional energy and time of others and make people resent giving it in future - which is awful for those who deserve the help

W
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