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Title: What leads people to CH.com? Post by athos on Feb 6th, 2004, 5:51pm 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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Title: Re: What leads people to CH.com? Post by Jayne on Feb 6th, 2004, 5:54pm 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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Title: Re: What leads people to CH.com? Post by amen on Feb 6th, 2004, 6:33pm 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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Title: Re: What leads people to CH.com? Post by t_h_b on Feb 6th, 2004, 6:37pm This website is probably the most frequent result returned when searching for "cluster headache" on search engines. |
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Title: Re: What leads people to CH.com? Post by Ree on Feb 6th, 2004, 6:38pm on 02/06/04 at 17:54:30, Jayne wrote:
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Title: Re: What leads people to CH.com? Post by Jayne on Feb 6th, 2004, 6:38pm yeah thanks to our Deej |
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Title: Re: What leads people to CH.com? Post by jonny on Feb 6th, 2004, 6:46pm 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 ;;D ..................................jonny |
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Title: Re: What leads people to CH.com? Post by Jayne on Feb 6th, 2004, 6:47pm nah....your just looking for your leg over Jonny |
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Title: Re: What leads people to CH.com? Post by jonny on Feb 6th, 2004, 6:50pm on 02/06/04 at 18:47:25, Jayne wrote:
Leg over? |
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Title: Re: What leads people to CH.com? Post by Jayne on Feb 6th, 2004, 6:52pm it means....er.....to have sex |
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Title: Re: What leads people to CH.com? Post by kissmyglass on Feb 6th, 2004, 6:54pm 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 Kev |
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Title: Re: What leads people to CH.com? Post by jonny on Feb 6th, 2004, 6:55pm on 02/06/04 at 18:52:38, Jayne wrote:
Oh....LMMFAO.......Dont need Nashville for that babe, youve met me no? ;;D ................................jonny |
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Title: Re: What leads people to CH.com? Post by Woobie on Feb 6th, 2004, 7:01pm google. |
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Title: Re: What leads people to CH.com? Post by 9erfan on Feb 6th, 2004, 7:02pm on 02/06/04 at 18:46:19, jonny wrote:
I KNEW IT!!! I KNEW YOU WERE A MEEGRAINER ALL ALONG!! |
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Title: Re: What leads people to CH.com? Post by Jackie on Feb 6th, 2004, 7:09pm 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 8) |
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Title: Re: What leads people to CH.com? Post by Rick_K on Feb 6th, 2004, 8:42pm Found ch.com from the OUCH site DJ, Thanks for all you do ! |
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Title: Re: What leads people to CH.com? Post by Mark C on Feb 6th, 2004, 9:01pm Thanks DJ! |
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Title: Re: What leads people to CH.com? Post by broomhilda on Feb 6th, 2004, 9:11pm Agree to all the above from a newbie... desperation and google = clusterheadaches.com and a little help from DJ Thanks for everything! ;;D |
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Title: Re: What leads people to CH.com? Post by bobkip on Feb 6th, 2004, 9:45pm 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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Title: Re: What leads people to CH.com? Post by ckelly181 on Feb 6th, 2004, 9:49pm on 02/06/04 at 21:01:40, Mark C wrote: Yea - what he said... Chris |
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Title: Re: What leads people to CH.com? Post by Kevin_M on Feb 6th, 2004, 10:20pm 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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Title: Re: What leads people to CH.com? Post by Charlie on Feb 6th, 2004, 10:43pm 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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Title: Re: What leads people to CH.com? Post by tsayswhy on Feb 7th, 2004, 12:49am 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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Title: Re: What leads people to CH.com? Post by firebrix on Feb 7th, 2004, 3:10am Four years Mopar was in hell. New Computer. Google Search and straight to CH.com. THANK YOU DJ!!!!!!!!!!! |
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Title: Re: What leads people to CH.com? Post by thomas on Feb 7th, 2004, 3:44am on 02/06/04 at 17:54:30, Jayne wrote:
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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Title: Re: What leads people to CH.com? Post by Callico_Kid on Feb 7th, 2004, 4:05am Hey Charlie, who you calling dain bramaged??? That hurts! ;;D I found this place by way of OUCH. Just got started and my 'puter died. Got a new 'puter just after the new board came out, and I've been here since. I don't plan to leave 'till I get carried out feet first. I am profoundly grateful for what I have received and want to share what little I can with others. Jerry |
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Title: Re: What leads people to CH.com? Post by BobG on Feb 7th, 2004, 4:44am In 1998 I was in a bad cycle. I had been diagnosed and knew the name cluster headaches. I Yahoo'd my way here. |
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Title: Re: What leads people to CH.com? Post by cakelady on Feb 7th, 2004, 7:47am Got hit after 7 years PF...Went looking for anything new. You googled right up to the top. Thank God for DJ and the family he has fostered. Christine |
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Title: Re: What leads people to CH.com? Post by no-one on Feb 7th, 2004, 8:57am Desperation ........ I found another headache site first and from there I found OUCH that lead me to you. Thank God I found you |
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Title: Re: What leads people to CH.com? Post by helpless23 on Feb 7th, 2004, 9:16am Actually, Ken found this place by doing a google search and putting in "pain on one side of head" and this was the first link on the page! After suffering for over 20 years, going into a 7 year remission and then getting them back..it was surely a blessing! He no longer feels alone. Toni |
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Title: Re: What leads people to CH.com? Post by Margi on Feb 7th, 2004, 11:22am It was in the middle of a particularily vicious cycle for Mike and it was one of those mornings after yet another sleepless, tortured night for us. Mike was getting hit about 8 times a day at that point and, like everyone else, desparation took over. I had been researching his pain for years prior but had never found any real answers. I just typed "headaches" into my browser and ch.com was one of the places I visited. That was back in 1998, in the fall - ch.com's first year. There was a guy here called Doc Jerry and he was talking about his water treatment. I printed out a ream of stuff from here and took it home to Mike. He just stared in amazement that we finally had a name for our hell! He tried that water treatment and, within a week, his cycle was GONE. As Charlie says, we've been hooked every since! DJ was the first clusterhead we'd ever met and it was an amazing experience. I'd never seen Mike relate to someone so fast, but he did. DJ and Julie came and stayed with us for a few days and it was like having long lost family come home for a visit. Then Mike met Greg (Monique's hubby) and they, too, were fast friends. The Vancouver convention wasn't a convention - it was a family reunion! This place has been like finding people from our home planet! |
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Title: Re: What leads people to CH.com? Post by taraann on Feb 7th, 2004, 11:31am Was diagnosed at the end of my cycle last year (told severe migraines for years before that) didn't think much of it cause then my cycle ended. This year they started and my hubby reminded me of the doc saying clusters so I typed it into a Yahoo search and here I am. Knew NOTHING about clusters till I found this place! And now I'm HOME. This is the best wealth of info and support out there! |
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Title: Re: What leads people to CH.com? Post by BillyJ. on Feb 7th, 2004, 1:25pm I typed 'suicide+headache' into msn search bar.Yes I was that close! The #1 match was this place!The very first post I read said that sucide doesn't stop the HA it just stops us from dancin'! |
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Title: Re: What leads people to CH.com? Post by FrankW on Feb 7th, 2004, 1:38pm Sat here doing my CAD stuff one night trying to think - got this feeling of intense frustration at the debilitating pain that has been messing me about since I was 8 years old that nobody else ever understood. Correctly diagnosed four times in fifty years - once by an old combat surgeon (he called it a suicide headache) - once by a chinese doctor - now by a Swedish doctor - and once long ago by a royal navy crew chief who noticed I wasn't using the aeroplanes oxygen just for hangovers. Typed into google a few bad words describing my feelings and wound in an old format archive on this site reading a heated discussion between others expressing exactly the same feelings. Hell of a surprise. Not alone anymore. |
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Title: Re: What leads people to CH.com? Post by KingOfPain on Feb 7th, 2004, 2:08pm on 02/06/04 at 17:51:53, athos wrote:
The Yellow Brick Road. I found OZ. Thank you DJ (the man behind the curtain). http://smileys.smileycentral.com/cat/10/10_12_7.gif [smiley=thumb.gif] |
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Title: Re: What leads people to CH.com? Post by KingOfPain on Feb 7th, 2004, 2:22pm Cluster Headaches. What prompted the search. Google. Search engine. http://www.clusterheadaches.com What the search results were. August, 1999. Began my quest. (at CH.com) Been here ever since. |
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Title: Re: What leads people to CH.com? Post by DJ on Feb 7th, 2004, 2:57pm You guys are the GREATEST! Thank you for all the kind words in this thread. I don't respond all the time, but I'm always watchin' [smiley=curtain.gif] Thanks for making me smile!! ;;D |
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Title: Re: What leads people to CH.com? Post by 5-string on Feb 7th, 2004, 4:24pm Another big THANK'S to you D.J. I did'nt get "on-line" until July-03. The very first thing I did,once I figured out how to find google, was type "cluster headaches" because no one knew what they were. My doctor suggested I might have them a couple of years ago after 5 years of it. I thought they were just some kind of migraine. Until my first day with a computer. THANK YOU EVERYONE!!! you saved my life. ...Mark.. |
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Title: Re: What leads people to CH.com? Post by Jayne on Feb 7th, 2004, 10:22pm Oh, I forgot to add..if I had not found this place..I would be pushing up the dasies by now. again thank you Deej (my hero) |
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Title: Re: What leads people to CH.com? Post by Elaine on Feb 7th, 2004, 10:43pm My kids got a computer and I was trying to learn how to work it, as I had never used a computer before. I put clsuter headaches in the search, hoping to find a medication that worked. I found so much more. I feel like I found freedom. I read for days and found others. DJ I will always call you my angel for what you have done for me and others. The People here and the information here changed my life in more ways than one. I still hurt but I am free. I am free to hurt without hiding. I have pain free times now. My family understands more. I have made some wonderful friends here. I can never tell you what this place means to me. Now because of DJ we have OUCH. It won't be here had he not built this place. OUCH to me is hope for a cure for us all! DJ is the main angel here! |
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Title: Re: What leads people to CH.com? Post by TxBasslady on Feb 8th, 2004, 1:53am Fear.........pain.....desperation.... Used a search engine....looked up headaches....knew I was looking for something that hit at the same time every night. Found Clusterheadaches........I lurked on the board for a year and a half. A full blown cycle brought me "home". Thanks to all of you for the great support I have received. And to Jackie.....my "angel", God knows how much I love you and Blake. DJ..........well, I just can't find the words to say....but you know how I feel! Sending ALL my love to my cluster friends.....You guys are the absolute greatest. Jean |
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Title: Re: What leads people to CH.com? Post by manana on Feb 8th, 2004, 8:39am I've known for many years that I suffer from ch but, I've never researched the subject. I just depended upon the doctors & ins. co. to provide for me. When I changed insurance carriers & they put a limit on my trex, I did a search on the internet & found this site. I've learned more about my condition from those who suffer in the last few months than I learned from my doctors in the last 30 years. Thank you, please keep up the good work. I've never been closely associated with a "support group" before but, if they all work as well as this one, I will recommend one to the next person who is at the end of his/her rope for whatever problem they have. |
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Title: Re: What leads people to CH.com? Post by Edski_1 on Feb 8th, 2004, 8:52am Pretty much found this place like everyone else. Search engine (MSN), typed in "Cluster Headache"... Read through the guest book, other features...was amazed...tried to join the message board, but had recently switched ISP's and as soon as I tried to join, my e-mail addy died...so I had to get a new one set up (hence the Edski_1, rather than just Edski...) and sign up again, and that was just about the time I lost my job... Can't really add much to what peopl say about this site. :) |
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Title: Re: What leads people to CH.com? Post by JDH on Feb 8th, 2004, 11:19am on 02/06/04 at 21:01:40, Mark C wrote:
Ditto minus about 7 years of pain. Jim |
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Title: Re: What leads people to CH.com? Post by forgetfulnot on Feb 8th, 2004, 1:25pm I arrived here from an old dusty headache newsgroup where DJ was offering a new cluster headache only oriented website. Simply no comparison between then and now. Thanks DJ, you’re the man! Lee |
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Title: Re: What leads people to CH.com? Post by Paigelle on Feb 8th, 2004, 1:38pm Yahoo led me here! I searched because I was sick of wanting to kill myself every cycle. I don't have to now, DJ took care of all of us. |
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Title: Re: What leads people to CH.com? Post by athos on Feb 8th, 2004, 6:17pm didn't think that I would get such a great response.. I know that this in an internet board, but are there those who found CH from a friend or doc, anything other than a search engine... Athos |
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Title: Re: What leads people to CH.com? Post by kim on Feb 8th, 2004, 8:31pm A most penetrating need to seek information and/or other "beings" from outer space like "me"... Seriously, b4 the computer there were only encyclopedia-like books that i hungrily ate up in a frenzied attempt to make contact. I usually ended up with a deflated one-paragraph description that served only as a "tease"......they were anti-climatic, i could not find myself in those tiny dismissive paragraphs. Then. Along comes Progress. I have this little tv in front of me and i'm feelin kind of fucked up. So, lil ole me types in the first thing that comes to my lil ole mind - which is - of course the thing that is dogging me ....clusterheadaches.com . That was easy. WOW. The world just tilted in a most fantasmagoric way. Chills, tears, words on a screen that i munch up like a tractor over tall grass. Who knew. DJ - what. a. PISSER! I still get chills tinkin on it. :) |
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