i have another intriguing yet useless question to annoy you with. has anyone heard  any other things that we have in common besides smoking habits. i read somewhere in a book where a Dr. described the males who get ch as good looking men with chiseled facial features and were very hardworking, intelligent and driven individuals?

Sounds like BS...it all boils down to a defective hypothalamus.  I don't smoke.

This question comes up a lot, and again rather recently. I think we just get a little tired of saying "no, we don't seem to have anything in common other than CHs." A lot of us share similar triggers, many are season sensitive, that kind of thing. But nothing appears to apply to everyone. Maybe some day they'll find that link that explains everything in the universe, including CHs, but until then....blessings. lance

besides the medical reasoning like the hypo being the culprit even though no scans i have received show anything abnormal either, I'd like to try the road less traveled and ask why can't we or any one see what it is that makes us different. alot of early misconceptions were things like smoking causes it, drinking causes it and alot of Dr's refused to dig deeper because of those habits. what i said about the Dr's perception about men with ch being good looking , or hardworking or in a more positive manor may indeed be BS, but it was the first positive thing i read about the people who suffer ch.   The negativity attached to these habits twists peoples perception and finding and fixing the problem will require separating non ch from these beliefs and making sure that the seriousness of Ch's is not degraded by  comparing Ch's to  other deadly illnesses. no one can fathom an illness that makes people commit suicide when  people  compare ch to other illness's that kill as a reason for us to  look on the bright side.   i understand using perception as a way to keep our spirits up, but other peoples perception is one of the main reasons for  alot of the problems we all encounter. they think that we are just crazy and exaggerating the pain for reasons unknown.   when i was 5 or 6 i had severe leg pains and i did get test done but they didn't find anything and just thought i didn't want to go to school. i am bow legged now and almost was turned down by the military because of this problem  and probably should of had legs straighteners like Forrest gimp but my point there is we seem to be being treated like a bunch of kids who want to stay home.  is this a common issue?  I've  :D  gone off the deep end!

I see no reason to play the game of "why are we special."  Broken hypo, that's it.  I'm not spending my time debating with people over causes that aren't causes. 

We (in the US at least) live in a Puritanical society that can't accept that bad things happen to people without it being their fault.  There MUST be something YOU'RE DOING which causes it. 

Everytime someone starts telling me how they had a brother who got a headache and he cut out gluten....The conversation ends.  Go away, you don't know what you're talking about, I'm not wasting my time on you.

No, yours is a common frustration! From the late 70's medical literature, Ch patients are predominantly men, taller then average, with lionesque features..(WTF? ;D) orange peel skin, rugged outdoor types!!!

We have done countless surveys on this board, trying to find that common feature. I never discourage anyone from continuing that hunt, for some the effort itself is a form of therapy for dealing with CH.

What made me stop searching....at the last OUCH conference, one of the speakers, a doctor, was discussing his work with identical twins who had CH. If one had it, they both had it. And they started up at about the same point in life. For me, that eliminated almost all external factors, it would seem we are just pre-programmed to have this issue! The odds of both twins having exactly the same environmental impacts are pretty slim.

As far as getting the research to help us, there just are not enough of us to justify the horendous expense of R&D, FDA trials etc. required to get a new drug to market. We have to ride the migrain coat tails, hoping some of their meds continue to help us.

You're not off the deep end.....it hurts...it's frustrating...and thus far I haven't figured out how to make it make sense. :(

Joe

willwill wrote on Dec 24^th, 2010 at 5:54am:

i have another intriguing yet useless question to annoy you with. has anyone heard  any other things that we have in common besides smoking habits. i read somewhere in a book where a Dr. described the males who get ch as good looking men with chiseled facial features and were very hardworking, intelligent and driven individuals?

Well, I was thirteen when I first got CH.  While I may have have been masculine and chiseled in my own mind, I doubt that I was any more intelligent and hard-working than the average thirteen-year-old male.  I may be mistaken, but as I recall, the only thing driving me was hormones.

More hooey from the medical profession, IMO.  (Lord knows, we've heard plenty of it.)  No poll or survey of clusterheads--formal or informal--has ever borne it out.

Best,

George

I'm lazy, stupid, and slovenly.

Sounds like more bullshit to me.

I'm not tall, I made the top two thirds of my high school class possible, I'm not outdoorsy, but I am good looking! :D

Jerry

I myself dont really give a rat ass what I have in common :)
Not like it's going to make a diiference. The more you dwell on what,why,how the less time you have enjoying life.
Iam not shooting you down,I just dont worry about it,it's a waste of my time. I got my weapons, so mr. beast if you want to dance,bring it on.


Oh Iam tall and good looking too. :D

i 'm not looking for answers to everything.  maybe i have some healing to do, and if i got on your nerves sorry .  no one can deny the fact that this illness is not a top priority just because there is not enough of us.  I'm on the side that we are misunderstood and Ch's are thought of as an illness that is at the bottom of the priority list do to who we are as individuals and not as an entire group.  when most people hear cancer they understand right away what it all means and feel compassion for that person.  people don't even know what ch's even are and this is 2010 and they have been around for a long time.  i was diagnosed in 1997 and still 8 years later i still have to explain to Dr.s what ch 's are.  why is this condition not common knowledge at least by Dr.s. if you guys have covered it all already and are tired of the theories that's fine i you have done everyone a great service but some of ya sound exhausted by your own quest for answers which means. don't tread on me 8-)

but I am good looking!

Jerry

Devastatingly so!!! ;)

Joe

I attended my first CB convention in Portland. The one thing that stood out was the men were all handsome and the women were beautiful.  :)

Lee_Ann wrote on Dec 24^th, 2010 at 11:52am:

I attended my first CB convention in Portland. The one thing that stood out was the men were all handsome and the women were beautiful.  :)

Tough to argue that one!

Joe

willwill wrote on Dec 24^th, 2010 at 11:50am:

i 'm not looking for answers to everything.  maybe i have some healing to do, and if i got on your nerves sorry .  no one can deny the fact that this illness is not a top priority just because there is not enough of us.  I'm on the side that we are misunderstood and Ch's are thought of as an illness that is at the bottom of the priority list do to who we are as individuals and not as an entire group.  when most people hear cancer they understand right away what it all means and feel compassion for that person.  people don't even know what ch's even are and this is 2010 and they have been around for a long time.  i was diagnosed in 1997 and still 8 years later i still have to explain to Dr.s what ch 's are.  why is this condition not common knowledge at least by Dr.s. if you guys have covered it all already and are tired of the theories that's fine i you have done everyone a great service but some of ya sound exhausted by your own quest for answers which means. don't tread on me 8-)

Your not getting on my nerves,i understand where your coming from,it's all good. I dont think the medical world cares about CH,it's not life threating so i guess it's no thing to them. Even if I found an answer as to why,what difference would it make. I'll let the doctors worry about that,when they figure it out and find a cure I'll take a double dose.Meanwhile I'll enjoy the hand the Lord delt me and kick the beast in the ass if he shows up. :)

im a tall, dark, handsome, hard working type a dude.
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:)

Lee_Ann wrote on Dec 24^th, 2010 at 11:52am:

I attended my first CB convention in Portland. The one thing that stood out was the men were all handsome and the women were beautiful.  :)

I hear the supporters ain't bad either!   :-*

So true. The most caring and beautiful people in the world. All I can say is if you have never attended a convention, you don't know what your missing. I hope everyone will plan to attend one in the upcoming year. Hope everyone has a blessed and pain free year.  :) :)

Quote:

a Dr. described the males who get ch as good looking men with chiseled facial features and were very hardworking, intelligent and driven individuals?

One smart Doc.

willwill wrote on Dec 24^th, 2010 at 11:50am:

i 'm not looking for answers to everything.  maybe i have some healing to do, and if i got on your nerves sorry .

I don't think you've gotten on anyone's nerves.  One thing you can count on around here, though, is that if people don't agree with something that is said, they will say so. 

Perhaps that's something many of us have in common.   ;)

All good wishes,

George

Well I am pretty handsome (in a homely kind of way) 8-)

Brew wrote on Dec 24^th, 2010 at 9:43am:

I'm lazy, stupid, and slovenly.

Are NOT!!!! >:(