Willie Pete Posted August 4, 2017 Share Posted August 4, 2017 (edited) I would like to begin by saying that I have been reading the forums for just a few years as I did not know they even existed until just a few years ago. This is my first time to ever post here regarding Cluster Headaches. I was diagnosed with Cluster Headaches about 27 years ago. I've been under the care of a Neurologist for the last 18 of these years. I'm currently on the downside of a rogue cycle, as I usually get a cycle in the Spring or Fall ~+/- 2 weeks around the time change. This cycle hit me unexpectedly in June and I was completely unprepared. The only good thing that has come of it is that I learned some new things regarding CH. I met with my Neurologist today (03 August 2017) and he performed an Occipital Nerve Block just behind my right ear with an injection of Lidocaine and a long acting steroidal. Afterwards, I had an appointment with Dr. Burish at the Will Erwin Headache Research Foundation, Memorial Hermann Health System, Houston, Texas. Dr. Burish met with me personally and told me that this study is 10 years and has 20 million dollars invested into it and the gentleman that made it all happen started this because he lost his son to suicide at the age of 24 years because of Cluster Headaches. Their goal is to find a cure. I signed the necessary consent forms and gave tissue, blood, urine, tear and saliva samples. There were some questions and some online questions to perform later. Dr. Burish said they have been going for about 2 years and probably have ~50 CH sufferers enrolled. I'm hoping that anyone who reads this will contact the Will Erwin Headache Research Foundation at 713-238-9100. I get the voice mail and left a message. It only took a day for a return call. I don't know if their is a receptionist line to actually speak with. They are in Houston, Texas, USA. I'm sure for patients samples you would have to work out some type of arrangements with them. I've read where in the past 25 years only 2 million dollars was spent on Cluster Headache research. Once more people become enrolled in the Will Erwin Study I have a feeling we will make a huge impact on the Cluster Headache community in as much as Cluster Headache awareness. Having medical codes to where we can get more than 9 Imitrex tablets filled for just 30 days, medical code for Oxygen without having to have a low pulse oximetry reading, have the ER admission clerk actually understand why you need the oxygen instead of stuffing papers into your hands, we won't have to fight with the overzealous pharmacy that is more knowledgeable about our condition and patient/physician education interaction than her 3 minutes of blabbering about drug interactions. You get the idea. I know any one who has this has dealt with it and many other things that don't come to mind now. As far as I know this study isn't limited to Houston, Texas either. That's why I said I'm sure they have some type of work around to get the samples needed. But they need volunteers. My wife was with me and enrolled because she has chronic migraines and they are studying those as well, with Cluster Headaches being the main focus. I hope anyone who reads this that has Cluster Headaches calls and does the preliminary consult over the phone. If you know someone that may have Cluster Headaches please share these web links with them. Now that I am enrolled I'm looking forward to contributing to all who come here and learning as much as I can from each and every one of you. Take care. The following are the links to the studies I have mentioned, they are all interrelated : http://www.cureheadaches.org/ http://neuro.memorialhermann.org/wec/ https://www.facebook.com/cureheadaches/ https://med.uth.edu/neurosurgery/wec/ Edited August 5, 2017 by Willie Pete Corrections 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted August 4, 2017 Share Posted August 4, 2017 Hey Willie! Welcome to the community and thanks for posting this! Sadly, I was a member here when our founder put up the post advising us of Wills passing......his Papa has really stepped up and done an incredible thing in his memory for the Clusterhead community!! I'm not sure, but this might possibly be a part of the ongoing clusterbusters genetic study but it seems strange that they can't advertise to recruit participants!! Dallas Denny 1 Quote Link to comment Share on other sites More sharing options...
Willie Pete Posted August 4, 2017 Author Share Posted August 4, 2017 I believe they can advertise, but not actively recruit. I'm not the best with words right now. Thank you for bringing that to my attention. I did word that rather odd, Dallas Denny. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted August 4, 2017 Share Posted August 4, 2017 Hi Willie I messaged BobW earlier and this isn't a part of the genetic study, however, Dr Burish is going to be speaking at the clusterbusters conference next month. 1 Quote Link to comment Share on other sites More sharing options...
Willie Pete Posted August 5, 2017 Author Share Posted August 5, 2017 Dallas Denny, Thank you for the replies. I did edit the original post and made the appropriate corrections. It should have originally read that "they can advertise, but cannot actively pursue or seek out patients." I was post-headache and drained from the day when I typed the original post. I was excited about the meeting and wanted to share, but was fearful of going to sleep and triggering another headache. I hope everyone understands my error. Update: The Occipital Nerve Block seems to be working. I had 14 hours of uninterrupted sleep. When I woke up I had zero pain. No shadows, no raw nerve pain, no facial/scalp/neck tenderness. Nothing. It's been 26 hours since the injection. I'm two months into my cycle and it's seems to be temporarily in remission. I'll head over the the treatment area to follow-up. -Willie 2 Quote Link to comment Share on other sites More sharing options...
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