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

SWEET!  [smiley=headbanger.gif]

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. :'(

-P.

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.

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.

pubgirl wrote on Nov 21^st, 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

Paul98 wrote on Nov 21^st, 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!!

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.

Paul98 wrote on Nov 21^st, 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.

Sorry if I misunderstood the "pretenders" word. It means "young pretender" as in a usurper as well as someone who pretends things.

pubgirl wrote on Nov 21^st, 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.

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=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

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

Linda_Howell wrote on Nov 21^st, 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=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

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

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? ::)


purpleydog wrote on Nov 21^st, 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.  ;)

pubgirl wrote on Nov 21^st, 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=bow.gif] [smiley=bow.gif] [smiley=bow.gif] 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.

Jonny

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

W

Paul98 wrote on Nov 21^st, 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=bow.gif] [smiley=bow.gif] [smiley=bow.gif] 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
:-[ :-[

W

Good lord Paco, you're 72? I thought that we were the same age. No wonder you are so long in the tooth. ;)

Jimi wrote on Nov 21^st, 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. ;)

LMAO!  

Love Paco's foil hat pic ;)

-P.

Paul98 wrote on Nov 21^st, 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. ;) LMAO!   Love Paco's foil hat pic ;) -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?  ;D

Sorry- don't understand?

Haven't said anything banworthy have I?

Say FAR worse and no-one minds

pubgirl wrote on Nov 21^st, 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=bow.gif] [smiley=bow.gif] [smiley=bow.gif] 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. :-X

pubgirl wrote on Nov 21^st, 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.  ;)

wrote on Nov 21^st, 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=bow.gif] [smiley=bow.gif] [smiley=bow.gif] 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. :-X

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

Yes Wendy!  They suck the life out of you and give nothing in return.  Kind of liked your pissin in the ear experssion better though. ;)

-P.

Quote:

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

I believe I do Wendy.  ;)  Draining the emotional energy required and resenting it when it is taken advantage of.. as it has of late.  I understand that feeling all too well.  Paco in his old age still has something to offer all of us.  

JK  about the old age part, Paco

The Unknown Soldier

One of a multitude
Trying in vain to find
Just one who understands
The reliving of bad times
In the long small hours
Pondering whether
A mortal wound
In the heat of battle
Would have been
Better than this
Slow failing
Of wounded parts

fdharden - 2008

wrote on Nov 21^st, 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? ::) 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.  ;)

No, it wasn't OUCH UK. And there is a difference between disagreeing with someone, and being mean to them.


wrote on Nov 21^st, 2008 at 5:03pm:

Please remember, new people finding this site are largely uneducated about CH, they do not have coping techniques and they do not have knowledge. Please try to help with all those issues instead of taking issue with the way they are trying to deal with CH currently. We cannot prevent disagreements but can we at least moderate our language and personal attacks when airing differences?

purpleydog wrote on Nov 21^st, 2008 at 11:39pm:

No, it wasn't OUCH UK. And there is a difference between disagreeing with someone, and being mean to them.

I was talking about being banned for something you said. ;)

Happens everyday at OUCH-UK.

wrote on Nov 22^nd, 2008 at 12:48am:

purpleydog wrote on Nov 21st, 2008 at 11:39pm: No, it wasn't OUCH UK. And there is a difference between disagreeing with someone, and being mean to them. I was talking about being banned for something you said. ;) Happens everyday at OUCH-UK.

I didn't get banned from the site, I was commenting on how heavily modded it is. Also, I was referring to this:


wrote on Nov 21^st, 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.

It appears you were speaking of CH.com, was I mistaken?

Paco, you said a mouthful... and you're right... (and you're OLDER than I am -- I didn't think ANYONE was older than ME!! ;))

I think DJ has always understood that we're a TUFF bunch and can roll with the punches. Those of us who've been around for a long time have survived the "punches" and are tuffer for it.

We've always been able to say what we were thinking and sometimes the written word was taken out of context and someone took offense (just like politicks). Some of us could laugh about it and others got their panties in a wad about "nonsense" things. But we're all different.

Some people came (come) here looking for "pity" and never contribute anything but that's just to be expected. Some people come here just to "try" to belong to something and "pretend" to have CH. I don't understand those, but they usually don't stay long so .......

Over the years, those REALLY needing help have received it here and for those of us who did get the help we needed I'm eternally grateful to those who were here to give it.

Hugs BD

wrote on Nov 22^nd, 2008 at 12:48am:

purpleydog wrote on Nov 21st, 2008 at 11:39pm: No, it wasn't OUCH UK. And there is a difference between disagreeing with someone, and being mean to them. I was talking about being banned for something you said. ;) Happens everyday at OUCH-UK.

Absolutely not true. As far as I know, only 3 people have ever been banned in all its history and they were warned many times first and nobody at all has been banned in the last 2 years

I don't think it is helpful putting new people off posting there as well

Long in the tooth & wise in the head!!!!!!!!!!!!!!!!

Good read (why am I not surprised)

Nice to see you, Paco..... :)

Jacks 8-)

pubgirl wrote on Nov 22^nd, 2008 at 6:05am:

wrote on Nov 22nd, 2008 at 12:48am: purpleydog wrote on Nov 21st, 2008 at 11:39pm: No, it wasn't OUCH UK. And there is a difference between disagreeing with someone, and being mean to them. I was talking about being banned for something you said. ;) Happens everyday at OUCH-UK. Absolutely not true. As far as I know, only 3 people have ever been banned in all its history and they were warned many times first and nobody at all has been banned in the last 2 years I don't think it is helpful putting new people off posting there as well

Really, then can you explain the rush of people that were banned that came to this board crying about it?

All they wanted to do was talk about shrooms, they were warned not to and then banned.

MOB was one of the founding members of OUCH-UK.....where is he now....Banned? ::)