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Topic: WHY DO PEOPLE GET UPSET WHEN... (Read 768 times) |
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Prense
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WHY DO PEOPLE GET UPSET WHEN...
« on: Aug 20th, 2004, 10:08am » |
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...they find out they may not have CH?
ARE YOU MAD?!?
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Where does the white go in a snowman when the snow melts?
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Gator
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #1 on: Aug 20th, 2004, 11:28am » |
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You got me. It defies logic. I'd be dancing in the streets.
Gator
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thomas
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #2 on: Aug 20th, 2004, 12:34pm » |
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I'd love for my doc to tell me I didn't have ch. 
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JDH
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #3 on: Aug 20th, 2004, 1:02pm » |
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to keep anyone from getting mad I've decided they can have my CH's if it'll make them happy
Jim
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9-11-01, to remember is to honor.
It's not what you know, it's what you can prove.
ECH established 1985
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don
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #4 on: Aug 20th, 2004, 1:23pm » |
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If someone told me that i'd be really pissed.
27 years of dibilitating pain down the tubes.
Freezer full of frozen peas for nothing.
And what the hell am I going to do with these vibrating glasses now?!
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farmboy
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In Cycle and in Pain
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #5 on: Aug 20th, 2004, 1:33pm » |
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I have not a clue why someone would get mad if they were not able to be included in all of the fun we have when in cycle.
My personal goal would be to get excluded from all of this fun.
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E-Double
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #6 on: Aug 20th, 2004, 3:38pm » |
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on Aug 20th, 2004, 1:23pm, don wrote:
And what the hell am I going to do with these vibrating glasses now?! |
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And 10 years wasted perfecting my Tin foil Hats.
What a damn shame!!!
Would give anything to leave this fraternity 
PFDAN!!!!
E
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pubgirl
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #7 on: Aug 20th, 2004, 3:47pm » |
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Prense
I'm with you on this one!
I keep getting bawled out and flamed when I suggest it, and I only ever do when someone's symptoms clearly suggest further investigation and discussion as they might more closely match another headache type.
It's frightening because I'd lay huge amounts of money that there are a LOT of people out there (and in here) who are being treated with Ch drugs who don't need them (particularly worrying are the preventives as they aren't lightweight drugs), and aren't being given the drugs that would actually stop their pain.
Crusade?
No, because I'm getting fed up with getting shit for it and the crusaders never gave up until they was dead
Wendy
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Jonny
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #8 on: Aug 20th, 2004, 3:59pm » |
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Probably cause when some people stumble across this site and see how fast the board moves and how close the family is they want to hang out...Wannabe's?....I dunno.
I'd give two fingers not to have this shit in my head!
..............................jonny
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IndianaJohn
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #9 on: Aug 20th, 2004, 5:13pm » |
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I'd definately give a "left one" not to have this.....
John
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PerryGR
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #10 on: Aug 20th, 2004, 6:26pm » |
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Hello everyone,
I agree that anyone in his right mind would do anything in their powers to get rid of their pain. I also agree that taking the wrong medication isn’t going to help anyone with their condition –so Wendy (and everyone else that consider themselves knowledgeable enough) please don’t give up redirecting those that are going down the wrong path.
Now as for the reasons that someone might get pissed off by being told that it’s possible that they don’t have CH… I think Jonny is right on the money. Not many people would like to be excluded from any group –let alone a group that shares such tight bonds as this one. I would only want to add one thing. I’m asking you to go back to the day that you were diagnosed. Didn’t it feel good to finally put a name on what had battered your lives for only you know how long? I have to say it felt damn good in my case –and I must admit that the possibility of having to live with this pain for the rest of my life didn’t quite register at the time (I still dream of a pain free future  ). So keep in mind that when people are being told that their pain doesn’t seem to be CH they are only deprived of a name for the pain that still haunts their lives (although you always give them suggestions –still they have to start looking all over again). And one more reason that crosses my mind… CH has been described as one of the most intense pains known to man. Being a survivor of that pain could be for some the proof they need in order feel like they worth their weight in salt. Everyone wants to feel like they’re worthy. Take that away from them and of course their going to get pissed.
Now I might just be full of crap but this is how I feel on the subject.
PFDAN to all,
Perry.
P.S.: Pardon me once more for my tendency to write long posts.
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Haven't posted in a while so let me re-introduce myself... Male, 25y.o., CCH sufferer for a little bit more than 5 years. Verapamil and Lithium seem to work well at the moment.
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Prense
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #11 on: Aug 20th, 2004, 6:29pm » |
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That was the answer I was expecting. Very nicely put Perry!
Chris
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pubgirl
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #12 on: Aug 20th, 2004, 6:36pm » |
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Bloody great post Perry!
The trouble is NONE of us here is really knowledgeable enough, but sadly the GP's seem to be even more clueless than we are, so we go from hundreds of poor people desperately needing a name for their terrible condition to hundreds of people being diagnosed with Ch who haven't got it at all. The price of trying to highlight CH to the world.
We are caught in an impossible position, just agree with whatever the person has been told by their crap doctor, or risk alienating a new poster who has come here in good faith, only to be told perhaps they need to think or ask again.
It's depressing really
Wendy
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Kevin_M
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #13 on: Aug 20th, 2004, 6:45pm » |
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And you do a bang-up job Wendy.
Glad you're here.
Kevin M
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Lizzie2
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #14 on: Aug 20th, 2004, 6:59pm » |
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Perry,
Thanks for the great post! That's kind of what I was thinking about earlier as I read through this thread. For almost as long as I can remember being alive, I can remember having no name to put to pain and illness that I had. I started having knee pain when I was in first grade...so severe that I had to sit in a chair during "story time" instead of sitting cross-legged on the floor with the other kids. My teacher just yelled at me. Everyone pretty much thought I was nuts! Finally I went to a rheumatologist a few weeks ago who had the common sense to order x-rays and MRIs for pain I have had for about 17 or so years now!
I've had so many pointless x-rays and blood tests over the years for whatever problem seems to turn up. Most of the time, it results in nothing. When I first got my other type of headache which is chronic and unremitting, I was tested for anything and everything. I actually used to get upset when the MRIs and blood work came back all negative because of the fact that it would have been nice to know what I was facing. The day the lyme disease test came back negative was the first time anyone else ever spoke to me about how much it sometimes sucks that all the tests always come back fine! That was a few years ago.
Getting a diagnosis of CH actually helped me because I could get the right treatment and I did have a name for the pain. Granted, I've only been experiencing CH since last year (a new addition), but I think that knowing what is wrong is half the battle!!
I'd never want anyone to have to experience this pain, and I will be dancing around the room the day it goes away, but at the same time...I am glad that I know what it is I am facing. I can understand the frustrations of not knowing...as I think most of the people here can relate!
Carrie
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don
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #15 on: Aug 20th, 2004, 10:39pm » |
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Good post Perry.
But I still dont know what to do with all these vibrating glasses smart guy.
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Jaime
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #16 on: Aug 21st, 2004, 12:47am » |
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Being new here gives me a different perspective than all you seasoned clusterheads.
I know that I am pretty worried about what my own diagnosis actually is. It is a relief to find this site, and a group of people with some shared experience of pain. I suspect anyone who has been living with long-term intense pain is going to experience some relief in finding this site. Whether they have CH or not.
I know that with the help of the cluster quiz, and the info here - I feel pretty confident about my self-diagnosis of CH. I will be relieved to get professional confirmation that it is not a tumor or an aneurysm, or some other nightmare, though I will not be overjoyed to get my official membership card in this particular club.
However my own story develops, I have learned a lot of very good information from you folks here, so I can only be greatful that you have paved the way to make my own journey less difficult, lonely, and frightening.
I personally have no trouble being generous to people in pain whose lives are so lonely and desperate that they need to belong here in order to belong anywhere. I have never found a migraine site like this. I suffer from chronic depression, and there is no network like this for that ailment. The closest things I know to this are the various 12 step programs (I am a friend of Bill W for 16.5 years now).
I don't think it is so much about being excluded, as it is about losing the hope of having found the answer. Going back to the unknown is a horrible letdown.
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judyw
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #17 on: Aug 21st, 2004, 1:08am » |
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Hello and welcome to the newbies...this thread is an excellent example of the sharing and understanding that can be found here and its importance to our daily lives...just knowing that there is a place to go with your pain and have a connection is the best pain relief of all...thanks to all who participate here...whatever your need, I am sure something positive can be found here...Hugs all around the room...143
judyw
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judyw143
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FZfan
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #18 on: Aug 21st, 2004, 10:46am » |
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wow, what a great thread. Perry and Jamie - outstanding posts.
In my case, I always knew what I had because my father had them, so when mine started, I knew right from the start what it was.
Even having a name for the pain, though, finding this site has still been just as much of a god-send for me as it is for everyone else. Just as important as putting a name to your pain, is the comfort and commeradery of people who, no matter how different they are from you in other ways, know exactly what you are talking about when discussing clusters, and can truly and sincerely empathise.
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There is no such thing as a dirty word. Nor is there a word so powerful, that it's going to send the listener to the lake of fire upon hearing it. - FZ
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Prense
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #19 on: Aug 21st, 2004, 11:01am » |
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I have not run across a message board as active as this one on any subject. Perhaps that has alot to do with it. I don't know...
Chris
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Jonny
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #20 on: Aug 21st, 2004, 12:47pm » |
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on Aug 21st, 2004, 11:01am, Prense wrote:I have not run across a message board as active as this one on any subject. Perhaps that has alot to do with it. I don't know...
Chris |
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LOL....Go check out Howard Sterns MB, fuckin things so fast that after you post theres a whole new page behind you, within two months of hitting the net there were 90,000 members.
Reading the stuff people post there is funny as all hell, if you need a laugh when your done dancing just head there....LOL
......................................jonny
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Prense
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #21 on: Aug 21st, 2004, 1:10pm » |
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LOL figures...
Where the hell is Mancow? He needs to put a stop to that shit!
Chris
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Jonny
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #22 on: Aug 21st, 2004, 2:33pm » |
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Mancow?
He's got CPH and wont be down for breakfast.....LOL
........................jonny
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BobG
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #23 on: Aug 21st, 2004, 10:40pm » |
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There's some folks at the Guest Book that really, really want to be part of our group.
Abby says “Hey every one I'm 16 years old and I've had bad headaches for 8 years. I believe I have Cluster Headaches, so if you guys could send me any over the counter medicine's that have worked for you it would help me out a lot and I would appreciate it more than anything in the world.”
Or, any other drugs you have left over, huh Abby?
David says “I totally believe cluster headaches are caused by a stomach bacteria. Eat certain foods = headaches. Drink certain liquids=headaches. Sleep(body metabolism slows)=headaches. Every thing ties into the stomach!!”
Yep, I’m just like you David. My hypothalmus is in my stomach.
Matt says “not a very nice person eye doctors proscribed some pill that was supposed to "prevent" these headaches. does anyone else see the total pointlessness of taking a pill?! sufferers of these headaches KNOW that instantaneous relief is a necessity i am referring of course to marijuana.. i bought some really good stuff to keep near my bed in case i had an attack.. it DOES dull it down by a good 60-70%.. more for other people.. when the attack finally dies down after an hour or so, you're going to be tired as hell anyway.. so u might as well enjoy the high while you're at it
i'm in the military now and i can't do that kind of stuff anymore.. but you can bet your ass if i wasn't in, i would keep an emergency bag next to my bed just in case..
Eye doctor? For your drug habit no doubt.
Matt, your email address says it all “pzychotic”
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IndianaJohn
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Re: WHY DO PEOPLE GET UPSET WHEN...
« Reply #24 on: Aug 21st, 2004, 11:14pm » |
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That guest book is really something else sometimes...
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Did my brains fall out or is this headache over?
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