In Defense Of CH'ers (with kindness to others)

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Posted by Cranpain ( on December 09, 2000 at 22:40:42:

I spent my first eight years of excrutiating CH pain, taking medicaton for migraines, simply because there was none for clusters. CH has continually been lost in the maelstrom of other "headaches". Most people don't even know the condition exists, including many in the medical profession. Recently I found a neurologist who seems to understand CH, and the seriousness and treatment of it. He totally changed every medication I had been taking, and started a whole new method of treatment. Still, his office and waiting rooms are plastered with migraine information. CH'ers are not insensitive to pain suffered by those with migraines, merely afraid of being swallowed up in the tide of a much more recognizable malady, and being overlooked by the medical community.
My youngest son died years ago from Reye's Syndrome. At the time, no one knew what it was. We formed an organization to promote recognition of the disease. It was a tremendous battle. The end result is the warning on aspirin bott;es that exists today. Those of you in OUCH face the same battle today.
For those of you with migraines that have taken offense, please don't. My Dad has had four open-heart surgeries, and has suffered tremendous pain. Yet, he doesn't need the cluster headache board. My wife's sister has had two brain tumors removed. But she doesn't need the cluster headache board. We simply fear that a dilution of the cluster headache purity will nullify the purpose, to promote recognition and healing of this terrible condition. We do not belittle your problem. We simply point out that it is a different problem. If you have both migraines and clusters, we wish to help you with the clusters, and tell you where you can get help with the migraines.
I, for one, agree with a previous post that lumping the two together will accomplish a great deal for the majority and nothing for the minority (CH).

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