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Topic: What leads people to CH.com? (Read 1050 times) |
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athos
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What leads people to CH.com?
« on: Feb 6th, 2004, 5:51pm » |
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There have been what seems a rather large inlfux of new faces here... and I was just curious how people started their search and ended up here...
What was your path to the kingdom?
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Jayne
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Re: What leads people to CH.com?
« Reply #1 on: Feb 6th, 2004, 5:54pm » |
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desperation.....wanting to find out if I was a freak (well I know I am) couldn't beleive my eyes when I found this place....an oasis in the desert.
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amen
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Re: What leads people to CH.com?
« Reply #2 on: Feb 6th, 2004, 6:33pm » |
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After about 4 years of being told I had "tension ha" "sinus infections""Alergies" and then no pain for 5 years, going back to my GP with a diary I kept for 2 weeks my Doc says "sounds like you have cluster headaches" you have just been lucky for the past 5 years. (Same GP who diagnosed all of the above) AHHHHH I said, now there is a name for what I am suffering. Went home got on the internet and typed in Cluster headaches and wham! Here I was. That's my story.
Andrea
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t_h_b
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Re: What leads people to CH.com?
« Reply #3 on: Feb 6th, 2004, 6:37pm » |
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This website is probably the most frequent result returned when searching for "cluster headache" on search engines.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Ree
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Re: What leads people to CH.com?
« Reply #4 on: Feb 6th, 2004, 6:38pm » |
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on Feb 6th, 2004, 5:54pm, Jayne wrote: but I more or less was looking for a cure............ didnt find one but what i found was the beginning of a lovely friendship with about 5000 people..........ree
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Jayne
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Re: What leads people to CH.com?
« Reply #5 on: Feb 6th, 2004, 6:38pm » |
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yeah thanks to our Deej
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jonny
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Re: What leads people to CH.com?
« Reply #6 on: Feb 6th, 2004, 6:46pm » |
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I was diagnosed with Meegraines but there was no really cool websites for that, I found this place after searching out "Really cool head pain websites" and here I be 
..................................jonny
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Jayne
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Re: What leads people to CH.com?
« Reply #7 on: Feb 6th, 2004, 6:47pm » |
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nah....your just looking for your leg over Jonny
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jonny
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Re: What leads people to CH.com?
« Reply #8 on: Feb 6th, 2004, 6:50pm » |
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on Feb 6th, 2004, 6:47pm, Jayne wrote:| nah....your just looking for your leg over Jonny |
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Leg over?
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Jayne
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Re: What leads people to CH.com?
« Reply #9 on: Feb 6th, 2004, 6:52pm » |
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it means....er.....to have sex
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kissmyglass
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Re: What leads people to CH.com?
« Reply #10 on: Feb 6th, 2004, 6:54pm » |
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After 2 years of total misery,oral surgeons ,ENT docs , Trigeminal neuragalia drugs ect. coming up with nothing...Wife googled "Face pain" & bingo She came flying into the room said I know what you have!!!! I asked what, she said Cluster headaches & I laughed & toold her to keep looking I didn't have headaches. She insisted so I came her & looked & instantly knew I was a clusterhead & was home... Thanks DJ
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jonny
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Re: What leads people to CH.com?
« Reply #11 on: Feb 6th, 2004, 6:55pm » |
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on Feb 6th, 2004, 6:52pm, Jayne wrote:| it means....er.....to have sex |
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Oh....LMMFAO.......Dont need Nashville for that babe, youve met me no?
................................jonny
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Woobie
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Re: What leads people to CH.com?
« Reply #12 on: Feb 6th, 2004, 7:01pm » |
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google.
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Virginia
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Re: What leads people to CH.com?
« Reply #13 on: Feb 6th, 2004, 7:02pm » |
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on Feb 6th, 2004, 6:46pm, jonny wrote:I was diagnosed with Meegraines but there was no really cool websites for that, I found this place after searching out "Really cool head pain websites" and here I be
..................................jonny |
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I KNEW IT!!! I KNEW YOU WERE A MEEGRAINER ALL ALONG!!
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Jackie
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Re: What leads people to CH.com?
« Reply #14 on: Feb 6th, 2004, 7:09pm » |
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Yep...desperation. We were at the end of our rope. Blake was so tramatized (for lack of a better word) after years of being chronic that I thought we wouldn't make it much longer. I did a search on clusters and landed here.... welcomed and helped a bunch the very first night by Jonny, Kip, Paco and Navygunner. I'll never forget that night and will love those dudes forever....I swear they saved us. That's been almost 4 years ago now....time flies.
Jacks 
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Rick_K
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Re: What leads people to CH.com?
« Reply #15 on: Feb 6th, 2004, 8:42pm » |
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Found ch.com from the OUCH site
DJ, Thanks for all you do !
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Mark C
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Re: What leads people to CH.com?
« Reply #16 on: Feb 6th, 2004, 9:01pm » |
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25 years of pain +Google = CH.com!
Thanks DJ!
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broomhilda
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Re: What leads people to CH.com?
« Reply #17 on: Feb 6th, 2004, 9:11pm » |
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Agree to all the above from a newbie... desperation and google = clusterheadaches.com and a little help from DJ
Thanks for everything!
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Suck it up Princess...
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bobkip
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Re: What leads people to CH.com?
« Reply #18 on: Feb 6th, 2004, 9:45pm » |
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Fought the beast since I was 8. Mom called them "sinus ha". It was occasional then but worsened in my teens and 20s. Many many 10s by then. Stupid docs ran the gamut of misdiagnosis, sinus, dental, meegraine, etc etc. Many useless meds til early 40s when a coworkers wife was suffering from migraines and subscribed to a headache fondation news letter. He'd pass them on to me and one had an article on ch. The little light above my head didn't jusst turn on, it blazed. And even then, knowing what the beast was, the stupid docs refused to recognize it. Finally found a neuro that had heard of clusters but had never treated it. O2 I sez, he agreed and I've been sucking the stuff since (mid 80s)I've been both episodic and chronic, mostly left sided but sometimes on the right. One of the chronic phases involved both sides; one side would be winding down and the other cranking up. The right was the worst, mostly 10s and at least 5 a day. In the mid/late 90s,looking for info or anything, I did a search on clusterheadaches and found this site. WOW!!!! I cried. The reaction from newbies was then and still is "I thought I was alone". Tho I was absent form the chmb for several years due to a cranky puter that wouldn't load the new format, I'm back with a new puter and happy to be here. Thanks DJ.
Kip
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ckelly181
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Re: What leads people to CH.com?
« Reply #19 on: Feb 6th, 2004, 9:49pm » |
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on Feb 6th, 2004, 9:01pm, Mark C wrote:25 years of pain +Google = CH.com!
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Yea - what he said...
Chris
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Kevin_M
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Re: What leads people to CH.com?
« Reply #20 on: Feb 6th, 2004, 10:20pm » |
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To get a wider perspective of this affliction other than what doctors think they know. I know now it is best to go to an appointment a little educated on CH so that the prescription the doctor writes is reasonable.
Like when the doctor I saw wrote me a prescription for two imitrexes a month. That kind of joke is not even funny.
I certainly don't play know-it-all when talking to a doctor but I find it best to know what I am taking and why I am taking it. I am not hesitant to talk to a doctor frankly.
I told that doctor that what if you were to come to me because you were getting whacked in the temple with a ball pien hammer about five times a day and I prescribed you two aspirins and said have a nice day. I get serious about what I know is needed to fight this beast and will stand my ground on an abortive I can use at work, in case their idea of a preventative may work, but not on me. Without work, no insurance. That is my number one concern to my doctor, keep me working.
Anyway, this sight came about when I couldn't find anything on clusters until I typed it into my computer. I realized the difficulties we all have had to arrive at for a solution to live with, only to have to change it again next cycle.
The small variety of solutions which may work on me need to be discovered, and to do that I need ammunition to mold my doctor to press for new solutions. I can toss in some ideas to brainstorm the process by being heads up in this site, and I thank everyone who has commented, supported, helped and advised me here. Thank you all.
Kevin M
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Charlie
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Re: What leads people to CH.com?
« Reply #21 on: Feb 6th, 2004, 10:43pm » |
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Got a puter in August 2001 and wondered if the web had anything related to my old horror. Found it one night and spent a long time in the guest book. After that I found I fit in with the rest of you brain-damaged misfits.
Got hooked.
Charlie
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tsayswhy
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Re: What leads people to CH.com?
« Reply #22 on: Feb 7th, 2004, 12:49am » |
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After 4 years of being told they are migraines that could be cause by my allergies 
I walked into my doc. office  and told him if he couldn't make this stop i would pull the trigger thinking he would put me in a stright jacket he told me that i had migraines and would have to learn to deal with this.
Thank God the only trigger i pulled was my figure on the key board headaches=clusterheadaches 
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firebrix
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Re: What leads people to CH.com?
« Reply #23 on: Feb 7th, 2004, 3:10am » |
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Four years Mopar was in hell. New Computer. Google Search and straight to CH.com.
THANK YOU DJ!!!!!!!!!!!
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thomas
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Re: What leads people to CH.com?
« Reply #24 on: Feb 7th, 2004, 3:44am » |
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on Feb 6th, 2004, 5:54pm, Jayne wrote:| desperation.....wanting to find out if I was a freak (well I know I am) couldn't beleive my eyes when I found this place....an oasis in the desert. |
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ditto, most people don't know it, but my first post was a response to a joke that you posted back in 1999, thanks for pulling me out of my shell...........was ready to pull the plug........... this place is the only thing that still keeps me from doing it........ Thanks DJ.......... I owe you my life................ no shit my friend........ I hope I can call you that, though I've never met you....... yes, this is another RARE moment of thomas weakness.......... don't get used to it, 'cause I'm one strong MO FO. I am just being honest........ I can kick the beast's ass now, with the help of my family........ just trying my damn best to give a little back........... If I can make one person smile or pull themselves up by their boot straps and kick the beast's ass, then my life has been worth living, nothing more to say, except that I love all of you, and wish i could take the pain away from everyone.........
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| « Last Edit: Feb 7th, 2004, 4:24am by thomas » |
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