Why are cluster headaches considered so rare? It seems like a lot of people actually have them. Why are doctors not familiar with them or have never even heard of them?

Roughly one-tenth of one percent of the population.

It's sometimes referred to as an "orphan disease" because it's so uncommon. And docs don't spend time learning about disorders which they rarely encounter.

I asked my Neuro this question and he said that he remembers only about half of a page of information concerning CH's during his entire education. I don't know why its that way.... but its a little discouraging.

jfields87 wrote on Apr 2^nd, 2013 at 8:44am:

I asked my Neuro this question and he said that he remembers only about half of a page of information concerning CH's during his entire education. I don't know why its that way.... but its a little discouraging.

You hit the nail on the head their Jerry...it's why we stress the importance of trying to find a headache specialist. It's just too complex a field for GP's and even nmost neuros.

Joe

Bob Johnson wrote on Mar 30^th, 2013 at 9:30pm:

It's sometimes referred to as an "orphan disease" because it's so uncommon. And docs don't spend time learning about disorders which they rarely encounter.

It's listed with the National Organization of Rare Diseases (NORD). I've heard estimates of anywhere from a few hundred thousand to a few million in the U.S. There's thousands of other disorders on the NORD list. Life isn't long enough to know everything about everything. I went to a headache neuro at UCLA to get an O2 script. He didn't know how to write one, and he was an old-timer. I asked at the desk how many CH patients the office saw and she answered about 12.

Guiseppi wrote on Apr 2^nd, 2013 at 12:07pm:

jfields87 wrote on Apr 2nd, 2013 at 8:44am: I asked my Neuro this question and he said that he remembers only about half of a page of information concerning CH's during his entire education. I don't know why its that way.... but its a little discouraging. You hit the nail on the head their Jerry...it's why we stress the importance of trying to find a headache specialist. It's just too complex a field for GP's and even nmost neuros. Joe

That is also the reason to educate yourself, so you can in turn educate your Dr.  If your Dr will not work with you and learn from you FIRE HIM!  (With the caveat of a handful of Dr's in the world who are actually knowledgeable and even expert in CH.)  I love my Neuro, because he knows he doesn't know, and he's not afraid to work with me and tailor what I want to try to fit my needs.  He also brings in students when I'm going to be there so I can teach them.  Had to fire four though before I found him.

Jerry

Medical education in headache
Posted 9/26/07, MEDSCAPE   

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Abstract statements from a study of headache education in medical programs. Second para. specific to neurological residency training. Gives good idea of why it's difficult to find a sharp doc.
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"Objective. To explore the extent of headache education received by medical students and residents.
Background. Headache is a common, often severe, and sometimes disabling problem. However, 49% of sufferers do not seek professional treatment -- of those who do, only 28% are very satisfied. One possible reason is limited education of physicians about headache.
Methods. Surveys were sent to all allopathic and osteopathic medical schools, 200 family medicine residencies, and all 126 neurology residencies. Information requested included the amount and perceived adequacy of headache education and any plans to increase headache education.
Results. Response rates were 35% to 40%. MEDICAL SCHOOL LECTURE HOURS RANGED FROM 0 (4%) TO >5 (24%) WITH 92% HAVING NO PLANS FOR AN INCREASE IN HEADACHE EDUCATION. FAMILY MEDICINE RESIDENCY LECTURE HOURS RANGED FROM 1-3 (30%) TO >5 (34%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >5 (41%), WITH 88% OF PROGRAM DIRECTORS HAVING NO PLANS FOR INCREASE. NEUROLOGY RESIDENCY LECTURE HOURS RANGED FROM 1-3 (11%) TO >5 (64%) AND CASE PRESENTATIONS FROM 1-5 (23%) TO >10 (57%), WITH 80% HAVING NO PLANS FOR INCREASE.
Conclusion. Undergraduate medical education in headache is limited. Despite medical schools perceiving their training as adequate, both neurology and family practice residency program directors believe entering residents are inadequately prepared in headache upon entering the program."

"Neurology Residency Programs
Neurology residency program lecture hours varied from 1 to 3 hours (11%) to >5 hours (64%) (Figure 2). The number of case presentations ranged from 1-5 (23%) to >10 (57%) (Figure 6). Forty-two (95%) of program directors believed that their headache education was adequate (Figure 4). Interestingly, 20% of neurology programs indicated plans to increase training in headache management. Similar to the family practice programs, 68% of the program directors believed that new residents had inadequate knowledge about headaches upon entering the program while only 11% of the program directors believed that their residents were well informed about headache."

Callico wrote on Apr 4^th, 2013 at 6:41am:

That is also the reason to educate yourself, so you can in turn educate your Dr.  If your Dr will not work with you and learn from you FIRE HIM!  (With the caveat of a handful of Dr's in the world who are actually knowledgeable and even expert in CH.)  I love my Neuro, because he knows he doesn't know, and he's not afraid to work with me and tailor what I want to try to fit my needs.  He also brings in students when I'm going to be there so I can teach them.

This also illustrates something really important. Even though we know a lot about CH and can educate our doctors (and their students) about CH we still need to work with them as we are not medical doctors. They still have the detailed training and experience that takes that knowledge and applies it with the benefit of all their skills to give us the suitable treatments taking into account our medical history.

Mike, that is what I was trying to get across, but you did for me.  We do have to work with them to make things happen.  That is what I love about the relationship I have with my Neuro now.  After having to fire four for total incompetence it is refreshing to have a Dr, who while not a CH expert, is willing to work with me and to research what he doesn't know when I ask for it.  I have had one who insisted on prescribing two meds that I had violent allergies to, and who got PO'ed when I refused to take them.  They weren't even first line CH meds.  I fired another because he wanted to put me on 1200mg of Verap.  i was struggling at 780.  This is the type of thing I get upset with Dr's over.  I've seen it time and time again on this board and on FB when talking with newbies who are being totally maltreated by a Dr who will not listen to them.

When you have a good Dr who will work with you, who will listen to you and discuss options with you, not at you, it is a great relationship that should be cultivated to the max.  On the other hand, there is no more helpless feeling than floundering around with no real direction because you are dealing with a fool that thinks MD stands for Most Devine.  Been there, and have the scars to show for it.

Jerry

That's when I have turned and walked in the opposite direction: when a doctor treats me as a condition rather than as a human being.

At one of our conventions, a Neurologist told us that doctors get exactly 5 hours of training on the subject of headaches in Medical school.  5 hours!  and that is for all kinds of headaches, not just CH.  It's no wonder we have such a hard time finding a doctor who has even heard of our condition, much less treating it correctly.  :-[

My Neuro has gotten more than 5 hours of training from me alone. The man knows his stuff  ;)

I think cluster may be tad more common than current projections place it, but it definitely isn't a common disorder. I've never personally known anybody else who suffers from it, and 99% of people that I've told about it had never heard of it before I told them.

Brew wrote on Mar 30^th, 2013 at 6:28pm:

Roughly one-tenth of one percent of the population.

That would make nearly 314,000 cases in the USA. Doesn't sound that rare to me.

Quote:

Doesn't sound that rare to me.

Okay. What would sound rare to you?

It is roughly the same incidence rate as multiple sclerosis.

About 1 in 1,000.

Semantics?

Brew wrote on Apr 24^th, 2013 at 10:06pm:

Quote: Doesn't sound that rare to me. Okay. What would sound rare to you? It is roughly the same incidence rate as multiple sclerosis. About 1 in 1,000. Semantics?

I was just commenting that 314,000 cases is quite a lot. Same as MS, yet MS isn't considered rare.

Potatoe. Po-tah-toe.

Much also depends on how many squillion dollars can be milked from any particular disease.

Breast cancer is primarily a women's problem and a major income generator for the entire medical and pharmacological industries, psychologists, prosthetologists, therapists, bra-makers and daytime television.

Prostate cancer is far, far more prevalent and dangerous but there's no money to be made from it. Sorry fellas, just die quietly.

There's no money to be made from CH, either, so we don't exist.