Leaderboard

Hello everyone!! Have you registered on the Clusterbusters “Patient Registry” yet? Over the years, Clusterbusters has built the largest worldwide patient database in the world. Become a member of the database and possibly a participant in a research project that will lead to better treatments and eventually a part of the cure. By completing this form, you are not registering for a specific study that is underway or that will start in the future. You are not agreeing to become a participant in anything. You are only agreeing to the possibility of being contacted in the future to ask for your participation. Research studies sometimes only require your participation from home. It may only require completing surveys or questionnaires. Some of you may have recently done this for the work underway at Yale University. Some clinical studies require your participation in other ways. Some may include travel. Each study has different requirements. Choice of participation is yours and that of the study investigators and does not involve Clusterbusters in any part of the process. This registry is open for everyone. There are no requirements of past, present or future choice of treatments or any particular cluster headache or human traits. People from all walks of life, all ages and every description, suffer from cluster headaches. We are presently involved in several ongoing research projects as well as several others that are in the long process of approval. As we are involved in research on an international basis, this survey is open to everyone worldwide. We encourage anyone with cluster headaches to respond and help inform others of its existence. As many studies focus on certain segments of the cluster population, episodics vs. chronics as an example, you may not be contacted for every study that is underway. Be a part of a better future for cluster headache patients and participate in our registry. As you will see again on the forms themselves, all of this information is and will remain completely private. The survey, all data and any and all future distribution is administered by the Clusterbuster’s Administrative panel and members of its medical advisory board. Information and people will move the research forward. Please be a part of this. Just the completion of the questions on this short survey, by the thousands that are included, helps gather important information. Please share this with others you may know that suffer from clusters. If you know of anyone that does not have access to a computer, contact us at info@clusterbusters.org and we will mail a written copy for completion and inclusion. To participate, please go to this link: http://tinyurl.com/n9ou73a Some of the questions may give you an idea of some of the projects we are currently working on and there will also be more information available at this years conference. Even if you can't make the conference, we'd love to have everyone here on the registry. Thank you Bob Wold Clusterbusters

Greg, 25 year sufferer of CH here... O2 is the only cure I've ever had. Thanks to a willing general practitioner I met 10 years ago who wrote me a prescription and worked with my insurance company, I was able to discover how wonderful it was. She has since moved away and my CH have gone away and come back, and it is a bit of a hassle to try to find understanding and knowledgeable doctors willing to help. The first thing they want to do is prescribe migraine drugs that do nothing and sometimes make CHs worse. CHs came back last week and rather than bothering with the prescription/insurance/rental route, I went on craigslist and found several affordable resale oxygen concentrators for sale. I'm one of the fortunate ones that have found success with O2 concentrators. 10-15ml is ideal, but they are expensive. I purchased a 5ml concentrator today and have already used it with success. I have a technique that I use that cures my CH even with lower ml rates. My advice is if you can afford it ($250-500), try CRAIGSLIST. hope you find CH peace. Dave