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Quit clusterheadaches.com yesterday


TakinitEZ
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I was active on the ch site for a while and there are some really good people there with good ideas. Unfortunately I found there's a few bad seeds there that make it a fairly unpleasant place to interact. It takes a lot for me to walk away from something, especially something worth while, but I found that I and many others just didn't enjoy posting or contributing. After the last attack, I received a number of pms and emails from people who just don't post there anymore for that reason.

It's a real shame when a few people can shut down communications like that. I haven't found that at all on this site, and it's a real testament to the strength of the members in keeping that shutdown and concentrating on helping people.

I guess this is fairly common in dot com sites. I hope it's not tolerated here. Half of me was appreciative of the supportive messages that I received, but the other half of me was thinking, well why did you just stand by and let it happen if you felt so strongly about it? It's your site and you've let it boil down to the lowest common denominator (plus a few great standouts). Se la vie.

Anyway, my reason for sharing this is to explain my increased participation here and appreciation for the tone and content of the forum. I know it's a related site, and some may crossover as I did. I mean no one any disrespect. I'm also venting a bit at my disappointment.

Sorry to ramble on. Just had something to say. -T

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Hi EZ,

I understand your frustration in dealing with a certain negative element at the clusterheadaches.com website. I think all of us who post there know what you mean. Personally, I think it's worth it if only a very few people come here after hearing about us there. The Board Topic "Time for the 75-80% to stand up and be counted," under "Medications, Treatments, Therapies," started by our leader BobW, is the one place where I'm comfortable posting and I intend to continue. I don't get enough flak there to drive me away. There are a lot of folks who find their way to that website (75-80%) who could benefit from our methods.

Ron

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95% of communication is visual. 5% makes it on the board.

Discrepancies develop, statements are taken out of context, for most people it is hard to communicate directly face to face and understand each other. Dont you think it is pretty likely people will get crossthreaded on a message board given the loss of visual cues, body language, ect.?

Put on your internet armor. You'll be alright.

the bb

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Yep , you got raked over the coal by a couple of people over nothing. But I gotta tell you, you should have seen the board a few years ago. It is downright mellow to the way it was.

DJ put direct rules on what was allowed and what was not about 3 years ago. They were his rules and we were asked to help moderate it.

No one crossed the line with you but they did make snap judgements based on their beliefs.  Myself and another moderator stepped in but you had had enough.

It happens very infrequently anymore but it still happens. I just wanted to come over here and apologize for it.

And for your information, both guys are also members on this site as well. :)

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BB, Thanks for your post. Generally I think that's true and there's a fair amount of latitude for that. We can't walk on eggshells, they'll definitely get broken. In this case, several people got the same feeling I got. There was no misunderstanding.

I think it's best not carry on this thread here though, was merely venting. I'll probably delete this post because it sounds so negative and I'm really not like that. -T

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But I gotta tell you, you should have seen the board a few years ago. It is downright mellow to the way it was.

DJ put direct rules on what was allowed and what was not about 3 years ago. They were his rules and we were asked to help moderate it. 

This is no exaggeration.  It is mellow compared to the way it was.  Thanks to DJ and you guys!

Hey Jimi, any chance you'll be able to make the CB conference in Chicago in Sept?

bobb

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Possibly......I have been pain free for 10 years now. Goadsby told me last summer when I asked him if I had "outgrown them" that I was just in a long remission period which is normal for episodics after they hit 60. I didn't really want to hear that but I am hoping he was wrong.

After 10 years, if they ever come back, I will be coming here asking for assistance and recommendations and "how to" from you guys.

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Possibly......I have been pain free for 10 years now.

That's great Jimi! 

You probably don't remember, but I met you at NashCon.....what, six years ago?  You made quite an impression on me then, and I have had great respect for you ever since.  The fact that you are still so active with a disease that you have been in a remission period for a  decade, speaks volumes about your character.

I don't know if you subscribe to the genetic factor in CH, but with two brothers diagnosed ECH, I sure do.  Although I am not completely PF, as a diagnosed intractible primary chronic that thankfully only gets one or two extremely mild hits weekly, I try to remain active on this board simply because I think it the best hope for the future with CH. 

I know that you agree that the last thing we want to see is our children or grandchildren suffer from this excruciating disease.

Best,

bobb

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Sure I remember you in Nashville. You go to the same hairdresser that I do.

I am retired from the State Police now. I remember going to the convention in Atlanta in 2000 and people were just beginning to talk about alternatives then and when I walked up, the conversation stopped.

I never picked up on it until a couple of years later when they told me. We have all had a good laugh about it.

But if they ever do come back, I intend to explore this because some of the drugs that I used to take are probably not good for me at my age now other than 02.

Anyway, good to talk to you again. Heading back over to ch.com. :)

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