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Title: Where do we draw the line? Post by Elaine on Oct 8th, 2002, 6:36pm 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? |
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Title: Re: Where do we draw the line? Post by NancyMcFree on Oct 8th, 2002, 6:47pm 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 !!!!!!!!! |
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Title: Re: Where do we draw the line? Post by jonny on Oct 8th, 2002, 6:55pm 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??? |
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Title: Re: Where do we draw the line? Post by Margi on Oct 8th, 2002, 6:58pm 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. |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 8th, 2002, 7:02pm 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+ :D Jacks 8) |
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Title: Re: Where do we draw the line? Post by NancyMcFree on Oct 8th, 2002, 7:07pm I guess you drew the line for me Jacks .... thanks. |
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Title: Re: Where do we draw the line? Post by Margi on Oct 8th, 2002, 7:10pm 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. |
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Title: Re: Where do we draw the line? Post by jonny on Oct 8th, 2002, 7:11pm 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 |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 8th, 2002, 7:21pm 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 8) |
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Title: Re: Where do we draw the line? Post by jonny on Oct 8th, 2002, 7:28pm 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!!!!!!!! |
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Title: Re: Where do we draw the line? Post by Night_Owl on Oct 8th, 2002, 7:29pm Sorry...I didn't mean to cause a dispute. Night_Owl |
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Title: Re: Where do we draw the line? Post by jonny on Oct 8th, 2002, 7:43pm 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 :D .............................jonny |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 8th, 2002, 7:52pm 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 |
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Title: Re: Where do we draw the line? Post by Ree on Oct 8th, 2002, 8:55pm 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 |
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Title: Re: Where do we draw the line? Post by don on Oct 8th, 2002, 9:11pm Quote:
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. |
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Title: Re: Where do we draw the line? Post by Mastifflvr28 on Oct 8th, 2002, 9:12pm 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 |
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Title: Re: Where do we draw the line? Post by Not4Hire on Oct 8th, 2002, 9:18pm 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:
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) |
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Title: Re: Where do we draw the line? Post by don on Oct 8th, 2002, 9:25pm A mountain top in Peru? That computer must have had one long fucking extension cord! ;D |
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Title: Re: Where do we draw the line? Post by Not4Hire on Oct 8th, 2002, 9:33pm no... no.... no....I was reading the board from the wings of the famous peruvian Fartin Butterflies........ STFUD ;D |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 8th, 2002, 9:50pm The old Peruvian Mining Co. ploy. 8) Must have been some good shit dug out of that "mine." :o Charlie |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 12:32am 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 |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 9th, 2002, 12:49am 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. |
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Title: Re: Where do we draw the line? Post by LTBullitt on Oct 9th, 2002, 1:00am 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. |
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Title: Re: Where do we draw the line? Post by DJ on Oct 9th, 2002, 1:24am now THIS is a damn good thread! |
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Title: Re: Where do we draw the line? Post by Riccardo on Oct 9th, 2002, 3:09am 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!!!" ??? |
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Title: Re: Where do we draw the line? Post by BuddyH on Oct 9th, 2002, 6:40am Elaine (Johnnie) is my Best Friend has been for over 22 years now. I have watched her have cluster after cluster, night after night, day after day. I have taken her to the ER. I can look at her and know she is going to have one before she knows. I have learned what she needs from me. Even after 22 years I still don't know her pain.I don't understand it. I remember when Johnnie found this place. She called for the whole family, "Look I am not crazy, I found people who have clusters as I do".Johnnie had tears in her eyes, she cried hard and laughed at the same time. Johnnie would print out post bring them to Dinner and read them to us. I got to know many of you that way. It made so much of a difference in her when she found this place. Johnnie could talk to others who had this, she did not have to explain it to any of you, like she did me. I knew she needed this place and she needed to talk to others like her. I come here I read but I don't post here but maybe one time a year. The main reason I don't post is this is her special place, her special need. Johnnie did not need a supporter when she came here she had me and the girls. What she comes here for is understanding. The family supporters her, but we don't understand the pain. The thing that was special to Johnnie is the understanding that is there when she talks to another person with clusters. |
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Title: Re: Where do we draw the line? Post by Sweet_Landings on Oct 9th, 2002, 6:48am Wow Riccardo! See this is why sometimes I don't feel like I really belong here. Riccardo hit the nail on the head. Sometimes my pain doesn't seem to 'feel' like what is expressed here. Hell, I don't know if my eyelid is drooping or if my face is swollen. I don't even give a @#$! if it is, I am not going to go run to the bathroom and look and see if it is when I am in pain. Most of the time, I try to sit still and act as normal as I can. My HA's seem to hit more in the daytime and evening hours. I have kids at home and the last thing they need is to see Mom freaking out. When it gets too much to take I head out on walks, I can't see where I am going for the tears but I walk until I feel like I am more under control. It is possible that what I consider a Kip 7 is a Kip 10 for someone else. A Kip 4 for me might be a 7 for you. I can sit here with a Kip 4 and read through posts. I find that it is a distraction from the pain at times. Anything higher than that and I am outta here. But that is me. If I can't get a definite diagnosis from a neurologist, should I be banned from this place? I have taken the quiz and it says that I am a Cluster sufferer. But I don't have an official diagnosis as of yet. Pain and how we manage and deal with it is based on individuality. It is not right or wrong, just different for everyone. I agree that those with Migraines should be directed to a place where they can get support and direction for help. But should they be flamed and attacked? Should I be relegated to somewhere else because I have Migraines in addition to CH? I don't discuss the M's here, but have no fear I do know the difference. Flame me, beat me, degrade me, whatever...this is just my opinion. |
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Title: Re: Where do we draw the line? Post by Riccardo on Oct 9th, 2002, 7:03am ************************************ Hey Buddy, ciao! Happy to hear from you. ...and all you have said is really true. (P.S. give a kiss to Lady Elaine for me!) ************************************ Sweet Landings: this was what I mean. I think no one WANT to have clusters (OK, OK, t'was some exceptions, but they are completely outminded...) What I have said is that some symptoms of the first cycles are NEAR the headaches (and just for a 10% of CHers). And I don't want run the risk to say go f#ck you to that 10%. After 2 years they will return and will say the same to me.... ;D I wholeheartedly agree with Elaine and Jonny and Don when they say "this is the place for CHers" and, furthermore, any "normal" migraneur and headache suffferer can't be helped here. But beware to the similar symptoms! I cannot kick a person that have MY OLD symptoms! I am a CHer, and I was the same in those first years. (OK, I'm in remission from 5 years.... shhhhh!) |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 7:29am These discussions are always to me "difficult" - LOL. :P Ahem -- Riccardo - I'm blowin ya a big fat kiss! PS: I bet I eat more garlic than YU! :D Buddy, your post speaks for my entire family. thank you for explaining so PERFECTLY those feelings felt in my household TOO! :) PFDAN everyone. don't be so hard on yourselves. :) |
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Title: Re: Where do we draw the line? Post by Edna on Oct 9th, 2002, 7:34am (shhh.....congratulations on those 5 yrs. then riccardo) My confusion begins with ANYONE who comes here not EVER having heard of CLUSTER HEADACHES and looking for a dianosis????????? Just can't understand that part.....as far me..........LONG before I came here I suffered for over 20 yrs........and in that time do you thing I didn't READ EVERYTHING I COULD EVER GET MY HANDS ON ABOUT HEADACHES?? Any magazine article, newspaper article, tv news report, pamphlet in a docs office...........if it included anything to do with headaches.........Edna read it.......AND THAT is how I first ever heard mention of cluster headache. And as we know, not many out there know enough about CH.....so from that article my knowledge began to grow........and finally in the day and age of Edna being smart enough to find information here on this internet......I typed in the search word of "cluster headaches" and HIT HOME And this HOME exists because of a huge amount of HARD work and effort of ones before me.......for that I thank them........it just irritates the shit out of me when new ppl here can't BOTHER to take the time to read what's here and offered before commencing with senseless questions........Do I have clusters?? Need help with meds??? yada yada........HELL PEOPLE.......Look around.........and if you can't read dammit get help........HELL I found this place in the middle of one of my worse cycles EVER........(of course it WASN'T during a hit - God knows I sure couldn't of been AT the computer typing).......I read and read and read some more And those that say.......ooh I need help fast, can't bear to read all the info b/c in sooooo much pain........UGH......do you honestly THINK anyone here is gonna do ALL the damn work for you.......JESUS GET OFF YOUR ASS AND HELP YOURSELF oh hell, sorry but E it hits home more than you know. (gee, I don't think I'm getting to be like jonny????????) ;) oh well, gee E..........thanks for such a thread, glad DJ approves :D as for those of you that don't agree, oh well, hope you get over it EDNA |
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Title: Re: Where do we draw the line? Post by Lapsi_Harmaahapsi on Oct 9th, 2002, 7:39am I still sometimes think I don't have what you guys have. Mostly because of the pain. I'm usually somewhat reserved (some of my american/canadian friends still think I never smile :) ), so even the thought of "rolling around in pain" of banging my head against something is quite alien. I merely walk slowly around or sit and bury my head in my hands and rock (so little you can barely see it). I've never even thought about screaming out loud. So I think I can't be in as much pain as you are. But that's bull. Those people that know about this are pretty sure I have it. But even when I get the (second) "official" diagnosis when I go to the doctor while in cycle, I will still sometimes doubt it. So no wonder that "outsiders" can be skeptic. Bottom line: People are morons. Doctors especially. (present company excluded, naturally :) ) You know yourself best. If *you* have really studied the symptoms and yourself and found the symptoms to match, imo your opinion is better than a doctors. It doesn't matter if they don't understand you or can't diagnose it. What do they know? You know yourselves better. I'm not sure if any of this made sense. Edit: This applies mainly to "belonging" here.. you gotta convince your neuro to get meds.. I don't know if this works where you live, but it has worked for me: if you know better, be an arrogant bastard and make your doctor understand. Heck, it even worked here :) (It might help that I look mean. Shaved head, little over 6 feet tall, muscular looking. With pink square eyeglasses. AND those docs were women. But one of them was bigger than I.) Surprise, this got out of hand too. |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 9th, 2002, 7:50am Elaine's post is an attention getter....as well it needs to be. She, and a few others, are trying to draw attention to what this site is really all about. It's about CLUSTERS...symptoms, medications, self help, coping and correct diagnosis. It's NOT about tar and feathers or "line drawing" (let's not take that phrase out of context). It's not about flaming or bad mouthing people with other types of HA. We need to do a better job of helping people get correct diagnosis by directing them to what they are really suffering from. If they do have CH we'll get that right too (sooner or later). There are enough people here to know the difference. Are we really helping people who don't have cluster when we don't give them straight and honest answers...I don't think so and we aren't helping the CHers either. We are just putting mud in the water...confusing the real issue which is CLUSTERS. Aren't we doing the same thing to people who don't have CH that was done to many of you.... by not giving them the right information and honest answers we're doing more harm than good. It's not about banishment it's about help....for everyone. This site is getting more attention from the medical community and the media everyday.....thank God....finally!!!! It seems to me that it needs to stay as close to CLUSTERS as possible. I'm not saying that we shouldn't have fun here and raise some hell along the way(we would all be in much worse shape without the fun stuff and the BS) but the bottom line is still CH. Jackie Oh....thanks for the post, Buddy....good to hear from ya :) Jackie |
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Title: Re: Where do we draw the line? Post by Riccardo on Oct 9th, 2002, 8:03am wholeheartedly agree with you Jackie! KISSES :-* :-* :-* :-* :-* :-* |
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Title: Re: Where do we draw the line? Post by don on Oct 9th, 2002, 8:07am Adding my 2 Euros to Riccis post: It's easy for someone to manipulate the symptoms in order to fit the diagnosis. In my line of work I see it all the time. It's generally happens for 1 of m2 reasons. 1. The individual is seeking treatment and services for other conscious or unconscious ailment and that particular diagnosis will get them there. Simply put they are desperately reaching out for help. Sometimes it's a pathology. 2. The individual is seeking out an offered service that would otherwise be unavailable to them, Looking for a free ride. Either circumstance becomes evident in a short time, but how do you figure that out with black scribbles on an internet site? This is how I do it. After 26 years of this bullshit I have come to know a level of desperation and/or gratitude rather well. That is what I look for in someones postings, not the diagnosis. And further more, WTF is a Euro anyway? Will it fit in a vending machine? |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 9th, 2002, 8:08am Thank you Ricky :) I accept.....and :-* back at ya.... Jacks 8) |
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Title: Re: Where do we draw the line? Post by StanTheMan on Oct 9th, 2002, 8:12am While I certainly agree that this site should be catered to us clusterheads, I don't think that anyone who visits should be "flamed" or given the cold shoulder if it turns out they don't have CH's or are migrainers, etc. They should be gently and tackfully informed about who this site is for and hopefully given information about other sites that might help them. How many of us would want to be treated rudely if, say, we visited a migrain site when we were just starting out trying to find our way and get help, only to be flamed by someone saying "YOU"RE NOT A MIGRAINER! GET THE HELL OFF THIS SITE!" I know that many of us feel that CH'ers have been grossly misunderstood and ignored by many, so I suppose it's understandable why we might be tempted to keep a chip on our shoulder. But let's not travel down that road, OK? Gentle words, my friends... Prayers for PFDAN to all. StanTheMan |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 9th, 2002, 8:52am I am not sure if I follow the whole gist of what the old-timers are trying to get across. I do know there is no such thing as a dumb question. The only dumb one is the one that isn't asked. Yea, old stupid saying but true. Sometimes the true honest to god no bullshit sympton, description fitting newbies who show up are so overwhelmed and so happy they just blurt out there questions. To the old time internet users, some consider that rude. Not everyone is an old time internet user. I know I have answered the same question from my kids many times over. I wonder if they would think the same of me if I said F@#$ haven't we covered this in the past? They are family though so I always help. Quote:
not singling you out edna, your statement just seems to cover what I think the oldtimers are irritated about. Based off this statement it sounds like this should be the final place people come when they have finally been diagnosed beyond any and all doubt and done all the research so they will fit in from the start. Shouldn't this be the starting point? That was my interpretation of the welcome page. Perhaps the requirements to learn from this site should be a little more stringent and DJ should require a note from your doctor showing legitimate diagnoses. Then and only then would you be assigned a username and pw. General statement follows The next time someone ask you for directions to someplace, stop and ask yourself. Should I tell this person to go get a frickin map? Or take a minute and point them in the right direction? Oh well just this newbies take on all this. I'll be sitting on the fence again waiting to get shoved out or fall in and learn some more. |
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Title: Re: Where do we draw the line? Post by Riccardo on Oct 9th, 2002, 9:03am on 10/09/02 at 08:52:45, curtisdsc wrote:
YES, YES, YES......... I completely agree with you. |
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Title: Re: Where do we draw the line? Post by Mastifflvr28 on Oct 9th, 2002, 9:07am Curtis, I'm gonna push ya! :) This is my opinion: I do a lot of research for my interests and hobbies on the internet. I read a lot of sites and LOVE to find forums and chats on my "interests". Being that I've gotten "flamed" for asking questions too fast on a site that has all the answers I've learned to really look around on a site and read everything including archives etc to further my knowledge BEFORE posting a question etc. I totally understand the excitement of a newbie here. I totally understand them asking questions first, and reading info later. BUT...you have the exceptions...the ones that ask several questions, and you KNOW they take more time asking those questions then they would just cruising around and reading. Then you have the ones that ask the SAME question as the post that is 3 posts down on the board. How hard is it to look at the list of threads in front of your face and see a similar post that you were wondering about? I don't think we BASH the total newbies first question here...I think we do head them in either the right direction, or we post an answer that we posted 100 times before. It's the people that keep asking and asking and you KNOW they aren't wandering the halls, reading the info that is in front of them. Welps, that's my take anyways :) Mast |
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Title: So let's do something about it! Post by Bob P on Oct 9th, 2002, 9:08am For a while now I've intended to develope a simple Cluster Headache Primer. Written in plain English with the basices of CH. Who, What, When, Where, Why, How often...... Something that would fit on 1/2 a page. Doc Robinson, at the convention, felt this would also be more likely to be read by an unknowing doctor than any long article we could print out and give them. So........ What should be in this primer? List the basic facts that you think should be included here. I may included them, I may not. Just the basics, just the facts, please. Here's a start: CH always strikes on only one side of the head, however, they may occasionally change sides from attack to attack. |
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Title: Re: Where do we draw the line? Post by Riccardo on Oct 9th, 2002, 9:21am I think that this work is already done..... If you take a look at the topic: RevDeFord, topic: Please Help! - Newspaper Article in the "medication, treatment therapies" category, there is a lot of good sentences. But I appreciate this try to modify a long thread with a not useful end (I'm one of the parents...) in a good point to start a good work. Thanks Bob |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 9th, 2002, 9:21am Holy cow Riccardo, I followed your link and now I have a descrip of the pain my wife can understand. That picture is perfect. We battle over who hurts more her or me. She gets sinus headaches, hell the woman is allergic to everything but whoopi thank god. Sometimes for fun I poke her in the eye and she pucnhes me between the eyes so we can share our unique pain. Just kidding. I don't think she buys my ice cream heachache X10 description. This will show her. |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 9th, 2002, 9:46am I agree Mast, but when the brand new newbie shows up and has to go through a whole page of bashing or less than intelligent dialogue they just leave and no intelligent conversations can start. I go to other boards as well, I am sure most of us do. Some boards we just post a link and hope they get it. I know this search engine can give varying degrees of success depending on what you are searching for. Other boards we just ignore, now that is a powerful tool. I ignore my wife all the time when she finally figures it out and gets her stuff together then I entertain her conversation. ;D Read 75 times with 0 responses is a big hint to me. Hell I have 3 over in meds and treats. I am taking the hint and looking further. Can I sit in a chair the fence is hurting my ass. :) |
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Title: Re: Where do we draw the line? Post by SFChris on Oct 9th, 2002, 10:29am This is just an observation by someone who rarely posts during a "flaming thread". I try not to interject when people here are raging because I realize that it's all part of the fun of this website. It's one of the reasons why this site can feel like a family - warts and all. Some of the people here who are the quickest to "flame a newbie" for asking a question about headaches/treatments, etc. are the same ones who post inane bullshit here on daily basis. I get discouraged when people jump on a newbie who may not have followed exact protocol, but then post literally hundreds of messages here about nothing (not clusters anyway)....wha'd up with that? Sometimes a newbie will post a question that may be very easily researched just because they want to "join in" and need a topic to get started. And why on earth would anyone who doesn't have cluster headaches stay on this site and participate? And who here has the medical degree to try and diagnose anyone as a TRUE clusterhead? I left that to my neurologist... BTW, I want to thank each and every one of you here. Really. As I enter my second pain free month, I regognize that I couldn't have survived this past year without this site. Warts and all. Peace, love and good energy. Chris |
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Title: Re: Where do we draw the line? Post by dannyboy on Oct 9th, 2002, 11:05am Bob P, Exactly what you said sir! Exactly!! OUCH defines what a cluster headache is, and then tells the medical community what is what. So What Exactly Is a Cluster Headache folks? Please people, stop avoiding your internal conflicts of opinion and fight it out. Put something out there for the medical community to go on. Send it to the IHS and tell them, "Nice try, good start, but we've made some ammendments which we're sure will be of value" What Exactly is a Cluster Headache? Who dares say? ...Cause right now ... for every OUCH member, there's about one and a half opinions of what a cluster headache is. Define it!! Is Horton's in or is it out as a diagnostic criteria? Do you define it by symptoms or by the interventions that it responds to? If you define it by symptoms, then are these self reported as in KIP SCALE, or observable as in a swollen hypothalamus? Or a combination. Or something else. The page is clean and bear and ready. Like a virgin on Prom night. Danny |
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Title: Re: Where do we draw the line? Post by Shadetree on Oct 9th, 2002, 11:06am I registered just to post here... I have CH.... I know I have CH... I am a text book case... Dave (Ree's husband) |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 11:35am Bob... I still don't agree with that statement. Replace 'always' with 'primarily', or even 'almost always' then maybe I'll agree. Dave! Good to hear from you. Ree talks of you alot, but it's good to put a post to the legend. Good luck, and hope you find PFDAN again soon! PFDAN..................................... Drk^Angel |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 9th, 2002, 11:36am Mr. Buddy Thanks for understanding that part of me. Now if I can just get you to understand meapause :-)!!! Buddy is right in his post. We are all right to a certain degree. Jackie I agree with your post all the way. I wish we could do away with the war of the newbies against the old timers. I know a couple of old timers who a lot of us know they don't have clusters. We did them no favors by not telling them. The thing we have to figure out is how to tell people in a adult way. I have heard it said over and over so and so has a drug problem they don't have clusters...or did you see so and so post what a joke..they wouldn't know a clusters if they saw someone have one. I think we keep our mouth shut because we are so afraid of what other people think that we find it easier to say these things in private behind poples back. It maybe easier for us. But the person that is being talked about or inored really has no clue as to why. I think we hurt them more by doing this, then to come right out and say. Listen I been reading your post and I personaly do not think you have clusters I have reserched a little and and from what your telling me I think it to be this. I could be wrong as I am not a doctor but it can't hurt to ask your doctor about this. We can't stop people who just can't take a hint who keep posting this I know, but we can stop feeding them with I am here for you etc posted under them. As far as fun and games I see nothing wrong with them, except when they are under a serious post. There are all kinds of ways to try to hold things down here, maybe make this a site where you have to pay a monthly or yearly fee to post ? If your a real clusterhead you will pay it. Money going to OUCH or up keep of this site. I would pay a fee to post here. Something needs to be done. We are saying what we don't like lets post and find a answer how to fix it. Bob P had one way. There has to be a nice way and a way that helps the people here. It just can't keep going as it is. I am done now. Thanks again Buddy for posting and understanding, love ya! |
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Title: Re: Where do we draw the line? Post by dannyboy on Oct 9th, 2002, 11:40am If you're going to address The King, Mr Angel, then you may like to start with a low bow and some introductory niceties....... So, the DrK Angel steps up to the plate ... Nice One! |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 11:51am I agree Elaine. Talking behind someone's back is not the way to further the cause....... And there are many legitimate cluster sufferers who are both legitimate clusterheads AND who have drug (alcohol - you name it) problems. We are still human beings just because we have clusters does not mean we are immune to all of life's other pot a worms. I must agree with you that it would make more sense to simply send a polite e-mail HONESTLY and POLITELY stating your WELL INTENDED and MOST SINCERE MOTIVATION to ADEQUATELY ASSIST the person and head them in the right direction. Bravo.............. :) |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 12:00pm Elaine, Jackie, Riccardo, Don, Jonny, Buddy....... RIGHT ON! :D When I first found this site in 1999, AFTER 26 years of suffering from Cluster Headaches, I broke down and cried like a baby! It was the 1st time I realized that I was not alone! I poured over the mass amount of info for hours! I was like a sponge! Before I EVER posted one message, I was able to go to my doctor and get effective help for the 1st time in 26 years! Man! Do you know how powerful that was to me? That is what this site was all about! I didn't even have to post a single question.. the euphoria I felt finally knowing that I wasn't alone, or crazy, and learning how to fight this demon.. was simply overwhelming! I don't feel that anyone is being overly harsh to new people who come in here. I don't know how many endless posts that I have read, saying : " welcome to the site, sorry you have to be here, use the buttons on the left to get all the info you need". ( and this new setup is tons easier to navigate than the old site). You would think that that would be enough of a subtle hint to get people to research first, then ask questions. So, I cut a little slack ;D for those "oldtimers" that get just a bit irritated when someone comes in here as says : " Yeah, I'm getting hit with a kip 10 as I type" " yeah, this cluster lasted 3 days straight!" "what abortive works the best? " " does smoking cause clusters? " " what is the oxygen treatment? " " I finally found a cure for clusters! " I could go on ad nauseum, but you catch my drift ( are ya spongin what I'm spillin? :D). If I have learned anything over the last 3 years it is this: 1. The "oldtimers" here will give the shirt off of their back ( and more) to help anyone here ( and sometimes not here) that needs it. You will not find a more compassionate group. 2. Don't fuck with the "family" they outnumber ya! ;D 3. And finally, they are very proud of this place... their 2nd home, as DJ says... and they are very protective of it.. They all own it.. it's a part of them all.... so... please understand when they want it to be what it was intended to be... No one is that good that they can walk in here, and in a matter of minutes, hours, and days, and have the gall to criticize, suggest changes, or pass judgement on, this site, or it's members without getting fried by a few of its protectors.. ;D Not a rant.... just Slammy's view as he sees it.... God Bless you all for your support and thank you soo much for this site DJ.. I love you all! Slammy 8) |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 12:21pm Dannyboy... Will you please just shut up. Drk^Angel |
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Title: Re: Where do we draw the line? Post by Linda_Howell on Oct 9th, 2002, 12:36pm Hey Slammy?????? What are you doing in my brain taking words right outta my mouth????? Everything you said I concur with exactly. (don't think of this as a permanent occurance though) LOL This site is exclusive;y for Clusterheads and their supporters. Period Linda Howell |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 9th, 2002, 12:37pm Damn, Slam (catch the rhyme... ;D) Great Post :D Maybe you haven't been breathing to much of your own air after all.... ;) Thanks, Jacks 8) |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 12:54pm Hey kid... I believe we all deal with our beast in our own way, some are just better at dealing than others. Different ppl have different thresholds, and will react differently. Just because you may not act the same an I do, does not mean that one or the other don't have clusters. Personally, when the attacks peak out, I can't hardly think, and I certainly can't type, but at lower kip will many time surf the web, or read the boards, until it becomes unbearable. PFDAN................................. Drk^Angel |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 9th, 2002, 1:05pm Exactly, Drk.... :) The one sided pain, droopy watery eye, stuffy nose, etc. are typical CH symptoms. These are what the vast majority of CHers deal with. The head banging, screaming, rocking, etc. are how different CHers REACT to the pain of the attack. I think we see many different "reactions" to CH but the "symptoms" are pretty cut and dried. Jacks 8) |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 9th, 2002, 1:23pm Ok Slammy and all the others he mentioned, (damn oldtimers :o) I will be the pivot point. ::) I understand what you are saying and it does make since to a point. So here goes. I did not come to this site for a diagnosis. My neuro did that. I was initially turned off by some of the threads I followed. Then I figured well these people MUST get cluster too. After all they are very opinionated like myself :) Shouldn't group everyone sorry. What I was looking for was a place to hopefully find how things worked for people. You know share experiences ask the questions whether they are stupid or not in someone elses eyes. I wasn't looking for a cure. I was looking for experiences. Example, I tried Mg because of this site. From that my CH pain dropped drastically. So I was hoping I could post questions regarding and get someone with short term or long term relief also what to expect you know meaningful conversation. Not, ah come on CD can't you read the archives. Well yea, but some realtime conversation on the subject would be nice. Or from the oldtimers someone going hey didn't such and such try that with success or side effects or it didn't work at all. Or hey, try this dude and give a user name. Ya know point the newbie in the direction he needs to go. Not slam the door in his face because he didn't show up with all the knowledge he needed, so all he would have to say is Sorry your back man PFDAN. Hell I feel my pain I don't need acknowledgement. I want info on how to deal with it. The first thing DJ said to the newbie is research the site. Great, most do, then what sit around and talk about what? So far it looks like what not to talk about and an assortment of other things but mostly don't talk about anything on clusters. Ok I developed a case of Lapsi idis. I have my helmet and my shoulder pads on. And most importantly my butt plug in. So I am ready. ::) Did I mention you all are a group group of people. :) Go gentle on me. |
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Title: Re: Where do we draw the line? Post by don on Oct 9th, 2002, 1:30pm There is only one reaction to the pain that I can not buy as indicating a CH. "I lie down till the pain passes" That was a gooid post Slam. Made a lot of sense. Your started to scare me Slam! LOL |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 1:36pm But also, not everyone is going to have all the symptoms. Even the IHS guidelines state that only one of the other symptoms besides the pain is enough to diagnose CH, and one of the symptoms on the draft proposal for the new guidelines is the dance. So according to the IHS, you can dance, and not need to have the other symptoms, or you can have one or more of the other symptoms, and not have to dance. What I think Oringkid was primarily talking about is that some of the ppl here make all encompassing comments that how can so and so possibly have clusters, and be posting to the board during an attack. I'm sure even more here have thought it than just the ones who've posted it. Here's a simple answer for you who have... Because they aren't you. Pain is subjective, and reaction to pain is subjective. Maybe the pain from the beast is the same for everyone, but I don't believe the intensity of the pain is... I don't believe the reaction to the pain is... And I don't believe the pain threshold of everyone is. PFDAN.............................. Drk^Angel |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 2:08pm Doncha worry kid... You belong here just as much as anyone else does. If anyone tries to tell ya you don't, tell them to go to Hell, and move on. PFDAN....................... Drk^Angel |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 2:18pm Ok, this sucks........ it's blowing my "Slammy" personna all to hell! >:( Curtis.... I went back and looked at all your posts.... the first 12 were great... you had questions..and for the most part, you got pretty decent responses to them... then came the 13th and 14th posts.. this is where you stepped on that cheesedick of yours.. ;D the 13th post, you stated: Quote:
Then you got some reponses that you didn't care for..... then you posted: Quote:
This earned you the famous WAFCD! award. ;D The point I am trying to make is that if everyone really took the tme to read what people are posting, then these generalizations of " the oldtimers are chasing the newbies away" type of stuff would not be made. I think the people on here do a great job in pointing the newbies in the right direction. I truly do not believe we slam the door on a newbie's face when he doesn't show up prepared. Another point... the "oldtimers can't even begin to count how many times someone will pop in, stir the shit for a few weeks, then disappear..... So, they will be a bit slow to warm up to people. You kinda have to earn your stripes.... nothing wrong or harsh about that. Sherry, I know you didn't read what I posted cuz you don't take anything Slammy posts seriously ;) but, if the shoe doesn't fit..don't try to wear it.. :D Unless I am mistakened, I didn't see your name in E's post. However, several other people came to my mind when I read her post... yours not one of them. I wouldn't take it personally.... but hey, that's me.. 8) Slammy 8) |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 9th, 2002, 3:07pm Slammy don't let me get you mad. I may be just one of those guys passing through. You know trying to find my place and all. :) Quote:
As for 13 and 14 well gosh can't a person have an idea. :'( I am asking for another award I think :-/ Quote:
I completely argree. Here lately though, it seems like most of the post are about that. Vicious circle I see here. It's dead with me. No more, nadda, zip :-X No more oldtimers, just caring considerate individuals with experiences to share. Hint taken. Again, I have been called a lot of things, here lately CD, but never fast. By the way I have some cream for that CD problem now. It is slowly working. Quote:
I'm trying, I'm trying. Again that fast thing. ;) I still want someone with Mg experience to talk to. I am going to crawl back up on the fence now. |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 3:16pm Curtis, You'd never make me mad.. :) actually, I think you're an all right dude.. :) regarding ideas... yours just sucked.. that's all.. it's ok to have them , though.... ;D I wish I could help you on the Mg thing, but I don't have any experience... maybe someone will pop in with it... And don't fuckin go crawling back up on that fence.... as the wise, OLD, sage jonny says: " Grab an oar and start paddling! " ;D Slammy 8) |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 9th, 2002, 4:23pm This was a good thread just never came up with a solution. I feel like I am one of the lucky ones here cause I do know what it was like when only cluster head and their supporters were here. I still remember the feeling. I will never forget it. I miss it. I miss a lot of the true clusterheads that have left. Jack, Drummer, Amanda. and many ,more. I love my new friends clusterheads or not but I miss the understanding as Buddy said only a clusterhead knows. Thanks for keeping this thread from being a flame. Thanks for not making it a joke. Thanks DJ for everything . |
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Title: Re: Where do we draw the line? Post by jonny on Oct 9th, 2002, 4:33pm I also remember, ahhhh, the good old days when I would tell people exactly what was on my mind......LMAO ;D .........................Sugar coating jonny |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 5:41pm It seems to me as though there are still clusterheads around these parts that understand the nature of the beast. Just because there may be a couple of ppl that are trying to be an indirect supporter, or who ppl believe to not have clusters, doesn't mean we are unable to share our experiences with ppl that understand. I don't see where it degrades the relationships, or the discussions. True... I wasn't here when it was absolutely only clusterheads or direct supporters, but I find this place as a great place to meet other sufferers. Please excuse me if I'm missing something here, but it almost sounds like y'all are saying that clusterheads (and their supporters) can't have a good time, and get along, unless clusterheads (and their supporters) are the only ones in the room. Is there really anything that we do or say when only with other clusterheads, that we wouldn't say publically? Do we really have some kind of secret handshake, or secret oath that we must protect from ppl who are not members of our exclusive club? I'm really starting to loose my understanding of this topic with everyone talking about how much better it was here before the non-clusterfolk began to visit. Like I said, maybe I'm missing something... PFDAN............................. Drk^Angel |
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Title: Re: Where do we draw the line? Post by jonny on Oct 9th, 2002, 5:53pm http://clusterheadaches.com/ ::) |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 9th, 2002, 6:02pm The topic of this thread is "Where do we draw the line?" but it seems to me as though the line is already drawn. It's not a line that some ppl want... It's a wall. They want a big, strong, high wall, covered with razor wire and patrolled by armed guards. Anyone who tries to get past that wall to the inside without the proper credentials and references are to be shot dead, and anyone who have been allowed in, will never be allowed to leave. C'est la vie... Clusterhead Prison. PFDAN............................... Drk^Angel |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 6:03pm Elaine (and all of the original members here since the beginning)...feel kinda sad tonight after this topic. If there is anyone suffering from clusters i can't imagine that their feelings are aloof or immune to the content in this thread... I came here in February. I felt that same feeling Elaine. My FAMILY felt that same feeling FOR me. The tears, the relief, that special feeling that I still find difficult to describe that courses through you when make that first discovery......there really are NO words. Here is a question: if you can find it in your heart to imagine what it is like for us who are new to encounter such a wonderland. You see, Elaine, you began the journey along with many others here who I as a newcomer shall forever be grateful for. For those of us that followed, it is always that SAME feeling E. No matter what. But, you see, you guys have a history together that cannot be shared with the rest of us. We simply were not there at the time. So, our interraction at this site cannot ever be what yours was to eachother. I hope I'm making sense. Probably not. (NO TED, I'm NOT DRINKING ;) It is a special and fantastic thing you guys did for all of us. bless you all. Although I have accumulated my share of cat scratch welts - LOL, I have also acquired so much more knowledge and help than could have ever hoped for. The hurt feelings, the head to head butting, well, that is part of life in any forum. I have felt the most annoyance (ok, sometimes even mild hatred - LOL - REALLY :D) for my most loved family members at one point or another. Why would it be any different when finding a place that must always be important for me (ch.com). It saved my life just like my father, mother, brother, sister would have done (even if we just finished kickin eachother's ass)... Things change. harder for old timers to take in sometimes I guess. But, know this. You continue to be essential for the survival and GROWTH of this website - sothat in the future - when it is a MIGHTY FORCE beyond your wildest dreams, you will be able to appreciate it ALL. Good and Bad. Any one who really believes that good and bad are not cohabitating anywhere else is not being realistic. That's how we know we kicked ASS! ::)Ok, NOW i need a beer. :D Love to all. PFDAN to all. |
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Title: Re: Where do we draw the line? Post by jonny on Oct 9th, 2002, 6:16pm Hey DRK, This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches! There are a few other sites out there dealing with Cluster Headaches, but no real place to "interact" with other Cluster sufferers. There are a few message boards where you can read posts dealing with Cluster Headaches, but sorting through all the migrane, tension, and other headache posts to find the few about Clusters is enough to bring on a headache! Never again will you have to search, hour upon hour, for information on Cluster Headaches! You now have a place to "hang out" that you can call our very own. You now have a place to "vent" when you wake up at 3 a.m. with a headache, the oxygen tank is empty, and you're out of Imitrex! Finally...a place where you can talk to someone about how horrible your headaches are and know that they really do understand your pain. ................................................................................... DJ wrote this, why dont you E-mail him and ask him if he was only kidding when he wrote it? .........................jonny |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 9th, 2002, 6:22pm Kim, Our history is right here. All anyone has to do is read the arcives. We know your history we read everything here even the silly stuff. We answer all your questions. It seems to me some of you don't want to know if you did you would read read read. Its so plan that some of you still don't get and never will!!!! Here is what the link says Jonny keeps posting and this is what it is all about. Never again will you have to search, hour upon hour, for information on Cluster Headaches! You now have a place to "hang out" that you can call our very own. You now have a place to "vent" when you wake up at 3 a.m. with a headache, the oxygen tank is empty, and you're out of Imitrex! Finally...a place where you can talk to someone about how horrible your headaches are and know that they really do understand your pain. |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 6:33pm I know your history too E, cuz I DO READ. And, it is way similar to mine. Point taken. Four years of reading (i'm still working on it). What I don't understand is why I never read a post that is happy that the (legit) numbers are growing. They ARE. Why aren't you HAPPY? Why do you continuously RAIL against the non-cluster sufferers when at the same time you have experienced a WEALTH of NEW BLOOD? Aren't you happy to see that we new guys found you? do you want us to go away? What? I don't get it. WHAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! >:( |
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Title: Re: Where do we draw the line? Post by cox3406 on Oct 9th, 2002, 6:35pm I am a newbie, but I do know a couple of of things. I am at home here. I read the first page of the introduction and cried like a baby. I read posts and cry like a baby. You are just like me, Clusterheads. People, but Clusterheads. If you are not sure if you are a CH, you are not a CH. I aint been here long, but I do belong, I KNOW it. I have ranted and raved almost every hour I could, between HA, since Google and I discovered you the other day. I didnt post most of last night or today because of CH. I cannot even consider opening my eyes, much less sitting at the computer when a HA is happening. I am ghosting now, maybe a 2K. Double this and I go to my specially prepared bedroom with foil on the windows and the "Do Not Disturb" sign on the door and I hurt untill it goes away. Then I regroup and continue, untill the next one. CHers do not post during an attack. CHers only hurt and wait. Non-CH folks wont ruin our home here because they will naturally go away, for the rest of us, this is the last house on the end of the street. Home sweet home |
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Title: Re: Where do we draw the line? Post by jonny on Oct 9th, 2002, 6:44pm Why do you continuously RAIL against the non-cluster sufferers when at the same time you have experienced a WEALTH of NEW BLOOD? Why?........Cause this site is for cluster sufferers and supporters not "Non-cluster sufferers" thats why. ................................jonny |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 6:53pm Okay. I am screaming now. I am screaming to Lars, and Bennie Sue, and Tim and Laurie and Jack and Drummer and IcBob (PLEASE) and the list goes on. Where are you? why are you so seldom heard from? Is it because you found a life? Is it because you are no longer passionate about this house? WHERE DID YOU GO? Should I go there too? I don't know anymore. I can't say anything right it seems. I don't read, i guess. Oh yeah, now I am a black and white painter who has my head up my ass ::) When I post a silly post, it's followed up with "BOOZE" SHIT. Okay, I can take it. Elaine, maybe I will never get it. Maybe you will tell yourself that I never was a true clusterhead. That is how you can keep giving your own diatribes. This has been building for a long time. I will not change my ways E. And, I am a true cluster sufferer. You can say what you want, it don't change that fact. I wish you PFDAN. All of you. Testy Kim Oh -- and JONNY - just read yur post. As usual you only quote what you can immediately FART on. It's the WHOLE PIC dude, the ENTIRE THING. >:( |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 9th, 2002, 6:58pm The old board was full of clusterheads and supporters. This one is too and the new format bores the shit out of those who don't belong. It really does. Nothing is perfect but this is pretty damn good. Charlie |
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Title: Re: Where do we draw the line? Post by cox3406 on Oct 9th, 2002, 6:59pm ..........................can't we all just get along? |
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Title: Re: Where do we draw the line? Post by jonny on Oct 9th, 2002, 7:00pm If I cant quote one sentence then you should not type it.......Right? Seems to me I qouted you word for word, if you dont stand by that say so. ..................jonny |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 9th, 2002, 7:02pm If the shoe fits wear it but no where in my post did I say YOU did not have clusters. Now I am going to bed you do as you like but fact is you still do not get what I have tried so had to say. I guess the only person that truely knows what this site was ment for is DJ. I just know what I use to feel and what I feel now is not the same. I do have that feeling when I talk to a clusterhead or chat or post with one, but I have to really search the post now to be able to say hey that person knows how I feel. |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 7:08pm Jonny.........WHAT? ???WHAT???????????!!!WTF? Are you TALKING ABOUT? ??? E - Good nite. This place NEVER gives me a hard time about finding someone who understands...Why don't you think positive E. Why don't you rejoice in the good you have and still bring to this place??????????? I send you to bed E with all my heartfelt thanks. I am a blockhead. Mean well. Please give us a piece of bread that has no mold on it..... cuz we really need it. |
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Title: Re: Where do we draw the line? Post by Paco on Oct 9th, 2002, 7:20pm Jonny and I found this sanctuary at about the same time and even learned to tolerate each other. (You can't imagine how grating the accent of Boston Beaner is on a Georgia Cracker.) Here, I met, and formed a bond with other clusterheads--takes one to know one. I exchanged emails with Elaine and BobP and Hub and Drummer and Margi and even Jack E. Boyd. What have I learned from this site? Only this: Every clusterhead and true supporter here would do anything within their power to help me. I am not an easy person to live with, and I know my wife--a true supporter--is a saint. She has lived with my disease and suffered her own private hell along with me through these 24 years since the alien beast attached itself to the inside of my skull. The first couple of years here, I became very protective of our turf. Some of us--especially me--got very acerbic, to the point of threats to those migrainers that stumbled in here looking for sympathy. For me, the site has changed, and I have not been able to keep up with the huge volume of yakyakyak about every bump in life's road. Elaine's post brought back the purpose of this site--DJ's purpose. I wish we could recover what we had. For any who think I am trying to exclude them, you are right if you do not suffer clusters or personally support a sufferer. I have been accused of taking this site too seriously. It's true. That is why I have stopped visiting here. Take this as you will: I have chosen to leave this site because the migraineurs and those who spend their lives looking for a digital family have taken over. I will continue to do what I can to help anyone who suffers clusters. As Boob says, "You are the most courageous people I know." Now, I will go take the advice given to me so long ago by the second president of OUCH: GET OVER YOURSELF! |
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Title: Re: Where do we draw the line? Post by jonny on Oct 9th, 2002, 7:27pm That is the end of this debate to me. Good words, Bro! ...................jonny |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 7:27pm PACO, seems to me you act more meegrainer than ME. WTF? You take it too seriously? Gimme a freakin break. ANYONE with Clusters has ABSOLUTELY NO CHOICE BUT TO TAKE this place too seriously. so, you think the answer is to slink away in some kind of mopey fuckin attitude? Oh my GOD. Now I've heard EVERYTHING. Just because you gotta listen to some pee wees you get in a huff and LEAVE? WTF? I take it serious too. So, where should I go? Hate to repeat myself.... ::) But, you see, I too have clusters. Now that I finally get here you all take a fucking hike? What the fuck is THAT? Never heard more WHINING in MY FUCKING LIFE. What did you say to me a few months ago? Do you even remember? You said AMF............. ::)I'm waiting..... |
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Title: Re: Where do we draw the line? Post by Donna on Oct 9th, 2002, 7:38pm Boy, my head is spinning. Paco speaks 100% clustertruth. That's how any die hard clusterhead feels about this site. It was ours, it is ours and it always will be ours..a site devoted to the search of a cure for cluster headaches, the most up-to-date info, and a place for help and support. Kim, I miss your point. |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 9th, 2002, 7:39pm What a sad day this is for us all a true clusterhead is leaving a home he helped build. Paco I love you and always will!!!! I repect you highly and you are someone I got that feeling with. I would not have made it this far without people like you. Your words have always gone a long way with me. I am with Jonny this ends it for me too! |
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Title: Re: Where do we draw the line? Post by Jackie on Oct 9th, 2002, 7:41pm OK Kim....her ya go... ;D Shut the fuck up!!!!!! Sincerely, Jacks 8) |
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Title: Re: Where do we draw the line? Post by Elizabeth on Oct 9th, 2002, 8:17pm Many of us were blasted when we first came here, being told to leave because we didn't have CH.... Because I came here, I'm even more certain that I am a clusterhead. Wish I could quit this group... heck, I wish (occasionally) that I could quit being a parent too... but once in, always a member. Because I came here, I found abortives to try - oxygen, imitrex injections.... and preventatives that work for me. Because I came here, I know that I am not alone. Because I came here, I know that I am not crazy... that the pain isn't just in my proverbial head.... Many days I wish I didn't fit in here.... on the really rough days, I'm happy I found this place and these people to support me and guide me. JMHO, Lizzie |
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Title: GRe: Where do we draw the line? Post by kim on Oct 9th, 2002, 8:24pm :oGood GREIF ;D And to all a GOOD NITE ;D ::) |
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Title: Re: Where do we draw the line? Post by Ted on Oct 9th, 2002, 8:49pm I agree with everything said here so far. |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 8:59pm Which would be whah Tad - imean tEd? |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 9:06pm Quote:
Bahahaha Ted! ;D chicken shit... ;) I agree with Donna...... I miss Kim's point too. I've reread Elaine's posts and can't see where she's talking about you... The key statement in her post was: Quote:
does that apply to you, Kim? here's another one... Quote:
does that apply to you, Kim? I see Jonny and Elaine saying the same things over and over, and then see Kim, Sherry, and DA take exception to things that I have not seen them say! ::) I said it to Sherry, and Elaine said it to Kim... If the shoe doesn't fit.. don't try to wear it! ;D Slammy 8) |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 9:15pm Where you been at this past year then Slam. Cuz, frankly, i see nuttin but you brownin noses yu know lil bout. gimme a break slam ::)what, you can't get your face outa some poop - that's ok (no crosshairs) Miss my point. It's yur perrogative ::) PFDAN. Jacks - yep = Her I Go. Wish me lucki. I will never Shut the fuck up so get used to it. :) |
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Title: Re: Where do we draw the line? Post by Ted on Oct 9th, 2002, 9:20pm Well, you know me Slammy. I hate posting anything controversial or that might rub someone the wrong way. I generally try and only post light, fluffy, warm thoughts that makes everyone melt in a puddle of warm, wet love (so to speak). :-) I've got many posts logged here saying this ain't a place for people with any type of pain but ONLY for people affected by CHs. I think where I stand on this is pretty well known. And I have no problem telling people without clusters they don't have them. See? Feel like hugging me? LOL |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 9:22pm on 10/09/02 at 21:15:08, kim wrote:
WTF??? mix in a few more beers with your posts! ::) This isn't about me.... I'm not whining like you are! I am perfectly comfortable where I've been this past year. The shoes don't fit me..... they probably don't fit you.. but that doesn't seem to stop you from taking them from your ass and shoving them down your throat! ;D Slammy 8) |
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Title: Re: Where do we draw the line? Post by kim on Oct 9th, 2002, 9:29pm Slammy - what the FUCK are you trying to say to me? Quote and then reply with a witty dimwit answer? I won't even go there. U don't like my fucking post then fucking BEAT IT. Sure a guy like you could find some tit wit to exhcange your higher mental levels at ::) WTF? You have something to say to me personally? Then e-mail me ya sappy fuckin wimp. Ted - what can I say. Once a bitch always a bitch. No beer intented. >:( |
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Title: Re: Where do we draw the line? Post by DJ on Oct 9th, 2002, 9:35pm ok, so this WAS a really good thread..... |
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Title: Re: Where do we draw the line? Post by Not4Hire on Oct 9th, 2002, 9:38pm too bad this thread didn't stop at #82....... |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 9:41pm on 10/09/02 at 21:35:55, DJ wrote:
LMAO! Good point, DJ.......nice timing.. :D Slammy 8) |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 9th, 2002, 9:47pm True, that it's a clusterheadache site. The thing is, some come here and don't understand what they have. No need to tell them to "fuck off" right away. Give them....say three chances. Then warm up the tar. Charlie |
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Title: Re: Where do we draw the line? Post by Ted on Oct 9th, 2002, 9:52pm Exactly. I do do it nicely at first. But no sense not letting them know they don't have CHs either. |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 9th, 2002, 10:01pm Bingo, Ted! ;D This has been interesting.... it seems people are arguing against the things that they actually agree on... does that make sense? ::) Slammy 8) |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 9th, 2002, 10:07pm Sure does Slammy. Reinforcement time here......well for people who know better. Charlie |
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Title: Re: Where do we draw the line? Post by pjbgravely on Oct 9th, 2002, 10:08pm Wow, I just spent 45 minutes reading this thread and I have a little to add. I believe there a lot of non- Custers / non-supporters here but they don't seem to last long. They don't realize the extent of cluster pain. One wrote how they didn't think meds were worth the money or side effects. I realized a good come back to this. If a true clusterhead is in a cycle and it is found that cutting off one of their arms would stop the pain forever and they don't say how soon it can be done then they must not have CH. I know there are ppl who can tolerate higher pain than others but I believe the pain of clusters is as close to passing out as you can get at a Kip 10. I came here when my wife found this site after a er trip. I couldn't get enough Imitrex (OUCH helped me with that) and I had had enough. I found enough information to tell me that there was some hope and treatments that I found no where else. I also was in need of new friends. Everyone I knew has made no attempt to contact me after I told them what I have. Thank you all for all you have done. Thank you for putting up with my questions that seem to have no answers. Elaine, you have showed me allot in the past months, keep up the good work. DJ, If there is a fee for this site (good idea) just make sure it can be paid by money order (Sherry, I'll pay for you too) PFDAN PJB |
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Title: Re: Where do we draw the line? Post by DJ on Oct 9th, 2002, 10:18pm PJB, Let me be the first to say it wasn't me who brought up the mention about making this a "pay site". I still stand firm on what I wrote several years ago on my biography page... "This site has been as much as a blessing to ME, as it has been to you. I sit here and cry as much as you do, trust me! Clusterheadaches.com was built for totally selfish reasons. I just needed a forum to share stories with something that has dominated nearly half of my life. Luckily, and thankfully, others have benefited from my needs. That, in itself, is worth every single penny I've ever spent, or ever will spend, to keep this site operating." DJ |
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Title: Re: Where do we draw the line? Post by tracy on Oct 9th, 2002, 10:52pm God, haven't even read the whole thread but you all made me cry all over again just like that day in January,2000. Tracy |
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Title: Wherever we choose Post by den on Oct 9th, 2002, 11:50pm Our attitudes are the by products of our thoughts. It's all what I make it. I can wake up and love this web site just the way it is OR be disgusted with everything about it OR any attitude in between. That said....what's MY move? I figger I can: -answer any question that I have a useful answer to. Although with the large volume of folks here someone usually gives "my" answer before I get around to it. -When I'm inspired and see the opening for a laugh I take it. -greet a newcomer if I'm standin near the door. -roll out my "story" when it seems appropriate. -say hi to an old friend that pops in. -Scan, scroll, read, and walk away....takin what I need and leavin the rest. Guess I have a full time job figgerin my place in the sun. I'm not applying fer the job of drawin lions or tellin anybody that they don't belong anywhere. This ole world's chock full a folks better at that than I. As a Clusterhead it's nice to know that old CH.com is always here. walk in the sunshine den |
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Title: Re: Where do we draw the line? Post by Drk^Angel on Oct 10th, 2002, 12:12am Over a hundred posts, and the best one comes at the last (from my stand point, at least not considering this post). I do believe that is the most intelligent post on this thread den. Thank you making things a little less hazy, and a little more fresh. Given that I cannot do any better than that post, and the fact that the only one reading my posts seems to be playing a broken record instead of answering the questions I posed, I'm giving up on this thread. And I think if some gets their way, and get to boot the ones they don't think have clusters, or don't belong, I'd rather save them the trouble of boot me and leave willingly. C'est la vie... We should take a vote... Issue on the floor: Banning Drk^Angel because you don't think he's a clusterhead. Method of vote: Yea = for, Nay = oppose, Majority of the valid votes cast decides issue. Voting timeframe: Immediately until Friday, October 11, 2002, 12:00 PM noon Eastern Time. Drk^Angel |
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Title: Re: Where do we draw the line? Post by Jim R on Oct 10th, 2002, 5:54am OMG! What is going on here?! Does anyone really think someone who does not have CH's is going to spend any appreciable amount of time or participation in a site that repeatedly goes through the daily agonies, symptoms, therapies of CH's? Only if they don't have a life and if it's that sad for them, does anyone here really want to give them another kick in the crotch? They'll get bored and go away... I've been on this site almost from the beginning, first as a lurker, then as a participant. I've seen a lot here and I've seen a lot come and go. Mostly those that go don't have CH...so maybe this thread wasn't even necessary (interesting, but necessary?) Just my take on it after spending an hour reading it! - PFDANS to you all, Clusterheads or meegrainers... Jim R |
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Title: Re: Where do we draw the line? Post by LTBullitt on Oct 10th, 2002, 6:02am on 10/09/02 at 21:47:26, Charlie wrote:
True enough, and the god damned doctors out there don't help matters. I wonder if they just guess most of the time? |
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Title: Re: Where do we draw the line? Post by Ted on Oct 10th, 2002, 8:10am Drk, since there's no program out there that would prevent people not affected by clusters from coming and posting here it seems like you're asking us to vote on whether to overrule DJ's front page, where, again, it says "This site is devoted completely and exclusively to those that suffer from, and to the supporters of those who suffer from Cluster Headaches!" no matter your feelings on the subject, isn't it asking a bit much to try and vote him down? Or to think if the vote went in your favor he'd allow for a change in the purpose of this board? Jim, one of the reasons this subject does come up so much is because there are people that hang here and don't leave who have something other than clusters. And when they keep throwing their symptoms into the mix it can be confusing to a newbie who truly suffers but would think they must have something else because theirs only last 1-4 hours and not several times that, for example. |
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Title: Re: Where do we draw the line? Post by Margi on Oct 10th, 2002, 8:54am I'm home sick again today with this pissy cold. My patience level is in the negative zone as a result. Therefore I don't have the energy to pick through all the things that have ticked me off in this thread, so i'll just hit the things that REALLY made the hair on the back of my neck stand up. 1. Kim, I'm sorry you have clusters and I do believe that you do. But, check your 'tude at the door, girl - railing on Paco like that (especially on his BIRTHDAY!!) isn't going to win you any elections. In my foggy little pea brain this morning I seem to remember your exodus post a few months back, too. You went too far this time, Kim - you owe some apologies and you need to realize that you're pissing in your own sandbox here. You never know when you're actually going to need the support of this group and, Charlie's right - we may get bitchy but when we see genuine clusterpeeps in trouble we DO love bomb them. Don't deny yourself that right. 2. Drk^Angel (can you NOT spell "Dark"?) trust me - you do NOT want to put who the majority feels is a clusterhead and who isn't, to a vote. You WILL not like the results. And Friday isn't October 12th, it's the 11th. 3. Slammy - you did good. Real good. 4. Paco - please stay. We need you here. 5. Den - as always, wow. Everyone else who posted in favour of keeping ch.com JUST for clusterpeeps, awesome job. I doubt we'll ever succeed, and i will NEVER understand the psyche of cluster wannabes or cluster groupies. Why would ANYONE want to pretend they have this disease in their lives if they don't have to? ::) ok, i'm shutting up now. please direct all hate mail to moxie_miss@hotmail.com. i'll get back to you eventually. ah-CHOO! :( |
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Title: Re: Where do we draw the line? Post by catlind on Oct 10th, 2002, 9:25am So where do we draw the line? We've had alot of discussion, and even some arguing, but have we answered the question? Linda H - oops, sorry, it was Donna posted a survey awhile back...conclusion, those who come through the front door and read everything on the site receive the warmest of welcomes and are taken into the folds of the family. Here's the first link: http://www.clusterheadaches.com/cgi-in/yabb/YaBB.cgi?board=aug2002;action=display;num=1029680571;start= This is not a clinic NO ONE (Not even a Dr.) can diagnose you on the internet, if they try, RUN AWAY. Would I be excluded because I also have migraines? I don't discuss them on the board, I think I complained about them once when I got hit the morning after a night of hell with CH, but otherwise, I only mention that I have them as well as CH. I don't discuss the symptoms or pain or anything else about them on this site. There are many CH'ers here that have definitive diagnosis but are anomalies to the standard although they suffer the standard symptoms. There are dozens of posts about the beast being unpredictable beyond the location of pain and standard symptoms (tearing eye, stuffy/runny nose etc) Slammy, your post at the top of page 3....right on...ditto 100%, I cried like a baby, then was running around telling hubby I finally found people who know what I'm going through...I was overjoyed and overwhelmed with emotion. The pain issue has been discussed ad nauseum. It's subjective, I can type on a puter up to a 8...8.01 I'm gone. I don't believe there's a person exists that can type or read or sit still at a kip 10 sorry, there's just NFW MY CH's hurt more than natural childbirth, I've never had a sinus/tension/migraine or any other kind of head pain that hurt like a CH. Calling it a headache is a misnomer (sp) in my opinion...it's head pain in the extreme. When I first got here, I was told to read read read, and I already had, so I took no offence to being told to, and neither should any other newbie who's already read. I am still reading. This site has given me power and knowledge to actively work towards my own treatment. I've learned a great deal here to be able to help my doctor and myself discover treatments that will work. Narcotics suck and they don't abort CH's. I have a plan to get off them. (oops sorry...got off topic there) So, the original question, where do we draw the line? There are alot of new people here, we are not part of the old board, we are not part of the close relationships that were formed there, we newcomers have formed close relationships of our own. There isn't a clusterhead here I wouldn't bend over backwards for. The number of people that have done it for me is overwhelming. Yes I had a rough time for awhile adjusting to some bumps in my road of life, and learned the hard way and fast that this is not the place to look for support for anything outside of CH. (on public posts that is). So does anyone have an answer about where we draw the line? I know what the front page says, I agree with the DJ's 'mission statement'. CH'ers are unique, there is no other disorder like it. Who do we tell not to come here? I understand your point Elaine, there have been alot people here lately going off on alot of things other than CH, but while this is exclusively for CH's, it's one avenue to get people to OUCH and spread knowledge and information about this disorder so we can find a cure. I have told my Dr to come to OUCH, and check out the board, she doesn't have CH and she doesn't directly support CH, she's never seen an attack, but reading the posts on this board can help her better understand the daily impact on the lives of sufferers. Okay I'm done now :) Luv ya all Cat |
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Title: Re: Where do we draw the line? Post by dannyboy on Oct 10th, 2002, 9:39am It may be much easier to start by defining what is definately OUT. |
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Title: Re: Where do we draw the line? Post by Ueli on Oct 10th, 2002, 9:57am Ok I start the list of what is definitely OUT: #1 Dannyboy |
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Title: Re: Where do we draw the line? Post by Bob P on Oct 10th, 2002, 10:10am I'll volunterr to do the deciding. MY first decision: Women don't get clusters! (notice how I waited until most of you had voted at OUCH before I said that). That's my quota for today. I'll make another decision tomorrow. |
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Title: Re: Where do we draw the line? Post by dannyboy on Oct 10th, 2002, 11:11am If you get close enough to a Lion to feel how fuzzy it is, you're generally dead. But you have to be brave to try. Danny |
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Title: Re: Where do we draw the line? Post by Axis on Oct 10th, 2002, 11:43am Wow people, I'm new so I'll keep it short, If any of you saw my frist line of post you know that things are not on my side right now and the best thing that has happened to me in the last 12 months has been the brith of my grandson last month and finding this web site. Now this is just how I a newbie sees it ok, Every person that logs in to this site has the ablity to help in some way even if they dont know it, (ie) Talking to a friend of a friend that might have CHs or talking to a doctor that may want to come here to get info that might help him to help others, So when we flame or jump on some one just because they dont have CHs we may infact be cutting the very life line to someone that does, This is not to say that we should let just anyone hang around and talk about how much rain we got this year, But remember that getting the word out is the best way to help others like myself that suffered for 18 years with no one to turn too for help, And every time we flame or say things that hurts someone just because we feel they dont belong here we cut that life line a little more and may lose an angel that has a box of meds to pass out or a heart of gold. Ok I know I said it was going to be short hehe So sue me. Rod. |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 10th, 2002, 12:07pm Enough already!! This is a big problem here people want to fight instead of debate. I never said I wanted anyone gone I never pointed a finger. Nancyy answered my question right off come one come all. Your right the old timers had a close relationship, not because they were fewer of us, but because we took the time to get to know each other will really care about each other. The newbies here won't take the time to get to know us . You guys are fighting about BS. Paco is gone did a single one of you new people give a shit??????? Thats the difference between now and then. You people who are sending out the letter about a ch.com take over send it to DJ and see what he will tell ya ;-) if you got the guts!!!! End of this thread as far as I am concerned! |
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Title: Re: Where do we draw the line? Post by LTBullitt on Oct 10th, 2002, 12:18pm That dude who played Shaggy in the Scooby Doo movie sounded just like him. |
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Title: Re: Where do we draw the line? Post by catlind on Oct 10th, 2002, 12:21pm A ch.com takeover?! NOT FUCKING LIKELY I may be a newbie, but I'd be willing to bet that between jonny, don, den ted, paco, bobp, bobg, margi mastifflvr28 and the list goes on and on whoever even CONSIDERED the idea would get slammed so fucking fast and hard they wouldn't know what hit them. They'd wish for CH's.... I had better not hear a single word from ANYONE about taking over CH.com or I'll report you. Cat Sorry, that one got my dander up but good! |
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Title: Re: Where do we draw the line? Post by Lapsi_Harmaahapsi on Oct 10th, 2002, 12:35pm I'm asking for trouble here.. Sounds like we don't agree what CH is. Even doctors don't seem to agree on it. Sounds like some would like to separate the "true" and hardcore sufferers who have all the symptoms and get hit a lot from those that merely fullfill the "official" requirements. We could have a HC-board and a Weenie-board ;) But that would be kind of dumb. had to edit this here: I'd think there would be different "levels of severity" even in CH.A person can have CH even if he/she doesn't feel exactly like you do. |
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Title: Re: Where do we draw the line? Post by Bob P on Oct 10th, 2002, 12:49pm OK. You're forcing me to make 2 decisions in one day. I get the rest of the week off after this one. Those who want to "take over" (LOL, I love that) CH.com are meegrainers! It's one of the givens around here. If ya talk about smoking and CH, all the smokers get defensive. If ya talk about alcohol and CH, all the boozers get defensive. If ya talk about meegraines, all the meegrainers get defensive. If ya talk about ugly and dumb, hub gets defensive. |
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Title: Re: Where do we draw the line? Post by jonny on Oct 10th, 2002, 2:34pm I know I said I was done with this but I just had to post to LMMFYBO ;D @ Bob's last post, we talked a bit about that on the golf course.....LMMFAO ;D....I laugh cause its oh so TRUE!!!! ....................jonny ;D |
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Title: Re: Where do we draw the line? Post by Jim R on Oct 10th, 2002, 3:32pm Okay - my CH is worse than yours; my pain is higher than yours; a Clusterhead's pain is worse than a meegrainers; you don't have CH's - get out; you DO have CH's, you may come in - what a bunch of fucking BULLSHIT! It sounds like bratty kids on a fucking playground! Does anyone REALLY NEED THIS ON TOP OF PAIN???!!! Come on everyone - back to reality here - we need to get over ourselves. Remember, INTOLERANCE SUCKs - it's the cause of most of human strife and war - past, present and future. Flame me 'cause I don't give a shit...this is all degenerating.... Jim R |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 10th, 2002, 4:19pm Okay kids. Once again: People who don't have clusters or support someone belong here for about ten minutes unless they have the magic bullet. Take it easy though. I still say we bore the shit out of migrainers who do not have something to do with CH. Do any of them but the cranks or snake oil salesmen stay? I can't think of any. Charlie |
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Title: Re: Where do we draw the line? Post by echo on Oct 10th, 2002, 4:27pm Good God can we just draw the fucking line and move on? This bird is cooked -- let's eat. |
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Title: Re: Where do we draw the line? Post by J. Marshall on Oct 10th, 2002, 4:32pm How else do we get the message out about Cluster's, if people that don't suffer or support cluster's, are not allowed on the board. I know I've talked this board up to anyone that would listen, my doctor, wife, and anybody else I could find, so if anything they could understand the affliction in a small way. I just hope they don't read this thread :-/ |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 10th, 2002, 4:34pm BoobP...... LMMFYBO!!!!!!!!!!!!!!!! ;D That's twice on this thread you have been funnier than shit! :D Jonny takes back all the things he said about your humor.. ;) I checked in the mirror this morning and.... no blood... :D Margi...... I love you! hope you feel better! Cat.......... You're still a dolt! luv ya too! ;) Kim....... Thanks for the PM, I'll respond in a bit.... Love ya, Sis! :-* Elaine.... Thank you soo much for the e-mail.... you are a special woman.... and I'm going to try and steal you from jonny! ;) Ted.... Sharp as usual, dude! :) Dark Angel..... Sorry dude, ya backing the wrong horse.. ;D Paco..... don't leave bro! we all lose if you do! please stay... ??? Good debate people.... except for a few that took it way too personal.... there were some good points...but think about this...... if you are not getting or giving help on here.... why would you stay? why would you want to stay? I can think of a ton of places that have more stimulating topics.... ;D I'm here... and I'm staying because this place literally saved my sanity, probably my life... definitely the quality of it... If i can give just 10% of what I got from it.... I'll be a happy man....the rest of you can STFU!!!!! ;D Slammy 8) |
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Title: Re: Where do we draw the line? Post by Jim R on Oct 10th, 2002, 4:45pm on 10/10/02 at 16:34:56, Slammy wrote:
YUP! Ditto, Slam man - Jim R |
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Title: Re: Where do we draw the line? Post by DougL on Oct 10th, 2002, 4:54pm Yes the line should be drawn here and enforced here. When I first found ch.com my search for answers was almost as difficult as a ch attack. In fact I think it triggered a few. The first thing that drew me here was reading the first page and discovering that I would no longer have to weed threw all the migraine crap. Just to find one or may be two post re clusters. Now thanks to ch.com I know the info that I found on the “migraine” boards were mostly WRONG!!!!! I do not want to have the wonderful resources on this site to become tainted. So if you do not have clusters or support a clusterhead please remove the door knob from your ass on the way out. DougL PS- This year for the first time ever since being diagnosed with clusters 14yrs ago. I now get migraines. Infact I’m typing this now while being hit with a Migraine level 6. Sorry to say I could not do the same on a Cluster Kip level 6. |
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Title: Re: Where do we draw the line? Post by kim on Oct 10th, 2002, 5:20pm Been lookin at this thread like it was the devil for some time now.......... ::) BobP- LOLOL, and then ROFLMAO. Jim R: U said it! drk: you hang in there, understanding don't always come easy. Believe me I KNOW ;D Slammy: thank you. I'm so sorry for bein such a bitch. TED: i find that I cannot despise you even though you are a democrat. :D jonny: we could always have a hair pulling contest ??? margi: you should a known! I mean, really, I already farted in the parlor, just makes sense I'd leak in the sandpit.... ;) it's hard bein a grown up............. :P Plus, you and me - we don't always see eye to eye. That's ok with me. I ain't out to get votes.... Paco: Happy Birthday. I will apoligize as soon as you tell me what AMF means... I hope you and I can share many more meaningful discusions in the future. :D You know: you tell me to fuck off and then I tell YOU to fuck off ;D DJ: sorry if i backfired again. It must be genetic. Grandma always said it's only "Breakin Wind" - LOL NOW PLAY NICE DAMMIT! |
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Title: Re: Where do we draw the line? Post by jonny on Oct 10th, 2002, 6:22pm Dear Kim, You continue to refer to your "gas/fart" problems For your information a fart is a turd honking for the right of way. Your body is trying to tell you something that we all know........you are full of shit!!! Last person to pull my hair left the hospital 2 week later ;D ..................................jonny |
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Title: Re: Where do we draw the line? Post by kim on Oct 10th, 2002, 6:32pm i missed your point? how am i full of shit? Please elaborate. Or are ya not able too think that far ahead of the possibility of losing hair? STFU. Farting reminds me i'm alive and living in this world. You my (not) friend got less on the scale to weigh. Ya wanna be mean? Fine. I'll kick yur MOFO Ass lil boy |
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Title: Re: Where do we draw the line? Post by Lori on Oct 10th, 2002, 6:37pm ok...I've managed to read pgs 1-3 of this thread so far..but I'm too tired tonight to finish the rest. So, i'll go ahead and add my 2 cents anyway. Someone way back on page 1 or 2 said the following,,, "Perhaps the requirements to learn from this site should be a little more stringent and DJ should require a note from your doctor showing legitimate diagnoses. Then and only then would you be assigned a username and pw." I really hope this doesn't happen and here's why. I found this site before being officially diagnosed with ch. It was because of this site though that I was able to find out I needed to see a neuro to get help and I was able to read tons of info so I could go armed to my first appt with info on meds that would help. At least I wasn't going to have another doc not help me! For years I was thrown all kinds of meds that never helped and I finally knew why. I wasn't being treated for CH! At least this time I knew the meds most often used to try. I only knew I might have ch because I had looked at any info I could find on the internet 5 yrs ago and I matched exactly with having clusters. BUT, the info said it was mostly in men..so I thought maybe that wasn't what I had. It wasn't until finding this site did I realize many women also suffer from it. So, this site is a tremendous help!! I guess when newbies come here all we can do is direct them to take the quiz and read, read, read before posting. Anyone who is truly a cher knows it from the symtoms. We may deal with the pain differently but the way they occur as far as starting, duration, increase in pain intensity, to the way a cycle ends is very obvious. Yes, we can recommend they seek a diagnosis and I think anyone who suffers greatly would want to seek that out anyway. If we feel that they are not a cher..then I guess we can direct them to a site that can help them. If they really want help, they will get it. If they just want to invade this group to waste our time and don't really want help, well,,I guess if they are not replied to they will eventually get the point. I don't know, but I guess anytime you have message boards or chat online you will get some that just want to cause trouble or waste time because they have nothing better to do. I hope this fits in with what you are trying to accomplish Elaine. Like I said I haven't finished reading pages 4-6 yet. :) I started a new 3rd shift job a couple weeks ago..trying to adjust to little sleep and new hrs. You all take care! |
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Title: Re: Where do we draw the line? Post by Ree on Oct 10th, 2002, 6:53pm ok where did my post go.... |
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Title: Re: Where do we draw the line? Post by jonny on Oct 10th, 2002, 6:54pm Why is it that in the past few days women have told me im mean? Kim, you joke about farting......Right? I joked back, did you not see the smiley face? Man!!!!, women, cant killem without going to jail ;D ................................KING JONNY!!!! |
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Title: Re: Where do we draw the line? Post by kim on Oct 10th, 2002, 7:01pm No didn't catch that smiley :P good thing. I was just filing my toe nails to assist in the "hair cut" LOL Shit. Did i just fart again? ;D Sorry :-* Sux bein me sumtimes ??? |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 10th, 2002, 7:06pm Hi lori, Quote:
There was a little sarcasm in that statement. I think this thread has taken on 2 or 3 meanings since it's inception. |
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Title: Re: Where do we draw the line? Post by jonny on Oct 10th, 2002, 7:16pm Just as long as everyone knows that quote was not DJ's just as the mention of this becoming a pay site was not his. ..............................jonny |
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Title: Re: Where do we draw the line? Post by curtisdsc on Oct 10th, 2002, 7:24pm That is correct Jonny I made the quote trying to get across my interpretation of this thread in the beginning. Just wanted to let Lori know it was loaded with a little sarcasm. Curtis |
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Title: Re: Where do we draw the line? Post by cox3406 on Oct 10th, 2002, 7:31pm I bet none of ya got a HA right now....whew :) or maybe your gettin one! |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 10th, 2002, 7:58pm And the winner of the thread is........ http://www.headachesupportgroups.com/echat43/shrug.gif Not Charlie |
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Title: Re: Where do we draw the line? Post by catlind on Oct 10th, 2002, 8:54pm Wonder if it would be fun to have a new category called Cluster Family Feud and we can hire Dan Akroyd to moderate it ;) LOL Ok Ok, I know this is a serious thread, or at least it started out as one, and a good one at that. It's just that Charlie always cracks me up with his funnies. :) Cat |
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Title: Re: Where do we draw the line? Post by kim on Oct 10th, 2002, 9:07pm There goes any pretense that I had at keepin a sstrate face = LOLOL Cat :D |
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Title: Re: Where do we draw the line? Post by pjbgravely on Oct 10th, 2002, 9:43pm DJ, Sorry my post sounded like it was your idea to make it a pay site. I guess my thinking was skewed last night. I now realize this must be a free site or it will become useless. DJ, I want to personally and publicly thank you for providing this excellent forum for us CHers to talk, vent and support. PJB |
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Title: Re: Where do we draw the line? Post by forgetfulnot on Oct 11th, 2002, 12:24am I'm a little dizzy after reading all this, but my answer to the original question is you can't. :o Lee |
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Title: Re: Where do we draw the line? Post by BobG on Oct 11th, 2002, 3:46am I ain't got nothing to say. Just wanted to make this the 150th non-answer. Sure hope this crap stops soon. |
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Title: Re: Where do we draw the line? Post by oringkid on Oct 11th, 2002, 11:16am Yes it is crap. And I am one of the ones that made it crappy, and I would like to apologize. Sherry |
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Title: Re: Where do we draw the line? Post by don on Oct 11th, 2002, 11:28am Quote:
This is how............... http://www.clusterheadaches.org/ |
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Title: Re: Where do we draw the line? Post by Slammy on Oct 11th, 2002, 11:47am Quote:
NO!!!! Whatever do you mean, DJ? ;D ROTFLMMFYBO! ;D Slammy 8) |
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Title: Re: Where do we draw the line? Post by Elaine on Oct 11th, 2002, 12:47pm Some of you managed to turn a debate into Bullshit as always. I am not about to say I am sorry for how I feel. I am just sorry some of you can't interpet a post and don't know how to stick to the original topic. It sure would be nice to post stuff without people putting things in that wasn't said. I never asked a single person to leave never pointed a finger at one person as some of you have. People jumped in and said I have clusters yayaya..I never said you didn't. If I don't think you have clusters I would tell ya if you ask me. That is one thing about me that some of you don't know. I will tell you just what I think to your face. I am not a fence sitter. I see a issue I stand up for what I believe. It might not always be right but its who I am. Don't try to make me mad try to change my mind. In school they taught us to debate not fight. I don't back down and when backed in a corner I will bite. Now if you have something to say to me fine say it. If you want to be adult about it, but say it to my face. Do me a big favor don't put your little puns in your emails to me or in chat. Be man or woman enough to say what ya think. my email address is elaine @headachesupportgroups. I morn the fact that two very good people deleted their post and their profiles from ch.com yesterday. Most of you would not know them they were old timers. For the person in chat that wanted to know what a Paco was I am going to tell you . Paco is a hell of a man with a heart as big as this world. With pain that is so deep only a few of us know, I am not only talking about cluters but about other things. He is a man that would stand up for right and would walk through fire to get to any one of us. That is what a paco is. One of you is right you don't know the history you never took the time. I am not here for a pupularity contest I am here as a clusterhead so really what you think of me is not important. It don't change what I believe. |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 11th, 2002, 6:17pm Hard to disagree with Elaine and I miss Paco too. I was pretty much a jerk when he was here but it would have been nice if newbies had a chance to know him. Charlie |
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Title: Re: Where do we draw the line? Post by jonny on Oct 11th, 2002, 8:21pm Shut up, Charlie Youve never been a jerk on this board. I know ..............................jonny |
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Title: Re: Where do we draw the line? Post by Mark C on Oct 11th, 2002, 9:39pm Uh.........never mind. I think I missed something. :( |
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Title: Re: Where do we draw the line? Post by kim on Oct 12th, 2002, 7:13am Pin head here. Slowly (as usual) i have come to the realization that my contributions to this thread were motivated by my own selfish and self centered deep seeded feelings and were way off the mark. It sux when ya can't put aside your own SHIT and see clearly what is right in front of your face and that is what i am guilty of here. Please accept my apologies everyone. Too damn stubborn for my own good - yup Margi you were right. Elaine, I really pooped on that one. You know E, I came here cuz I had trouble dealing with the clusters. But you have helped me with more than that (you and lots of others). You have also been one of the few people who can get me to admit I'm a REAL IDIOT at times. Barkin my brains out but doin it at the wrong tree. I really HATE when that happens. As Jim Carey said : I'M KICKIN MY OWN ASS! PACO: You know how much you are needed. Hope you come back. Answer to the ORIGINAL question (light bulb finally goes on... :-[): I don't know. :D The jerk - (snappin and tappin ova here)........I'll get it right one day DAMMIT |
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Title: Re: Where do we draw the line? Post by Margi on Oct 12th, 2002, 4:36pm hey, cool post Kim. Ya done good, kid. ;) |
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Title: Re: Where do we draw the line? Post by Linda T on Oct 12th, 2002, 5:24pm As usual, I join this thread a day late and a dollar short! This goes out to Paco and den: Paco: Back in January I was going through a really rough time not knowing that the worse was to come Feb-April. I read one of your posts. "Get over yourself." This post was not directed at me but it might as well have been. I took it personally. I thought about that phrase day and nite. It took me awhile, but the lightbulb did finally go on. At first I was angry with you. How dare you say that! I came to the conclusion that you were right. I tried really hard to get over my self and to some degree I succeeded. I don't think that I would have had it not been for you. den: I printed your e-mail to me and it is hangin on my refrigerator even as I type this. NO ONE, and I mean NO ONE, has ever said such nice things to me or put me in that category. I don't even see myself the way you do. But it was overwhelming to read that someone had such a high opinion of me. That did alot to not only boost the ego a few notches but also helped me get through the living hell my life was in. I doubt either one of you ever thinks of me, but perhaps now and then you do. I think of each of you every day. You both saved my life. I do not say that as a figure of speech. I mean literally. I was close to the end back then. I feel like I lost my best friends. I don't know what your reasons were for leaving the board and that's your business. I can't repay you both for your kindness and your support. But I can support you both if you need it. You know where to get me. Thanks are just not enough. I wish you all PFDAN always, Linda T. PS - yes, this board is for clusterheads. Let's keep it that way. |
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Title: Re: Where do we draw the line? Post by Charlie on Oct 12th, 2002, 6:44pm In this thread of more than THREE THOUSAND hits, there are several strands that I didn't really get anyway. Hope you're feeling better and I look forward to adding to my Kim Dictionary. Charlie |
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Title: Re: Where do we draw the line? Post by Ree on Oct 12th, 2002, 10:13pm ok but you definately get alot of attention when you post something Lanie... its not your fault when a thread gets outa control... we love ya woman... youve got the power... (oh i forgot i promised to punctuate and capitolize didnt i well im too damn tired sorry)reebananaorangebod WHO IS THE BEST LITTLE THREAD ENDER AND WHY AM I? ever notice 70% of the time no one posts after me? I'm gettin a complex!!!!! but I still love ya... |
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