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        New Message Board Archives >> 2002 Posts >> Please....need some answers here
        
(Message started by: Donna on Aug 18^th, 2002, 9:22am)

Title: Please....need some answers here
Post by Donna on Aug 18^th, 2002, 9:22am

to clear up a little contraversy..............

When you came here for the very first time, did you read the first few pages or did you skip around until you found the message board?

Title: Re: Please....need some answers here
Post by Melissa on Aug 18^th, 2002, 9:43am

When I first put in a search for "cluster headache" into the search engine, one of the first results I found were posts from the message board. So I followed the link, and found the message board 1st, before finding all of the other pages on this website.

Because I was so flabbergasted at finding all these people who suffered like me, it took quite some time before I meandered to other parts of ch.com. So during my first visit here, I was reading posts...

Does that make any sense? ::)

Mel :)

Edited to add: I'm not sure what in the hell it was I typed into the search engine. Could have been clusters, or cluster I don't know. But I do remember seeing the posts in the search engine results. ;D

Title: Re: Please....need some answers here
Post by Donna on Aug 18^th, 2002, 9:46am

Why sure it does, Mel. It makes a lot of sense. Thanks for answering.

Title: Re: Please....need some answers here
Post by catlind on Aug 18^th, 2002, 10:59am

Donna,

I did a search and found the site, but can't remember what part of it I found. I know when I got here I started out with the new visitors and followed all the instructions for first time folks and read all the links and took the quiz and familiarized myself with everything on the left and then read and watched a few posts before posting myself.

Hope that helps :)

Title: Re: Please....need some answers here
Post by pjbgravely on Aug 18^th, 2002, 11:03am

I read the introduction part and took the headache quiz, Then I read many of the threads and found some answers to my questions. Then I checked out the ouch site which answered more questions. I was trying some of the home remidies and using Imitrex when I finally posted in desperation at the leanth of my headaches. I fit most of the cluster traits except my CH's last 6 hours. In the end I recieved lots of support and made a few friends and was generally help. My CH's have shortened to 2 hours. sorry I think I just answered 2 threads with one post.

Title: Re: Please....need some answers here
Post by Donna on Aug 18^th, 2002, 4:11pm

Any more?

Title: Re: Please....need some answers here
Post by BobG on Aug 18^th, 2002, 7:18pm

I found this site on May 5, 1998.

I think I must have read the message board first because I left my first message that day.

My next entry was at the message board a few days later. I'm only guessing here but those few days were probably spent reading the entire board.

Title: Re: Please....need some answers here
Post by Slammy on Aug 18^th, 2002, 7:35pm

I found this site in March of 99. I think the message board was the last place I hit. I focused mostly on all the info on ch.

Slammy 8)

Title: Re: Please....need some answers here
Post by NancyMcFree on Aug 18^th, 2002, 8:09pm

When I first found the site not long ago I found it by doing a search on "cluster headaches" and found this site at the top of the pick list along with the OUCH home page. When I came in to the site the first time I ended up on the home page and went through each and every option .... read lots of the posts ... and after stopping back at this site about 15 times finally registered so that I could post.

Title: Re: Please....need some answers here
Post by Drk^Angel on Aug 18^th, 2002, 8:51pm

I found this site after I got tired of search engine results saying the same things over and over again, so I typed clusterheadache.com in the address bar, and I couldn't get into there, so I typed clusterheadaches.com. I read every page on the site I could, and when I ran out, I came to the message board, and read posts for 2 days before posting.

PFDAN......................... Drk^Angel

Title: Re: Please....need some answers here
Post by Ueli on Aug 18^th, 2002, 9:34pm

January 1999 I did a search on clusterheadaches on Altavista (yes, you youngsters, that used to be a renowned search engine). The top hit didn't bring much, the 2nd was CH.com and I never looked at the other ones ;D. I read all the info, read the 10 month of previous messages, signed the guest book and posted for the first time after 2 weeks.
Oh yeah, when I first connected to the web, the provider provided me with a link to Netiquette, something everybody should read.
Donna, I know why you are asking this question.
But I don't like if a new visitor to my parlor starts with a big fart. So if someone asks the same question as 10 lines below (using to be in a hurry as an excuse), I can't let that pass.

PFNAD's
Ueli

Title: Re: Please....need some answers here
Post by BobG on Aug 18^th, 2002, 9:56pm

;D
Ueli
"But I don't like if a new visitor to my parlor starts with a big fart. "
:D
That was great! Mind if I save that to my list of quotes? It's one of the best yet.

PS........Iagree with it.

Title: Re: Please....need some answers here
Post by Marc on Aug 18^th, 2002, 11:06pm

Donna,

Since you asked....

I found this site 11/00 - posted in the Guest Book - very emotional experience for me. Spent a whole bunch of time following links and reading posts - got several really nice "welcome aboard" emails, some from folks who don't post here anymore. Traded emails and some phone calls with other members.

I finally started posting after reading, reading and reading. I know I'm strange - my approach made sense to me at the time.

But this board was different then........

Title: Re: Please....need some answers here
Post by debbie4278 on Aug 18^th, 2002, 11:20pm

I found CH.com last month.
Ditto what Cat said. I followed the directions, then ended up here.
Glad to know all of you.
Deb

Title: Re: Please....need some answers here
Post by Charlie on Aug 19^th, 2002, 6:36am

I had my puter just about a month in late August 2000 and surfed into CH.com I think, but immediately found the guest book just like Mark. I sobbed. What stories, I had no idea there were so many. I posted an early version of Dr. Wright's technique in September.

Charlie

Title: Re: Please....need some answers here
Post by kim on Aug 19^th, 2002, 7:02am

Found you guys back in February during the onset of a cycle. I typed in www.clusterheadaches.com thinking I would get some medical info. What I discovered blew me away. I followed the guidlines set forth, i think i e-mailed doc greg with some med questions, and looked through the "buttons to the left" ;D I screamed for my husband to "come and look at THIS!" I had the goosebumps and was crying (I could hardly talk if ya can magine that ;D.......) Rather quickly I decided to join OUCH but at the time was POOR...I took the tests, and answered surveys and requested a sponsor for OUCH membership.
Read some of the posts, but must admit I posted rather quickly. If that means I'm a farter, Ueli, my apologies..... :-X :D

Hope that helps ya out.

Title: Re: Please....need some answers here
Post by oringkid on Aug 19^th, 2002, 7:35am

I think at the time I just typed in clusterheadaches in the address bar and got the first page. Went through new visitors, signed the guest book. Checked out the Kip scale, took the quiz. Eventually found the message board. This was back in June 2000.

I was absolutely amazed...still am!

Sherry

Title: Re: Please....need some answers here
Post by gtarman on Aug 19^th, 2002, 3:05pm

I originally typed in "www.clusterheadaches.com" about June of last year when my second cycle kicked into high gear and found it pretty quick; however, what I read scared the crap out of me (esp that tiny but horrible word "chronic") and I didn't return for awhile, till I got out of denial...Still have a hard time accepting what has happened to me...to all of us.

Title: Re: Please....need some answers here
Post by Marijke on Aug 19^th, 2002, 3:14pm

Hi Donna,

I found this site oct 2, 2001. I was heaving these extraordinary heavy headaches, that woke me up from a very sound sleep. After stuffing up with paracetamol for a week without improvement, I saw my GP. Who told me I could be suffering from Horton Migraine, but he needed to run some tests to rule out other options.
On the internet I found that Horton migraines were the same as cluster headaches. Throwing that into Google, this site came up. First thing I did was taking the cluster quiz. Boy, did some of that sound familiar!. I started looking at the rest of the info when I got my official diagnosis from a neuro 6 days later. Then I started reading the board.

Title: Re: Please....need some answers here
Post by DougL on Aug 19^th, 2002, 4:15pm

Nope! Did not read the First few pages.
Just the few storys from people.
The newbie page did not exsist.
I read the guest book and did not return untill months later when DJ sent me an email reintroducing the sight to me.
Been hooked eversince.
DougL

Title: Re: Please....need some answers here
Post by firebrix on Aug 19^th, 2002, 4:48pm

My husband had suffered from diagnosed CH for three years when i bought this computer. We could find little info in libraries and the input was all dated.

I did Google search on CH, found About.com and was linked straight to Clusterheadaches.com and Ouch. i couldn't believe what I'd found!! From then on I was just like Charlie! ( Hi Chas!)

Because my husband is a very private person, it was difficult to introduce ourselves. I lurked for a while, then started posting after I thought I'd read everything. There was lots more to read as I soon found out. Altho' the site is excellent, newbies to putas, such as i, still have trouble finding everything the remarkable people here have posted. We learn, if slowly, and the flames help. Anyway, ya can't flame a fire brick!
firebrix

Title: Re: Please....need some answers here
Post by markdavid on Aug 19^th, 2002, 7:54pm

I think the last thing I did was join the mb . I first read med. info amd medications then took quiz , knowing I have clusters but found it to be a good test. then went through the rest of the site dint remember what order but I can say message board last. I have never been part of a message board before, can ya tell???. but after reading some posts , I thought I have finally found people with the same fucked up prob. that I have, and if there is a message board i could relate to it would be this one. My brother does the boards on the web , I have never felt the need to, this is my first and so far it has been an experiance.
mark david

Title: Re: Please....need some answers here
Post by Ann on Aug 19^th, 2002, 8:08pm

Hi Donna!

I did the exact same thing a Cat...almost to the letter. I never posted in the guest book and it took quite some time for me to post..that was on the old message board. I joined OUCH not too long after that..bought a t-shirt and some cups! I haven't looked back since.

hugs
Ann

Title: Re: Please....need some answers here
Post by Donna on Aug 19^th, 2002, 8:19pm

Well, that 2nd page of the site explaines the best order of doing things for new visitors, and the proof of good results is right here in this thread.

Agree?

Title: Re: Please....need some answers here
Post by dannyboy on Aug 20^th, 2002, 10:18am

Believe me, no-one touches me in Fart Stakes as far as first posts go

But what is meant by ... My Parlour?

Where is Ownership of this 'Parlour' ascribed to a particular clusterhead or group of clusterheads depending on his/her/their -
- position in OUCH,
- length of time that they've been here,
- or how much they know about Clusters?

So for example ... How do newbies that are either-
- over emotional when they find ch.com,
- or in a bad mood,
- or unaware of Nettiquette etc etc,
continue to allow other 'Owners' to fart, shit, piss, throw up etc in Their Parlour....?

Because Its Their Parlour as much as it is Yours.

In Fact ... I'd say This Parlour belongs more to a newbie than an old timer.

Intergrating a difficult newbie into the community must be one of the greatest things any of us can accomplish.

Helping one leave Their Own Parlour for ... unthinkable

But yes Donna, if I could do it all again ... you betcha ... I'd read the whole thing first!! Good Point
Danny

Title: Re: Please....need some answers here
Post by NancyMcFree on Aug 20^th, 2002, 10:34am

Danny's post for some reason got to me. I have felt since I joined that I may have "farted" on someone so the saying goes. I did read, and re-read all the posts for two weeks before posting ..... and yet, when I begged for help that first time I only got four responses. I was a newbie and said so .... I am not sure that I did anything wrong, or if I just got lost in the shuffle. I know I appreciated every response I got ... even if it was just to say hi and not answer any of my questions. I know for sure that I was uncomfortable with posting the first time. I hung in there because I did see some of the posts looked like you had a lot of people that cared. And I am glad I did. Since then, contacting people directly .... whether it be via the chat room (when I asked for help Melissa came to the rescue) or just emailing responses back to the person you thought might be able to help (Bob G) I got what I needed. When the clusterbuds memo came out from NancyC she was more than willing to step up to the plate herself and be my bud. This board offers to those that won't give up something that you can't get anywhere else. True understanding. Thanks to those who made me feel more than welcome !!!!!! And for all of those that I have not yet met .... looking forward to it !!!!!!

Title: Re: Please....need some answers here
Post by kim on Aug 20^th, 2002, 10:44am

Anyone read the latest events to unfold in Argentina? Well, they are starving. When normal everyday folks decended upon those cows, ya gotta face some hard facts about being a human being on this earth...Perhaps afterwards they felt humiliated, and ashamed of their vulnerability. Perhaps they were astonished at the degree to which they could "sink".....Human nature will prevail. Parlor? I don't know about that Donna. I respect your opinion and shudder to think I "FARTED" on anyone. Tell ya what, next starving person I see, I give a steak and ask questions later. It's not a threat. It's not some sort of attack. It's called "Trauma". does weird stuff to folks. :)
When all is said and done, the reading assignments get completed. With full appreciation. :)

Title: Re: Please....need some answers here
Post by Ueli on Aug 20^th, 2002, 2:48pm

NancyMcFree, let me introduce Dannyboy.

First, he does not suffer from cluster headaches, nor is he a supporter of a clusterhead, he has never met one.

So why does he pester this message board with his immature, callow posts? Simply, he is the "Director of Business Development" of his fathers headache clinic. His dad, Dr Elliot Shevel, uses surgery to cure migraines, but in his own testimonial (see here (http://www.clusterheadaches.com/wwwboard/messages/74878.html)) the procedure has never been used for clusterheadaches. But Dannyboy, in the tested ways of a snake oil salesman, chooses to make no distinction between the different headaches. For him clusters, tension headaches, TMJ, trigeminal neuralgia are all the same as migraines, and therefore potential customers for his business. For this reason, most of his post are aimed to muddle the issue; his "all head pain unite!" movement is a real pain in the ass. An indication of his immense medical knowledge is, that for him the words 'artery' and 'vein' were interchangeable for a long time. In the meantime he has learned some medical buzzwords that he intersperses into his usual gibberish, hoping to appear more knowledgeable. A further proof of his shoddy methods: On his web site he has the 'testimonial' of a former 'cluster headache sufferer'. But the snag is: anybody with a tiny bit more medical knowledge than Dannyboy is aware of the fact that if it can be cured by a bite plate, then the headaches were probably caused by TMJ, not clusters. He even claims that this (TMJ) cure was part of a study performed "for the international community of cluster headache sufferers". I have asked Dannyboy before to hook us up with this organization so we could join forces with them; sadly he hasn't answered this question yet.

How dimwitted this boy is, is shown by the fact that he doesn't recognize a metaphor when it hits his ass. In a previous post I was talking of my own private parlor, the one I pay rent for to the bank. But the same way I expect a minimum of civility from a visitor to my home, I expect the same from a newbie to this board. I don't like people who don't give the slightest hint about themselves, but blurt out with lots of personal questions. And I consider as downright rude someone who asks a question, that shows that she/he did not even skim the titles of the other threads on the page.

Danny has contributed a few $$ to OUCH, he sometimes makes a feeble attempt of humor, but when he starts on a medical topic his true aims always shimmer through.

It was once said that Dannyboy must be a masochist. It looks like he loves the bashing he gets here from time to time. Even his sparrow brain should have grasped by now that he cannot get a business deal from the people on this board.

PFNADs
Ueli

Title: Re: Please....need some answers here
Post by NancyMcFree on Aug 20^th, 2002, 3:10pm

Geez, now I feel even more welcome being the total not a very nice person that I am believing what I read. Alas, I need this board; Iwill take people at their word, and when someones messages touches me regardless of what they suffer from I will cry. Call me naive; I think everyone has a heart. PFDAN's to you my friend.

Title: Re: Please....need some answers here
Post by Slammy on Aug 20^th, 2002, 3:15pm

Anyone that begins a sentence with "Alas!....." is OK in my book! ;D

Slammy 8)

Title: Re: Please....need some answers here
Post by SFChris on Aug 20^th, 2002, 3:46pm

I found this site around in January of this year. I read/lurked here for a bit, but never posted. I think I read the whole MB before my first post. Only after the site was completely overhauled (maybe March?) did I start posting here. It is scary to post your first message. But a nice lady named Margi answered my post right away, and made me feel welcome.

Title: Re: Please....need some answers here
Post by NancyMcFree on Aug 20^th, 2002, 4:35pm

Thanks Slammy. I am staying cause I dont thing these clusterfu**s are going anywhere. Alas, life is what it is. PFDAN to you my friend. :)

Title: Re: Please....need some answers here
Post by Donna on Aug 20^th, 2002, 5:53pm

Kim, you are another one of those gifted writers. I envy your talent, just as I do den's, but sometimes you guys go over my head and I just plain don't get the message.

I prefer to discuss and debate with a touch of humor, so please don't think me sarcastic...but what the heck did you mean about the parlor thing? (End of message aimed at Kim).

I wish I could take credit for that now famous phrase about farting in someones parlor, but it belongs to another..and Dannyboy is nit-picking again so I pay no attention to his remarks.

Those of us who have been here long enough to feel comfortable do call this "home"........it is our parlor. For some, this comfortable feeling takes a long time to acquire. For others, it's a piece of cake.

I don't advocate rushing newbies...nor do I advocate insulting them or ignoring them. Some of us are lions and some lambs. Some are variants.......like me......a chickenlamb.

This is a large community and we have to expect all types of behavior.......but we do not have to put up with a stranger insulting us, or snake oil salespeople.

I made a point of the "front door" issue because it appears that most of those who took the suggested
steps of entry made an easier transition.

Title: Re: Please....need some answers here
Post by kim on Aug 20^th, 2002, 7:32pm

chickenlamb........I LIKE IT :D I'm more a cross between a goat and a puppy - a billypuppy ???

Clusterheadaches.com. Every one here knows exactly what that means. Some are lions and some are lambs, some seem to glide in effortlessly while others trip over themselves in their well meaning frenzy. My comments regarding the parlor asks patience for those that are not at first steady as she goes. That's all. :) Sure hope that clears things up for ya.

Title: Re: Please....need some answers here
Post by dannyboy on Aug 21^st, 2002, 6:49am

Ueli, I'm starting to get the feeling that I piss you off

Thanks for organising all the links to the shroom posts

My researcher would like to express her gratitude too

Think How much money I'll make out of all your hard work!!

Damn I want that yaught!!!

Title: Re: Please....need some answers here
Post by Mistory on Aug 21^st, 2002, 7:27am

When I first came to this site, it was to investigate the most terrifying pain I had ever encountered. After several years of migraines, I was suddenly being pounded with agonizing bursts of pain that recurred every few seconds- for six days and nights. I was waiting for test results, but in the meantime I was terrifed.
I read what I could, but I couldn't bear to sit still and look at the screen for more than a few minutes at a time...so yes, I confess, I took shortcuts and asked questions that I probably could have found on my own.
Several people suggested links, which I followed as soon as I was able, and found my answers.
Now I understand that I farted in your parlor; sorry. I was under a bit of duress.
I'll slink off to my corner now, properly chastised, and take some Gas-X.

Title: Re: Please....need some answers here
Post by Donna on Aug 21^st, 2002, 7:59am

Please don't get the two mixed up......not reading everything first is not the same issue as someone coming in and being insulting.

Title: Re: Please....need some answers here
Post by debbie4278 on Aug 21^st, 2002, 10:30am

I think the GAS X thing sounds good.
Maybe even some EX-LAX for some of us. And you know who you are.
I'm just happy as a fart to be out here with y'all!!! ;D ;D ;D ;D ;D ;D
Deb

Title: Re: Please....need some answers here
Post by Darleen on Aug 21^st, 2002, 11:41am

Hey Donna,

You really know how to get things started....

Can't really remember when I came here but I know it was when John was being hit really bad and we both needed some help. I read through the intro and all the medical info. John did the test and then I think I finally posted and eventually went into chat. I was very well received by all and found everybody extremely helpful.

I do now consider this my home even if I don't post all that often.

Lots of love,
Darleen :)

Title: Re: Please....need some answers here
Post by kim on Aug 21^st, 2002, 8:18pm

Seems there are variables as well to be found right here in this thread. Look hard, you'll find them. Although I understand the meaning behind this thread, I feel it is a paradox and will continue to be a paradox for miles to come. (just look in the archives :D)

The only given is RIGHT HERE. This is really THE BEGINNING. And for that, I AM GRATEFUL.

Peace,
Kim