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registrateyourjourney last won the day on April 4 2017

registrateyourjourney had the most liked content!

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About registrateyourjourney

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    Trying to help myself by helping others

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  1. I now have 26 people in one group, most have clusterheadaches, others are an medical data scientist, a PhD, a neurologist, 2 mathematics. (they can analyse to, but look at data different than a medical person, so see other things) We believe that only looking at patients in combination with medicine, is not enough. So we don't ask for nothing more than that you collect your story in data and work together with fellow patients. Talking is nice, data talks better
  2. If Shiatzu Heated Neck massage helps for more people, I'm sure others in our group would like to try. Difference is that all we do we convert into data. In our point of view, if symptoms registrations go down, the patient could be doing something that has a positive effect. We can all copy that, collect the data about it and compare. If more patients get the same results, it could say something about the effectiveness of the treatment. If you see it with most patient, you could speak about a trend. These trends can be used to get alternative treatments accepted. Good t
  3. Join the facebook group "Cluster Busters - Patient driven research" We'll start our own research to find the best treatments
  4. Its a shame that there is so little respons. I'm sorry to complain. But we all complain. Complain that not enough research is done. Complain that we have so much pain. We complain complain and complain. Lets STOP And work together. What do we have to loose?
  5. I also hope the ClusterBuster management will join in, We have to work actively together, all. I made a free tool that we can use in our- and fellow cluster Headache patients benefit.
  6. Why not do our own research, collect data, analyze it and find our own trends about best treatments. I've setup a "Cluster Headache - Patient Driven Research" group on Facebook and I've build an simple app to keep track of any attack and any treatment we do. It doesn't matter if you use medicines, vitamins, Oxygen or Magic Mushrooms. https://www.facebook.com/groups/471529509915015/ My idea is this: If 2 Patients with data about their disease progression would share this with each other, together they would know more. If a 100.000 patients have their data and share it tog
  7. It seems I can't add images. Its very small but its doesn't seem to work. So a dropbox link: https://www.dropbox.com/s/ssjo8pz80ymf8oe/Foto 12-12-17 21 38 30.png?dl=0 Hope it works
  8. This is how my personal attacks go. Been pain free for a year and it started in december again after a bad cold. This way I hope I can give insight in everybody individual journey. I hope you like it. If there are any questions about any subject, feel free to ask
  9. Hi, everybody, I'm a Dutch cluster headache Patient on a mission so see if we can do our own research about our cluster Headaches and I hope to get an American group joined as well. Being a Patient, makes that we can't do any scientific research, I'm fully aware off that. Problem with scientific research is that it doesn't move into our direction because our voices are not strong enough and our experiences have not enough value. But I think we already have some treatments that could have potential. The most known are the Vitamin D regimen of Batch and the use of Magic Mushrooms,
  10. Hi nicolas, Thanks for the "Like" 

  11. WOW. Nice. I do have some MS patients using my app to register their symptoms and it would be nice to see if they use Vit D in hight quantity. I'll ask
  12. Hi. Thanks Archimedes. I'm on 45 signups right now but I need 250 at least. So anybody more that want to join? And if anybody has questions, please let me know. Also about data security, because I know most people have questions about that. @MoxieGirl. I've looked if I could change it but didn't see the option
  13. Hi everybody, Finally, after 3 years talking about it and building an app in the last year to see if my idea worked and if my fellow patients could use it, I'm finally to the last stage now and I've called it: nobism A platform to connect patients, specialists and research using real time data collected by us patients. You can find my project on https://nobism.com and I hope you will all JOIN my project so we can start building it as well. The idea is simple. Lets work together as patients collecting REAL TIME data and share it with specialists, research or each other. We a
  14. Thats why we need to register our attacks, medicine use, vitamin or mineral intake and all we do to feel better so we get data showing things like this could be nonsense. Now we can only use our experiences trying to tell the world something is nonsense or working!!! Lets collect data together, and together with migraines and tension headaches and Multiple sclerosis or diabetics. Lets look at out health in a one big picture instead of putting it all in boxes.
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