Vancouver, British Columbia - September 13-15, 2002
Convention Report
After a few days of socializing, meeting new friends and reviving old friendships, the official OUCH annual meeting took place on Saturday, September 14, 2002.
OUCH President, Bob Pahlow, called the meeting to order and began by reviewing some of the notable accomplishments for the Organization during the past year. These included:
Receiving our official 501 (c) (3) non-profit status from the IRS.
Work is progressing on Registering OUCH as our trademark.
Work is progressing on a new OUCH brochure. The text is complete and it is currently having the artwork done.
The "Surveys" were added to the website. These will be a good research tool but more need to be developed.
We have started a dialogue with Glaxo Welcome. We hope to develope this into a funding source for future meeeitngs.
Membership in OUCH was made free of charge. Membership has more than doubled since this was done a few months ago. Many new members are offering skills and talents to OUCH.
At the request of the National Organization for Rare Diseases (NORD), we have submitted our Organization information to be included in their database as a resource for cluster sufferers.
Dave Greenley's "Headache Comparison Table" was included in a new reference book for RN's with credit given to OUCH for supplying it (at Dave's request).
We are in touch with both Mexican and Brazilian contacts and discussing the development of an OUCH chapter for Spanish speaking persons.
Aki Peterson"s video, "Cluster Headache: The Beast Attacks", was viewed by the group. It is a very well done video covering most basic information regarding clusters. Copis of the video can be purchased from Aki for a minimal amout.
Dr. Gordon Robinson, of British Columbia General Hospital, then gave a more in depth talk about clusters.
His discussion covered the signs and symptoms of CH. Trigeminal nerve involvement. Treatments - of note here was his disclosure that some patients use as many as 8 Imitrex injections per day. He also felt that Verapamil was the most effective preventative but that most clusterheads are on too small a dose. Some of his patients are on as much as 1080 mg/day.
After a break for lunch, Douglas Wright, D.C., reviewed some research papers on the use of Melatonin as a CH preventative. He also spoke of his own experience with the substance.
His review is attached here.
The meeting concluded with a discussion fo future projects for OUCH. Suggested were:
Developing an 800 phone number for sufferers to call for information and help.
Adding information on "Disability Claims" to the Resources pages of the web site.
The meeting then adjourned for dinner, golf and a whole lot of fun!