am I thick or does this mean 1 out of a thousand? that doesn't strike me as that rare? If this is the case one would think the medical community would be more familiar/no?

Yes, I believe that would be 1 out of a thousand.  I am going to say I doubt that number is right.  I doubt 1 out of a thousand get true cluster headaches.  Never met anyone who gets them, never met anyone who talks about someone they know having them.  Correction--one person I know who get migraines met a CHer at a headache support group.
You're not likely at all to meet someone who gets them.  I would say they are rare.

Figures often beguile me, particularly when I have the arranging of them myself; in which case the remark attributed to Disraeli would often apply with justice and force: "There are three kinds of lies: lies, damned lies and statistics."- Mark Twain's Own Autobiography: The Chapters from the North American Review

Have no idea where the statistics come from....don't believe them either....

I'm 54...have met thousands...and besides ch.com only one who even knew what ch was (he had a friend who had 'em.)

Personal experience: only one doc who even knew what ch was....and she is a headache specialist in a headache clinic...told me she had only 3-4 cluster patients.

One neurologist who had no idea but was fascinated. He asked a ton of questions, even brought in an intern to listen...genuinely interested. Was glad to oblige as it might mean help for a fellow clusterhead.

Not one single pharmacist...though one who had the same interest as the above neuro...asked a ton of questions also...there's a few more now as I have participated in the Wingate epatient program.

It's an orphan disease...the best advocates are right here on ch.com...."the Lord helps those that help themselves"

Best,

Jon

I have not met anyone familiar with CH either!  Took me 17 years to get diagnosed and then, only because my PCP went to a headache in-service where they discussed different headaches.  Once she reviewed my symptoms she recognized them and sent me to a neuro.  Fortunately, he treats a handful of other CHers although I have been educating him re strategies from here, like the energy drinks and how much O2.  He knows about the abortives and preventatives.  My pharmacist, unfortunately, is not so aware nor interested.  My chiro is interested and I have given him tons of information.  I suspect that CH is more rare than .1%! 

"Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women."


"As of 26 December 2009, the Earth's population is estimated by the United States Census Bureau to be 6,792,400,000."

So with those numbers..6,792,400,000 x .1 = 67,924,000.

Looks to me as if they are saying 1 in every 1,000.

Can't say I believe that for a minute!


So, yes, they "claim" 1 in every thousand has this disease.

My neurologist claimed that he has 50 or so CH patients round and about so maybe CH congregate around Bradford!!  On the other hand... perhaps he was bluffing because I said I thought he was wrong about what was worth trying and what wasn't.

In the real world I know one woman who's heard of it because a friend of her suffers and another who knows because she gets headaches and did a lot of headache condition research on the interwebs.  My housemate had heard of it in a kind of badge of honour pain rite thing (teenage boys can be perculiar).

On the other hand, I never talk about mine with people who don't already know.  I've read other people on here saying that too.  Maybe there's more of us and we all know each other, we just don't chat about it.  :P

I seriously doubt that statistic.  Add a couple of zeroes before the 1 and maybe.  I've had them for over 30 yrs, was diagnosed only because my Dr's sister had been diagnosed (after years of looking) the previous week.  He had no clue about treatment.

Until I found this site about 8 yrs ago I had never heard of another clusterhead, nor had I ever had a Dr who even knew what they were. 

To argue for the statistic quoted is the same as trying to prove a negative.  It is not possible.

Jerry

Lacey wrote on Dec 26^th, 2009 at 10:16pm:

"Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women." "As of 26 December 2009, the Earth's population is estimated by the United States Census Bureau to be 6,792,400,000." So with those numbers..6,792,400,000 x .1 = 67,924,000. Looks to me as if they are saying 1 in every 1,000. Can't say I believe that for a minute! So, yes, they "claim" 1 in every thousand has this disease.

6,792,400,000 x .1%  = 6,792,400

Sorry, but I have been teaching math and percentages are such a point of contention.

LOL!  yep, you are absolutely correct. 

So, does that mean 1 in every 10,000??

That honestly sounds like a truer stat, but i still dunno if i believe its that common.

Lacey wrote on Dec 26^th, 2009 at 10:57pm:

LOL!  yep, you are absolutely correct.  So, does that mean 1 in every 10,000?? That honestly sounds like a truer stat, but i still dunno if i believe its that common.

I didn't used to think it was all that common and I still do not believe there is a CH'r on every corner, but there are more of us out there than ya think. Not many of us wear the ID badge.  ;D

Racer,

You could be right, as I know I RARELY tell anyone about my headaches--some close friends (although not my closest) I've had over the years I have not told or have just said I get bad headaches but for some reason just did not want to disclose the name of them or the details.
I will say that the people who deliver oxygen seem to be quite familiar with cluster headaches.
I guess you have to go to the source so to speak--you want someone who knows about CH go to the oxygen people!

Lacey wrote on Dec 26^th, 2009 at 10:57pm:

LOL!  yep, you are absolutely correct.  So, does that mean 1 in every 10,000?? That honestly sounds like a truer stat, but i still dunno if i believe its that common.

NO.  .1% by definition is one in a thousand.

Either way, it is tough to tell.  Who knows what the margin of error is on that stat or the sample set they used.

In fact, we should all be hoping the STATS show it to be more common!  The less rare they think it is, the more likely a drug company will want to do a trial to find a "cure"!

thats 1 out of 100 thousand people

thats 1 out of 100 thousand people

anthony g wrote on Dec 27^th, 2009 at 7:09pm:

thats 1 out of 100 thousand people

Sir, .1% is 1 in every thousand people, not 100,000.

10% = 1 in 10
1% = 1 in 100
.1% = 1 in 1,000

Anyway, that number seems very high.

The latest stats I've read are like 30 to 60 people per 100,000 get CH.  SO it is less than .1% of the population that gets CH.  This is why it is sort of an orphan disorder - not enough people get it to make it (profit-wise) worth the cost, for drug companies to develop CH specific meds.  It is one of the rarer forms of primary headache.

After years with clusters, I have only met one person other than my family members that have them.

Yep, even my neuro, who runs a headache clinic, only has a very small number of CH patients.  The vast majority of her patients suffer from migraines.

It seems the figures change year to year Depending on the survey location, time of year, etc..

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"The epidemiology of cluster headache is virtually unknown ....... The overall age- and sex-adjusted incidence was 9.8 per 100,000."

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The overall age- and sex-adjusted incidence decreased from 9.8/100,000 person-years in 1979-1981 to 2.07/100,000 person-years in 1989-1990.


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"Our analysis revealed a relatively stable lifetime prevalence, which suggests that about one in 1000 people suffers from cluster headache"

And so we settle on 1 in 1000 to have something to go by.

now I'm seeing stats (on line etc.) that say 1 in 250,000

I think CH is very common. I've had dozens of fellow workers, friends, neighbors and more say........
"I had one of those once."

BobG wrote on Jan 5^th, 2010 at 9:55pm:

I think CH is very common. I've had dozens of fellow workers, friends, neighbors and more say........ "I had one of those once."

Haha!  Me, too!  And they say that Excedrin Migraine takes care of theirs!  Forgive them, for they know not what they say.

Would be interesting to see where that .1% statistic comes from &  what they used as criteria.  Personally, I think the number would be closer to 1 in 10,000.

   I lived in a town of 18,000 people, and  I actually had a close friend in that town who also had them.
   How strange is that. 

In the last few months though, I found out I have an Aunt who has them, and I never knew it. so..........

Who Knows....there could be one right on your street, and you may never know it. 
    

Well I knocked the stats up.. In Gladewater (pop 6000) there were 3 of us (that I know of) and now in Linden I've found another one (pop 2000) We even have the same neuro. That's just the ones I know about...

My neuro treats about 45-50 Chers. A lot of them I"ve sent to him because he knows what the heck he's doing with them. He usually tells me when he gets a new ch patient (not the name, just that he has a new Cher). He usually refers them to this site and has permission to give them my name and phone number, so I've met quite a few Chers around the East Texas area as well as around the country.

I really think there's more of us than the stats show, but who knows. I'm a woman so I probably don't even have these darn things... :)

I believe if we included all those who are misdiagnosed, the number would be higher.

I never heard of a CH till my neurologist told me about them.  Speaking with a few people here at work that suffer with migraines, they were amazed that something worse could exist.  At least Dr. O'Hanian and Dr. Heller knew what Cluster headaches are and how to treat them.

Didn't I read somehwhere that the average time between initial CH onset and correct diagnosis was approx 6 years?  I know it took me close to that.  If this figure is somewhat close to correct how could anyone possibly come up with an accurate survey of CH sufferers!  Maybe they have a magic formula that lets them guestimate the number of us that are still lost out their in la la land and don't know what the hell we have yet...

DD

A long time ago, I worked with a guy who had killer headaches - in retrospect they may have been CH.  His doc had him trying a suppository (no fooling).  This was long before I had my first hit.

The guy up here who delivered my first O2 up here had apparently run into this (he told me my doc didn't know squat when he ordered the teeny nosy things).  That, plus a few neighbors on this site, puts it around 1 in 10K for the area.

It is rare enough that most GP's will probably not experience one of us in a career.  It is frequent enough that most headache docs should have one or two of us at any point in time.

Jon

Quote:

His doc had him trying a suppository (no fooling).

I believe Cafergot is still available in this form. Maybe not as fast as an injection, but much quicker than a pill.

Fischera M, Marziniak M, Gralow I, Evers S.: The incidence and prevalence of cluster headache: a meta-analysis of population-based studies. Cephalalgia. 2008 June; 28(6): 614–618.

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n.b.: During 1992/3 449 monks on Mount Athos didn't have cluster headaches! ;)