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Title: Where do 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 9:07am A question that has been buggin me for years is: The 'experts' (whoever they are?) say that the number of CHers ranges from 1 in 1000 to 7 in 1000, depending who you listen to. The number that seems to come up quite often is 3 in 1000. If that's the case, where are all of the others? Apparently 1 out of 333 people has CH. Why then, in 20yrs, have I never met one, outside of here, or for that matter, even heard of anyone outside of here? (I went for years thinking I was alone.) I'm sure that I've met at least that many people in 20yrs, but nobody I know has even met a clusterhead, other than myself. Looking at it another way, in the US there should be around 900,000 clusterheads. Here we have around 3,200 members. You'd think more than 3200 out of 900,000 would have at least thrown 'cluster headache' into google, and eventually found this place. That leaves a LOT of CHers unaccounted for. Those can't all be due to an incorrect diagnosis (or no diagnosis). As far as any CHer not seeking medical help, I can't see them suffering from this for any extended period QUIETLY. From what I've recently read, the afflicted percentage of the population is approximately equal to that of Multiple Schlerosis (sp?). I have known at least 4 people with M.S. over the last 20yrs, but no CHers. Also, if the doctors don't see that many people with CH (or people with really bad HAs, that they think may be CH), most of them don't really 'worry' about it that bad. If the doctors don't see a demand, why would the drug companies spend $$$ on R&D of new drugs ? Just wondering, who came up with these numbers, and do you think they paint an accurate picture of things? Grant |
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Title: Re: Where to 'they' get their numbers? Post by Bob P on Jan 28th, 2003, 9:42am D'Alessandro R, Gamberini G, Benassi G, Morganti G, Cortelli P, Lugaresi E. Cluster headache in the Republic of San Marino. Cephalalgia 1986;6:159-162. Oslo. ISSN 0333-1024 The prevalence of cluster headache (CH) in the Republic of San Marino (21,792 inhabitants; 10,893 men and 10,899 women) was studied, reviewing the past 15 years' medical records of neurological, ophthalmological, and otorhinolaryngological services. Further cases were searched for by means of a letter sent to each inhabitant. Control of the case collection method was performed on a random sample of 1314 inhabitants over 7 years, interviewed for possible past or present cluster headache. We found 15 cases of CH (14 men, 1 woman), for an estimated prevalence ratio of 69 cases per 100,000 population. No previous reports have been published on the prevalence of CH in the general population. |
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Title: Re: Where to 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 9:59am Bob: Thanks for setting me straight. Over the last few years, I've seen a lot of different percentages on the web. So, THAT source says the number is considerably lower (7 in 10,000). That may partially answer some of the questions, but it still leaves around 210,000 CHers in US alone. I'm still curious... |
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Title: Re: Where to 'they' get their numbers? Post by Ueli on Jan 28th, 2003, 10:25am brain_cramps, Your numbers are by a factor 10 too high. The number used by experts, including Goadsby, is usually 7 in 10'000 (ten thousand). Some go a bit lower (3) or higher (10 in 10'000). The numbers ten times too high are disseminated by careless journalists and typists. 7 in 10'000 can also be written as .7 ‰. Some simply ignore the decimal point, other think ‰ and % are interchangeable. :( Nevertheless, many clusterheads are hiding or even don't know what they have (see the average 6 years to diagnosis). As an example, my oxygen guy serves a region of about 50'000 inhabitants, but I am his only clusterhead.... Ueli |
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Title: Re: Where to 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 10:44am Ueli: As Bob pointed out (and subsequently you), I realize that my numbers WERE out by a factor of 10. But as in my second post: 300,000,000 x 7 / 10,000 = 210,000 << As an example, my oxygen guy serves a region of about 50'000 inhabitants, but I am his only clusterhead.... >> So, you are saying out of the 35 estimated clusterheads in your region of 50,000, the other 34 are 'hiding or even don't know what they have' (or have someone else delivering o2, or...). Doesn't that seem a little odd? |
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Title: Re: Where do 'they' get their numbers? Post by Peppermint on Jan 28th, 2003, 11:43am Ueli/BobP Humor me for a second - I'm not good with numbers. If the general population knew more about clusters and doctors became more knowledgeable about how to diagnose, etc., would the number of clusterheads would increase significantly? I would think this would be impossible to answer and it may put at stake conclusion that clusters are rare (I have yet to read "everything") but I wonder about this after hearing how some people came to the revelation that they actually suffered from clusters after years of misdiagnosis, or suffering in silence because there was supposedly "nothing" wrong with them or feeling they might have a mental/emotional problem.....and so on. It's a question that's been niggling at me. Are there more recent numbers or updated statistics that you know of? I am curious to find out if there has been a significant increase in CH cases, compared to the findings you mentioned -and how much can could be attributed to getting educated about clusters or whether it was simply diagnosed by a practitioner. ??? ? ('scuse me if my ignance is showin - cringing as I post) |
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Title: Re: Where do 'they' get their numbers? Post by sfdaw23 on Jan 28th, 2003, 11:59am the FACT about statistics is that: 87.3% of all statistics are made up. Hmmm :-/ |
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Title: Re: Where do 'they' get their numbers? Post by Margi on Jan 28th, 2003, 12:03pm I think the part of the equation missing here is not ALL clusterheads go to the internet for relief or to report in and be counted. I know when we met with Mike's neuro last year, he said he had 50 cluster patients here in Calgary. Not one of them uses this website. We're a city of almost 1,000,000 now and the only clusterhead we've met in person here is Grant (Brain_Cramps). Most of us realize the tendancy for clusterheads to hibernate. I think that's a big part of the reason we don't find each other. |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 12:03pm on 01/28/03 at 11:59:24, sfdaw23 wrote:
Does that FACT fall into the 87.3% that are made up, or the remainder that are true? ??? ::) |
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Title: Re: Where do 'they' get their numbers? Post by catlind on Jan 28th, 2003, 12:11pm Then turn around and factor in the neurologists that don't consider cluster headaches their own affliction, and class them as migraines, cluster migraines to be exact (as my neuro informed me that it's just another form of migraine) and you have people who are being treated for CH's that believe they have another form of migraine. Until they understand all the mechanisms that cause the various kinds of headaches from one kind of migraine to the next, and trigemimal neuralgia, temporal arteritis, vasculitis of a generic form, CH's etc etc. then I don't believe the statistics give any true picture of the population. Statistics merely give people a number to make them feel better, the numbers can be manipulated to show whatever the statistician running the survey wants to show. That's my 2 cents worth. Cat |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 12:30pm on 01/28/03 at 12:03:11, Margi wrote:
I understand your point. Myself, I would want to find out as much as possible, and if that means being counted... on 01/28/03 at 12:03:11, Margi wrote:
Margi: I'll use 800,000 for sake of argument. 800,000 x 7 / 10,000 = 560 in Calgary Now how many neuro's in the area with that number of patients that are CHers? (I've got no idea) I remember a nurse in ER at Foothills Hosp. saying she 'knew of' about 20 or 30 a year that show up in ERs at the hospitals in the city. She remembered this number since at the time (12 yrs ago) they tried to keep track of people coming in for demerol... for HAs OR "recreational use". (It seems either they have a hard time distinguishing us from 'junkies' or didn't really want to. ::) ) on 01/28/03 at 12:03:11, Margi wrote:
Hibernate without sleeping? ??? ??? ;) Guess I'm just rambling now... slow day at work!!! |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 12:36pm on 01/28/03 at 12:11:40, catlind wrote:
just curious... do you think these that are being mis-diagnosed would be included in the "7 out of 10,000" or not? if so, how did they get that number? not from the neuro's, since they aren't diagnosing them as such. (did that make sense?) if not, the number would be even higher. Not trying to be argumentative, but just bored shitless here at work. |
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Title: Re: Where do 'they' get their numbers? Post by Bob P on Jan 28th, 2003, 1:23pm The study I pasted above looked at the entire population of San marino. Went through years of past medical records and sent letters to each resident. The .7% number is a result of checking the entire population of the city. That's why I tend to go with it. It isn't influenced by misdiagnosis or web use or anything else that I can see. |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 1:31pm on 01/28/03 at 13:23:07, Bob P wrote:
Ueli: I see what you mean about '%' and '%o' (or however you do that) being 'interchangeable'. ;) Grant |
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Title: Re: Where do 'they' get their numbers? Post by catlind on Jan 28th, 2003, 1:41pm Grant, My neuro diagnosed me with cluster migraines. Where that fell when the numbers were crunched for migraines or clusters I don't know. That's what I mean about the stats being whatever the statistician wants them to be. Bob, not referring to your stats in this circumstance obviously they did a fair and unbiased census and got valid numbers. I would go with that for sure. Cat |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 28th, 2003, 1:45pm on 01/28/03 at 13:41:39, catlind wrote:
Yep. Me too. That was back in the days of fiorinal and demerol. Pretty hazy recollections ;) grant |
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Title: Re: Where do 'they' get their numbers? Post by Bob P on Jan 28th, 2003, 2:25pm Gotta watch decimal points. .07=7%, .007=0.7%, .0007=0.07% |
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Title: Re: Where do 'they' get their numbers? Post by BobG on Jan 28th, 2003, 2:56pm About the statement 87% of facts are made up on the spot. It may be true but nobody says which 87% is true. The top 87% or the bottom 87%. I'd say the statement is about 46% incorrect, 33% gets a maybe and 57% is a "Fuck me! I don't know". I once had a doctor tell me that the first thing they learn in medical school is to forget 70% of everything taught in medical school, it's all guess work. The problem is that the teachers don't know what 70% to forget. ;) |
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Title: Re: Where do 'they' get their numbers? Post by Ueli on Jan 28th, 2003, 3:19pm I did a quick search on the incidence of clusters with Google, and some real 'gems' showed up. The most 'outstanding' was from the Inland Neuroscience & Spine Center, Spokane, Washington (http://www.inlandneuro.org/cluster_headaches_full.htm). They say 0.4% of men and 0.08% of women have clusters, another example of careless arithmetic. :( But how they introduce these numbers is really remarkable: As with many conditions that do not absolutely require medical intervention, the exact incidence of cluster headaches is unknown. Thank you very much! :o I found lots of references to: Swanson J W, Yanagihara T, Stang P E, O'Fallon W M, Beard C M, Melton III L J, Guess H A. Incidence of cluster headaches: a population-based study in Olmsted county, Minnesota. Neurology 1994; 44:433-437 or Neurology 1992; 42:1657-62 (both references found) Has anybody old volumes of 'Neurology' at hand? Ueli |
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Title: Re: Where do 'they' get their numbers? Post by catlind on Jan 28th, 2003, 4:00pm Old volumes of neurology? I can give you the name of the neuro that lives in Watertown, I think he qualifies. :P Cat |
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Title: Re: Where do 'they' get their numbers? Post by eyes_afire on Jan 28th, 2003, 6:20pm This is an interesting thread. I would tend to believe that the figures from the San Marino study are probably close to the mark. What I know: 1. I have never met another clusterhead. 2. (Except for my current neuro) I have never met anyone who even knew what the fuck a cluster headache was (until I edumacated them). 3. Very soon, #1 and #2 will no longer be true. Thank god all my un-valuble knowledge will be lost. |
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Title: Re: Where do 'they' get their numbers? Post by Not4Hire on Jan 28th, 2003, 7:41pm on 01/28/03 at 15:19:49, Ueli wrote:
...and you were askin' last night in chat, what would you SPEAK about at the BeastCon2003......... ??? ...i rest my case........ DO IT..wiseoleowl! |
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Title: Re: Where do 'they' get their numbers? Post by Mark C on Jan 29th, 2003, 11:52am Imagine if all Clusterheads wore the same kind of shirt on a particular day. Would we meet another CH then? I do not know I talk to clusterheads daily, I just have never had an attack with one. Its not something we wear on our sleeve....so how would we know if the guy handing us our fries at McDonalds is a clusterhead? HMMMMMM, Mark |
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Title: Re: Where do 'they' get their numbers? Post by Mr.Happy on Jan 29th, 2003, 12:08pm Here's ONE Mullet Head you'll recognize in the crowd: http://www.drfeller.com/pix/nochpin.jpg |
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Title: Re: Where do 'they' get their numbers? Post by Peppermint on Jan 29th, 2003, 12:19pm Mark. This is exactly what has been going through my mind. I talk to friends and co-workers about the info I'm gathering and just to ask if they know of anyone who suffers from clusters. One of my co-workers thinks her sister could a clusterhead. She described everything to me without bias just because I mentioned "bad" headaches to her (I was talking about my friend who is a clusterhead). It sounds very much like she is - of course she needs to be diagnosed. I printed out some info for her and gave her the website address so that they can read up. It seems almost taboo to talk about it... her family... well I'm sure you know - they think its all in her "head" so to speak. This was a couple of months ago. It is a not exactly an easy subject to broach. And when I press... well. Her sister has not exactly been responsive. This is what I'm talking about. I wonder how many others have similar situations. |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 29th, 2003, 2:07pm on 01/29/03 at 11:52:42, Mark C wrote:
I thought we'd be easy to pick out... - bruises on one side of the head - one eye almost closed - really short temper ... |
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Title: Re: Where do 'they' get their numbers? Post by Roxy on Jan 29th, 2003, 2:31pm Quote:
When the new neuro checked me out....he said my left eye was starting to droop somewhat from the ch's. Just what I've always wanted to be: A droopy eyed, bad tempered.......well, the bitch was a given.....LOL ;D ;D ;D ;D You can pick me out of a crowd...... |
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Title: Re: Where do 'they' get their numbers? Post by Tony_M on Jan 29th, 2003, 4:03pm My dad was diagnosed with migraines though I now know he had CH. On the oxygen thing. Even my family doctor had no idea about oxygen until my new neurologist recommended it 6 months ago. This same neurologist is the first one to EVER tell me I had CH and not migraines. Every doctor I have ever talked to when I informed them I had attacks during the night and it would wake me up they would shake their head and they had no idea what I was talking about. My new neurologist showed me the CH description in his desktop reference book and EVERY symptom was there, including the sleep problems. When I tell people I suffer headaches I very often hear that they, or there brother, mom or whoever also suffers migraines/headaches. With the abundance of doctors I have ever seen misdiagnosing me I am not surprised at all that most people are as well misdiagnosed. I feel almost embarressed to tell people I am so disabled because of my headaches. They would rather see me with a REAL illness. So, maybe people don't mention it so much. |
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Title: Re: Where do 'they' get their numbers? Post by jonny on Jan 29th, 2003, 4:14pm on 01/29/03 at 11:52:42, Mark C wrote:
I sent 300 bumperstickers out to the US, Italy, England and Canada 3 years ago that read "CLUSTERHEADACHES.COM" and only know of two clusterheads meeting because of them. ...............................jonny |
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Title: Re: Where do 'they' get their numbers? Post by K. on Jan 29th, 2003, 4:31pm The mention in an earlier post about having a day where all clusterheads wore the same kind of shirt is a great idea! I have only met one other clusterhead in my life and until then thought I was f***ed up in the head because nobody had a "name" for what I had...therefore it didn't exist. Can you imagine being somewhere and actually seeing someone wearing that shirt? No matter where I was or what I was doing...I would literally run to them. You would be looking at that one other person that actually has a clue what suffering from CH is all about. Someone who understands the pain. It gets so tiring to go to doc after doc who doesn't know shit and doesn't give a shit. That's why the "numbers" are so screwed up. Yet the numbers are what we need to increase awareness so that other CH sufferers can be properly diagnosed and stop suffering in silence. If this could happen...at some point the numbers may actually have some significance. and Roxy....until you mentioned the droopy eye thing...I really did think maybe I was the only one having that problem... K. |
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Title: Re: Where do 'they' get their numbers? Post by Linda_Howell on Jan 29th, 2003, 4:57pm I don't have an answer to the question you posed, just a comment. I e-mailed more than 14 people for a get-together in Northern calif. Nothing official, just for lunch to meet another clusterhead. I got 4 responses. At the end of Feb. the five of us and their supporters who ARE interested are gonna meet. hmmmmm. The other 10 were from the "where we live archives" so why do you think they took the time to post to it, but don't want to spend any time sharing info and stories with one another? LindaH |
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Title: Re: Where do 'they' get their numbers? Post by brain_cramps on Jan 29th, 2003, 5:02pm on 01/29/03 at 16:57:25, Linda_Howell wrote:
My guess... their out-of-cycle and either "don't want to think about it right now" or "don't need help right now" just a guess... grant ps...wish there was that many around here! |
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