MichelleC Posted July 15, 2023 Share Posted July 15, 2023 We need your input. Clusterbusters is excited to share our new and comprehensive Cluster Headache Medication & Psychedelic Use Survey. The purpose of the survey is to better understand what medicines, alternative substances, devices, procedures and psychedelic substances people use to treat their cluster headache. The survey is open to people 18 years old and older who have been diagnosed with cluster headache. This research is a joint project with UTHealth Houston. The survey is expected to take 20-45 minutes to complete and no personally identifying information is collected. The results will be used for research and advocacy purposes. The data will advance scientific understanding of treatments for cluster headache and contribute to the development of new therapies. Please take the survey and share your experiences: https://survey.alchemer.com/s3/7134634/Cluster-Headache-Medication-Psychedelic-Use-Survey-2023 5 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 16, 2023 Share Posted July 16, 2023 I took the survey and am now strutting around all proudly and junk as a result. Please everyone take this survey thang. 5 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 16, 2023 Share Posted July 16, 2023 2 hours ago, Bejeeber said: Please everyone take this survey thang. Took it last week. Agree that we all should take it. A nudge is a nudge 5 Quote Link to comment Share on other sites More sharing options...
Alx Posted July 17, 2023 Share Posted July 17, 2023 Took it a few weeks ago. Do it! 3 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted July 17, 2023 Share Posted July 17, 2023 12 hours ago, Bejeeber said: I took the survey and am now strutting around all proudly and junk as a result. Please everyone take this survey thang. @Bejeeberthe strutting peacock 6 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted July 18, 2023 Share Posted July 18, 2023 Just completed survey, so if @Bejeebercan strut his thing so can I!!!!!!! 1 5 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 18, 2023 Share Posted July 18, 2023 4 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted July 18, 2023 Share Posted July 18, 2023 1 hour ago, Bejeeber said: I gather your the 1 on the right @Bejeeberas it's better looking 1 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted July 18, 2023 Share Posted July 18, 2023 Each of us could have been looking a lot better after that way overdone rager of a booze fueled 'Survey Complete Partayyyy'. The last thing I remember is repeatedly shouting "I'M A CLUSTER BUSTING MICK JAGGER, MOTHERF**KERS!!!" while vigorously strutting in the middle of the highway - that was probably around the time law enforcement got involved. 1 5 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 18, 2023 Share Posted July 18, 2023 1 hour ago, Bejeeber said: "I'M A CLUSTER BUSTING MICK JAGGER, MOTHERF**KERS!!!" 3 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted July 18, 2023 Share Posted July 18, 2023 33 minutes ago, BoscoPiko said: He's off his head !!!!!!! @BoscoPiko 4 Quote Link to comment Share on other sites More sharing options...
Rod H Posted July 18, 2023 Share Posted July 18, 2023 Finished 5 Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted July 25, 2023 Share Posted July 25, 2023 Bumping this up just as a reminder.... 3 Quote Link to comment Share on other sites More sharing options...
xBoss Posted July 26, 2023 Share Posted July 26, 2023 (edited) I got booted on the first page for not being diagnosed but self diagnosed and suffering from the same as anybody for 25 years is good enough! I did have a talk with a neuro that agreed with me and the funny thing is that nobody can give you a diagnosis without your words. Well, I have them. Edited July 26, 2023 by xBoss 2 Quote Link to comment Share on other sites More sharing options...
Nishant Kumar Posted July 30, 2023 Share Posted July 30, 2023 Hello Fellow ClusterHeads, I got diagnosed earlier this year after 4 years of symptoms. I also happen to be a software engineer and have been toiling with idea of an AI application that can help us identify different aspects of cluster headache onset and phase out to assist doctors. Im very early and not sure what I'd find, but Id like to get my hands on this data. Any pointers who can I talk to? Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 31, 2023 Share Posted July 31, 2023 4 hours ago, Nishant Kumar said: Any pointers who can I talk to? You don't really need to actually talk with anyone. All the data you could want is here on this one awsome sauce site! 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 31, 2023 Share Posted July 31, 2023 5 hours ago, Nishant Kumar said: Any pointers who can I talk to? There is a fellow, I think in Belgium or Holland, who developed an app for tracking a lot of data related to CH attacks, medications, etc. The name of it is on the tip of my brain, but it's not coming through to me. Trying to find it at the app store, I see there is an app called ClusterUck that might be similar. These folks might have a lot of data. There have also been some major studies of people with CH, most recently one from Larry Schor and others and before that, one by Todd Rozen, that have gathered and processed a whole lot of data; and there is the current one that you can see here: https://clusterbusters.org/forums/topic/13151-cluster-headache-medication-psychedelic-use-survey-2023/. 2 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted July 31, 2023 Share Posted July 31, 2023 10 hours ago, CHfather said: The name of it is on the tip of my brain Was it the register your journey one? 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 31, 2023 Share Posted July 31, 2023 6 minutes ago, BoscoPiko said: Was it the register your journey one? YES!!! Nice! Later came to be called Nobism. But from looking around here (https://clusterbusters.org/forums/search/?q=nobism&quick=1) and on FB (https://www.facebook.com/search/top?q=nobism), it seems to have ended. 2 Quote Link to comment Share on other sites More sharing options...
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