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        New Message Board Archives >> Oct-Dec 2003 >> Re: How Rare Are Clusterheads ?
        
(Message started by: BobG on Nov 22^nd, 2003, 4:08pm)

Title: Re: How Rare Are Clusterheads ?
Post by BobG on Nov 22^nd, 2003, 4:08pm

on 11/22/03 at 15:55:33, BlueMeanie wrote:

Just curious if anyone knows just how rare CH's are ?
have only came across 3 other people who are true cluterheads. I wonder how many others are out there that doesn't know about this site.
Also, why do you always see migraine commercials but never does anyone mention clusters ?
Ran out of IMITREX last night. OUCH !! [smiley=laugh.gif] [smiley=laugh.gif]

Welcome to the board
Clusterheads make up about .001 percent of the population.
If you have met 3 C'heads (out on your own and not through someone else, through the internet or cheap advertising) you've probably met 3 more than most us.
There are probably thousands out there that do not know about this site. For many reasons. They don't speak English, don't have internet connection, live in a communist country, etc.
No CH commercials? There are no medicines made for clusters therefore no profit to be made.
Ran out of Imitrex..........click the 'imitrex tip' button on the left side of your screen. You can extend one shot into 2 or 3.
Good to see you here.

Title: Re: How Rare Are Clusterheads ?
Post by jonny on Nov 22^nd, 2003, 4:16pm

I prefer to be known as brain challenged.

I dont have headaches, I deal with trips to hell an hour at a time.

I would say "Brain damaged" but thats already taken ;;D

6 hour CH?.......Never happen to this 29 yr chronic, I thought I been through it all.

There is a god!! ;;D

...............................jonny

Title: Re: How Rare Are Clusterheads ?
Post by BlueMeanie on Nov 22^nd, 2003, 4:49pm

jonny.
It was actually about 4 hrs. The other 2 was just pain from the torture. (aftereffect).
Yes I agree. There should be another name other than cluster headache. Not even a headache. Headtorture more like it !! :)
Thanks for the info. Keep the faith.

Title: Re: How Rare Are Clusterheads ?
Post by Giovanni on Nov 22^nd, 2003, 5:05pm

Wish I had won the lottery instead.

>:(

Title: Re: How Rare Are Clusterheads ?
Post by eyes_afire on Nov 22^nd, 2003, 5:05pm

Hi BlueMeanie,

One time I read something in the OUCH Library that stated about 69 out of 100,000 people (0.069%) may have CH. That makes CH rather rare.

The estimated population of the United States is ~ 282,000,000. If the rate of CH is ~ 0.069%, that means we can expect that 194,580 people in the entire United States have CH. That's not many.

There may be 4000+ people who have joined the message board but there certainly aren't 4000 clusterheads here:

Many are supporters and family members
Many were people who didn't have CH
Some were salespeople or troublemakers

As for pharmaceutical companies and insurance companies.... they follow the money. Their profit margins are more important than our pain. >:(

Since our numbers are so small, please join OUCH if you haven't already. Click on the OUCH website link on the left. The only way we will be heard is through organization.

--- Steve

Title: Re: How Rare Are Clusterheads ?
Post by catlind on Nov 22^nd, 2003, 7:32pm

According to Dr. Bigal at the convention, he said that the number is anywhere from 0.4 - 1% of the population. Apparently the percentage varies based on location i.e. close to the equador is much less and further away (New England... *ahem* Jonny's there ;) ) is closer to 1%. Either way, the number is small.

As for the name, my doc hit the nail on the head (no pun intended) last week when she said "I feel for you, you suffer from a debilitating DISEASE".

Headache my ass. To me the difference between clusters and a headache is akin to the difference between a hemorrhoid and a tumor.

Cat

Title: Re: How Rare Are Clusterheads ?
Post by Mikey on Nov 22^nd, 2003, 7:34pm

Ditto Steve, and Cat....

Mikey, ;;D

Title: Re: How Rare Are Clusterheads ?
Post by Little Deb on Nov 22^nd, 2003, 7:43pm

Welcome Green Weenie, oops! I mean Blue Meanie [smiley=oops.gif]

Hope to see ya around. I have had CH 25 years.
Never knew until I found this site 1 year ago that anyone else knew this pain.

Happy Day!

LD

Title: Re: How Rare Are Clusterheads ?
Post by don on Nov 22^nd, 2003, 8:53pm

Quote:

Also, why do you always see migraine commercials but never does anyone mention clusters

Because there is no money in it.

The bastards.

Title: Re: How Rare Are Clusterheads ?
Post by Charlie on Nov 22^nd, 2003, 9:38pm

Welcome Blue Meanie.

Sorry you too have to deal with this horror. One reason clusters aren't mentioned is that it's too rare. Migraines are all over the place and it's worth research to drug companies. If a drug helps CH as well it's a side benefit.

CH has a terrible designation. I think of it as a syndrome that has nothing to do with what is thought of as headache.

I hope you stick around and let us know how you're doing.

Charlie

Title: Re: How Rare Are Clusterheads ?
Post by BarbaraD on Nov 22^nd, 2003, 11:28pm

Welcome Blue M. to Clusterville...

Now I got a question. Since everyone we meet either "had one of those one time" or knew someone who "had one of those one time" --- How come we're the only ones who KEEP having them over and over?

so that would make it -- 100% of the people have "had one of those one time" and about .001% of us who keep having them.

It's late and I'm OLD... I have strange thoughts when I stay up too late. Am trying the Melatonin and Magnesium tonight to see what it will do. Maybe I'll get 8 hours sleep (yeah right.... maybe?).

Anyway, 97% of all statistics are made up on the spot.

Hugs BD

Title: Re: How Rare Are Clusterheads ?
Post by BobG on Nov 23^rd, 2003, 12:25pm

Hey Barbara,
How did the Melatonin and Magnesium work for you?

Title: Re: How Rare Are Clusterheads ?
Post by HannahFroukje on Nov 23^rd, 2003, 12:52pm

I hope it works for you. Keep us posted.
Good luck all yee sufferers.

Hannah

Title: Re: How Rare Are Clusterheads ?
Post by KandyKane on Nov 23^rd, 2003, 2:02pm

I'm new here both to the message boards and CH. Have never had headaches before in my life, and then wham! two weeks ago didn't know what was happening to me. I guess I was lucky, since the first Dr. I went to, opthamologist, immediately said, "sounds like a cluster" go to a neurologist. Friend of my daughter is in med school. My daughter asked her what she thought -- immediately she said very rare but sounds like typlical cluster headaches. If anything about them is typical! Haven't been to the neurologist yet--one that specializes supposedly -- I'll ask him how rare. I had never heard of it before two weeks ago.

Title: Re: How Rare Are Clusterheads ?
Post by BobG on Nov 23^rd, 2003, 2:10pm

Hey KandyKane,
Welcome. Yep, the best thing you can do is get in to the nuerologist. While you're waiting you can read through the information at this site and the OUCH website. By the time to see the neurologist you'll know more about clusterheadaches the he/she does. Good luck.

P.S. Love your name but knowing the people that hang out here, you're going to get a lickin'.

Sorry couldn't help it. Just had to be first to jab ya. ;)

Title: Re: How Rare Are Clusterheads ?
Post by BlueMeanie on Nov 23^rd, 2003, 4:57pm

on 11/23/03 at 14:02:26, KandyKane wrote:

Hey Sweetie ! LOL
Make sure you be firm when you go. They always want to start you out slooow then finally give you something that halfway works. O2 & Imitrex are the best or me.
Good Luck & Sorry To Hear Your Here, but WELCOME !

Title: :PRe: How Rare Are Clusterheads ?
Post by BarbaraD on Nov 23^rd, 2003, 8:02pm

Hey KK - welcome to your new home - Clusterville.... the village just keeps on growing. I remember back (I'm old you know) to the day I first heard about Cluster Headaches.... Had heard of migraines, but Cluster was a whole new word to me. Took years before DJ set up this site and I found out I wasn't the only one in the world with them... Life's never been the same since.

Read all you can about them before you see the neuro. Go WELL IMFORMED. You'll find out that a lot of us have seen lots of "headache specialists" who don't know a darn thing about Clusters (although they DO know more than they did in 1998 - thanks to this site!).

Stick around, ask questions and read all you can. We're a little strange (clusters do that to you) but we're the best support you'll get anywhere. We KNOW how you feel - most of us have been there - done that. Any help you need ASK for it - someone is here 24/7.

Stick around and grab an oar and start rowing... we're all in the same boat together.....

Hugs BD

PS... Last night I didn't sleep much at all even with the Melatonin and Mag. But sometimes it has to get in your system. Have already taken my dose for tonight and am ready to crash -- spent the day with my 2 year old grandson and I'm BEAT! He took Granny to Toys r Us--- Granny has to work hard tomorrow to pay for that little excursion... :P Talk to you guys tomorrow....

Title: Re: How Rare Are Clusterheads ?
Post by sandie99 on Nov 24^th, 2003, 5:06am

Hi there, BlueMeanie! :)

CH is too rare.
I just wish some big celeb would get this thing (or one of us would become famous, lol) so CH would get some international big-time attention and we all could be cured... ;)
But, maybe I'm just a dreamer...

Best wishes & PFdays,
sandie99

Title: Re: How Rare Are Clusterheads ?
Post by Paigelle on Nov 24^th, 2003, 8:29am

Sandie is right, if only some big celebrity would have this crap, then maybe something would be done.

Maybe we should write to Oprah and all go on her show when we have a hit.

Title: Re: How Rare Are Clusterheads ?
Post by Patrick_A on Nov 24^th, 2003, 8:41am

Ohhhhh, So ya'll want Oprah to have these things. Why didnt ya say so?
BAM! Ok Oprah, How did that feel!

Patrick ;;D

Title: Re: How Rare Are Clusterheads ?
Post by BlueMeanie on Nov 24^th, 2003, 8:41am

Paigelle is right ! Maybe Oprah would possibly have a show about CH. Wouldn't hurt to at least write her and maybe she would come to this sight and see for lherself.

Title: Re: How Rare Are Clusterheads ?
Post by miCHel on Nov 24^th, 2003, 2:20pm

Hey Cat!

I have also seen that 1% statistic quite often and personnally I think it's totally off the mark.

Throughout the years, I have never met another Clusterhead face to face. I have told countless friends and co-workers about this illness and none of them ever heard of this thing, let alone knew someone who suffered from it.

I can't recall how many E.R. doctors who had no clue what CH was even though they see thousands of patients. I go to two different drugstores for my meds and the pharmacists at both these places (and they konw me very well) tell me I am the only patient they have that suffers from this.

Therefore, I have a feeling that this 1% doesn't make any sense. CH is much more rare than that. Too bad for us but then again I wouldn't wish this thing on anyone else (OK maybe a couple of people [smiley=sgrin.gif]).

Anyone else feels this 1% stat is wrong?

miCHel

Title: Re: How Rare Are Clusterheads ?
Post by Paigelle on Nov 24^th, 2003, 2:22pm

That's it! I am going to write an email to Oprah! I will have everyone sign it before I send it though.

Title: Re: How Rare Are Clusterheads ?
Post by vig on Nov 24^th, 2003, 2:27pm

I've heard the %.07 number which comes out to about 1 in 1700. So when I was at Soldier Field with ~70,000, I figured there must be about 40 of us there.

I work in a building of about 1,500, so I assume I'm the only freak here.

Title: Re: How Rare Are Clusterheads ?
Post by River_Rat on Nov 24^th, 2003, 3:17pm

HEY VIG, my guess is that the Bears must all have these things the way they play LOL

The Pack Rules

Welcome Blue Meanie and Kandy Kane, sorry you have to dance with the beast, I think they'll get these things figured out someday, 21+ years here and have never met another CH except my Dad, who ended up passing before he ever knew what they were, I do plan to meet a bunch of Clusterheads in January the 10th and 11th we are having a meet and greet in Davenport Iowa, maybe you could come.

LEE

Title: Re: How Rare Are Clusterheads ?
Post by eyes_afire on Nov 24^th, 2003, 4:11pm

Hey MiCHel,

I tend to agree with you. IMHO, that 1% number is WAY too high. There's just no way that 1 out of every 100 people I see have CH. I think the 0.069% number is probably more accurate. I believe it's based on a scientific study. If accurate, I believe that would make the frequency of CH slightly less than that of MS.

--- Steve

Title: Re: How Rare Are Clusterheads ?
Post by KandyKane on Nov 24^th, 2003, 7:46pm

RR
Davenport Iowa in January?!! Whoa! Why not someplace you can get out of once you get there? Thanks for the invite though.
KK

Title: Re: How Rare Are Clusterheads ?
Post by stevegeebe on Nov 24^th, 2003, 8:28pm

Not rare enough.

Steve G

Title: Re: How Rare Are Clusterheads ?
Post by floridian on Nov 25^th, 2003, 9:29pm

One study in Norway found 381 per 100 000 (95% confidence interval (CI) 153-783 per 100 000). Round it off to 400 per 100,000 = 4 per thousand. In San Marino, the reported prevalence was 56/100,000, or 0.56 per thousand. Another study gave the numbers 0.06 per 1000 in China and 2.4 per 1000 in the United states. Different criteria in different studies may account for some of the variation, and it may be higher in near polar places like Norway than in the mid and low lattitudes. My guestimate for the US - 1 or 2 per thousand = 250,000 to 500,000 people nationwide. Most of them undiagnosed. Combine North America with Europe, and it may be approaching a million people. Still rare compared to the big pharmaceutical markets like male pattern baldness and erectile dysfunction. But we are not alone!!