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echo
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Re: Important web site
« Reply #1 on: Sep 23rd, 2003, 10:24am » |
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Thanks Don. Next conference call I'll go in there and check it out alot deeper.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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kissmyglass
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Re: Important web site
« Reply #2 on: Sep 23rd, 2003, 10:29am » |
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Wow Thats impressive. Is OUCH going to become a member? I believe we should.....asap....
Kev
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"It does so fucking look like her" - Picasso
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don
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I have just proposed to the BoD that funds be expedited to do just that.
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suzy617
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Re: Important web site
« Reply #4 on: Sep 23rd, 2003, 10:45am » |
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Very Interesting. Only 22% were diagnosed correctly by the Drs. and 16% of the patients diagnosed themselves correctly. Not much of a difference there. 
Suzy
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vig
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Re: Important web site
« Reply #5 on: Sep 23rd, 2003, 11:42am » |
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Most importantly, doctors are beginning to realize they are misunderstanding CH. It won't be long before the doctors get their acts together. A lot of misery will be spared when diagnoses are quicker and more accurate.
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never, Never, NEVER quit. -Winston Churchill
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don
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Quote:| It won't be long before the doctors get their acts together. |
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The very point of discussion I had with Goadsby.
The upside is this.
Many Gps are at least recognizing the sypmtoms of CH and making referals to a neuro.
A few short years ago the same Gps were saying "Migraine" and mistreating.
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Pinkfloyd
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Re: Important web site
« Reply #7 on: Sep 23rd, 2003, 2:06pm » |
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Gee....after reading the Dutch report on diagnosis problems, I wonder if this board would like to try to track down all the people that were told they couldn't possibly have clusters, even though their doctors diagnosed them as such, and chased away as frauds...migrainers in disguise trying to break into the inner sanctum. I sure hope those people that were told to keep looking for a doctor to properly diagnose their headaches and treat them as migraines, found one (a doctor) to match this board's diagnosis. I'm sure they'll be feeling so much better by now.
This study must be wrong. Nausea? photosensitivity? Constant headache between peak pain attacks? I'll bet a migrainer wrote this study!!! Either that or their wooden shoes are on too tight.
Anyone thinking about changing some of the questions on the CH questionaire....you know, the one you must pass to be able to get past the bouncers at the door and be allowed to participate?
I know some of you are proud to have been able to survive the beatings you took at the onset and think everyone should be that strong. If they're too weak to take it, tough. You're probably a migrainer anyways, a *real* clusterer can take it!!
Just reminds me of the typical abused spouse syndrome. "He only hit me because I did something wrong. He's really a nice guy when you get to know him"
"I should probably leave the next time he beats the kids, but he really loves them and protects them. Sometimes they need to be taught a lesson. He better not ever catch anyone *else* treating his kids wrong."
"take what you need and leave the rest?" LOL
A major copout to not want to make things better because you can close your eyes to the bad stuff.
The guy next door rapes little kids but his wife is nice and he keeps his grass mowed along those cute little angles like a baseball field. He even let me use his sailboat one day. It all looks good from where *I* sit and besides......I don't have any kids! Every neighborhood has one. Just take what 'cha need and leave the rest!!!
PF
Don't like the post? Hey, just take what ya need and LEAVE the rest.
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Lori
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Re: Important web site
« Reply #8 on: Sep 23rd, 2003, 2:23pm » |
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I don't think you can hardly compare rape to people saying crap on a message board. Helloooo
on Sep 23rd, 2003, 2:06pm, Pinkfloyd wrote:Gee....after reading the Dutch report on diagnosis problems, I wonder if this board would like to try to track down all the people that were told they couldn't possibly have clusters, even though their doctors diagnosed them as such, and chased away as frauds...migrainers in disguise trying to break into the inner sanctum. I sure hope those people that were told to keep looking for a doctor to properly diagnose their headaches and treat them as migraines, found one (a doctor) to match this board's diagnosis. I'm sure they'll be feeling so much better by now.
This study must be wrong. Nausea? photosensitivity? Constant headache between peak pain attacks? I'll bet a migrainer wrote this study!!! Either that or their wooden shoes are on too tight.
Anyone thinking about changing some of the questions on the CH questionaire....you know, the one you must pass to be able to get past the bouncers at the door and be allowed to participate?
I know some of you are proud to have been able to survive the beatings you took at the onset and think everyone should be that strong. If they're too weak to take it, tough. You're probably a migrainer anyways, a *real* clusterer can take it!!
Just reminds me of the typical abused spouse syndrome. "He only hit me because I did something wrong. He's really a nice guy when you get to know him"
"I should probably leave the next time he beats the kids, but he really loves them and protects them. Sometimes they need to be taught a lesson. He better not ever catch anyone *else* treating his kids wrong."
"take what you need and leave the rest?" LOL
A major copout to not want to make things better because you can close your eyes to the bad stuff.
The guy next door rapes little kids but his wife is nice and he keeps his grass mowed along those cute little angles like a baseball field. He even let me use his sailboat one day. It all looks good from where *I* sit and besides......I don't have any kids! Every neighborhood has one. Just take what 'cha need and leave the rest!!!
PF
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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don
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Having a bad day Pink?
Quote:| Anyone thinking about changing some of the questions on the CH questionaire |
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Those particular questions have been endorsed in the UK by Prof. PJ Goadsby. Care to take issue with him?
Quote:| "take what you need and leave the rest?" |
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Obviously you dont grasp the meaning or context of the statement.
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BarbaraD
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Re: Important web site
« Reply #10 on: Sep 23rd, 2003, 3:25pm » |
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What I really think is impressive about it is that Clusterheadaches.com is a link on it. DJ didn't know what he was starting back in 98 when he set up this website. Geezzz!
BD
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Pinkfloyd
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Re: Important web site
« Reply #11 on: Sep 23rd, 2003, 3:49pm » |
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on Sep 23rd, 2003, 3:25pm, BarbaraD wrote:What I really think is impressive about it is that Clusterheadaches.com is a link on it. DJ didn't know what he was starting back in 98 when he set up this website. Geezzz!
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Barb,
There are MANY impressive things about this site for not only DJ, but many others to be very proud about.
That doesn't respond to the problems that exist or what will surely be an asserted effort to tell me why those problems do not need to be addressed. The old misdirection play.
As far as links go, this site, for its information, SHOULD be linked to any site dedicated to the cluster headache issue. It has a wealth of information...good information.
There are two main reasons for adding links to a site. One is to spread information that the site owner wants to share and feels is important. The other is that by adding as many links to your site as possible, especially if those links contain other "listed" links, you increase the ease and the "standing" of your website for the search engines. The more links you have on your site, in most cases, the higher up on the list your site will appear, giving you more hits and making it easier to find.
There are other ways of getting up on the list but this is one.
Actually, my biggest gripe is that the site is so good, and so important, that the site, and DJ, should be shown more respect then people are willing to require of the message board.
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
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Pinkfloyd
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Re: Important web site
« Reply #12 on: Sep 23rd, 2003, 3:56pm » |
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on Sep 23rd, 2003, 2:23pm, Lori wrote:I don't think you can hardly compare rape to people saying crap on a message board. Helloooo
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Of course you're correct and I wouldn't want to offend anyone although I'm sure I have. It did get a response though.
It was an analogy. Not comparing rape to message board chatter. It was comparing people overlooking bad acts because of a persons good acts.
I didnt say, "he's a rapist but he posts real nice to people."
Try this...."he may be a bank robber but I won't turn him in because he's a great little league baseball coach for my son"
If I'm not hurt directly and I get more positive things from him than negative, then he is good for me and its someone's else's problem to deal with his bad side!
In other words...."what's in it for me!"
Again though, if I offended you, I'm sorry.
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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Pinkfloyd
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Re: Important web site
« Reply #13 on: Sep 23rd, 2003, 4:55pm » |
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on Sep 23rd, 2003, 3:04pm, don wrote:
Actually I was having a great day. Just got a new driveway put in. Guess I'll see how the day goes from here 
on Sep 23rd, 2003, 3:04pm, don wrote:
Those particular questions have been endorsed in the UK by Prof. PJ Goadsby. Care to take issue with him?
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Not particulary. But, I'm sure that, since he is a most forward-thinking professional, he will modify his own thoughts on the subject as this and other new research becomes available.
Maybe you missed the point about people being chased away that had those same symptoms that were listed on this study, as not having clusters so shouldn't be here.
The question becomes, will this site be aggressive in keeping up with new research and modify itself. You can't find those people that were told to go away and get their migraines treated due to the length of the pain or nausea. But you can modify the way these people are greeted from now on, when they arrive.
I think a great discussion could occur on the subject. It won't though if you just want to say that Dr. Goadsby said it was ok. Is the list going to stay that way no matter what research becomes available? He didn't stop thinking about how the diagnosis of clusters was done in the past or stop trying to find new information about what causes clusters, when it was believed it was caused by a sensitivity to histamine. He grew. He learned. He moved forward. He's not a bad guy to follow  but he could probably use some help and this site could do that by keeping up with him in those areas that it can.
Are you going to wait for a new list of questions from Dr. Goadsby or would you like to impress him by keeping up to date.....no reason to not try to impress him.
I'm probably already being told this on another response thats being posted while I type this reply, but I understand that I have done nothing to make this site as good as it is nor do I have the job of updating the information, doing any of the endless legwork, untold hours of work. I know that. I have great respect for all the hard work that has gone on around here for years.
No, I have no right to tell anyone to change or modify anything here.
Let me just say this and you and the others can take it for what it's worth.
Since this is a message board and I have signed up and allowed to post, I can offer my opinions. If you or anyone puts no merit on my opinions, that's fine. I'm not hurt by that or will I start an argument over the points.
I do suffer from clusters and have for over 20 years and feel I do have something to offer once in a while. Being as selfish as I am, I would like this site to be a player in finding not only better treatments for ME but for those people I know and care about.
Being a little motivated in finding better treatments and a cure some day, for all the people with clusters that I don't know, the people that know me, know that I've spent a few hours on this myself. Supporting others and trying to help people any way I can.
If *I* can help make this a better place, more people will be helped.
In other words, I don't have the time to donate to this site, mainly because I have my own sites/groups/irons in the fire, but I do have the time to offer what is in my mind, constructive criticism.
Example....I saw a call for additional funds for OUCH because its impossible to get in touch with most of the members, through the message board. I can understand that. It looks like maybe only 100 out of 1000? OUCH members are even willing to read the board anymore. What are the other 900 people reading? People are told every day that this is the only place for cluster sufferers. There is no where else. So, either there ARE other places, or this place (the message board) is a place where 9 people out of 10, don't want to be. Seeing (and knowing) how important this site is for people, consider what they are giving up, just to avoid some of the threads.
It can't be that 9 out of 10 are out of cycle. Plenty of the regulars here post all year long, in cycle or out of cycle.
I know....I know...there are a thousand reasons why. No need to list all the reasons to close your eyes and not list the biggest reason people go away. I've heard them all before. (and no, I'm not talking about just one person. One person cannot set a tone for a message board)
And no, I don't advocate ANYONE leaving. I advocate everyone being treated with respect and helped and supported when they get here. everyone here knows how to do that. It just doesn't always happen. And when it doesn't happen, there are just a bunch of excuses and few apologies.
Would you use this forum to teach your kids how to treat other people in chronic pain, or just your friends in chronic pain.
More people leave this site because of the way others are treated than the way they are treated.
(another unpublished survey )
on Sep 23rd, 2003, 3:04pm, don wrote:
Obviously you dont grasp the meaning or context of the statement. |
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Oh, I think I do. At least I understand the context that it's used now. When people are told to ignore some people's actions, STFU and row.
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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Hooter
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Hey Pinky Bob!
Kind of wordy, but your latest posts make huge sense to me (first ones left me gaping a bit I must admit).
Much more meaningful and thought provoking than a lot of the trite and pointless crap that has passed for threads on the board recently. I have been driven away once by how I was treated, but now I have mostly stayed away because the threads are either moronic self obsessed drivel or internal feuds.
Your post gives me hope that people out there are questioning, challenging, thinking and I am absolutely certain Goadsby would be with that approach all the way.
Shine on you Crazy Diamond!
Wendy
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jonny
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on Sep 23rd, 2003, 6:24pm, Hooter wrote:
What?....you dont like my posts, Wendy?
...................................jonny
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Hooter
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You KNOW I'm not talking about you Jonny!
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Charlie
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Re: Important web site
« Reply #17 on: Sep 23rd, 2003, 9:03pm » |
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Very good Don and glad we're all represented. I really like it.
As I have said many times: There's rarely need to get postal with migrainers who come here. They usually get the idea and don't stay anyway.
Charlie
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| « Last Edit: Sep 23rd, 2003, 9:04pm by Charlie » |
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UnsolvedEquation
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Don...The link you provided says that CH is accompanied by nausea (among other things). I was just wondering...I NEVER get sick with CH and have never heard of other CH'ers getting sick with it either.
My question is ... Do others get sick with CH ? Or does the website have their facts just a little messsed up ?
Thanks for the info .
PFD&N 2 you !
~ Unsolved ~
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Patrick_A
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Re: Important web site
« Reply #19 on: Sep 23rd, 2003, 10:53pm » |
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I agree wholeheartedly. Some people don't like change though! Innovation and always moving forward in our thinking is what will make us stand out as a legitimate Information site. It never hurts to be polite to everyone, but especially to new people.
Sincerely, Patrick
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Pinkfloyd
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Re: Important web site
« Reply #20 on: Sep 23rd, 2003, 11:25pm » |
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Thanks everyone for the discussion/comments. I know I'm wordy. I'm like that everywhere. One additional reason I don't often have time to post here.
~May your next struggle be what to do with your painfree time~
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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Hooter
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Unsolved equation.
Latest survey over here showed quite a lot of CH sufferers get nauseous. Sorry can't remember the percentage now though.
Personally I get nauseous with migraine but not with CH.
W
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rumplestiltskin
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Thanks for the link Don.
The more they learn...the more they learn.
uh...and....
Quote:"take what you need and leave the rest?" LOL
A major copout to not want to make things better because you can close your eyes to the bad stuff. |
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My little moniker gets shit on. OH MY! I then say to myself "someone's ego is on parade and playing semantic games veiled as yet another attempt to "control" this MB" Noted...and filed in "can't we all just get along" file with the rest of the "sad smileys"....smiling....remembering the times I tried to "control" this MB myself....Then....I go back to watching the river flow.
Wage Peace
den
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don
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Quote:But you can modify the way these people are greeted from now on, when they arrive.
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Agreed, but you cant fix people to conform to the way you would like to see things done.
Most people who arrive hear with afflictions that are obviously not CH are politely directed to other sites where they may be able to find help.
As for Goadsby, I believe we have already impressed him.
Hope your driveway dont crack.
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cathy
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Re: Important web site
« Reply #24 on: Sep 27th, 2003, 5:40pm » |
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Some people can get there point across without being offensive and some people can't....
Cathy
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