xlrsd Posted March 21, 2023 Share Posted March 21, 2023 Hi everyone, I am a new member to Cluster Busters. I have, however, been a survivor of ECH for approximately 12 years now. I have only recently been aware of the Cluster Buster community, and take full interest in it. I have even been experimenting with alternative medicine prior to my knowledge of the Cluster Busters community, with great success. A little background on myself. As I have mentioned, I have been a sufferer of ECH since 2010. Its onset was a complete suprise and an extreme burden that I know I will now carry for the rest of my life. I have been a member of the military and Special Operations Forces for over 20 years (15 years in SOF), and was convinced my ECH was a result of Traumatic Brain Injury (TBI). Which I understand is not a proven cause, but nonetheless, I feel could have contributed to the symptoms of ECH that I experience today. Whether TBI is or is not a contributing factor, I still constantly seek out the (minimal) science that is associated with diagnosing and treating ECH. For me, it is worth looking into to determine whether or not this is a valid cause, or enhancement of what we know as the result of ECH. I am currently in the process of retirement from the military, and have taken an exceptional interest in finding out what within my personal experience and past could have possibly brought the onset of ECH to my life. My reason for posting today is, one, I am excited to find a community that shares the same affliction and desire to find relief from such a brutal condition that I have endured for over a decade now. With no success from conventional medical treatment whatsoever. I wish to continue everyones endeavor of finding/discovering methods that eleviate the symptoms and pain we all endure during our cycles. And two, it seems to me as a new member that things may be slowing down with this website, in terms of community involvment and upkeep of the website. For example, I see that the most recent "annual cluster headache conference" advertised on the site is advertising the 2020 conference in Chicago, Illinois. Has there not been one since then? I also see that today (March 21st), is National Cluster Headache Awareness Day. And there is a link (button) to join in an all day video forum hosted by the Cluster Busters website, but the link or button will not work. My concern, as a new member, is I am seeing evidence that this community and webiste seems to be halting new media and content. Is that the case? As a new member, I was extremely happy to find it, but at the same time, disappointed to see that the community itself seems to be slowing down with new content and events, such as an annual convention. Is this the case with ClusterBusters.org? My intent here is to not cause waves if I am missing information on different links on the site. Its just gives me a little bit of false hope to finally find a community that deals with this ailment, only to see that it appears that the site and community is starting to become irrelevent in terms of conituing support mechanisms such as annual conventions and online video forums. And if this is the case, I think that I would be more than happy to assist in bringing some of this stuff back. Even hosting and organizing said events when possbile. I feel this community is under represented, and under appreciated. We need to keep this community alive and well to assist many of the others that deal with this condition. Please let me know if I can help, to keep this community alive for the support and information people need. Thank you ClusterBusters. I hope that content and information continue. If help is required, please don't hesitate to reach out to the amazing community you have already established. I am more than positive people will assist in anyway they can! Happy Cluster Headache Awareness Day to all suffering! (March 21st) Chad Hemann Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 21, 2023 Share Posted March 21, 2023 Hi XLRSD, Glad you found us! I believe some of the planned conferences were virtual due to the rona outbreak Here is a copy and paste of the most recent conference info: Registration for the first annual Clusterbusters U.K./European Patient Conference is open! Join us in Glasgow for what promises to be a memorable inaugural event. Register today. https://cbglasgow2023.planningpod.com/ 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted March 21, 2023 Share Posted March 21, 2023 Welcome to the community @xlrsd In the conference and events section you'll find info on our last conference which was in Chicago last Sept. This year we're having our inaugural European patient conference in Glasgow, Scotland and information will be posted soon in that same section on this year's US conference in Orlando. Dallas Denny 1 Quote Link to comment Share on other sites More sharing options...
Rod H Posted March 21, 2023 Share Posted March 21, 2023 Welcome to the club xlsrd. Hang around this place has helped me tremendously. I've got up to 3 yrs pain free with the knowledge from here. Not cured but found peace and hope. 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted March 27, 2023 Share Posted March 27, 2023 On 3/21/2023 at 5:22 PM, BoscoPiko said: Hi XLRSD, Glad you found us! I believe some of the planned conferences were virtual due to the rona outbreak @BoscoPikos--t did the US have a different virus than the rest of the world ,RONA virus 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted March 27, 2023 Share Posted March 27, 2023 @xlrsdhi my friend . This community is going strong buddy has been for years . USA has conferences every year but due to covid had to go vitual for a couple of years . But last year in Chicago was an open conference , and this year's US conference is in Orlando. This May we are holding are first ever UK and European conference in Glasgow . Stick around my friend you will get a lot of help and support from people that have suffered with CH for years plus support from people who care for people with CH 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted March 27, 2023 Share Posted March 27, 2023 4 hours ago, Shaun brearley said: @BoscoPikos--t did the US have a different virus than the rest of the world ,RONA virus LOL nah.. You know me, gotta give everything awful a cute name 2 Quote Link to comment Share on other sites More sharing options...
xBoss Posted March 27, 2023 Share Posted March 27, 2023 5 hours ago, BoscoPiko said: LOL nah.. You know me, gotta give everything awful a cute name It's def Rona 1 Quote Link to comment Share on other sites More sharing options...
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