Status Updates posted by registrateyourjourney
My name is Rogier Koning and I hope to be able to contribute finding a cure for our cluster headaches. In my idea we already have many solutions, but they don't always seem to work.
By keeping track of our attacks (symptoms), medicine use and all we do to feel better like the use of MM, Vit D, LSD or other things, we could maybe see why it works for one but not for others.
So I made an app (tool) to register our attacks, medicine use and all we think is relevant, just by clicking a button. This way we collect very detailed time based data.
All data gets displayed on a timeline for better understanding of our attacks and what we do to feel better.
Now I'm starting to setup a platform to connect the patients and share their data hoping we can find patterns in our attacks and see what people do different to feel better. In a later stage I would like to open the platform to specialists and research to use our detailed data to look for answers.
This is a patient-driven initiative, like clusterbusters. I do hope we could join forces because I think it should be a waste to work separately meaning probably that finding a good cure will take more time.
So I do hope the Clusterbusters will respond to my ideas, because until now it seems like I'm unwanted and ignored, or at least this is how I feel right now.
I know that the wonderful people of ClusterBusters already brought us a lot of good and that they've done a lot of work setting up and maintaining ClusterBusters.org and I do not need any credits, I just want to get rid of my attacks for good!!