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MoxieGirl

Start Here Post?

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Hi wonderful people.

I was wondering if we should have a pinned post in the General Board section called something like 'Start Here'. 

This post wouldn't replace the posts in ClusterBuster Files, but be a light introduction, with links to those posts, and others, with more detail.

Here's a draft of what I have in mind.

                                                                                                                                                

First off, don't lose hope. Cluster Headaches are not unstoppable. It takes patience, some trial and error, and research. But it is possible.

The wonderful people on this site are here to help. Combined, we have years upon years of experience and knowledge. Feel free to tell us your story and ask questions, and we will do our best to help. To start with, we recommend you scan through this post, follow the links when you are able, and then introduce yourself to the community and ask anything you need to know. 

What can I do to reduce my Cluster Attacks?

- Use oxygen, energy drinks, coffee (etc.) to abort an attack as it's happening. (with a link to more details)

- Start on the Anti-inflammatory Regimen to reduce and prevent attacks. (link to more details)

- Start a headache diary, and record when you have headaches, how painful they are, etc.

- Use the headache diary to try and identify possible triggers (alcohol is a popular one affecting about 50% of cluster sufferers). Avoid triggers at all cost.

Next steps 

- Information on commonly prescribed medicines, how effective they are, side affects, etc. 

- Other options.

                                                                                                                                                

You know, that sort of thing.

What do you think?
MG

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This would be a good idea. I'm about 1 month new to the site and thankful for Chfather, Spiney, Batch and a few others who got me a lot of information pretty fast. But I could have helped myself a little better if I had read the files. I didn't go into the files because I didn't have any idea what to look for. I did browse the general boards before posting though.  

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Thanks for the feedback Jandrews.

I think a lot of people are like that, especially if they aren't familiar with online forums. I'm an IT Consultant, and use forums all the time, so didn't struggle. But if you don't it can be daunting. 

A post like this might also help reduce the newbie repeat questions. We are always happy to answer such questions, they aren't a bad thing. But a bit of knowledge when you come to the site would be a good thing for everyone, me thinks. At the very least, it'll provide an idea of where to start and what to ask.

MG

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Hi MG!

Great idea but there is one small issue! One of our duties as moderators is to keep content referring directly to busting and busting substances moved to the secure sections of the forum!!

Bob's Pocket guide is pinned in the "Busting Files" for that same reason!

Perhaps delete that last paragraph and install a link to the pocket guide in its place!

DD

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I've given this a lot of thought, since I am going to have to be winding down the time I spend here.  My first thought has been that there have been several "start here" documents in the past, but they don't get traction, for what I think have been three main reasons.  The first was that they weren't posted prominently enough for people to actually know they were there, and reading them certainly wasn't required.  The second (or maybe the first) reason was that they were not, in my view, very inviting.  For example, although I'm a huge admirer of Bob, the "Big Pocket Guide" starts with many pages of stuff that is important but isn't why people came here (patient registry, clinical trials, devices ...), and it's just so darn big. The third (or maybe the first) reason is that I think people come here mostly with either a specific question in mind, or hoping for personalized advice about their situation.  I don't think they're likely to look at a "start here" document and just feel satisfied.  And there's so much specific advice that needs to be given that putting it into a "start here" wouldn't really help all that much.

In my view, what would be most valuable would be to have a series of thorough, readable, and up-to-date documents on the major topics -- for example, O2, D3, busting, meds, and non-med abortive and preventive strategies -- maybe with some very brief overhead description.  What's now in the CB files is pretty crappy.  For one thing, the shift to the new system messed up the formatting of existing documents enough (at least on my computer) that they are now hard to read. For another, the information is old.  I wrote the O2 document, and it needs a serious upgrade.  Some of the busting advice is way out of date. I hate to even refer people to the D3 file because it's now so hard to follow.  Then there are potentially very valuable files, such as Goadsby's article about pharma treatments for CH, that are tucked away in other corners of the board, at the home page. If I was going to have a "start here" related to meds, it would be just to point people to Goadsby's simple and clear discussion. 

A few months ago, there was a pretty big flow of new people to the board.  Surprise, surprise, it was right around the autumnal equinox.  Most of the time, except for what seem to be peak CH seasons, there aren't that many new people arriving.  (At least, that's the way it seems to me.)  To me, the big question is whether there are really enough committed people here to help with both the small flows and the big flows, and how long those people will be around.  It's easy to name the handful of heroes, starting with spiny, who are here through thick and thin.  And it's easy to name others who make very valuable contributions but more sporadically.  It's even easier to name the scores of people who have been here, been helpful a few times or many times, and moved on. Maybe it's time for CB to think a little about why that is, and how this board will remain strong in the years to come. 

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G'mornin folks!

Many good points and concerns Chf....AND....I totally understand your frustrations!!!

Unfortunately, in my opinion.....and it makes me incredibly sad at times........the passage of time and advances in technology, the advent and popularity of social media and the manner in which it has become an integral part of so many folks fast paced lives, and the inherent fact that social media is such a dynamic platform for a support group versus an "old school" static message board or forum like ours! And it's not just us, our sister site ch.com has suffered the same decline in both newbies and active supporter/posters although I would imagine their active membership is larger than ours as it always has been.

 

I know BobW  had hoped that the board upgrade would help drive folks back from social media.....I have made personal plea's toward that goal but they've unfortunately been met by deaf ears for the most part......not bitching or pointing fingers in any way, just stating the facts as I see them....it's just the way of the world we live in today I reckon ya'll!!

 

But, we are still quite relevant in my opinion.......we do still see a few new folks, particularly around the season changes and conference time....we do still see old familiar faces check in from time to time........and many, many folks in the Facebook groups that got to clusterbusters first, and who love clusterbusters and testify about it having saved their lives,  post links on a very regular basis to our files!!  For the most part though,  they're no longer active here and quite possibly have no idea that they're linking to hard to read, corrupted files, full of broken links.

 

So, I've been in contact with BobW and Jeff this week about the files issues and have taken on the task of editing all of the "Busting Files" to remove the place holder corruption from the upgrade and replacing all of the old yabb links to other internal files.........that process will begin in the next few days (gotta go buy a new laptop first).....its not going to be an overnight fix but we're going to attempt to get the issue addressed as soon as possible ya'll!!

 

Along with that, let's continue this conversation here in regards to the thread topic, come up with a concensus outline of what the content needs to be, and I'll submit those ideas to Bob for his input!

 

My heartfelt thanks and appreciation to all ya'll still manning the ship and being here to support  those clusterheads who do find their way here!

 

Much love and respect to all!

Dallas Denny 

 

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THANK YOU, Denny, for taking on that task.  If I ever have free time again (maybe early next year), I'd be willing to work on updating the O2 doc and just tidying up the D3 post.  As we always say, "If we can help just one person . . . "

Maybe instead of a general start-here type post, it could just be "things you can do right now."  This might actually have been the original idea Moxie was presenting. 

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On ‎11‎/‎16‎/‎2017 at 9:53 AM, Dallas Denny said:

Unfortunately, in my opinion.....and it makes me incredibly sad at times........the passage of time and advances in technology, the advent and popularity of social media and the manner in which it has become an integral part of so many folks fast paced lives, and the inherent fact that social media is such a dynamic platform for a support group versus an "old school" static message board or forum like ours! And it's not just us, our sister site ch.com has suffered the same decline in both newbies and active supporter/posters although I would imagine their active membership is larger than ours as it always has been.

 

I know BobW  had hoped that the board upgrade would help drive folks back from social media.....I have made personal plea's toward that goal but they've unfortunately been met by deaf ears for the most part......not bitching or pointing fingers in any way, just stating the facts as I see them....it's just the way of the world we live in today I reckon ya'll!!

Social media "groups" are the fastest and easiest way to start your own fiefdom. Everybody wants to rule the world.

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