Author |
Topic: Where do we draw the line? (Read 4217 times) |
|
Elaine
Guest
|
When I first came to the board as many of you the first things I did was read the post. Man I FOUND OTHERS who KNOW what I am going through. I am not ALONE. Every post I opened I knew these people had clusters. I read it in EVER word. I just sat there in tears. It was either a person that had clusters or someone that watched a love one go through the pain of clusters. I will never be able to say what I felt that day.
I come to the board now and I see Migrainers, tension , and God knows what other type of headache sufferers are here. I see the "I have a cluster as I type" post..."I have a clusters as I chat"..."I see I had a cluster for the last 24 hours etc... it goes on and on. Then I read everyone is different post. Well everyone is different but cluster headaches are not different. They effect everyone the same damn it. How you react to them may be different , but the Pain and the way they come and go and their duration is the same. The rest is all BS. I feel so sorry for people who really do have clusters that come here and have to wade through the BS to find someone that has clusters.
Now we have people who are coming for reasons other than CH . They knew someone that they thought had CH years ago or they had a lost love they were sure had them or they know someone on the net
that might have them. On and on it goes. Where is all this going? I have great compassion for all who suffer any kind of pain and feel for those that think they are here to help but come on where do we draw the line?
|
|
 IP Logged |
|
|
|
NancyMcFree
Guest
|
 |
Re: Where do we draw the line?
« Reply #1 on: Oct 8th, 2002, 6:47pm » |
 Quote  Modify
 Remove
|
I have never drawn a line and dared people to cross it. Welcome one, welcome all. If people have fun with the posts it's cause they are only human and like to have a life.
And the way cluster headaches appear/dissapear/and manifest themselves to each and every one of us is different. The way we deal with the pain is different. The drugs that work and don't work for us is different.
Sorry Elaine .....we are all different. And this ain't no exclusive club everyone wants to join. At least I never wanted to join ... I must have gotten drafted cause I never signed up !!!!!!!!!
|
|
IP Logged |
|
|
|
jonny
Guest
|
|
Re: Where do we draw the line?
« Reply #2 on: Oct 8th, 2002, 6:55pm » |
Quote Modify
Remove
|
http://clusterheadaches.com/
Did you click on that link?
What did it say?
This is a website for clusterheads and supporters of.
If you are niether you dont belong here, we can not help you.
Click it again and read it again.
.......................................jonny
If it was up to me and you are not a CH head or supporrter I would tell you to get the fuck off my website!!!!
WHOA!!!!!, what next night owl.....people with tooth aches????.....people with hemeroids???.....when does it end, Kid???
|
| « Last Edit: Oct 8th, 2002, 6:58pm by jonny » |
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender: 
Posts: 3757
|
|
Re: Where do we draw the line?
« Reply #3 on: Oct 8th, 2002, 6:58pm » |
Quote Modify
|
Elaine's exactly right here. TRUE cluster headache symptoms are NOT different. That's what makes this disease so rare. The only difference is between episodics and chronics.
The whole purpose for DJ to establish this website was for things Elaine just talked about. So people who are affected by TRUE cluster headaches have a sense of belonging and understanding.
If people want to get the word out about clusters, great. Let OUCH's Media Committee know - spend your energy where it can be put to good use and let the clusterheads and their families continue to support each other.
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
Jackie
CH.com Alumnus
New Board Hall of Famer
Go For It!!!
Gender:
Posts: 2963
|
|
Re: Where do we draw the line?
« Reply #4 on: Oct 8th, 2002, 7:02pm » |
Quote Modify
|
Nancy & Night Owl,
Please read Elaine's post again and pay attention this time....you missed the point 
Margi & Jonny,
You both get a passing A+ 
Jacks 
|
|
IP Logged |
|
|
|
NancyMcFree
Guest
|
|
Re: Where do we draw the line?
« Reply #5 on: Oct 8th, 2002, 7:07pm » |
Quote Modify
Remove
|
I guess you drew the line for me Jacks .... thanks.
|
| « Last Edit: Oct 8th, 2002, 7:08pm by NancyMcFree » |
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Where do we draw the line?
« Reply #6 on: Oct 8th, 2002, 7:10pm » |
Quote Modify
|
more to the point here (but thanks, Jackie gal  ) everyone needs to read Jill's post. THAT kid's a true clusterhead. She's the reason all us oldtimers hang around. And yes, Jill it was VERY ok that you post here! THIS is what we're here for. It just sickens me that a real clusterhead feels shy to post here. THAT's what E's post is all about gang. 
Jill, please hang in there girl. And if you ever need a shoulder, i'm at moxie_miss@hotmail.com. Maybe I can help to educate your parents on how to support you.
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
jonny
Guest
|
|
Re: Where do we draw the line?
« Reply #7 on: Oct 8th, 2002, 7:11pm » |
Quote Modify
Remove
|
Night,
What we try to do is direct people that have other pain to the right websites......If we allowed anyone to stay and post soon we would have people from Ismokeagreatbong.com
See what I mean?, getting the word out is up to OUCH and not this site.
....................................jonny
|
|
IP Logged |
|
|
|
Jackie
CH.com Alumnus
New Board Hall of Famer
Go For It!!!
Gender:
Posts: 2963
|
|
Re: Where do we draw the line?
« Reply #8 on: Oct 8th, 2002, 7:21pm » |
Quote Modify
|
Exactly!
The idea here is not to compromise the mission or purpose of this site. The "theme" here is CLUSTERS..or that is what it was originally meant to be. That is the point Elaine is making.....plain and simple!!!!
Jacks
|
|
IP Logged |
|
|
|
jonny
Guest
|
|
Re: Where do we draw the line?
« Reply #9 on: Oct 8th, 2002, 7:28pm » |
Quote Modify
Remove
|
HELLOOOOOOOOO!!!!!!!
The words of the man that created this site is in this link.
Incase you missed it the first time here it is again, READ IT!!!!!!!!!
http://clusterheadaches.com/
..............................jonny
If you cant understand what we are saying after reading for a second time you are so much a JACKASS!!!!!!!!
|
|
IP Logged |
|
|
|
Night_Owl
New Board Newbie
over the stars
Gender:
Posts: 18
|
|
Re: Where do we draw the line?
« Reply #10 on: Oct 8th, 2002, 7:29pm » |
Quote Modify
|
Sorry...I didn't mean to cause a dispute.
Night_Owl
|
|
IP Logged |
"You cannot find peace by avoiding life."
|
|
|
jonny
Guest
|
|
Re: Where do we draw the line?
« Reply #11 on: Oct 8th, 2002, 7:43pm » |
Quote Modify
Remove
|
Night,
You didnt cause anything this comes up every once in awhile......some people think its the job of this site to promote CH when its OUCH which was formed to do just that.
DJ, built this site so clusterheads could hang and trade med tips and stories.
Its no way you kid
.............................jonny
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
Gender: 
Posts: 14968
|
|
Re: Where do we draw the line?
« Reply #12 on: Oct 8th, 2002, 7:52pm » |
Quote Modify
|
Evidently Owl has deleted what started this but here is my take on Elaine:
DJ makes it easy for me in the first three paragraphs, but I think Elaine thinks we go astray as well. Even though we get wound up in some pretty strange stuff, the moment someone comes here with a question or needing help, we drop whatever we're arguing about and love bomb the newbie. At least that's what I see.
My other observation is that migrainers don't stay here for more than a few posts and almost all of them depart with no trouble. No need to go after them with tar and feathers and pitchforks.
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Ree
New Board Hall of Famer
2008's my year to shine~SUN IS OUT!!!YAY
 
Gender:
Posts: 5236
|
|
Re: Where do we draw the line?
« Reply #13 on: Oct 8th, 2002, 8:55pm » |
Quote Modify
|
You havent scared off this Migrainer....LOL but I am after all a great supporter (can you hear the patting on my back) I even notice, but am afraid to say for fear of starting the M-Talk... there are alot of people here that dont have CH and I am proof of that... they feel what I feel. CH doesnt last 24 hours but Migraines do... CH attacks come more than once and sometimes 6-8 times a day Migraine doesnt... there is such a difference between US M people and THEM CHers (we are much cuter right Margi)... where do I sign up for that I smoke a big bong.com... Night Owl you didnt start anything that hasn't been goin on since the beginning here... this is a Website for people with Cluster Headaches and their Support... cluster sufferers havent had the support that various other groups (migrainers) have had... hence, DJ started this awesome sanctuary... period
|
|
IP Logged |
Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespocket http://www.prohawaiian.com
|
|
|
don
Guest
|
|
Re: Where do we draw the line?
« Reply #14 on: Oct 8th, 2002, 9:11pm » |
Quote Modify
Remove
|
Quote:| . And this ain't no exclusive club everyone wants to join. |
|
WRONG! This a very exclusive club. It excludes, or should exclude, anyone that is not a suffer or supporter PERIOD.
This is our territory, its our only territory, and we need to keep it that way.
|
| « Last Edit: Oct 8th, 2002, 9:12pm by don » |
IP Logged |
|
|
|
Mastifflvr28
CH.com Alumnus
New Board Hall of Famer
Freddie's eyes
Gender:
Posts: 3458
|
|
Re: Where do we draw the line?
« Reply #15 on: Oct 8th, 2002, 9:12pm » |
Quote Modify
|
My opinion, for what it's worth,
I agree.
Read DJ's first page.
Anything over a shadow and I'm off the puter...ain't goin near it! And I'm fairly addicted.
Also, anyone who does not FIGHT to find some relief, don' t have clusters. There is way too much pain to not fight for relief and knowledge.
And these days, you non clusters got it lucky...Jonny was WAY harsher as the guard dog in the olden days, go read the archives. Drawing the line back then, you had to have leather for skin.
Where's your "HMMMMMM" Jonny?
Mast
|
|
IP Logged |
Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
|
|
|
Not4Hire
CH.com Alumnus
New Board Hall of Famer
...WAS PF since Oct.'02, but ...oh my...(CBusters)
Gender:
Posts: 1190
|
|
Re: Where do we draw the line?
« Reply #16 on: Oct 8th, 2002, 9:18pm » |
Quote Modify
|
charlie...you and ave and nancyC were the first one's to "love bomb" me when I first got here....and then I got my peepee whacked when I took exception to something that Paco said.....(he was right..i HATE when that happens....)
and I've seen the meegrainers come and go...and that's a good thing....they're mo' better off on "their" board. They have to deal with "their" particular flavor of the MOFO....and I'm sure we wish them the best and hope they find their "key".
But like Elaine said: Quote:| Man I FOUND OTHERS who KNOW what I am going through. I am not ALONE. Every post I opened I knew these people had clusters. I read it in EVER word. I just sat there in tears. It was either a person that had clusters or someone that watched a love one go through the pain of clusters. I will never be able to say what I felt that day. |
|
.......and neither will I.....
I first found this board on a mountaintop in Peru(Nov.'99) .....I felt so alone in my pain, until I saw that I wasn't...... I could not answer, due to the computer firewall of the mining company I was working for at the time....but, all of a sudden ....I WAS NOT ALONE..... and I wept. I was NOT alone......wow!
when the MOFO came back in January of this year, I lurked for close to 2 months, and finally took my courage (as feeble as that sounds) and signed on......if I remember correctly, I was about #750 on this board....I believe there are now over 2,400 people who have actually given themselves a *handle*.......some of them will never say another word...some of them have become my brothers and sisters.....some of them are jerks/weirdos/saints/sinners...... i been flamed/ignored/helped/ chided/insulted/shocked/amused/ did i mention *HELPED?/pissed off/pissed on/ supported/ amazed/ oh, yeah, EDUCATED/ yadda yadda ......
....but I don't think we CAN draw a line.....(sorry E ;D).... true clusterheads are RARE...... we gotta take the good along with the BAD....... there are people yet to find this forum who NEED this...REAL BAD.... we can't make this such an exclusive club that we run off the ONE true genius CHer who will find the CURE...the *key* that will kick the MOFO in the ass for good........
(dat's the end of my rant)
|
|
IP Logged |
Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
|
|
|
don
Guest
|
|
Re: Where do we draw the line?
« Reply #17 on: Oct 8th, 2002, 9:25pm » |
Quote Modify
Remove
|
A mountain top in Peru?
That computer must have had one long fucking extension cord! ;D
|
| « Last Edit: Oct 8th, 2002, 9:26pm by don » |
IP Logged |
|
|
|
Not4Hire
CH.com Alumnus
New Board Hall of Famer
...WAS PF since Oct.'02, but ...oh my...(CBusters)
Gender:
Posts: 1190
|
|
Re: Where do we draw the line?
« Reply #18 on: Oct 8th, 2002, 9:33pm » |
Quote Modify
|
no... no.... no....I was reading the board from the wings of the famous peruvian Fartin Butterflies........
STFUD ;D
|
|
IP Logged |
Mantra: This will NOT kill me...This will not KILL me... This will not kill ME...
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
Gender:
Posts: 14968
|
|
Re: Where do we draw the line?
« Reply #19 on: Oct 8th, 2002, 9:50pm » |
Quote Modify
|
The old Peruvian Mining Co. ploy.
Must have been some good shit dug out of that "mine." 
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Drk^Angel
Guest
|
|
Re: Where do we draw the line?
« Reply #20 on: Oct 9th, 2002, 12:32am » |
Quote Modify
Remove
|
I have a question for everyone in favor gettin' rid of everyone but the clusterheads, and clusterhead supporters... Who is to say who are the "true" clusterheads? Because when I first started on this board, I was accussed indirectly (and not so indirectly by one person) of not having clusters, and they probably still think that way. C'est la vie...
PFDAN.......................... Drk^Angel
|
| « Last Edit: Oct 9th, 2002, 12:34am by drkangel » |
IP Logged |
|
|
|
Elaine
Guest
|
|
Re: Where do we draw the line?
« Reply #21 on: Oct 9th, 2002, 12:49am » |
Quote Modify
Remove
|
I was talking to someone tonight and they asked me a question , If I came to this site today and read the post would I feel like the people here knew my pain? I told them no I wouldn't... The whole point is...a true clusterhead does not see themselves in these posts nowadays! At least I don't!!!
Don your post is just how I feel.
I don't see that we can ever get it back to just clusterheads and cluster supporters ever again, the doors is wide open its been kind of broken down by us all. It may be to late to fix it but you know what..this is how I feel so I thought I would post it.
Thanks everyone for your post weather you agreed or disagreed.
PF night to you all no matter what kind of pain you have.
|
|
IP Logged |
|
|
|
LTBullitt
Guest
|
|
Re: Where do we draw the line?
« Reply #22 on: Oct 9th, 2002, 1:00am » |
Quote Modify
Remove
|
None of these decisions are mine of course Lainey but I know the feelings and frustration. I don't really mind who is around or why but then it's really none of my biz.
The anger I know though. During my first few years of Chs when I was scared, banging my head and doing the dance I had to listen to my exs' mom who had "clusterheadches." Usually when she was telling me how much pain she was in she would be watching tv, having a cigarette, or just sittiing around and talking.
My problem with this wasn't a lack of sympathy, I just felt it demeaned my pain more than a little.
I couldn't help wondering if she though we had the same affliction and I was just the big baby or insane b/c I would "do the dance" as people say.
|
|
IP Logged |
|
|
|
DJ
CH.com Administrator
Got Sleep?
Gender:
Posts: more than Jonny will EVER have!
|
|
Re: Where do we draw the line?
« Reply #23 on: Oct 9th, 2002, 1:24am » |
Quote Modify
|
now THIS is a damn good thread!
|
|
IP Logged |
I NEVER could have imagined! (April 11th, 1998 - present)
Adversity does not build character... it reveals it.
|
|
|
Riccardo
New Board Old Timer
Serial kisser... and Stetsons lover...
Gender:
Posts: 442
|
|
Re: Where do we draw the line?
« Reply #24 on: Oct 9th, 2002, 3:09am » |
Quote Modify
|
I just want to add my experience
When I started with clusters, my first two years were not normal: I got two attacks a day, three hours (or more) long. I stayed in BED DURING the attacks, and they were NEVER over KIP 7.
After two years all become "normal"
But, if in these times (God, 28 years ago!!!) I could have the WEB and the CH board, I could write:
- I have headaches that last all the night (I didn't think that was 2 SEPARATE attacks.... for me was only a fu@king headache ALL the night long).
- I cope with these headaches REMAINING in BED and taking some aspirins (at these times I thought were sinus related)
- I read here that CH is an unbearable pain, and I have (If you don't know KIP 10, KIP 7 is enough for you!)
-sometimes it lasts 24 hours or more (YES, as a newbie, you can't feel the difference of a KIP7 attack and the "normal" headache you have after the attack, or the rebound headaches given by meds)
OK folks, if I come in here, and tell you these 4 sentences, WHO of YOU can say "HE HAS CH!!!" ???
|
|
IP Logged |
Riccardo OUCH-Italia
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss