Boy did you luck out!  Dr. Rozen is an AWESOME doctor to have for your cluster treatment!  He is GREAT!

And yes, he IS doing some great work with his research into the higher oxygen flow rates for aborting our very painful cluster headache attacks.

In fact, now that he’s taken some of the wraps off the planned demand valve therapy study he will be conducting, there a few things you and the others here on CH.com need to know…

The demand valve therapy that Dr. Rozen is working on was developed by cluster headache sufferers and members from right here at CH.com.  As some of you already know, Pete Batcheller developed the initial version of the demand valve therapy in 2007 based on work he started in 2006 to improve the effectiveness of oxygen therapy.  Pete and Michael Berger began perfecting that therapy in 2007 with easy to follow procedures and support from Royce Fishman at Linde LifeGas.

All this led to an informal pilot study of the demand valve therapy that Pete, Michael, and Royce developed, and that I was the first to use.  Michael Berger’s background in clinical studies proved invaluable in developing the statistical analysis package in MS Excel, that they’ve been using to gather, analyze, and report the pilot study's results.  

Although the results of this pilot study are still closely held for some very important reasons, I can say the demand valve therapy works exceptionally well for me and others that have taken part in this informal pilot study.

Pete and Royce were responsible for gaining Dr. Rozen’s support for the informal pilot study as the Senior Medical Adviser.  They also convinced him to take on the responsibilities of being the Principle Investigator conducting the formal study of the demand valve method of delivering oxygen therapy.

In September of 2007, I had the privilege of delivering the results of my participation in the demand valve pilot study to members of the Norwegian Clustercompagniet and leading neurologists from the Competency Center in Trondheim, Norway.  This was all made possible by the assistance of Svenn and Tony, and a “green light” from Pete, Royce and Dr. Rozen to release this information.

There are other unsung heroes that have been actively involved in promoting the demand valve therapy over the last 2 years.  They include Helen Williams, Svenn Thørn and Tony Amabile.  In November of 2007, Pete, Michael, Helen, Svenn and Royce traveled to Munich to meet with the Health Care Managers at the Linde Group headquarters in order to gain support for Dr. Rozen’s study.

That task was made much easier by showing a side-by-side video of me using oxygen therapy at 15 liters/minute compared to the demand valve therapy.  Tony Amabile produced this outstanding video, and I know that when the time is right, Tony will be able to make this video available to all of you. It's a jaw dropper, and it clearly illustrates the demand valve oxygen therapy works so much faster in aborting my attacks, than the standard therapy at 15 liters/minute.

There are a few other things you might find interesting …  Pete, Michael and Royce filed a patent for the demand valve therapy last July as a pre-condition to obtain the funding for Dr. Rozen’s study.  You should know these three assigned their rights to this patent to LifeGas in order to secure that funding.

Pete and Michael worked closely with Royce and Dr. Rozen in developing the Cluster Headache Survey taken by many of us from last October through January of this year.  I’m not privy to the results, but I’m told they will be very beneficial to cluster headache sufferers worldwide.  I understand that Dr. Rozen will be presenting the survey results this fall at the 14th International Headache Congress in Philadelphia. Once that happens, we’ll have the results published here on CH.com and on OUCH.   Dr. Rozen and Royce plan to submit several papers reviewing the survey data to other leading journals, so these results are going to get a lot of mileage and that will be very good for all of us.

I’m sure Pete, Michael and Royce will have a lot more to say once Dr. Rozen completes his study of the demand valve therapy and reports the results …  Until then, I think it’s safe to say there’s been a lot of hard work done and still going on behind the scenes to help fellow cluster headache sufferers.

So in closing, I’ll say it again.  You’re fortunate to be in Dr. Rozen’s VERY capable hands! He is one of our great hopes for this damn condition that we all know so well!

Chuck