Click this link to read a post I like on the clusterheadaches.com message board...

Oct 8^th, 2024 at 2:27pm

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!

New CH.com Forum › Cluster Headache Help and Support › Cluster Headache Specific › Help we can all use. MUST READ

(Moderators: Mrs Deej, DJ)

‹ Previous Topic | Next Topic ›

Pages: 1

Help we can all use. MUST READ (Read 824 times)

Glen conley

CH.com Newbie

Offline

I Love CH.com!

Posts: 18
Kingman arizonia
Gender: male

Help we can all use. MUST READ
Jan 11^th, 2012 at 11:39pm

I read the 15 page survey that Came out and found some good stuff in it. These were doctors asking 180+ questions with 1k+ ch people. As a chronic sufferer for 30 years I don't care about what percentage had blue eyes or brown. Let's ask the questions that we all suffer from and make a data base to she what is working for all of us. Ex. Do you take lithium how many mg, o2 haw many liters per min. Let's ask the questions that we all experience. There are over 9000 of us on this site, i had know idea about red bull or mushrooms and much more. What if we could see that 85% that took red bull stopped a ch from coming on. I WOULD FILL OUT AS MUCH INFO IF IT COULD DIRECT ANYONE WITH POSITIVE RELEIF.

IP Logged

Click Here to visit the CH.com Facebook page!

Bob P

CH.com Hall of Famer

Offline

Shut up Bob!

Posts: 4573
Clio,California
Gender: male

Re: Help we can all use. MUST READ
Reply #1 - Jan 12^th, 2012 at 6:55am

At the Atlanta OUCH convention years ago, our friend John from the UK said that our numbers were our strength. We could supply info not obtainable elsewhere. He was right and you are right. In the past I had doctors tell me the surveys were the most useful info they saw on the OUCH website.

Surveys need to be done correctly though. I've seen surveys that forced you to answer a question even though none of the available choices applied to you thereby scewing the information.

Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron. "SHUT UP HUB!"

IP Logged

Batch

CH.com Alumnus

Offline

Control The Beast With
O2 & D3 You Must

Posts: 3708
Bremerton, WA
Gender: male

Re: Help we can all use. MUST READ
Reply #2 - Jan 12^th, 2012 at 4:48pm

Hey Glen,

1134 of us took part in the single largest survey of it's kind on people diagnosed with cluster headache in Nov-Dec 2008. Dr. Todd Rozen, M.D., and Royce Fishman developed it and a few of us had a hand in developing some of the sections. I worked the oxygen therapy questions.

When it was completed, Todd found the results would support at least 6 papers.

DJ has posted the latest paper that Todd and Royce completed at the following link here at CH.com:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

It's titled: CLUSTER HEADACHE IN THE UNITED STATES: DEMOGRAPHICS, CLINICAL CHARACTERISTICS, TRIGGERS AND PERSONAL BURDEN.

Is this the survey paper you're talking about?

There's an earlier article and the two original abstracts that Dr. Rozen presented at the 14th Annual International Headache Congress Conference in Philadelphia in Sept of 2009.

The abstracts cover the waterfront of methods of controlling CH complete with percentage rankings...

There are still four more articles to go but the process of writing them is time consuming and so is the process of getting them accepted for publication. It could take another two years to get them all out.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page

©1998-2013 Web Vision Enterprises LLC All rights reserved. All information on this site is protected by international
copyright laws. You may not re-distribute any information from this site without written permission from
Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.
You may view our privacy policy and financial disclosure statement here

DISCLAIMER: All information contained on this web site is for informational purposes only. It is in no way intended to be used as a replacement for professional medical treatment. clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site. All information taken from the internet should be discussed with a medical professional!