What's In A Name ? long - maybe some helpful ideas

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Posted by gary g ( on September 12, 1999 at 11:59:52:

In Reply to: The term "cluster migraine".......where did it come from?? posted by Cathy on September 12, 1999 at 09:25:33:

Cluster Migraine = just another earlier attempt at a descriptive name for this disease - we all tend to vigorously reject it now, because we understand the HUGE differences between the two diseases which that name mixes together

In many med books, when you read the section re: any particular disease, it will be listed under that author's favorite name, if there are more than one names in use in the professon

it will often ALSO list other names by which the same disease has been described - one CH article I have, c. 1970, lists about a dozen different names - (INCLUDING cluster migraine, Horton's headache, histaminic cephalalgia, etc etc)
this paragraph may be variously subtitled: etymology, synonyms, early descriptions, etc;

PLAIN ENGLISH & "COMMON SENSE" often are unreliable in reading scientific stuff - there are special usages and writing patterns common to different sorts of writing - if you are not used to a certain style, it is very very easy to misunderstand what is being said, even if we fully understand every word used -
it's like "having an ear" for local dialects or street slang

remember = the root of science is description of substances, processes, phenomena and the relationships between them
- and a name is just an attempt to create a shorthand description of the subject of discussion,
whether it is a "good" name depends on how closely it describes the object referred to -

sometimes an author will refer to a disease as being: "vnieouf, which Dr. X called adheovndo" -

this does NOT mean vnieouf IS adheovndo, in the author's opinion;
it would be just as apt to mean the author DIDN'T think they were the same, what he is saying is that Dr X did think they were - a means of carefully clarifying fine points in technical writing which involves literature references

the IMPORTANT naming problem/challenge with CH has two parts:

Problem 1.
CH is a completely different disease from migraines (of which there different forms: chronic, classic, etc).
many doctors and most laymen don't understand that. Experienced CH patients seem to universally agree that confusion of CH with migraines, or insistence that CH is a type of migraine, is the source of much misdiagnosis, misunderstanding, inappropriate treatment, etc..
Many of us have suffered quite a bit because of this, SO - we can tend to be VERY VERY touchy about use of the M word in connection with cluster headache.

IMPORTANT: It is not offensive to talk ABOUT migraine when discussing CH, especially if it helps - through comparison for instance - to better describe CH.
BUT it is VERY important not to MIX the terminology, and remember that many many CH patients are VERY sensitive to talk that seems to link the two, because they have been seriously mistreated by the results of that kind of thinking.

Problem 2:

the "headache" component of the name of our disease is unfortunate because it creates an impression in people's minds of something MUCH less severe and MUCH less debilitating - then they react according to what they feel the word "headache" represents - when they do, we tend to end up getting the same kind of inappropriate treatment as when the M word is used

there probably isn't much we can do about this problem - "cluster headache" is now nearly universal usage
it would take a majority of the medical authors and researchers switching to a new term AND then at least a generation, for this to change

my intended TAKE HOME MESSAGE:

1. PRECISION in names & writing is absolutely required to eliminate mistakes & misunderstandings, if we are trying seriously to gain or communicate knowledge.

2. Most of us are not used to the plodding, detailed style of writing that is necessary to achieve this degree of precision, and tend to skip it or skim it - which leads to misunderstanding ofg the whole piece of writing.

3. If we're SERIOUS about learning more about our disease - and finding ways to help the DRs help us - it behooves us to try to become more familiar with this type of writing.

4. When we're just lightly "talking among ourselves" we can skip the fine points, and use our own style of expression

5. In talking to "newbie" patients and NONmedical acquaintances, we should think a little more about how we describe our problem - sometimes I think we bring a lot of our problems on ourselves by using language which will PREDICTABLY lead an "outsider" to false conclusions, then we get upset when they act in accordance with what THEY understand us to be saying.

We DON'T have to talk like a bunch of professors to communicate - BUT we SHOULD be very careful in chosing what we say no matter what the style we say it in - because there is NO way we can control how the reader is going to go about reading it.

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