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        New Message Board Archives >> 2004 Posts >> What are the Odds?
        
(Message started by: buckeyescooter on Jul 13th, 2004, 4:00pm)
Title: What are the Odds?
Post by buckeyescooter on Jul 13th, 2004, 4:00pm
I recently found out, (in the last 6 months), that my best friend since the 7th grade, who was best man at my wedding and vice- versa, who is Godfather to my children and vice-versa, has been diagnosed with Cluster fucking headaches. As of now he's mostly a nightime sufferer with the rare ha during the daytime.
     If the less than one percent thing is accurate, what are the odds? Any math majors here? Anybody else ever have a close friend get these?
      I'm trying to get him to come here but so far no luck. He's one of those guys that doesn't really believe in Western medicine.....although to his credit, he did figure out the vigorous exercise way to sometimes abort the attack on his own.....for what it's worth he does jumping jacks.  
Title: Re: What are the Odds?
Post by thomas on Jul 13th, 2004, 4:06pm
My good friend Rick, who is in the pictures from the New Years Eve party at my house has them also.  Vig and Alienspacebabe, got to meet him.  I live in a town of 7000 people, go figure. :-/
Title: Re: What are the Odds?
Post by CarrieBethRN on Jul 13th, 2004, 4:07pm
I've got one too.  My dad's best friend got them in college and went chronic for 9 years and then they mysteriously went away in 1980 and haven't come back yet.  When I started getting them last year, I called him up and described what was going on.  He said he'd forgotten all that stuff and he felt one coming on just listsening to me talk about it!!  Really good guy, too.

Carrie :)
Title: Re: What are the Odds?
Post by Mr. Happy on Jul 13th, 2004, 4:42pm

on 07/13/04 at 16:06:00, thomas wrote:
I live in a town of 7000 people, go figure. :-/

In the U.S.: Exact prevalence unknown. Kudrow estimated 0.4% for men and 0.08% in women (http://www.clusterheadaches.org/library/general/overview.htm)
Actually, if those percentages are even remotely correct, we should be bumping into each other pretty often. A town your size should have between 6 and 28 Clusties running rampant.

Where are they all hiding?
RJ
Title: Re: What are the Odds?
Post by floridian on Jul 13th, 2004, 4:47pm
The odds of any friend (non-blood relative) having clusters is around 1 in 250.

If you have a thousand friends, approximately three of them 'should' have clusters. But how many are diagnosed and can put a name on it?

Among blood relatives, the percentage goes up, but because the numbers are lower, it is more hit and miss.  
Title: Re: What are the Odds?
Post by Superpain on Jul 13th, 2004, 5:56pm

on 07/13/04 at 16:47:02, floridian wrote:
The odds of any friend (non-blood relative) having clusters is around 1 in 250.

If you have a thousand friends, approximately three of them 'should' have clusters. But how many are diagnosed and can put a name on it?

Among blood relatives, the percentage goes up, but because the numbers are lower, it is more hit and miss.  

[smiley=huh.gif]
I thought it was something like 1 in 164,000....???
Title: Re: What are the Odds?
Post by Prense on Jul 13th, 2004, 6:09pm
Well, if it is .4% men and .08% women then there are 690,367 folks in the US with CH.  572,149 are men and 118,218 are women as of the 2003 US census estimates.

http://www.census.gov/main/www/popclock.html

...and there's only 6,915 members on this board.

*Edit* Those percentages still represent a ratio of 5 : 1.
Title: Re: What are the Odds?
Post by Prense on Jul 13th, 2004, 6:40pm

on 07/13/04 at 17:56:14, Superpain wrote:
[smiley=huh.gif]
I thought it was something like 1 in 164,000....???


Based on the numbers Randy provided, it is 1 in 421 that have CH...  In the US anyway.
Title: Re: What are the Odds?
Post by Ueli on Jul 13th, 2004, 7:11pm
In the report Happy linked to Kudrow is quoted to have said "0.4% for men and 0.08% for women". I think somewhere on the way was a careless typist, that didn't know the meaning of a decimal point or the difference between % and 0/00, that made Kudrow's numbers 10 times larger.
Another example of the shoddy rendering from the same source: "In an extensive study of 100,000 inhabitants of the republic of San Marino, prevalence of 0.07% was encountered." Although the prevalence is reported correctly, how the heck could they study 100,000 inhabitants when in San Marino live only 28,503 people (estimate of the CIA for July 2004) (http://www.cia.gov/cia/publications/factbook/geos/sm.html)   [smiley=huh.gif]
Note, the San Marino study lies some time back, before the IHS definition of clusters, but it included every person living there.

In the excellent article by Goadsby and Matharu (http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature) give a value of 0.1%, that is 1 in 1000 - close enough to the San Marino numbers.

In our region live about 40,000 people. So there should be about 40 clusterheads. But beside my sister I only know of 2 others, I wonder where the others are hiding.


PFNADs
Ueli                 [smiley=smokin.gif]


Edit for unprintable character 137 (promille).
Title: Re: What are the Odds?
Post by alleyoop on Jul 13th, 2004, 7:47pm
Think about the # of undiagnosed cases! Hell, I wonder how many people out there have CH and have never even seen a MD about it! On the face of it, that sounds preposterous. Yet, I'd be willing to bet that it's a lot more prevalent than one would think!

Just a thought...................

............................alley
Title: Re: What are the Odds?
Post by cootie on Jul 13th, 2004, 8:53pm
The undiagnosed cases go to migraine conventions.........sad but possibly true !!  
Title: Re: What are the Odds?
Post by alleyoop on Jul 13th, 2004, 9:14pm

on 07/13/04 at 20:53:42, cootie wrote:
The undiagnosed cases go to migraine conventions.........sad but possibly true !!  



Possibly. Believe it or not there are actually a lot of people out there that still don't have computers! There are also people out there that have CH and never take it past their GP. I've got two brothers with CH. One of them, although he's been dealing with it for 20 yrs, has never gone past his GP! He has never been diagnosed, but there's no doubt he has CH. I just think there's a lot more of us out there than most people realize!

.....................................alley 8)
Title: Re: What are the Odds?
Post by Big Dan on Jul 13th, 2004, 9:24pm
... even sadder...


How many misdiagnoses, or undiagnosed end up in the suicide statistics...

Just another case of 'depression'...




-Big Dan
Title: Re: What are the Odds?
Post by buckeyescooter on Jul 13th, 2004, 10:05pm
I was 19 years old working at a summer camp as a counselor and getting hit about every other day. We were on some sort of field trip with kids and I walked into an Rx to buy yet some more "sinus" medication, when I noticed this little paperback at the register. It said something like Got Headaches? I thought to myself fuck yeah I do, so I looked at it. This book had maybe 50 pages and about a half of one page devoted to clusters. I knew instantly thats what I had.....and the misdiagnosis was over. The journey however, continues.
Title: Re: What are the Odds?
Post by floridian on Jul 14th, 2004, 9:17am

on 07/13/04 at 19:11:35, Ueli wrote:
In the report Happy linked to Kudrow is quoted to have said "0.4% for men and 0.08% for women". I think somewhere on the way was a careless typist, that didn't know the meaning of a decimal point or the difference between % and 0/00, that made Kudrow's numbers 10 times larger.
Another example of the shoddy rendering from the same source: "In an extensive study of 100,000 inhabitants of the republic of San Marino, prevalence of 0.07% was encountered." Although the prevalence is reported correctly, how the heck could they study 100,000 inhabitants when in San Marino live only 28,503 people (estimate of the CIA for July 2004) (http://www.cia.gov/cia/publications/factbook/geos/sm.html)   [smiley=huh.gif]
Note, the San Marino study lies some time back, before the IHS definition of clusters, but it included every person living there.

In the excellent article by Goadsby and Matharu (http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature) give a value of 0.1%, that is 1 in 1000 - close enough to the San Marino numbers.

In our region live about 40,000 people. So there should be about 40 clusterheads. But beside my sister I only know of 2 others, I wonder where the others are hiding.


PFNADs
Ueli                 [smiley=smokin.gif]


Edit for unprintable character 137 (promille).


Ueli,

I follow the San Marino population goof, but not the 0.4% - isn't 0.4% 4 pro mille or 4 per thousand??  While that is higher than 1 per thousand,  it could be accounted for by the fact that different countries were studied, and sampling error is always present.  Estimating rare events is always an iffy thing, but these two estimates are not that far off - well within an order of magnitude.
Title: Re: What are the Odds?
Post by floridian on Jul 14th, 2004, 9:42am
Here's a Norwegian study that found 558 / 100,000 with clusters, which equates to 5.58 per thousand or 0.558%.  Those odds are for men. If your best friend is a female, the odds would be somewhat lower.  

Study critique: Norway probably has a higher rate of CH than most other places due to the high latitude.  This was a relatively small sample, but a very high percent of the population were examined directly using a consistent methodology.  The confidence interval statistic indicates that it is 95% certain that the true rate of clusters in this area was between 1.5 and 7.8 cases per thousand. It was geographically constrained (to a dale or valley); the historical isolation of some dals in Norway allow for an increase in recessive genes.  


Quote:
Cephalalgia. 2003 Sep;23(7):528-33.
   
   Cluster headache prevalence. Vaga study of headache epidemiology.

   Sjaastad O, Bakketeig LS.  Vaga Communal Health Centre, Vagamo, Norway.

   In the Vaga study of headache epidemiology, a search was made also for cluster headache. Of the available 18-65-year-old dalesmen, 1838 (88.6%) could be examined personally (O.S.) - 51.3% females and 48.7% males. Based on current International Headache Society criteria, cluster headache seemed to be present in seven dalesmen, one female and six males (corresponding to a total prevalence of 381 per 100 000; 95% confidence interval (CI) 153-783 per 100 000). Except for the female gender, the female case was fairly typical. In one case, there were short-lasting bouts ('minibouts'). It was felt that this also was a genuine case of cluster headache. If one excluded the latter case, there would be one female and five males [a prevalence of 106 per 100 000 for females, and 558 per 100 000 for males, giving a prevalence in the total population of 326 per 100 000 (95% CI 120-709 per 100 000)]. The confidence interval was considerable. This study therefore does not give a clear indication as to prevalence.
Title: Re: What are the Odds?
Post by ExplodingEyeBall on Jul 14th, 2004, 1:02pm

on 07/13/04 at 21:24:14, Big Dan wrote:
... even sadder...


How many misdiagnoses, or undiagnosed end up in the suicide statistics...

Just another case of 'depression'...




-Big Dan


It's interesting that you mention this.
Check this out.
http://abcnews.go.com/sections/GMA/GoodMorningAmerica/GMA010530Headaches_cluster.html

http://xtramsn.co.nz/health/0,,8065-1669781,00.html

http://www.ucdmc.ucdavis.edu/ucdhs/health/a-z/99HEADACHESCLUSTER/doc99severity.html

http://www.umm.edu/patiented/articles/how_serious_cluster_headaches_000099_4.htm

All of these articles mention something about suicide headaches and people contemplating suicide while suffering one.
Title: Re: What are the Odds?
Post by E-Double on Jul 14th, 2004, 1:25pm
alleyoop
Quote:
Think about the # of undiagnosed cases! Hell, I wonder how many people out there have CH and have never even seen a MD about it! On the face of it, that sounds preposterous. Yet, I'd be willing to bet that it's a lot more prevalent than one would think!

Just a thought...................

............................alley




No doubt!!
I went 9 years just without diagnosis. Just would deal somehow. Started my Super-senior year of college and keeps returning every spring and fall.
Finally went last year cause I got a few daytime hits and doc said allergies. Dumbass ::)
This cycle finally my fiance made me get help. 3 diff neuros now diagnised me. CH.
To think that I sucked it up for so damn long. Crazy but there are quite a few if not many here that did the same.

Be well,
Eric


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