Posted by DJ (198.247.7.20) on August 23, 1999 at 23:49:41:
Hello Anthony,
My name is DJ. I am the webmaster/creator of this website. I am not part of any corporation trying to make money off of cluster headache sufferers, simply, a sufferer of the beast for over 14 years. I built this site in April, 1998 because I was tired of feeling alone with the terrible pain. I knew there had to be others out there who knew exactly what I was going through. I posted the very first message on this site and have since read every entry on this site since. If you would like to know more about me, please follow the link titled "The Webmaster" on the left of your screen.
I would like to take this opportunity to let you know that I've read all of your posts (first one being August 21st) and all of the responses to your posts. I would like to tell you that I understand you are very excited about your being "cured" and your willingness to help others that suffer from cluster headaches. I am elated that you have found what works for you! Really! You have what all of us are searching for... a "fix" for our pain. I sincerely hope your head pain never comes back!
I would also like to maybe try and give you some insight as to why you got such a hard time from the visitors to this site.
Put yourself in their shoes for a moment BEFORE you found your miracle beta blocker cure. I need you to use your imagination with me for a few minutes. Ok?
Imagine for a second that you had been a part of a board exactly like this one for several months. Imagine that you were searching for an answer to your pain just like everyone else. Imagine how wonderful it made you feel to interact with people that you knew suffered from the same frustrations because nothing seemed to work. You've tried all of the medications for your pain and nothing could prevent your terrible pain. You'd tried tylenol, verapamil, caffergot, DHE, indocin, blah, blah, blah. NOTHING worked. Imagine all of the thoughts about suicide, the feelings of loneliness because you had never met or talked to or met another person that really, truly understood how you feel. Imagine the thoughts of feeling like you were the only one in the entire world who felt this way.
Imagine what a wonderful feeling you might have when, finally, you found a place where others actually feel the exact same way you do! Imagine what a wonderful place this forum this would be for you. No more feelings of being alone. No more feelings of 'no one understands'. No more feelings of 'I'm the only one in the world that feels this way'. Wouldn't that be absolutely incredible?
You still with me? Awesome huh?
Now imagine that someone that you have never seen in your new paradise before posts a message one day. The message goes something like this...
"Hi. Just wanted you to know that I've found a cure for your pain. I used to have the same pain so I wanted you to know that I know exactly how you feel!
I wanted to let you know that all you have to do is say 'abra kadabra', three times really fast when you wake up each morning, and you WILL BE fixed!!! You WILL BE cured! It worked for me so it will definitely work for you! YA-HOO!"
You still with me?
Now imagine how that would make you feel. I'm pretty certain that the feeling of "who the hell is this guy" would be one of the first feelings to cross your mind. I'm pretty sure that the feeling of "this guy has no idea what the hell he's talking about" would be one of the next few things that crossed your mind. I'm pretty sure that your feelings of anger would start to surface when this person that you have never heard of before followed up with statements to you saying things like....
"Quite obviously many sufferers are delusional and they are a danger to people who want to discuss this problem", "Be circumspect when talking to these people - they could be a danger to you", "Looking for you", "Types like you spoil forums like these", "It seems to me that a lot of people on this forum should be expelled.I do not like threats and I intend to track down these people", "Any person can only therefore reasonably conclude that many people using this forum are either mischevious in a very sad way or are suffering mental illness", "I propose to run regular warnings about these people in order that genuine sufferers can be left in peace", "From my experience I would not advise anybody to take comments on this board seriously", "i placed two messages by mistake because i am new to computers", "This is the sort of reply people should be warned against", "how many over reactive people are abusing this service. it makes it of no value", "get proper help , you should not be here", "read my messages and you will understand why this quite excellent site should be purged of your type", "the people using this facility require protection from your type".
Have I made my point?
I think you would feel the exact same feelings that most of the people on this site felt towards your "fix".
I, and I alone, can offer you the ability to give your cure some credit. As you may, or may not know, what usually works for those that suffer from migraine headaches usually doesn't work for cluster headache sufferers. Are you willing to let me ask you some questions about your headaches? Are you willing to show this group of people that beta blockers "fixed" your cluster headaches? Are you willing to give the give the visitors of this site the hope that beta blockers may "fix" their cluster headaches?
If so, let me know. You can respond to this message, or you can send me an email. I can assure you, if you answer all of the questions that I will ask as a true sufferer of cluster headaches, you will recieve more "I'm sorry" messages in your email than you will know what to do with.
It's up to you.....