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        Cluster Headache Help and Support >> Cluster Headache Specific >> How many people out there have no idea?
        
(Message started by: JohnMcCloy on Nov 7^th, 2007, 12:57am)

Title: How many people out there have no idea?
Post by JohnMcCloy on Nov 7^th, 2007, 12:57am

There must be quite a few people out there that are afflicted with this terrible sickness yet have no idea what they are suffering from since Cluster Headaches are one of the most under exposed afflictions around.I have yet to meet someone who knows what a Cluster headache is aside from a sufferer.
I really wish it would get a tad more attention so that some of these people out there could finally stop thinking they have a tumor but are too afraid to find out and start getting some help.

Title: Re: How many people out there have no idea?
Post by michael on Nov 7^th, 2007, 3:11am

Hi John

I mentioned this a while ago on this site. I went 30 years misdiagnosed with this condition, and I only found out by accident by a friend showing me a doctors column in a magazine. That was ten years ago and I still had never heard of another sufferer until I found this site this year. My heart goes out to the people who still have no idea what they have. It's criminal that such a painful condition as this is still so unknown, not just to the general population, but unfortunately to the medical profession as well.

PF wishes

Mike

Title: Re: How many people out there have no idea?
Post by Guiseppi on Nov 7^th, 2007, 10:34am

If you haven't already visited the OUCH board, you should give it a look see. Well worth throwing a little financial support their way as they are very active in "spreading the news to docs." They've made up informational pamphlets that Linda passes out like candy to anyone with any link at all to medical fields. We need a really high profile public figure to get diagnosed with it, someone with "STAR" appeal!!!

Guiseppi

(Who is in no way WISHING a star gets CH... ;;D)

Title: Re: How many people out there have no idea?
Post by black on Nov 7^th, 2007, 3:12pm

Quote:

How many people out there have no idea?

i think they are all in the public phone book ;;D

Title: Re: How many people out there have no idea?
Post by txbeck on Nov 7^th, 2007, 4:57pm

What worries me is that CH could become the next fad catchall illness. I know that over the past 44 years, since my first cycle, I have gone through the fear of a brain tumor...to hysteria...to manic depression...to hypoglycemia...to chronic sinus infection...at least half a dozen other diagoses/ treatments I can't even remember.

Even though I have known for nearly 40 years that my first cycle in 1963 was classic CH, it was only this year when I entered another 4 month long classic knife-in-the-eye pain/tears/sweats/congestion cycle that I finally recognized the neck pain, sinus pain and other cyclic attacks since then had also been manifestations of CH. CH is not just a vicious beast, it's a sneaky beast.

How can it be objectively diagnosed when even we, who know it best, can't even diagnose it subjectively?

Title: Re: How many people out there have no idea?
Post by DennisM1045 on Nov 7^th, 2007, 8:58pm

on 11/07/07 at 16:57:59, txbeck wrote:

How can it be objectively diagnosed when even we, who know it best, can't even diagnose it subjectively?

Well put Becky! I went 12 years before finding this site and getting diagnosed. Till then Drs would just look at me with their head tilted and you know they're thinking "why I couldn't put up with a little headache". I'd leave and put up with another few years of pain. Doctors can't recognise it and, sometimes, neither can we.

-Dennis-

Title: Re: How many people out there have no idea?
Post by sldrswyfe on Nov 11^th, 2007, 4:39pm

Since I found Ch.com, only about seven months ago...I didn't know anyone who even knew what ch's were, let alone meet another ch...I still havent met another CH in person yet, but at least I know others now.

It is sad when we leave the dr's office feeling guilty, stupid and embarassed, and go suffer for a long time again.

OUCH is really trying to change this unfortunate fact...definately the place to go and to also support, as public awareness is what OUCH is striving for.

Title: Re: How many people out there have no idea?
Post by billyjoe on Nov 12^th, 2007, 1:09pm

on 11/07/07 at 10:34:30, Guiseppi wrote:

(Who is in no way WISHING a star gets CH... ;;D)

I have wondered if Terrell Davis(Broncos) had Migraines or Clusters during the Super Bowl and I am still not sure. He has a Migraine foundation, but I have found references where they call it clusters.

http://findarticles.com/p/articles/mi_m1208/is_n48_v220/ai_18893107

Title: Re: How many people out there have no idea?
Post by cat1955 on Nov 13^th, 2007, 2:02am

I have had CH for about 30 yrs and I wish that all the drs that I have been to over the years could experience a week long cycle just once... ::)

Title: Re: How many people out there have no idea?
Post by BarbaraD on Nov 14^th, 2007, 7:13am

What I'm reading here is something that's been posted over and over since 1998 -- and it still gets to me. "I didn't know what I had and doctor's misdiagnosed me for years." "Until I found this site I thought I was alone." "I've never met another Cher."

We've all been there and it is a shame that we've had to suffer needlessly and alone for so long. I don't know what the answer is and I don't think anyone else does.

We formed OUCH to get the word out that CH does exist and try to get it KNOWN to doctors. Thousands of people have found this site since it was set up - that's a BIG start iand it s helping. Thousands of CHers have actually MET in person - that's a BIG start.

And NO people do NOT understand our disease. Until we find a cause for it, they never will understand it and that's just a fact. I don't know how many times I've been asked, "What causes those headaches?" If I knew = I wouldn't do it you fool! or my favorite, "Oh they're like migraines." Yeah, like a goldfish is to a shark! and the #1, "Can't you take something?" Yeah, a stick of dynamit to your *&*&^^!

Most of us "oldtimers" come to this site daily and do what we can to help those who have just found this place. Right now that's about all we can do, but as long as we have this place, CHers will always know they're not alone and that means a lot when you suffer from this disease.

My wish to all of us is PFDAN and soon....

Hugs BD

Title: Re: How many people out there have no idea?
Post by Bob_Johnson on Nov 15^th, 2007, 9:16am

Keep in mind that we are a VERY select group: in having the disorder; in searchng for help; for reading.

Surveys report that about 60% of the American public does NOT read a newspaper, book, or magazine.

You can't have a good health system, much less a democratic society, with such poverty................

Title: Re: How many people out there have no idea?
Post by GrandPotentate on Nov 16^th, 2007, 12:12am

We are rare enough that it is uncommon for a doctor to meet a CHer during his career. Many (most) of us have met those docs. It is really a relief when we find one who takes this seriously.

We've got a funny name for this thing. It doesn't sound like a real problem. It it was called ashdkdicvxnsdnbe's disease, it would probably get more respect. Yeah, a celebrity would help. I'm working at trying to become one,but perhaps I should have picked up something besides the accordion.

I hadn't heard of CH, and went through cycles without knowing. My kid's bartender referred me here some years ago. My GP did some digging around the same time, and we changed direction from a neuro's misdiagnosis to something far more constructive. My thanks to you all for pulling me through!

Back in the 70's, I worked briefly with a guy who got serious headaches. In retrospect, they were probably CH. Probably the only CHer I ever met. I didn't think much about this until I started. Maybe be had this before anyone had defined this. He was on some abortive suppository!

My mom was a hypochondriac and well versed in many diseases. She's the only lay person I've met who had heard of this. It's odd that she didn't catch it. Fortunately, I had had enough of these prior to reading the description that I was assured that it was not my hypochondria. I had all the classic characteristics before I even knew what they were.

We're just quite "special".

Are there more folks out there going through what we did? You bet! We'll see their first posts this week, and the week after that...

Title: Re: How many people out there have no idea?
Post by tommyD on Nov 18^th, 2007, 8:48am

Quote:

We've got a funny name for this thing. It doesn't sound like a real problem. It it was called ashdkdicvxnsdnbe's disease, it would probably get more respect.

Actually, an older name for CH is Horton's Cephalgia, (or Cephalalgia) which is kind of cool because we could call it HC rather than CH. Downside, it evokes goofy images of Dr. Suess' elephant. (We are here!)

But this Horton is Dr. Bayard T., the first guru of cluster headache. He write the first full description of CH, trated it with DHE and oxygen, and described medication-induced rebounds. Check this out:
http://www.mayoclinicproceedings.com/inside.asp?AID=3032&UID=

-tommyD