Observations (Long)

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Posted by Todd ( on December 03, 1999 at 19:22:13:

Hi all-
I've been around here since about May, but haven't been posting for a while. I continue to read the board daily, and thought I'd offer some observations.

I see LOTS of new people, which is both sad and great. Sad to learn of even one more 'member of the club', but great to know they've found ch.com.

Some of these new visitors have raised some interesting points recently. Some have also brought up topics that have been discussed thoroughly, and in some cases rather recently. DJ has provided a search function and it's a great idea for all of us to search the archives before we post a new topic. Not only does this save costly bandwidth, you might just find the answer you're looking for a whole lot faster!!

On a more distrubing subject, a good number of posters have listed symptoms which deviate TREMENDOUSLY from those of clusters. As one of my good friends here is wont to point out, clusters are a VERY specific disorder...not a catch-all term for a family of disorders. Yes, there is a similar (and confusing) TERM called cluster migraines. IMHO, this merely represents sloppy science on the part of those medical professionals who use this term. Cluster Migraines refers to those suffers of migraines who suffer a series, or cluster, of migraines in a short span of time. Migraines are NOT clusters. Clusters are NOT migraines. In fact, there is strong evidence to indicate that the vascular component of clusters is SECONDARY to the onset, not causative. Dr. Goadsby has stated that 'neurovascular' is probably a more accurate descriptive term to use with clusters.

What worries me most about the number of posts from people who seem not to have clusters is that there doesn't seem to be anyone questioning them. If we, the world's largest assembly of ch experts, don't help point sufferers of other conditions in the right direction, they may possibly waste years of pain pursuing ineffective treatments. Has ch.com been attacked with such a strong case of the politically correct virus that no-one is willing to speak up?

Past experience compels me to add this disclaimer:
Not every clusterhead is precisely and exactly the same in either their symptoms or their reactions to same. Not all meds work for all and most meds seem to loose some or all of their effectiveness for most after some time. O2 works for most, but not all. Some women report the apparent cessation of clusters after a hysterectomy, others report that as the time of onset. I fully accept and recognize differences between us. At the same time, I've never heard of 'atypical' MS, or MD, or cancer. Psychology, clearly the least scientific of the medical 'sciences', makes frequent use of the 'atypical' qualifier. Ask yourself this....if a dentist were to diagnose you with an 'atypical abcess' and prescribe mouthwash and floss instead of a root canal, would you accept this?

There may well be 'atypical' clusters, but I would suggest it is far too early, and thus irresponsible, to consider such a diagnosis as anything other than shoddy work on the part of a doctor and perhaps the patient. Remember, at this point, the only diagnostic tool available to medicine in determining the presence of clusters is patient testimonial. Not all patients are specific with their symptoms and not all doctors are diligent in their questioning. So, lacking a truly accurate and objective diagnostic profile of clusters, concluding that 'atypical' clusters also exist is very lax thinking.

A final note on a totally different subject. I'm thrilled to see bobp and hub both back to their old antics. ch.com is at it's best when it provides not only support and information, but also diversion. And no-one diverts better than hub and bobp.


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