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Posted by Georgia ( on March 05, 2001 at 20:47:35:

In Reply to: Cluster/Trigeminal Headache Cured posted by Robert G. Frie on March 05, 2001 at 12:35:59:

I am sorry for your pain and am very happy that you have found relief. I thank you for sharing what has worked for you. I am sorry, however, that you felt the need to condemn some of the people here to live long lives filled with pain that is beyond most human comprehension. I am also deeply sorry that some people here felt the need to stoop to such levels as to call someone, be it a clusterhead, a salesman, or just a man, a hurtful name.

If you came here under the auspices of selling a product with false hope attached to it, I have faith that everything returns to the circling winds; the universe will right itself. It seems a waste of our very limited energy to dignify such a deep cutting insult. If you came here in the hopes of helping fellow clusterheads by sharing what has brought you relief, then again I thank you. This beast is beyond medical explanation at this point and so too may be the cure. I have said the foux pas word - cure - for I hope and believe that someday we will find it. If nature has brought this beast to us, it will also bring its predator.

As for the reference to your pain being non-stop and the accusations surrounding it, I surely have not forgotten that as a chronic ch'er suffering at times 6-7 attacks a day, each lasting 3 hours - the pain seems more than non-stop, it seems un-stoppable. I am given respite for 10-20 minutes at a time, my head still sickeningly sore from the last attack before I am hit again. Will you call that not a cluster as well?

I am willing to try anything to stop this pain, and that includes near all of the things brought to this board. Peppermint oil, water, mushrooms, Doan's back pills, exercise, oxygen, etc., etc. We are willing to take handfuls of drugs, Imitrex, verapimil, Stadol, Depakote, Sansert blah blah at the recommendation of someone who has never once experienced a cluster headache yet we shun those who know this pain and have found something that offers even a moments solace. I can not vouch for Rocky or his treatment, but my God one more clusterhead came here to tell us that he is pain free and I have yet to hear a simple recognition of that, a congratulations, a word of empathy as to what that must feel like. Instead, we investigate his doctors, his treatment, his life. If you think it a hoax then be that much the wiser and go about your day, minus the insults and the waste of precious time. But can we not let it stand for the sheer hope that it may help just one other person here in pain? Is hope all that much of a danger? Even false hope provides a moment of peace in this spiral of hurt. If we stop trying new things, new treatments, we will be in real danger, and even more so if we intimidate and deter people from posting their successes. I trust this board will not become one that shares only misery and not triumph.

I wish you all, Rocky included, pain free lives.

Peace and love,
The fanatic minority or the silent majority?

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