Advice for new visitors

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Posted by The CH Family ( on October 15, 1999 at 14:16:28:

Hi and Welcome!! We LOVE to have newcomers find OUR (that includes you) site. If you suffer from, or live with/love/care about someone who suffers from, Cluster Headaches, this is THE place for you!

Our site can be a tumultuous, fast-moving, contentious world at times, but first and foremost it is the most caring, compassionate, supportive family of clusterheads in the world.

There are a few things that seem to create misunderstandings in our little family at times, and they’re the purpose behind this post. We have occasionally and unintentionally upset some new members of our family and we really feel bad when this happens. All of us were alone until we found, and we really, really want you to enjoy the warm feelings you will have when you finally meet some other people who UNDERSTAND what you deal with. So, in an effort to prevent any misunderstandings, we offer the following suggestions:

First, please check out all the pages of the site. Use the Link Buttons on the left of the page. Read about clusters, check the medical info, scroll through the message board and the archives. Okay, you don’t have to read every message and the entire archives, but run a few searches for specific info you may be looking for. Take the Cluster Quiz. It isn’t medically approved or scientifically proven, but it’s a real good way to get a handle on whether or not you have clusters. And don’t forget to check out the AskDocGreg page. DocGreg is a regular reader of the board, a physician and a clusterhead himself. He’s posted answers to some of the most Frequently Asked Questions.

Next, it’s probably a good idea to watch the Message Board for a bit before you post. Came here looking for medical info or scientific research? Great. Check out the medical info and the links on the left. Expecting nothing but technical discussions on the board? Ooops! Sorry. We are a family. We talk about everything. Some serious, some silly, some downright ridiculous. Lots of us find that laughter helps ease the emotional difficulties of dealing with a debilitating, permanent disorder that has no cure, no know cause and no truly effective treatments. But others prefer to confine their comments to serious discussions. There is plenty of room here for all. You can read every post or learn to skip over those that don’t fit your wants and needs. Frequent posters, and we have many, tend to reveal much about their personalities in their posts. You are likely to find someone who you can relate to. Some of us are self-proclaimed analytical types, who tend toward serious discussions of a technical or scientific nature. Others are in the ‘touchy-feely’ style, usually staying out of the analytical discussions but always quick to offer support, words of encouragement and a shoulder to cry on.

It’s considered good Netiquette to post your email address. Those who do will have their name in BLUE at the start of their post. Just click on it, and you can send them an email. Concerned about posting your email address? Can’t do it because it belongs to the company you work for? Cool. Check out, or any of the other free email providers and set up a special one just to use here.

Lots of us use acronyms, abbreviations and buzzwords. Some of these are common, some are common to the Net and some are unique to this site. Here are a few….LYG = Love you guys. PFD = Pain Free Days (sometimes with AN for And Nights appended), WWW = Water, Water, Water. see the link. KTSSU = Keep the Shiny Side Up, BTW = By the way, LOL = Laugh Out Loud, ROTFLMAO = Roll on the floor, Laugh My A$$ off, nt means No Text, and is added to the end of a post title to indicate that there is nothing more written inside the post…the poster said all she/he wanted to in the title. Those who have slower computers appreciate this courtesy, as it saves them the trouble of opening an empty post. The Demon and the Beast are two pet names we have for the pain we feel. The Dance is what we do during an attack. Shadows are sort of ‘phantom’ headaches we get, usually as a warning that an attack is on it’s way. There are lots more, but you’ll catch on, and don’t be afraid to email the poster to ask for an explanation if you don’t understand something.

Now, about that first post of yours. Please share your experience with us. What are your symptoms? How long have you had clusters? Are you episodic or chronic? What meds have you tried? What works for you? If you have a question, try to be specific, it helps us help you.

So, what if you don’t know if you have clusters or know you don’t but don’t know what you do have? Great, see the above paragraph. We DON’T diagnose or prescribe, but collectively we have lots of knowledge and experience. If you aren’t a clusterhead, we sincerely want to help you find a site that can help you with your situation. So give us all the same details.

Looking for a source for legal or otherwise drugs. Cool. Here’s what you do…move your mouse up to the back button of your browser, click on it and go back where you came from. Clusterheads would give anything NOT to have to take meds. We have absolutely no interest in abetting some junkie’s self-abuse.

Whew!!! That was a lot to read, wasn’t it? Sorry, but we want your first impression of us to be as positive as it can be. By their very nature, clusters affect all of our emotional stability at times. Chances are, if you’ve found us, it was out of desperation and you’re in cycle right now. A lot of us are too. Skins can be thin and feelings inadvertently hurt and we DON’T want that to happen if we can prevent it. So, consider these suggestions and then come join us! We HATE that you have clusters, but if you do, we LOVE adding you to our family. Welcome home. BTW-it’s your turn to wash the dishes tonight. :-)

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