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Posted by Todd ( on February 22, 2000 at 22:06:16:

I'm quite certain that I will offend some people with this post, but in addition to CH, I suffer from an inability to keep my mouth (or fingers, in this case) shut at times.

Why in the world would anyone accept a diagnosis of clusters despite significant symptoms that don't relate at all to clusters?

Clusters CAN'T be cured and treatment is marginal at best. Some of the more radical 'treatments' cause permanent damage (see Andre's post below and countless others in the Archives).

Clusters AREN'T sexy, they don't make you more attractive to the opposite gender, your breath doesn't smell sweeter and you still have b.o. and dandruff if you had them before.

ALL other forms of head pain can be effectively treated, although it may take a bit of experimentation to find the right meds and to identify the triggers and avoid them.

Cluster treatment is hit or miss at best, and if you are lucky enough to find something that works, it will probably lose effectiveness eventually.

Clusters ARE NOT a variant of migraines, tension headaches, stress headache, sinusitus or anything else. It is a very specific disorder, unrelated to anything else known. There are at least two identified physiological elements involved in clusters.

There is variance in the specific symptoms we feel, but these are actually very minor.

Ok, those are the facts. The following is my opinion, and solely my opinion. The management of ch.com and all of its advertisers and supporters do not necessarily agree with these opinions.

Clusters have nothing to do with pollen, manure, perfume, MSG, cheese, west winds, temperature changes,
head injuries, what you ate for lunch in 4th grade or any other off the wall theories.

This is not to say that some of these things can't be triggers for some people. Alcohol, for example, is a virtual universal trigger.

But, alcohol DOESN'T cause clusters. Neither do any of these other things. Most likely, if pollen or the smell of manure or eating chocolate triggers your 'headaches', you don't have clusters. You have an allergy that causes migraines or headaches.

Clusterheads have a structural difference in our brains. This structural difference is very likely (though not definitely) related to the manner in which our systems process seratonin. Too little? Too much? Don't react fast enough? React too fast? If I knew that, I'd have the cure and I'd be rich.

Why did I post this? Simply because, after carefully reading the descriptions of symptoms from many of the recent influx of people here lately, I've concluded that I feel they have been mis-diagnosed. Not their fault..most of us tend to accept whatever the guy with the MD diploma on the wall has to say. I did. Then I learned what CH was all about and said "No Friggin Way! Not me, I'm not taking this!" I went to several different neuros, and it took about 5 to convince me. Then I spent every remission period in denial. Then I found this site and started objectively comparing notes. I got it, no doubt in my mind. I hate it, no doubt in my mind. I was hoping for migraines or sinusitus or some such. Heck, I'd take a brain tumor, but the MRI's and CT's and EEG's shot that hope down.

Let's get this place back to clusters.

Just my two cents worth. Send your hatemail to the addy posted above.

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