WHY do we care if you REALLY have CH ?

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Posted by gary g ( on November 07, 1999 at 12:35:59:

WHY do we care if someone REALLY has CH ?

Cluster Headache seems to be the latest trendy diagnosis for DRs who aren't sure what ails their patient, to slap on one-sided headaches.
Up to a year ago, the problem was docs NOT having heard of CH. Now the problem seems to be just the opposite. Probably fallout from all the Goadsby publicity.

A> If patient doesn't have CH, it is no help at all to them to be looking for help with CH. Much of what works for us is CH specific, and WON'T help with other ailments.

B> If they don't have CH, but think they do, and put out a lot of info about their problem, when it isn't really CH, it hurts the rest of us by confusing the public understanding. If some DR successfully treats something that isn't CH, but he thinks is, then his next CH patient will pay hell for the confusion.
Maybe part of the proof of whether you have CH is whether you understand that !!!

If you're a "newby" and have only had 1 diagnosis, or self-diagnosed, Before you go down the CH road too far -

1. READ the medical info link, and take the cluster quiz, both on this site, accessed by the buttons at left.

2. REALIZE there are OTHER one-sided, recurring head pains that share SOME symptoms w/CH. (a brief description of two follows IN SEPARATE POSTS). Do some web searching and see if one of them MIGHT really be your problem.

3. Cluster Headache is SO STANDARD in certain symptoms that there is NO CONFUSION. In these symptoms - IF YOU HAVE A DIFFERENT VERSON, you don't have CH. It's that simple.

Two HUGE points:
A. The attacks are SHORT , 1/2 to 2 hours, if you have 8 hour, or multiday headaches, it ISN'T cluster headache. It's that simple.
B. The pain attacks come bunched up in a series, often several a day, around the clock in MOST cases. (thus cluster) - this IS part of the diagnosis.

This means that you start getting a whole lot of these short attacks, then after a few weeks or months they stop altogether, and you get absolutely none. People just DON'T get occasional CH attacks, now & then, over long periods of time.

Now, there ARE people whose CH clusters don't stop for a long time - we call that chronic CH - but it almost never happens when the disease first starts - and people who "go chronic" are usually clearly diagnosed before that happens. Most references call it chronic if it goes for a year or more without a remission.

Also, many of us drift in and out of "chronic" over the years. It is really just a reference to how long the cluster lasts. It really doesn't mean much in the diagnosis - but sure does to the patient.

There is controversy over whether or not patients can help break a chronic streak.

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