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        New Message Board Archives >> 2004 Posts >> Ideas Needed (CH-related)
        
(Message started by: Lizzie2 on Sep 15^th, 2004, 10:57am)

Title: Ideas Needed (CH-related)
Post by Lizzie2 on Sep 15^th, 2004, 10:57am

I'm working on putting together a patient education folder for cluster headaches. Kind of part of a project I'm working on here! At any rate, I'd like some input on things that you feel should definately go into a patient education folder. A printout of the O2 info, maybe the colleagues letter, some other things like that.

Any ideas? Thanks!
Lizzie :)

Title: Re: Ideas Needed (CH-related)
Post by ExplodingEyeBall on Sep 15^th, 2004, 11:13am

The URL for this web site.

Title: Re: Ideas Needed (CH-related)
Post by Lizzie2 on Sep 15^th, 2004, 11:14am

on 09/15/04 at 11:13:39, ExplodingEyeBall wrote:

The URL for this web site.

Definately! There will be a page with a list of URLs, including this site and OUCH site. :)

Title: Re: Ideas Needed (CH-related)
Post by ExplodingEyeBall on Sep 15^th, 2004, 11:24am

Don't we also have a decent list of reccomended neuros sorted by geograhpical area?

If we don't, maybe we should all post the name and location of our neuros.

Leave Zazi's neuro (A$$hole) out of the list.

Also, a picture of the tri-thingamajiggy nerve with a basic explanation of it and how it is related to CH.

A really detailed list of symptoms/meds/etc...

A basic etiquite (spelling probably wrong) list of dos and donts for posting here. I've seen a lot of newbies come very close to getting flamed into oblivion because of the wording of their posts.

And mostly, a list of snake oil remedies that should be avoided and how to recognize snake oil salesmen/trolls/etc... so that they don't feed them.

These are all things that I would have found very helpful when I first came here.

I'll post again if I think of anything else.

Pat

Title: Re: Ideas Needed (CH-related)
Post by Lizzie2 on Sep 15^th, 2004, 11:30am

Thanks! Some I can definately use, and some not. But that's ok. Let me explain a little more behind this.

I was recently visiting a friend in the hospital for headaches, and it turned out that her nurse graduated from the program I am in now this past May. She was also assigned to be my mentor! Funny that my mentor works on the headache floor, which is one of the areas I'm interested in working in!

So I was talking with her in the hall, and I told her about NashCon and the sites here. She was amazed. I told her that I'd never met anyone with CH except for through this site. She said, "that's so weird because we get patients with CH in here all the time who say they've never known another person with it." That was like a knife through the heart! I definately didn't like hearing that there are so many sufferers right here in Philly who still haven't met another CH'er.

At Jefferson, we have patient education folders that we give out when patients come in with certain conditions or needing certain procedures. We have a generalized headache folder (which also really needs some updating!), but there isn't anything specific to clusters. So, I'm working on a patient education folder to then present to the headache center to see if they will adopt it for use with cluster patients when they come to Jefferson.

So basically, they will already have a doc because they will be treated here. I don't think that putting something about etiquette for CH.com would be very appropriate for this type of education folder.

I definately like the idea of putting the trigeminal nerve info in there!

I just need to keep this as "information" based as possible because otherwise they will reject it, and it won't get off thte ground!

We'll see how it goes! It's something I've been thinking about for awhile and just getting started on the project. :)

Title: Re: Ideas Needed (CH-related)
Post by saintslair on Sep 15^th, 2004, 11:37am

Hi Carrie,

I think we should also come up with a standardized Headache Diary (the one I have been given to use by my doc is for Migraines and doesn't exactly do the job). I'll come up with the form and email it to you. I want to get Kip's permission first to use the kip scale on the form.

Hi Pat,

The Doc list is something else I am working on for the Cluster Head Yellow Pages. See this post:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1094774503

Any docs or O2 suppliers you could recommend would be appreciated.

Thanks,
Andy

Title: Re: Ideas Needed (CH-related)
Post by Cerberus on Sep 15^th, 2004, 6:36pm

The latest research and information from NECH and Dr. Bigal would be nice to add. If you haven't already...

Ramon

Title: Re: Ideas Needed (CH-related)
Post by Kris_in_SJ on Sep 15^th, 2004, 8:54pm

Just a thought, Lizzie ....

I live in a fairly small town in Michigan. When my daughter (now 21) was 12, she was diagnosed with scoliosis. At any rate, it advanced quickly even with a brace and she needed surgery. Luckily I knew a number of medical people in Chicago and got a great referral for a surgeon. What I couldn't find for her was someone she could talk to who had the same procedure done (anterior surgery - very rare at that time).

My point here - Chat and message boards are great. But maybe a list of people (willing, of course) with phones and email addresses who would be willing to be supporters and mentors to those newly diagnosed could be included. I have yet to discover another clusterhead in my town, but am willing to bet there's at least one or two. Sure wish I could find them.

By the way ... great idea! It will help many sufferers, I'm sure.

Kris

Title: Re: Ideas Needed (CH-related)
Post by thebbz on Sep 15^th, 2004, 9:02pm

Maybe a list of doctors to avoid? Some I've seen rank up there with vetrinarians. [smiley=laugh.gif]